Journal History
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Monday, September 15, 2003 10:08 AM CDT
Good Monday morning. Another week is upon us...here we go again.
I am not looking forward to the time change already. I love the longer days. It is my favorite time of year. I know that the end of long days means the weather changes for so many, and right now, those who are watching Hurricane Isabel off the coast, are praying that hurricane season would leave us yesterday!
I want to share with you something I found on the floor in my house the other day. I was picking up the family room after Christina spent the afternoon coloring and drawing and such. I picked up a little red spiral notebook. For some reason I decided to look in it. Maybe to decide if it was filled with scribbled pages and really meritted being crammed back into its spot needing to be picked up later. Anyway, I opened it up. The very first page held a treasure for me--just waiting for me to find. It was a journal entry from Robert C. from August 28, 1999! Can you imagine that. From 4 years ago...
I found this page only a few days after August 28--in early September. The journal entry was "How to measure a Puddle." I cried just reading the title. It had been raining and a bit gloomy for the several days...it had been raining on the 28th. Here is what Robert wrote 4 yrs ago in his journal when he was but 8 yrs old.
"You can measure puddles with glue or marker. You also can use a name taks or pencil. So you can measure a puddle. Also you can measure eney(any) thing with eney(any) thing. If you won't I can help you do it if you won't."
I read this over and over...as if I had found some treasure on an archeoligical dig--like I found the Dead Sea Scrolls or something. I kept reading it-it was like Robert was speaking to me. My friend said that he was, she said he sent that to you...she was right. I kept reading over and over his words--"you can measure any thing with any thing..." "if you won't I can help you do it if you won't." I read this and thought of my life-of life in general.
I thought of the things we use to measure our life. I thought of how the world is measuring my life, how they feel that they even have any right to do so. Yet, we all know, right or wrong, our very lives are measured by those around us. Now for me, I feel that my life is measured by a cloud of witnesses--knowing that my Lord measures it as well. I thought of what Robert wrote. He may have been writing about puddles way back when, but when these words came to me 4 yrs later, after his death, they spoke so much more to me than of puddles. I could almost feel that he was saying, "Mom life is not measured as you think it is. I know I am here..."it was like he said, Mom I can help you, help to motivate you...the way he wrote, 'if you won't I can help you do it if you won't...' What could the "won't" be that I am supposed to do that he could help me do if I won't...that could be so many things.
Since Robert's passing I have begun the practice of making sure that what is in my heart gets said out loud. Even if it costs me dearly. I have nothing to lose. I was telling a dear friend yesterday something I have said to them many times..."if I die today, I want you to know that I have left this place saying what needed to be said." I thought of this as I ran this morning. I realized that I never said all that I wanted to say to Robert. I realize that will always be the case when someone we love leaves us...but, in Robert's case, we never spoke as though he would not be here. He was a child fighting to live...I could not say things to him that would have caused him to think of himself in terms of not being here always. But, as an adult I know that I must find a way to impart that which is in my heart to those around me.
Robert taught me that the part that I won't do may be found in my very words that I speak. Maybe I won't write that book. Maybe my pride won't let me speak the words I'm sorry when needed, or the words I love you when felt...maybe the won't in me will come in the form of truly living life. I will never have the opportunity to tell my son how he gave me back my life in the example of his life. I will never again be able to tell him how very deeply and profoundly he changed who I am by giving me the gift of understanding the word "Mom".
I know that as he looks down upon me, he being able to see how life is truly measured...how puddles of our life are measured...he sees my heart. I thought on this as well this morning. How in my life now, I do not measure my life as I once did. I do not care how the world measures my life any longer. I understand that everyone measures any thing with any thing...therefore, the things that come my way that I must do, and the words that I have in my heart that must be spoken will be said and done...even if it is something as simple as getting out of bed in the morning to awaken my children with a smile and love and to tell them that I love them...even if that is all it ever is--the world may not see much measurement in such a small gesture, but I am certain that a boy watching down from heaven alongside a Heavenly Father who sees all--I am sure that from their vantage point, it is enough. It is worthy of being measured and that is enough for me.
Peace to you all my friends...Peace, hope, love, faith--to you that is what I say--may you find these things and measure them in your hearts and do that which is in you to do. That is all we can do.
Kathy
Friday, September 12, 2003 7:25 PM CDT
Good evening friends. What a week, huh? It is already mid-September.
We had a quiet Friday around here. We seem to be in a groove on Fridays. Jessica usually spends some time out at the local area outdoor mall with friends. I usually hang out with the little ones and sometimes with their friends. We love walking around in the evening at our outdoor mall area, it is always full of life and people enjoying life. I was just remembering the complete and utter angst I felt as the sun would rise on Fridays. I can remember wondering if that awful feeling would ever leave me. It seems to have left. The sunsets are not so dreary either these days. That is good. It scares me to think of that feeling of such anxiety, I know there will be times that it sweeps back over me, but for now, all is well.
This morning I went over to our local chapter of the Leukemia Society office. I have never been there. It was strange when I realized that. I picked up the information for the Team Robert that will be walking in his memory on next Friday night-Sept. 19th. It will happen two days after the 10 month mark of his passing. I visited with one of the ladies who knew Robert and is on the staff there. We have talked before. I asked her to please put me back on the mailing list, and activate me as far as being available for speaking engagements and such. She came by and got a copy of the infamous photo of Robert that appears at the top of this page. They will be enlarging it to almost life-size and it will be on display that evening.
We talked at length about how this disease is not as easy to treat as so many are "deceived" into thinking...we talked about how these children and people afflicted are not statistics--they are people. It was a nice time to be there. They had left alone and said that is their practice after a loss. They let the families come back to them if they feel led. I have been wanting to re-activate my time with them for a while now. It is the right time. I told her that Robert never had been in their office...he was too busy living. She knew that. She understood, and we agreed that is the way it should be--a patient should be able to have as much of their life back as possible while undergoing treatment. Robert barely paused while under treatment. She reminded me how he "never quit" she said she remembered reading my account of his passing in my journal, and how she knew he never quit living...just passed over to heaven to continue on.
So, all in all, I am very pleased to be able to be moving forward with this. The children are excited? for lack of a better word about the walk. They want to bear their brother's name with pride and help raise money for the Society and the families. I do not know how many will be joining us specifically, but, I am sure however many we are, we will SHINE for our boy-Robert!
Please if you are interested in registering, it is now officially on the link for the "Light the Night" site:
www.lightthenight.org
Have a lovely weekend. Matthew has his first soccer game in the morning! He has already started doing handstands in the field when he is bored! This should be interesting...
Peace my friends,
Kathy
www.lightthenight.org
Friday, September 12, 2003 12:35 AM CDT
Good day friends. Faithful Friday friends...
Sorry about not updating this morning. We had a power outage at about 5:30 am; so it set us back all morning. I will be back later today after I pick up all the kids from school.
I want to post information about "TEAM ROBERT" for the Leukemia Lymphoma Light the Night Walk...we are an official team. You can go to their website and register under that name!
Be back later...Peace. Kathy
Thursday, September 11, 2003 9:36 AM CDT
Good day friends. Here we are--such a day to reflect and remember.
Sept. 11th has become one of those days in our lives that we all know where we were when it all happened. I can remember as a child my mother telling me about the assasination of President Kennedy. How she remembered exactly where she was and what she was doing. She used to tell me how everyone remembered where they were at that moment. Now, this generation, us, our children will always remember this.
That day the fear and strange sense that our world had been shattered and if our world was going to crumble was the strangest of feelings. I can remember thinking "where are my children?" I was mapping out in my mind where they were and how long and how I would get to each of them to get them to safety if I must. Jessica's school is located on a road that has one way in and one way out. It backs up to a lake. Quite frankly if there ever was I crisis it would be easier to get to her by a helicopter or a boat from the lake than by car. This has freaked me out on more than one occasion. So...we all remember, and must never forget.
Cancer has changed my life, my world, my reality forever--9/11 has changed all our lives, our worlds, our reality forever.
I have been thinking of the quote I have at the top of the page much these days..."Heroism feels and never reasons and therefore is always right." Wow--that is exactly what all those people did that day when they became heroes. They ran in fueld by pure adrenaline and their guts...they did not speculate and contemplate. They acted bravely, swiftly and with a courage ,I daresay, as a soldier who has mentally prepared for battle exhibits in battle.
Heroism, courage, bravery, valor--all words that have taken on new meaning for each of us.
May God continue to protect us, our country and our families. May He choose to stand guard over us preparing us and protecting us from the evils of this world. May we continue to support and honor those whose very lives are at stake to preserve our way of life...
God bless you all--peace to you all.
Kathy
Wednesday, September 10, 2003 9:03 AM CDT
Hello friends.
Wow, I just looked at the date. Just remembering two years ago and the time of the year and all that was going on and the reality that we have come to know of that time...all of that, causes me to pause. Pause and watch the cursor on my computer blink away, speechless...life is fragile--life is fleeting--none of us know when the end of our days will come. We have all been "sobered up", "rudely awakened", "slapped in the face" -have we not?
I must admit, I have not thought much of what I will do to remember that Sept. 11th. I forget the days and dates some weeks. That is what happens when you are just plugging along trying to get through...things can be a bit foggy. I pride myself in being someone that has a sharp mind, and one that is known for always being on her toes, but, a fog is there that cannot be explained, it is grief. Grief plain and simple. I imagine those who were right in the midst of that tragedy are scarred deeply. I imagine that in some ways they cannot believe that their lives have gone on, and that they are still standing and breathing. That day literally took the breath out of all of us...even us so far away so far removed.
For me, that day defined a day in my own life when I really began to appreciate, admire, and respect in a new way our country, our service personnel, firefighters, police, and good old fashioned Americanism.
I am certain on this anniversary we will all be brought to a pause...
Take good care.
Peace, Kathy
Tuesday, September 9, 2003 7:34 AM CDT
Good day friends. Well, I managed to get them ALL out of the house--with only a bit of moaning and groaning. Who knew my years at college studying Psychology would be for the sole purpose of raising kids! Who am I kidding, like I remember anything I learned in college, and like any form of psychological analysis is really gonna help anyway! More like psychological manipulation, coupled with prayer and a bit of good old fashioned luck and "BAM"-you have a crazed red-headed Italian Mom who gets her kids to school!
Funny isn't it, for those of you with multiple kids in a family, how they seem to take turns...I guess that is better than ganging up on you all at once. I think I am going to create a chart--Mondays are Jessica's days; Tuesdays are Matthew's; No whining on Wednesday; Thursday is Christina's day; we all know FRIDAY is MINE! The dogs, well, they can try to whine any day, but I can ignore them. Do you think that would help? The chart thing I mean...you know how good children are at doing exactly what we expect of them, right? So, that will be my new mission in life--buy a piece of poster; design an intricate chart with all the specifics; and post it publicly for everyone to see. First I will send out a memo giving them notice and fair warning about my new system...then I will scream and yell and threaten everyone to get it implemented. Finally, I will rip it off the wall, and maybe just maybe, on a cold night turn it into a bonfire! Did I say cold night? I forget I live where it never gets cold, okay, I will use it to light the grill! :) Aahhh, the best laid plans of men-or is it the path of good intentions leads us where...?
Oh well, at least my degree looks good on paper--to someone. Hopefully a prospective employer will be impressed with something I finished 14 years ago! I think I will put my kids down as references. Scare me!
I do hope that somewhere in your little corner of the world, the sun is shining. Did any of you see that moon? If only I knew what it would turn into...this morning very early I caught a glimpse of it, it was amazing. Praise be to God for His handiwork.
Have a lovely day.
Peace, Kathy
Monday, September 8, 2003 5:56 AM CDT
Good day friends. Monday, Monday...aaahhhh--back to school right? Yeah, right? Here's hoping the Charltons make it to school this week! Their waning fast! AAAAAGGGGHHH!
Anxiety and such is trying to get the better of Jess-again! Christina awoke with a mysterious belly ache-could it be the HOURS of homework that her teacher is heaping upon the 3rd graders, or maybe the 3 second rule for getting your book out of your backpack and back to your seat! The kid is under some serious pressure. And finally, do you think taking recess away from 3rd graders for an entire month is gonna make them not talk during lunch! Why can't 3rd graders talk at lunch anyway--where would we be in life if we could not talk during lunch! Sorry if this annoys the folks helping out during lunch, but remember what you do on your lunch break! GAB, no doubt!
The good news is that I am actually beginning to like Prince. Yes, you read it here first folks. I think we will survive. He is one smart dog. I am playing on this. He finally is sleeping through the night, and as long as I do not let him roam in the house too long, there are not puddles everywhere. When he is in the yard, and starts barking to come in, he actually stops barking when I holler out, "Hush!" Too funny. So, don't get too excited, but it does look like he is a keeper! As if I would get rid of Jess's "baby"...I think not.
So, we are attempting life again this week. I stood in my kitchen the other day, looking out in the yard...I thought of my sweet Robert. I thought of how we spend our lives making memories, and trying to make memories. I realized that the memories of my lifetime of Robert would only ever be those 11yrs. Two of which were spent battling cancer. It amazed me that a kid like Robert could have made enough memories in his short life to last a lifetime for his mother. Believe me, they will never be enough--but it has to be, there are no more memories to be made with him. Only for him, and in honor of him...and because of him.
So, as we Charltons attempt life this week, we will be making memories together. Here's hoping some of them will be the kind that make us pause and smile at life.
Peace to you all. Thanks for coming by.
Kathy
NOTE: I am trying to form "Team Robert" to walk in the LIGHT the NIGHT Walk here in West Palm on Sept. 19th...I knew I wold be walking, but decided we needed a group to walk in Robert's honor! More details later, here's hoping it is not too late to form an "official" team!
Friday, September 5, 2003 9:04 AM CDT
Good Friday friends.
Let me start by saying to you all, "Thank You!" It warmed my heart to read so many sign-ins in the guestbook. It warmed my heart to think that you all took the time to show us that the 18 inches between your head and heart connect on our behalf. Your encouragement means much to us all.
As I continue with my thoughts on the vast distance between our hearts and minds yesterday, a dear friend struggled in this world with life. It is not easy to see someone you love struggling along, and to know that it is their struggle and their's alone. Some things in life cannot be fixed with encouragement, and love and such...some things just have to unfold for themselves and unravel if necessary. Any of you who have ever loved anyone know this is how it is when you let yourself open up to someone...anyone.
How many times in life has someone had to sit idly by and watch us miss out on something because we are struggling along. This happens so much in parenting. As a parent we know that we must let our children go and find their way to be able to grow. Then as friends, we must do the same at times. No matter if we see what is coming, or the way out, sometimes we must let the one we love find their own way.
I am a fixer. You know the type, the type that wants to fix everything, everyone...a peacemaker of sorts. It is my way. I am learning that it may be my way, but it does not work for everyone else. I am learning patience, and how to have a steadfast love that does not change in circumstance. I am learning this anew in all of my relationships. In my relationships with my children, with my family, with my friends. I am learning for the first time in many years how to sit idly by and be a supporter and not a changer...to let life have its way and hopefully somehow those I love will know that no matter what I am there--right beside them.
Think of our Lord. Think of how so many times in our lives He seems silent. Yet, if we pause long enough we know that He is never far from us, He is right there with us, in us...loving us. Even in his discipline, He does not whip us into shape. I think of how patient He is with me and I try to pause and live in this manner. It is not easy. Especially when you are a fixer!
I stepped out into my garage yesterday--no small feat if you ever saw my garage--I cleaned it last Saturday. There in the back of the garage stood Robert's bike. He loved that bike. I could almost see him sitting on it, hunched over pedaling along. He started riding a two-wheeler when he was only 3. Then in the laundry I came across his Star Wars blanket...He is everywhere--and I miss him. We all do. The kids ride his bike, the chain is off right now...I need the Boca Grande Bike Man to pay me a visit! At least with the bike in the garage I do not have to face it lying in the neighbors yard like he used to leave it when I come around the corner to my house...the kids have done this a few times and it freaks me out!
Well, we did it, made it through another week. I think I learned a few things this week. Last night I read something about expecting something "new" to be perfect...it said remember things take time. Also yesterday as I contemplated my life I came up with this..."I have been called beautiful, I have felt beautiful, I have seen beauty...what more could a girl want from life!"
Have a beautiful weekend you beautiful people...Peace,
Kathy
Thursday, September 4, 2003 5:23 AM CDT
Good day friends. Another week is almost over for us. I still cannot believe it is September. We are already talking about Thanksgiving around our house.
The children have been having a good week. Well, except maybe Jess. She has not been feeling well at all. She is keeping up with her school work though, and hopefully will not have much to make up as she missed school. Matthew is doing well. He went off to school yesterday without narry a tear, and actually said it was a good day to me at the end of it...Christina, has been hit by the homework monster! I have never seen so much homework in my life. She is overwhelmed to say the least. We are learning to adjust our routines around here to accommodate all of this.
I have been thinking alot about something my first Pastor used to say...the wonderful Rev. Bill Billingsley always talked about not missing heaven "by 18 inches." He would gesture between his heart and his head whenever he said this. I have been thinking about those 18 inches (give or take a few) that linger between our hearts and our minds alot lately.
A very dear friend of mine is one that seems to struggle in limbo on several issues in life. It seems to me that the struggle exists mainly because those 18 inches do not connect, or rather they are not allowed to connect. The struggles of this friend got me to thinking on how much in life gets missed because of those 18 inches. Pastor Billingsley always used them to remind us of heaven. That is where I begin my thoughts on this as well. How many of us miss heaven by not allowing our hearts and minds to connect. The mind that knows the facts and the heart and does not give the faith and love and trust to fuel the obvious.
Our minds seem to host the "reality" of life. Our heart seems to host the "fuel" for our life. For me, our minds know all the facts, figures, and knowledge. Our hearts house the love, faith, hope, motivation, and trust...how often in complex things in life do we lack the things our heart hosts to make it work. How often in life do we have all the "heart" but no "reality" to fuel it. It is confusing. Or is it? Maybe it is just that simple. We have all made many conscience choices in our lives. We all have made choices knowing that the "reality" and the "fuel" were there and that we did not let them connect.
I think of how many know the plan of salvation laid out before them, and choose to not let the two connect. Than I think of every day life stuff that gets missed and messed up because we do not let the two connect. Not only can heaven in the literal sense be missed, but heaven here on earth as we live our lives, can be missed as well.
"The heart has reasons that reason does not understand." Jacques Benigne Bossuet
"The heart has eyes that the brain knows nothing of." Dr. Charles Henry Parkhurst
"...examine my heart and my mind; for your love is ever before me, and I walk continually in your truth." Ps. 26:2
In my own life I would say the biggest battle of late is: getting the ideas that exist in my mind, of where I need to be going in my life, fueled by the motivation that is in my heart. It is like they do not connect at all. Strange how we can have such power isn't it? We truly do have free will, and the ability to live our lives as we see fit. Even if we live within the boundaries and parameters set up around us, within it all we have our free will. We can know what we know, have it all laid out before us, and still miss it! Those darn 18 inches! Some days that might as well be the Grand Canyon.
I see it in my own life. I can see it in other's lives. Have you ever watched someone knowing that they know exactly what to do, and you know that they will not choose to do it. It could be something that would change their lives forever, or just the moment.
I do not know about you all, but my mind could go nuts just thinking of all the "reality" that exists in our minds and the amazing things that could happen with the "fuel" to get them out of our minds. I also pray that the peace that we can know by letting our minds remind us of all the good that is within us, all the love, the hope, the faith, the trust...the motivation. Let those 18 inches encourage us to live within those things. Let those blessings of our lives become a reality for us. Let the space between our minds and our hearts be bridged to bring peace within our own lives.
Whatever that peace may be...
Have a great day. It is wonderful of you to come by here. I also found myself thinking of those who come here and do not sign in...I wonder how many of those there are... Maybe just maybe, you could sign in, and not leave your name...that way we would at least know you were here.
Take good care, All is well. We are still breathing.
Peace, Kathy
Tuesday, September 2, 2003 6:03 AM CDT
Good day friends. I almost said Good Monday morning! Didn't last night just feel of a Sunday evening? Here's trusting that your weekend and extra day off was relaxing.
I have wanted to share with you all the verse from a song I listen to frequently. I have been listening to this song for many years. Over the years it has taken on different meanings to me, usually the obvious one--it is by the Christian Artist, Michael W. Smith-"Smitty" to his close friends, like the infamous Steven from Nebraska/St. Jude...Here are the lyrics:
Missing Person/from "Live the Life"
"Another question in me. One for the powers that be
It's got me thrown and so I put on my poker face
And try to figure it out. This undeniable doubt
A common occurrence. Feeling so out of place
Guarded and cynical now, can't help but wondering how
My heart evolved into a rock beating inside of me
So I reel such a stoic ordeal where's that feeling that I don't feel?
There was a boy who had the faith to move a mountain
And like a child he would believe without a reason
Without a trace, he disappeared into the void and
I've been searchin' for that missing person
Under a lavender moon, so many thoughts consume me.
Who dimmed that glowing light that once burned so bright in me?
Is this a radical phase a problematical age
That keeps me running from all that I used to be?
Is there a way to return, is there a way to unlearn,
That carnal knowledge that's chipping away at my soul?
I've been gone too long will I ever find my way home?
There was a boy who had the faith to move a mountain
And like a child he would believe without a reason
Without a trace, he disappeared into the void and
I've been searchin' for that missing person
He used to want to try to walk the strait and narrow
He had a fire and he could feel it in the marrow
It's been a long time and I haven't seen him lately but
I've been searchin' for that missing person."
I have been listening to this song of late as I run on the treadmill. It brings my Robert to the forefront of my mind. I hear that verse speaking of the "boy who had the faith to move a mountain...and like a child would believe without a reason..." And then the part that says how he disappeared into the void and I've been searching. Well, let me start by saying I do not believe my Robert has disappeared into a void, and I am not searching for him. I know exactly where he is, in heaven with our Lord. I used to hear these verses and this song would resonnate in my ear about parts of a lost faith that I once had as a youth.
You know the kind of faith that one first adopts when they are first "saved". I was a teenager at that point in my life. I had the faith that could move a mountain. I personally never saw any mountains move, but I trusted just the same. Then over the course of life as it ebbed and flowed, my faith changed. I have returned to my faith many times. Each time finding my way back to a loving Savior whom I trust and adore.
As I listen to this music now, while running along, I think of Robert. I see him there in my mind's eye, every pill he swallowed, every chemo drugged pumped into his body, all the radiation, every ounce of medication he took was to move a mountain. I think of how he must have felt every time he vomitted, every time he tried to walk the halls and eat a bite of food...all of that was the faith of a boy who believed "without a reason" that his mountain would be moved. Now granted, Robert had a reason to take the medical advice given him; he had a reason to fight as he did--he wanted to live. But, he never had a reason as to why his body betrayed him as it did and cancer overtook him. He just had the faith that it would be gone, he had the faith that everything he was doing was so that he could live another day and feel the sunshine on his face.
I think of how in all of it, for me, Robert's light never dimmed. His faith never wavered. As I run along and think of what a wimp I am, I think of this boy who did laps in the hallway to keep from getting pnuemonia. I could even feel the faith in his last breath. The faith that knew he was going home. So peaceful, so at ease...he chose the greatest of victories--I believe in the end Robert knew his time here was spent.
I also believe that though the motivation for Robert's faith was to be healed, that now he looks down from heaven and would say to us all, I would do it all again. I believe that now he looks down upon us all, me in particular, and would say..."Mom, if my faith to move the mountain did not make my cancer go away, but has encouraged you to live on in faith, than I would do it all again!" For me these days my life is not about the "what if's" or the "if only's"--it is about the faith to move a mountain. Finding that missing person within me that believes and hopes beyond all hope that those fighting and suffering will see a brighter day. I have it, it is in me...it is like the laughter in my soul that my Robert left there. I can feel it.
He looks down on us you know. They all do. They have become our cloud of witnesses. They love us. They know all about a faith that moves mountains--does not quit--does not worry about the rules. The faith of a child to believe that the poisoning of his body to beat his disease would work. That is some faith. My mountains may come in the form of laundry, and messes. My mountains may not be the same as yours...mine may be to get out of bed everyday and fix the kids breakfast.
Remember the cloud of witnesses, and do not be daunted by them, but encouraged. For they know the truth about the faith that moves mountains. They know it is the faith that gets us through each and every day. Those that have gone on ahead, they love us and are cheering us on. Be it in the race for our life as it is with so many...or the race to beat a body into submission on a treadmill...they cheer us.
Love, faith, hope, joy...it is all there. I believe it. I trust it. I live it.
Peace to you my friends. Kathy
Friday, August 29, 2003 8:30 AM CDT
Good day friends. Can you believe another week has gone by...my kids are thrilled to have a long weekend, okay so am I!
Last night I went to Jessica's school for Open House. I had forgotten about it. I called home to tell her I was on my way and she asked me if I was going...she sounded so disappointed to think that I would not go. I knew I could not disappoint her. We missed last year, because we were in Memphis. I am so glad that I went!
Being in her school literally got me charged up. Jessica attends a school dedicated to the Arts. It is a special magnet school that the kids must audition to get in to. You may remember Robert was slated to go there as well. He had auditioned just a couple of weeks before he relapsed and was so thrilled when he learned he was accepted. He was totally motivated to keep up his studies and such to be able to go into that school. He talked much about it. He and Jess used to joke about how she would make sure he was not a nerd and would be a cool 6th grader as to not shame his older sister!
It was so strange sitting there last night. Strange to hear the parents talk about all their kids, the parents with more than one child in the school at once. How their child struggled like crazy last year...I thought to myself, "boy would these parents quit whining if they knew what I was doing this time last year!" I did not share. It was heavy on my heart that Jess would be leaving that place this year, and that Robert would not be following right behind her. There is such a huge and endless gap in the family that would have been Robert's life--endless yes.
So I sat there, excited once again about what an amazing place that school is. I met Jessica's Art teachers. I hope that Jess is able to take her Art by the reins and really go with her instincts and her passion. I believe it is important to find a passion in life, be it Math, Art, a language, writing...something. Her Art classes are the best in our country. They have access to things that no other school in our nation has access to...they talked about having an exhibit at one of the major galleries in our area, and one in Chicago! That would be awesome. I hope that if Jess has a bug to do this, she finds it within herself to do it!
I decided to adopt-a-class in the Art Dept. It is not cheap to adopt-a-class...I felt led to do it in Robert's honor. I sat there and realized that boy would have loved that place, and I wanted to do something in his honor in that place. I plan to do many things in his honor...send a kid to camp, sponsor a class, anything that he would have done. So, I will find a way. Hence, my need for a job! HA! Got to love a woman who spends money she does not have...I know, typical woman!
I also realized my oldest child will be going to high school next year! OUCH! Talk about competitive. College, college, college...did I hear someone say, SPONSOR!, SCHOLARSHIP! It all takes lots of effort and work from not only the student, but good old MOM! Let's hope we are both up to the challenge.
Have a lovely weekend, and take good care.
Peace friends. All is well.
Kathy
Thursday, August 28, 2003 7:58 AM CDT
Good day friends...well, I was making a feeble attempt at cutting and pasting some of Robert's quilt from the quilts of love page...not having much luck! Sorry.
I went there the other day. To the page that is. I have not visited his quilt in some time. It is beautiful. Have you seen it? Here is the link:
www.quiltsoflove.com
What a labor of love these ladies have done. They must spend hours making these quilts for the kids. They are beautiful. The poems touched my heart the most. The woman who wrote them must have spent much time reading about Robert because she included so much personal information in his poems...Thank you ladies. If you have not seen it, please visit it.
It is so strange to see your child's name listed under the Memorial section. It will never truly hit home that Robert's life ended on November 17, 2002. How can that be? It scares me to realize that each of our last day is etched somewhere waiting for us to get there...I said to a friend last night you never dream of growing up and having a child and knowing that child will die so young...or before you. I explained to her it is not at all like losing a great love of your life. It is forever a whole in your life that even time cannot erase, for as time passes it brings with it so many new realities. It is the most perplexing and daunting idea ever known to me or probably anyone in their lifetime...there will never be an answer. I have learned to live within that realm of complete unanswered questions, uncertainty and sadness.
I realized that for me, I have no time to hate, to fester, to blame...believe me, children are an amazing motivating factor. There is so much to contemplate in life, and sometimes it is better to choose not to. Can you imagine that? I just said that sometimes it is better to choose to not contemplate life! It is better to live it.
Remember, never turn away from a kiss or a handshake. Never do not return a good-bye, even if only a wave. Acknowledgement, in any form, from another human being is a precious thing-we need to be acknowledged, and those giving the acknowledgement, need it to be received.
Take good care, have a lovely day, thank you for coming to this page...
CONSIDER YOURSELF ACKNOWLEDGED!
Peace to you, Kathy
Wednesday, August 27, 2003 10:44 AM CDT
Good day friends. Wow, where do the mornings go? It is a blur around here...life is a blur that is!
I am having the toughest time getting out of bed in the mornings lately. It finally dawned on me why I think I am dragging so much lately...the dogs! I think I am going to start calling them "Frick and Frack!" or rather, "Double Trouble!" They will be the undoing of me that is for sure. It is funny, I look at my life--you know my life...the three kids, the house, the bills, the cars (we won't even go there!), the job-lack thereof, and all that sort of nonsense...and the thing that is making me most crazy is the DOG! How can it be that I have come to the point in my life that is full of responsibility, happiness, trials and tribulations, pain, sorrow, laughter--and one little dog can be the single catalyst in pushing me right over the edge! Did I hear a big sigh--you know a collective "Tell me about it!" It is like I am a prisoner in my own house...I feel guilty leaving them out all day; they bark at night keeping me up, whether in or out...I hate to think of them in the rain--I have spent more money than I ever thought possible from my budget, and for what? To have more pee to clean up!
Believe me, I am trying not to sound whiny. It is so fascinating to me that of all the things in my life the dogs are the most annoying. Something is wrong with this picture! It is like they line up for their turn with Mom...and they are not getting it, I have drawn the line in the sand. By the time I get the kids off to school, and all that encompasses, I am not interesting in pets...sorry.
Speaking of getting the kids off to school--have I bragged on Jess and Christina this week? Jessica has not felt well for a couple of days-maybe the dogs are subconsciously driving her crazy as well. Anyway, even not feeling well, she is not missing school, and keeping up. We changed her into the Advanced Math class, and she is doing amazing! Christina, is the type of child that "rules the school." This gal just keeps chugging along, she is the middle child after all. My little guy, well, he is struggling. Poor softie. Yesterday, he stayed home with "Mom!" As he put it to his Dad and the principal this morning, "I just can't bear to wait 6 hours to see my Mom!" Can you imagine when this boy falls in love someday--whew!
Anyhow, Matthew is adjusting to school and life and is struggling. It is all too overwhelming for him. He actually had hives on his face from crying and the nervousness of going to school. It did not help having a boy say he wanted to "kill everyone" on the second day of school! Needless to say, we are on top of things, and all will work hard to help him find his way. I told the Principal that I realized that my son may not be the one causing trouble and getting attention that way, however, he is not one that can be sacrificed because he looks alright. He needs our help just as much as the one causing trouble.
So...I thought to myself, "and I think I can get a job!" other than the one I have! We all know that Mom's are totally "underpaid!" in real dollars and cents...I do know that God will find a way, make a way, and get us ALL to His way for our lives.
At the end of everyday, every moment, this is where I go...this is the solace I find--peace that passes understanding that can only come from the love of a Savior who came in human form to show us the way.
If only our Savior had a pet while he was here! That is no joke; actually, maybe that is my answer--He was too busy with the people in His life and knew that He probably could not appreciate a pet as He should, so He had none. Well, I have too many, and must learn to manage them as well. How do you get them to sleep IN the dog house instead of next to it so that I could feel a little less guilty?!
Things-everything, anything worth having-takes time. Children take time, patience, love--we need time, patience and love--healing takes time...
Hang in there--you are still breathing, right?
Peace, Kathy
Monday, August 25, 2003 7:34 AM CDT
Good Monday morning...whew, another week is upon us. Is it just me or are you all a bit stunned that it is almost Labor Day? That means it is almost September! Holy Cow!
First I want to thank all of you...your guestbook entries of late have touched my heart deeply. I must admit, I did not realize just how down I sounded on Friday...it was strange for me. Most of the time I try not to dwell so deeply on those thoughts and such; they are pretty much in my mind constantly. For some reason, I chose to share them with you all. Not to depress you, or even to get you to rally behind me...just to share, and show you a bit of how my mind works. Yet, you all came to my "rescue..." thank you. I even got a few phone calls. Funny isn't it, for someone who does not have a "job" those of you who call never seem to be able to catch me at home...unless it is the middle of the night--and you know who you are--don't get any ideas Krista!
Also, I am very glad that I took a moment before I began to type, and read the guestbook this morning...Tom, that was a beautiful verse from that song...who wrote it? and such...perfect if you ask me. Thank you! I tend to spend birthdays alone--not anymore, I changed that last year! So, though you were alone, I hope you celebrated and had a lovely day--Birthday Duck? Is that Disco Duck's cousin? Please take a moment and read the verse from the song he put there...funny, how those of us on Caringbridge do not have to be kings and such to know what real peace is ...
Matthew went off to school without a hitch. He started soccer on Saturday. That is already boosting his ego. He really needs a boost. I thought this morning of having a talk with him about "if that boy was in school..." sort of thing, but decided to just let it play itself out...seems that the boy launched an attack on the entire class and threatened the bunch of them collectively--Matthew was not the only one stunned by this outburst...so, hopefully if he is back, things will be better. I hate to say it, but Matthew is gonna have to perfect his right hook if he is gonna stay as sensitive and caring as he is considering his size, I am sure he will be egged on alot in his school life.
I am sorry to report, Jessica has not agreed to update the page to you all! She is way to busy being a teenager! Doing HOMEWORK--yes, you read it here first folks, and GOING TO SCHOOL!
You got to love a new beginning. Gotta love that we are all still breathing! Remember that!
Peace to you all--Kathy
Friday, August 22, 2003 8:09 AM CDT
Good day friends. It is Friday...I see it, and feel it. The kids are all in school, so that is a good sign, right? My little Matthew went off to school rather reluctantly I must admit. I needed to walk him to class to talk with the teacher about a little boy that told Matthew that he wanted him to die...and that sort of thing...needless to say, Matthew was very afraid to go to school today and see that kid.
It is daunting to see your child so afraid. To watch as your child must face life's challenges on his own. Of course as a parent our tendency is to combat all their battles for them. I have been thinking of my role in Robert's life alot since yesterday afternoon. I thought of him this morning as I watched a peer of his from 5th grade walking his little brother to class. I stood there for a moment and took in the sight of this dark-haired boy Robert's age. I watched him walk off. I took note of his size and stature. I took it all in as if it were a glimpse of what sweet Robert would be like today...of what he would be saying to his little brother when faced with a bully. I thought of how brave Robert was. How I am and will forever be changed because of his bravery. I long to impart this bravery on to Matthew. It breaks my heart to know that this little boy will not have a big brother to blaze a trail for him, Matthew seems to need a big brother so badly.
Yesterday I thought much of Robert. I sat and watched about 10 mins of an old episode of ER. Semi-big mistake. The potential for being sent into a tailspin from a show like that is great. I was feeling pretty worn out, and surfed the tv for a bit...the scene I caught was one where a doctor was training another young doctor. The one doctor informed the other that they were about to get their first dose of delivering bad news. They were about to tell a man he had a tumor and would probably die. I sat there, and listened. I turned it off when the patient began crying and saying "I'm gonna die..."
I went right back to the times in Robert's life that I was the messenger of his fate. It is puzzling to me how it was that I was the messenger for Robert's fate. I was the one who heard the news first and had to impart it to others. I thought of the very moments when my favorite doctor as St. Jude, Dr. Ed, sat with me telling me Robert's fate. How he sat there handing me a death sentence for my son. I remembered feeling so sorry for this doctor that had grown to love Robert and our family. I thought of how distant this doctor was. How he had a reputation for not remembering his patients were people and not just statistics. I remembered him asking me if I had a friend to call, as he knew Jeff was at home. I told him, no, there was no one to call to come be with me, I told him, he was my friend. I sat there and looked through the glass at Robert laughing at cartoons, trying to eat something. I thought of all the times he had asked "what if this doesn't work...", " what if it comes back..." Robert was well aware of his precarious situtaion. It was his body after all, he knew it well.
Robert was like a well-oiled machine. A kid who pushed the limits with his body. He had the makings of a great athlete. He knew his body, knew what it would mean if his disease came back. And at that moment in time, I knew I would be the one to tell him his body was losing its battle. I remembered realizing that it would be my job to tell the thousands of onlookers Robert's fate. I would be the one to tell Jeff. I remembered knowing that the world that knew us and watched would wage a war on the gates of heaven to beg for Robert's life. So many needed and were counting on Robert to live. I knew it all too well.
This was Saturday morning. By Saturday afternoon the world knew Robert's fate. We made the choice to not tell Robert his fate until Tuesday afternoon. I remember calling him into the bedroom at Target House. He lied on the bed next to me as I sat there with him. I remember delivering the news to him that his transplant was not working and that his cancer was back. He never once said, " I'm gonna die..." This is what amazes me now. Never once did it ever occur to Robert to give up. He let out a sigh, he knew what I was telling him. We had discussed this at length before...he knew I was delivering him a verdict that he could not avoid. He said he wanted to go home to fight. He insisted on fighting for his life one last time. We, as his parents, knew we must wage this war with him standing by his side.
I wonder if when we who have been blessed to live our lives to the fullest, will get to the end of our days having made half the impact that one 11 yr. old boy did in his lifetime.
I am tired and worn out. I am feeling a bit depressed and overwhelmed. My body aches and part of me wants to run and hide. I cannot even begin to imagine the pain Robert must have been in those last weeks. I cannot imagine the thoughts he had in his mind knowing his fate. He did not speak of it. He was fighting to live. Robert tried to enjoy the finer things of his life to the very end. Like his dog, his family, the fact that he could not get out of bed to use the bathroom was one thing, but he could hold his water bottle.
It is Friday. We are all still breathing. I will find a way to help my 6yr. old face a bully at school. I cannot give him a big brother ever again, but I can teach him about courage.
"But where life is more terrible than death, it is the truest valor to dare to live." Thomas Browne
Peace my friends...Kathy
Wednesday, August 20, 2003 7:20 AM CDT
Good day all. I wonder if any of you caught my footnote at the bottom of the page about Mimi Jane's birthday? It was yesterday. I sat here staring at the date at the top of the page, knowing I needed to remember it...and Jeff reminded me that it was his Mom's birthday...Again, Happy Birthday Mimi Jane! Please feel free to send her well-wishes on the guest page! I know she would love that...
Well, I survived another job interview. I did not get the job I interviewed for last week. Though they LOVED me! They asked me to consider a job at another location, but it is too far from home to seriously consider at this time. My interview yesterday was at my present place of employment the Kravis Center. As well as I felt it went, of course I thought of a few things I should have said later...and as the HR person pointed out to me, there was a tremendous response and they have a stack of resumes...so, who knows--I was grateful they at least interviewed me considering the "stack". We shall see. I have not given up the idea of waiting tables, that is one career I have not gotten paid for in my lifetime.
The kids are well. We are adjusting to staying on top of school work. Can you say, "crack that whip!" I think Jess doing a page would be a great idea. Hey, Jess-when you read this, know that you are officially invited to fill a page or two here...I am sure that your many fans would love to hear about Maine, and school--and "Zebism".
Have a lovely day.
Peace, Kathy
Tuesday, August 19, 2003 7:45 AM CDT
Good day friends. Tuesday, another week zipping by us.
I have been in the most thoughtful of moods lately. It is the kind of mood that seems to go with the season of the Fall. A woman I used to work with who was originally from the Carolina's explained to me once that she always was greatly affected by the change in the season. The autumn brings on the feelings that a winter is ahead. I am reluctant to face this winter...
I think for me it has much to do with the timing of the school year. My life has revolved around this for my entire life. Now as a Mom it continues to intertwine my days and life. It is my alarm clock in some ways.
Yesterday as I watched the children go on their way into the school, I noticed my little guy. I watched him slowly walk his way into school. I could feel his apprehension, see his brave little spirit. I thought that I must go to him, walk with him...I thought why didn't I brush my teeth! This morning I asked Matthew, "do you want Mom to walk you to class in the mornings?" As we stopped at the school, Jessica asked if he wanted her to walk him, he said "No, he wanted to walk alone." I watched him climb out of the car, kissed him first, Jessica and I said goodbye and my usual I love you...she told me good luck on my job interview--God I love that girl!--I pulled up and jumped out of my car. I knew I had to go to my Matthew. I caught him and hollered to him as he rounded the corner. He gave me that half grin and sort of cocked is head and waited for me. He said, I knew that you wanted to walk me to class. We walked along and he juggled his lunch box and papers. I knew he was re-adjusting his stuff so that he could hold my hand. We walked hand in hand...he let me kiss him goodbye and showed me his seat.
My boys, such softies! Robert always held my hand. He would almost parade me around school the days we went together. He loved to hear all the kids as they would say, hey that's Robert's Mom...Mrs. Charlton. He would positively beam with pride. My children have taught me how to be a better person, a great Mom and fulfilled a individual. The pride they have in those moments is the greatest encouragement of my life. Now my precious girls, they do not want to hold my hand, no public kisses...but my boys, they are a different story. Do you think this will stay with my Matthew as he grows like it did his brother? I wonder if he will be a man that holds the hand of the woman he loves with such pride. If he will walk with her through life proud and strong because he allowed himself to love. That is my prayer for him.
I have learned to walk with such a sense of pride. My children have taught me much about having pride in myself. The way they have staked their claim on me as their mother has etched out a new person in me...Robert perfected this. Each of them in their own way teaches me so much. Funny how we are the parents and can learn so much about parenting from our children. We set the boundaries and they show us how to challenge them, live within them and grow no matter what.
That is like life is it not. Life has set the boundaries. There are so many things in this life that dictate how we are to live. We must work, we must get along with others, we must pay our bills and our taxes and such...if we want to be productive individuals. When we bear children we must parent, love, and bring ourselves out of the places we want to hide so that we can influence and encourage our children. Much of this is common sense. It is simply life. Things get complicated, things can get ugly--unbearable. We all know that. I am learning to live in a new way. Within the boundaries that life is dictating, but, with a free spirit and the laughter from my very soul that Robert left within me.
It is a new day, is it not? I have another job interview. My children are still growing. I am still learning. I am happy. Whatever that means...don't even get me started on that one. I think for me the best way to describe the state that I find myself most is content. Content--means satisfied with the way things are. Yes, that is me. I cannot change things, so I am choosing to be content. Satisfied with who I am.
"You traverse the world in search of happiness; which is within the reach of every man; a contented mind confers it all." Horace
"I have learned, in whatever state I am, therewith to be content." Hebrews 4:11
I hope that you are happy this day. Content everyday.
Peace, Kathy
WELL, KNOCK ME OVER WITH FEATHER...CAN YOU SAY DUH? YOU KNOW ME AND DATES...HAPPY BIRTHDAY TO MIMI JANE! CAN'T FORGET HER ON HER SPECIAL DAY! LOVE YOU...
Monday, August 18, 2003 5:34 AM CDT
Good day friends. A new week is upon us. I see it is the 18th of the month. Funny how I had no idea of the date, but my heart knew the time that it must be and that now explains the reason why it has been aching so much.
Nine months--the time a mother plans to carry a baby to be born, nine months since my precious son left.
That would explain why his images have been "haunting" me so much lately. I just said to my Mom last night how the Lord was so determined to have that child here on this earth when he did. I talked about his birth. I reminisced about his being born on his due date, and how the umbilical cord was wrapped so tight around his neck. How determined our Lord was to have that precious boy here knowing all along his fate, his time would only be for those amount of days.
I confessed to my Mom how I will never be free of the feeling that I could have done more for Robert. I told her how now in my life, I realize that at the end of everyday I could be doing more, doing things differently...I did not speak of these things as to beat myself up, or to bog myself down; I spoke in these terms to speak of how I am facing the reality of this life and its fleeting ways. How no matter what, life goes on. All of life.
Jessica, Christina, and Matthew are still growing. They are the joys of my life. A job, my house, my pets these are things that require my attention--however, they are not my joys. My friends, they have taken on a whole new meaning. They bring joy, and pain as well. Remember it is all designed that way when we choose to love.
I do not share with anyone the deep sorrow I live with in the loss of Robert. It is a great burden to bear. But I know that many know of that pain, I know I am not hiding anything from anyone. I try to keep it from my children. Matthew has been talking about Robert alot these days. He refers to him all the time when he hears a song, or sees something that his brother would have liked.
My Mom said something else to me the other night, she said to me, "Kathy, you are strong--you have to be--we all need you to be strong..." she went on to say, "you are strong, but you are not tough!". I have been thinking on this. What exactly did she mean by that? I like to think I am pretty darn tough--you know, a tough cookie and all that. Than last night as I drove home from the beach, I thought to myself, I am not tough. I am a thin-skinned lady who wears her heart on her sleeve. I thought of how I choose to always believe in the good in people. I always choose to believe the sun will rise in the morning. I am almost naive in my consideration of the good in people. It drives some crazy. I thought of how many of us walk around knowing that we are strong and surviving. All the time wondering if we will make it.
I went back to my roots again last night. I sat on the beach watching the day to turn night. Listening to music and the surf. I sat there and remembered that no matter what or who I am...no matter what label of religion I choose to wear, or how I may look--I am being carried along by my Lord. I went back to the core of my heart to that place that knows a God and a Savior who is full of grace. I love that word, "grace"--you know it, that free gift. It is forgiveness's cousin. Grace, freely given in love, and life...freely given by our Lord every moment of everyday. I believe forgiveness is there waiting always, but must be asked for to receive. But grace, well it abounds with our God. He lets us live our lives, sometimes without so much as a nod toward Him, and we live in grace.
So I sat there and thought of my family. Missed Robert. Remembered grace. All on the day that my son left us nine months prior. I just realized, that very night when Robert left us nine months ago, we as a family went to that very beach where I found myself last night. We went there to witness a massive baptism in the ocean being done by our church family. How remarkable is that, I had no recollection that it was the day it was, but all the thoughts and memories of that day flooded over me.
At the end of yesterday, as I pondered all these things--re-lived the pain and cried all those tears, I found this...Grace abounds in me. Thank you Lord, may I learn to live in that grace and learn to give it in my own life.
Take good care friends.
Peace to you, Kathy
Thursday, August 14, 2003 8:10 AM CDT
Good day friends. It is a very dreary, wet day here in South Florida. I am home alone...it is a strange home alone kind of feeling. I walked into the house after driving Jess up to school and it was such a familiar kind of feeling and quiet. School is back in session...
Yes, you read it here first, Jess is in school. God bless that girl--she is a strong one. Seriously. School this year I believe will prove to be a pleasant surprise. I have thought this morning "where was this year, last year!" For instance, last year at this time, when we were in major crisis mode, where was that cool schedule that she needed, those teachers that make her laugh...those friends that are there through thick and thin...well, wherever they were last year matters not, because they are here now, and not a moment too late! I count it all good and a blessing from God indeed. Yesterday afternoon I sat in the van waiting with another of the kids Mom's...we talked about the school year. She was telling me about how the night before her daughter came to her and asked her to pray that she would not get a certain teacher, and the daughter commented that she guessed it was a little late to pray for that now after school was starting. The Mom replied saying, "well, I guess we should have been praying for that all summer." As she told the story I thought of my Jessica. I remembered how I made the choice to go the the "little ones" school and make special requests for certain teachers for them, how with Jess we just sort of took it all in stride. I guess what I really mean is this, as I listened to this Mom and the conversation about prayer with her daughter, I thought to myself how beyond prayer I feel most times these days...I mean, I am sort of in this mindset that a complete conscious, specific prayer is way beyond me at this point...I do good to breathe! Seriously.
As I realized this, I am reminded and comforted much by the words in the Bible where it talks about the Holy Spirit making intercession for us; how the Spirit takes our very groanings that we cannot even begin to form into words and intercedes on our behalf. This is where I am. This is exactly where I am. I feel that for some time now, so many have intereced...I am not copping out, I am trying to find my way again.
Christina and Matthew are well on their way to a wonderful school year. It was too funny when we went to see Matthew's teacher, she commented on how Christina had already been there...I asked her if she knew Christina, she told me, "of course, everyone knows Christina!" I am beyond grateful for a special place for my children to go to school. The staff and teachers there have been so caring and sensitive to the children and their needs. I am grateful that the teachers last year had the wisdom to encourage me toward certain teachers for the children this year. It is difficult for them, they cannot tell me to request a certain teacher, they must follow protocol and be fair. I am grateful that in this situation they had the insight to know the special and unique needs of Matthew and Christina.
That is another thing I spend so much of my time thinking on...the impact of this past year on these children. I found myself thinking long about my need to have a book or a manual or something on how to help a very sensitive extremely intelligent 6 yr old boy cope with the loss of his big brother. Matthew has been battling with many psychological issues of late. I have heard from more than one person of how terribly he started missing me while away last week, and how he would not eat until he saw me...this is one very smart, very sensitive little guy. He told me last night as I laid down with him before he went to sleep, that he has never had a disease that was as bad as Robert's. He asked me what the name of the "disease" he had was...it was strep. He talked about the giant pills he had to swallow and how he remembered Robert being so impressed. Not your normal bedtime story for a six year old is it?
So, as many of you do pray for this family, and as many of you are out there pulling for us, afraid to ever be in our shoes...remember the children. Please. It is their lives that have been changed forever. Yes, mine and Jeff's and the extended family have lost so very much...but, these precious very intelligent children are at the beginning of their lives. I pray that somehow, some way, in time they would be able to find the courage to take all of this and have the courage to live. I believe, in fact I KNOW, these children will change the world. I believe they will grow to impact many lives with the love and courage they have developed at such an early age. They are brave enough, strong enough, have enough love, and intelligence to do just that...I am not talking doctors and lawyers and such that will change the world, I do not pick career paths for my children...I only know that whatever it is-someone will be changed, someone will be watching...Robert will see to that.
I had a good job interview the other day. It is difficult for me to realize I must leave my home for a job. I am concerned and do not want to add a burden to Jessica and the children as I venture out...I will work very hard to keep a balance for them. They deserve that. It will work out. I know it will.
Thank you for stopping by...
Peace, Kathy
Tuesday, August 12, 2003 7:38 AM CDT
Good day friends. It is the eve of the first day of school in our neck of the woods. I have already started the whole "why didn't I do that over the summer thoughts!" They are awful...you know them, the same sort of thoughts that tell you to start your Christmas shopping sooner and when it is Christmas Eve and you are shopping you kick yourself! Yeah, those very thoughts!
My mind is swirling again. I had a job interview yesterday, and I feel confident that they will offer me a job. I do not however, feel that confident that I should take it...that is a kicker isn't it? Needing to take a job, but not wanting just any job. My children are still here...they are still my priority, however, so is keeping the roof over our heads...I am certain many of you read this and mumble "welcome to the real world, Kath"... Being a Mom is the one thing I feel absolutely most confident about; and in that role, I even feel so inadequate...I actually think a job would be a piece of cake compared to where and what I have been through. So, we shall see.
Right now, if anyone walked into my house and saw the mess and the laundry and the tile floors, they would have me locked up! Me being on vacation when the kids were on vacation is coming at a price! So, my friends, the thoughts that are swirling about in my mind, will have to remain there for now...
Remember
Remember me when I am gone away,
Gone far away into the silent land;
When you can no more hold me by the hand,
Nor I half turn to go, yet turning stay.
Remember me when no more, day by day,
You tell me of our future that you planned,
Only remember me; you understand
It will be late to counsel then or pray.
Yet if you should forget me for a while
And afterwards remember, do not grieve;
For if the darkness and corruption leave
A vestige of the thoughts that once had,
Better by far you should forget and smile
Than that you should remember and be sad.
Christina Rosetti
Peace to you, Kathy
Sunday, August 10, 2003 0:14 AM CDT
Good evening...actually, I suppose it is good very early morning. I have not written a page in the middle of the night in some time...who knows what will end up here.
I can't sleep. How do you like that; can't sleep, put some thoughts on a page...interesting concept.
The girls will be home tomorrow. Sweet Matthew came home with Jeff yesterday. I had made plans for the weekend when I knew the kids would not be here until Sunday, so I only saw my sweet boy for a couple of hours before heading out. I needed to make a point to see him so that he would lift his moratorium on eating until he saw his Mom! Can you imagine that? He told his Mimi that he was not eating until he knew he was going to see me...little rascal! So, we spent a couple of hours together. He laid on my lap and watched a movie with me...asked me to scratch his back, and he got his Mommy fix for a couple more days...I adore this little guy. Now I cannot wait to see him, he finally got his surfer hair cut and says he looks great! I told him to get the stick out to beat all the first graders off him at school this week!
So, here I am, contemplating life and such as the new school year approaches...it hit me tonight as I thought of the anticipation the children would have the night before school started. I thought of how they would be both excited and nervous...I thought how they would be excited to get their new school supplies together, see their new teachers, and old friends...I realized Robert would not be there. It floored me when I realized this.
Robert loved school. He may have spent the better part of many a day dreaming his life away about fishing...but, he loved school, his teachers, his friends...no bones about it. Even last year while at St. Jude, he could not wait to meet his tutor and get started on is work. I can still remember even the very last day he spent at St. Jude's in the Medicine Room he hung out with his tutor and Jessica watching a movie. The three of them laughed like crazy people. Everyone in the Medicine Room could hear them, all the nurses would pause and wipe a tear from their eye as they all knew Robert's fate; even his sister knew his fate at that moment, we had not told Robert that he had relaped. We all stood there listening to those moments as we realized those would be the last moments of sheer delight in Robert's life before he knew his disease was back this time to ultimately take him...I was so very proud of my daughter during those days at St. Jude. How she rallied by her brother, sharing in those few days before he learned of his fate...she was as brave as he was; keeping him laughing and focused all the while knowing what she knew. Two of the bravest most courageous children. One fighting for his life, one hoping against all hope that it would not come to pass...
So, here we are at another crossroads. Another milestone--we will face it bravely, with a tear in our eye, and a tug on our heartstrings...it is another new day dawning in the Charlton household--thank you for following along.
Warm regards--and the tornadoes missed our house and those around us...Happy Birthday to the Mighty Mitchell Mathis, go on over to his page and wish him well!
Peace friends, Kathy
Thursday, August 7, 2003 10:10 PM CDT
Good day, or rather evening...Almost another Friday is upon us. This summer has flown by.
It has been a lovely summer here for us in South Florida. The weather, up until this evening was pretty predictable and not too bad. Our household has managed to enjoy some of the best things of summer. Sunshine, sand, surf, and good friends...and of course, good family. Times are changing around here for us, and we have been moving along with it as though we are old pros for so long...
Tonight, I made a stop at a local Starbucks...I have been craving their ginger/molasses cookies. It was so strange to bite into one tonight. I realized it had been almost a year since I had eaten one. I lived off those things while at St. Jude. It was my comfort food of choice...that and when they served up some "Butter rolls." Funny how these things come to us in our life and remind us of times that we will never forget. With school approaching and the months ahead, Robert is in the forefront of my mind.
The other day I came home to find one of my very full shelves in the closet had fallen down. The biggest bummer was that I could not blame it on the dog! Anyway, as I picked up the sweater boxes and such, I stumbled across the last set of clothing Robert was wearing when he left this place...I had tucked them away in a hiding spot to keep me from stumbling upon them on a regular basis...and there they were. I did not pause long to look at them, I could not bear to smell them. Then again tonight, buried in the back of my closet was his beloved blanket...part of it was laid to rest with him, but, Jeff and I could not bear to think of it being gone from us too; after all, did he really need it in heaven? Actually, I think it was me that could not bear to part with it entirely. I have thought twice about this choice on more than one occasion; and Jessica did not agree with our choice either...
When I stumble upon these sorts of things, they literally take my breath away. I shake my head hard, and pause with the very breath that is in me...I keep going. Sometimes, I indulge...not today, not right now; I could not...
Matthew called me this morning. He was crying away. He missed me terribly. He told me that he was afraid he would not be able to eat tonight because he missed me so much...he and Jeff were at breakfast together this morning when the overwhelming sense of missing me hit him...I have missed him too. I told my little bubba that when I saw him, I would scoop him up in my arms, give him a big kiss and hug, and the usual taps on his tiny hiny! He and I have lamented over what we will do when he is too big for me to pick up and scoop up in my arms and hold on like we do in our little ritual! Those days are coming on too fast for me...
The girls are enjoying their time. Fortunately no sunburn to report of, and only minor bug bites...apparently there was plenty of snapper for the catching and everyone is happy...
Have a lovely weekend. Take good care. School is just around the corner in our neck of the woods. I have a job interview on Monday afternoon...scare me! Don't fret, as the interviewer who called to schedule told me, there are many candidates being interviewed! I may never get a job! Can I use you guys as references?
Peace friends. Kathy
Tuesday, August 5, 2003 9:21 AM CDT
Good day all. It is a bit later than usual for me to be updating...do you think when I find that new job, they will accommodate me and let me write this page before I head into work? Seriously! I actually slept past 8 am this morning. Don't get me wrong, Prince was acting crazy in his crate around 5 am and I let him out...I gave him a bone to keep him occupied for the next hour and headed back to bed. Then I got up again around 6 to put him and Angel out back. It wasn't until a little after 8 that they decided to try to bark their way back into the house...needless to say, that extra hour of slumber from 5-6 am cost me a puddle.
The truth of the matter is, Prince could be outside all day, and walk right into the house and lift his leg. Pretty much I do not care if he is marking his territory or just doing what dogs do...it is my territory and I am the one having to clean it up! So, I have made the executive decision to get him a doggie house and let him live outside in the bushes and his new home! He loves being outdoors, he just apparently prefers peeing on everything indoors! I figure it is him or me, and since I am the Queen of my castle, out he goes! You should see the smiles on Angel's face, and the cats...they are so thrilled! Prince is like a little terrorist in our house...he is way too smart for his own good. The monarchy he is trying to create is coming to an end...I am taking over the throne. What were we thinking naming him Prince? We should have stuck with something much more simple like Scruffy or something.
The children are having a wonderful time. Turns out that some of the extended family just happens to be there this same week as well. So, Christina has a playmate, and Matthew does as well. Jeff has been fishing with my brother Mike; and Mom, well, she is doing what she does best over there...cooking and playing cards! She was thrilled that I stayed behind because that means she gets to sleep in the "big bed" with all the kids. One of her favorite things to do on vacation. Hey Tom, I actually hear that they are catching alot of fish, don't know what kind though. Apparently Matthew is not the fisherman that his big brother was, he is a surfing kind of guy. Jeff does not seem to mind, but I know he must miss his fishing buddy tremendously!
Well, no job yet. Good news, bad news...someone has to pay the bills! Oh yeah, me! Remember me, the Queen of the castle. If only I had a few servants--hmm, now there an idea whose time has come.
Have a lovely day.
Peace, Kathy
Monday, August 4, 2003 7:14 AM CDT
Good Monday Morning. Another week is upon us. My mind is in a frenzy with thoughts this day...it has been for a couple of days now-in a frenzy that is. Isn't it curious how the thoughts that we tend to ignore become so alive when we are faced with the deafening silence of an empty house!? The kids are having a blast...they must be, they have not called! This makes me happy.
Most of the things I have found myself pondering of late, started as I sat in a drive-thru line at a Sonny's Bar-b-q last weekend. I was picking up dinner for some friends and my family...as I sat there waiting for the order, I noticed this lovely older couple getting out of their car. A husband and wife, as indicated by their wedding bands. I noticed their age -elderly- I noticed how they walked along together. The husband walked a bit faster than his wife, she hurried along as she righted her purse. I thought to myself, as I took note of their demeanors and such, that in about two steps she would catch up to him and take his hand. It just seemed that would happen with this pair. In a second they were out of my line of vision. But their image has stayed with me...
As I watched these two while I waited in my car at the drive-thru window, I thought of how remarkable they were. I thought of how they must have lived through so many things together. How at that point in their lives, the things that are so important and so consuming at my point in my life, are so different to them. How at ease they looked with each other and themselves. I thought to myself, "it is something to get to the end of your years alongside of another. Where is the glory in living life alone?" I thought of how for so long in my own life, I figured I would be better off alone.
As I pondered the way that some people get to the end of their life, and have managed to do just that alongside of someone who knew them like no other, and who had weathered all of life's trials and joys with them...I remembered me telling my best friend how I have always thought I should just live alone...it seems like for me, I have always felt this way. It started as a teen; this idea of going off somewhere and living by myself, taking off by myself and such...not ever really connecting with anyone. Just content, me, myself and I. Not bitter, not unhappy--just me. It is easy to take care of me. My best friend so poingnantly put it to me, well of course you silly girl...it is much easier to live alone! The challenge is in the living with others.
So...as I drove along Saturday afternoon, after the children and my family had all left town, I found myself alone. I drove along and of course began to think of my Robert. To think of how nothing made him happier in this world than to be with those that he loved. It is as if he knew his days were not long for this world and that he had to live it right now, right at that moment, that their were "no more days, and that it was all empty..." I thought of how this young man taught me so much of living. I realized for the first time in my life, that I do not want to live any moments alone, no matter how tempting that may sound. No matter how easy it may be to just get along in this world by myself.
Now some of you may read this and think, how can she speak of being alone when she has those 3 amazing kids...well, I think that we all know that so many times in life we can appear to be living in the moment. I have also found that many of us, if not most of us, do think it would be easier to go through life alone...many of us probably feel that we do not need the aggrevation of a husband, or wife, or friends...some of us have perfected having these things in our life, but still live alone in our hearts and minds. That is tricky, for me, it would be easy. I am someone who could easily find my way through this life looking as if I am living with others and in my mind and heart being completely alone...not any more.
So, I guess what I am saying is that I have realized I must put away the desire to hide away within myself, my faith, my children, whatever world it is that I can hide within and let myself live. I have been much longer for this world than my precious Robert was...and I feel like I have missed living for so long. I have birthed 4 children, and I feel that I have missed so much...No more. I want to laugh from my gut, as I remember my son did. I want to hug and hold on so tight that the one I am hugging begs for mercy, as I remember my son did...I want to live in this place, so that when I leave this place it will be a stepping off into another phase of living, another phase of the journey.
Robert was only 11 yrs. old. I always thought he could have changed the world. As it is, he changed me. He left this place not having a notion of the impact he had on is mother--or any of us for that matter. He did not live to influence anyone--he simply lived. The rest is just a ripple effect. He had not been taught any philosophies, not been given any guidelines, no one had to teach him to pay it forward and such...he was kid, who had a heart, who loved, laughed and in the end...lived.
Now, I am a Mom who is doing the same. It is all good, even when it sucks...because it whether my life comes to me in the form of laughter or tears, it is my life...and it is there to be lived.
All is well? Indeed...I have rambled this day, thank you for coming by...
Peace to you, Kathy
Friday, August 1, 2003 7:27 AM CDT
Good Friday friends. Another week behind us, another week in front of us. I woke up this morning with the realization that it is Friday. I also realized that of late, Fridays have not been that daunting. Then Mom called...
Mom called me to tell me that she had read the page this morning. She read about how I was feeling at the performance the other night and such. It is sort of strange to both of us how we can talk to each other every day, yet, not really acknowledge what is going on in regards to our loss. Mom and I agreed. We talked about how no matter what we do or where we go, it is an overshadowing of life now and a missing piece will forever be gone...we agreed that it is simply so sad...I appreciated my Mom acknowledging my pain, and her knowing and realizing the pain I carry with me, is a comfort to me.
Mom told me that she wanted to write something about Robert on the page, so she had signed in the guestbook. I decided to put it on front for all to read.
"Hello to all-Here it is time for our annual Boca Grande vacation week. While I do look forward to it, it also causes me some pain, some tears. This was Robert's favorite place (all the Charlton children's favorite) and while I have tons of memories, my most treasured one is the early mornings. Robert and I waking up early. I to have my coffee, he to be out on the beach, catching bait fish, checking the tides and the weather, scouting the sea for dolphin, the shore for other creatures. The funniest thing about these early mornings was that Robert was so quiet. He did not say a word, knowing that if he woke up the household, he might be sent back up to his room to sleep for another hour. There was no sending Robert back to bed at Boca Grande. He barely slept. There were fish to catch. Bikes to ride. Ice cream to eat. There was the complete freedom that this island brings to make a kid (and adults also) act like a kid! By the time we were ready to leave, Robert was sunburned, chapped lipped and exhausted. He would sleep the instant he climbed in the back seat for the drive home. He would always shout, "Bye Mimi, I think this was the best vacation yet! This was the best and most fun year yet!" Of course, I always agreed. I always knew that it was the best ever. I was at the island with the kids, riding my bike, searching for shells, eating ice cream, cooking mammoth meals, playing cards at night, listening to the roar of family over the roar of sea. It will be like that this time, only a little different. Our favorite fisherman will be looking down upon me on those early mornings. I will still have my quiet time with Robert. Robert, you make sure your Dad catches some good fish for me to fry. Hey, your spirit is so strong and your love so great, while we will feel you there, we will miss you terribly. God Bless you Robert. God Bless us all. Mimi Bunny"
The children are so excited about their time over on the beach. Jessica is bringing a friend over for a couple of days. I have informed my kid brother to be nice to the kids or face my wrath! All is in place...Matthew is counting down the hours. Robert is waiting quietly along the shores of that special place...I can almost hear his laughter...see his smile, feel his hugs.
Have a wonderful weekend wherever you are...wish me luck, I actually compiled a resume and the time has come for me to find a job! AAAGGGHHH! Do you think they will let me use the computer to access the webpage while at work? HA!
Peace my friends...Kathy
Thursday, July 31, 2003 7:11 AM CDT
Hello friends...Can you believe it is the end of July? Almost the end of summer! The children go back to school in a couple of weeks. They are heading over to the West Coast of Florida for the traditional week at the beach. Jeff is taking them, along with my Mom, and brothers, and whoever else my family has managed to invite over since last summer. I know it will be bittersweet for all of them. This place is Robert's most favorite place in the world, and some of our favorite memories of him are from times spent there...I hope they each are blessed with a special sign from him that brings them peace.
These past days have been filled with thoughts of Robert. No big surprise there. Christina has been going to a little church around the corner from our house to their choir program all summer. When I picked her up from her dress rehearsal the other night, she sat right down in the car, and said, "I wish Robert were here to see my show!" Matthew and I just sort of looked at each other a bit speechless. We were both speechless, with that where did that come from feeling...then the two of them got into a battle of the missing Robert syndrome. Both expressed how they missed him more than the other one did...it was a harmless battle, and they worked it out. I chose to stay out of it, and said that we all know that we all miss Robert terribly.
Later that evening, after I cleaned up the final gigantic mess for the day--literally spilled milk this time--I sent the little ones to bed. I was wiped out...done, finished for day, ready to be down for the count. It was only 9:30! The kids sort of looked at me like I was crazy for making them go to bed before midnight--after all it is summer right? Anyway, I had had it with the day...so, as I wandered down the hall away from their rooms, Christina the ever sensitive child yells down the hall to me..."Mom, how long has Robert been dead?!?" I stopped in my tracks. Usually when I get to this point in a day, the point of complete exhaustion and fatigue, I am easily drawn to crying...and this question from my 8 yr old daughter just pierced my heart. I answered her. She then wanted me to remind her of the exact day and time and date of his death. Christina then said to me that we needed to do something all together that day to honor him. I agreed.
Christina's choir performance was last night. It was wonderful. A lot of fun, and very upbeat. I know that she was so proud to have us all there...the Mimi's, her Papa JC, her Dad, and a couple of friends...Yesterday was a big kick-off rally for the Leukemia Society and such. I remembered it all day yesterday. I had set the date aside in my mind knowing that I wanted to attend. I had dug out one of the jerseys the Team in Training had sent Robert while at St. Jude. I had planned on wearing it. I read about the event on another child's website-Seth's site. Since Seth's passing, his parents have become very involved with the Society. It is strange for me. Robert was an honored patient. I had gone to some events and enjoyed corresponding with the Team. Robert loved hearing their stories and it was an encouragement to him. I never receive anything from the Leukemia Society anymore...no newsletters, no notifications about events. I guess they leave that up to the parents in my situation. Anyway, it is strange. I guess Robert lost his honored patient status since he is no longer a patient; it would probably be too discouraging for those battling on...My point is this, it was a strange dilemna for me, the want to go the rally, and the need and want to be at Christina's performance. Sort of like if I went to the rally, I would be honoring Robert. Well, I know that in going to be with my daughter, I was honoring Robert. Honoring that which he loved most in the world--his family.
No one knew that I was making this choice. No one knew that I felt this tug at my heart and the struggle to be in two places at once when it comes to my Robert still goes on in some ways...maybe someone else was there at the rally last night and gave thought to my son who died from this dreaded disease...maybe someone there remembered all the children who are the bravest of brave. We were remembering him as we lived and laughed and sang all together, just as he would have wanted.
So Christina, you may not have seen Robert, but I am sure that he was there.
Have a great day. All is well.
Peace, Kathy
Wednesday, July 30, 2003 8:40 AM CDT
Hello friends. Some minor computer glitches going on around here...sorry about that. I hope to have them ironed out by this afternoon...
Take care, Kathy
Tuesday, July 29, 2003 7:24 AM CDT
Good day friends...I trust you all are well. WE are doing great in our neck of the woods.
Having Jessica home to keep me on my toes is especially nice...she pointed out to me last night that I had not written on my page in some time...I told her that I wrote on Friday as usual, but that yesterday morning, I did not have anything on my heart to say...she said, "something on your heart? Who cares Mom!, just write something..." Gotta love your kids, they just say what is on their minds! So, those of you who are inclined to my ramblings...remember she is right here with me "encouraging" me along.
I think my beloved Jessica enjoys reading in hopes that she makes it on the page...or not. Actually, I was telling a new friend just last night about my children. All of them. I have realized as I listen to my telling of the story of the events of last year, that Jessica has come through with flying colors. I love telling how she struggled with school and such...and how in spite of that, ACED the standardized testing with flying colors. Her grades were low mostly because of a lack of turing in assigned work, but she managed to ace all the tests. When I sit and piece-meal our life of this last year...all of it; and all of us in it, I come up encouraged.
I guess it is amazing that any of us are still standing, and thriving. Grandmas, Grandpas, children, cousins...Aunts, Uncles...friends--we are all carrying on.
I also ran into an "old friend" as well last night. This fellow Mom was at dinner with her husband, and two boys. Her boys remind me of Robert so very much. One of her sons was a terrific buddy of Robert's and a good friend. These boys are not boys anymore, they are young men in their twenties...they babysat and played with Robert when he was a little guy. Anyhow, as I stood there talking with them for a few minutes, I saw that look on my friend's face. That same look I once had on mine when I found myself face to face talking with a Mom whose daughter had died in a car accident...that look that begs to ask the question, "how are you breathing? how are you standing there?" I saw that look and wanted to whisper in her ear that for me, "there is no other choice."
So, we are off to the beach today. We must enjoy all the days of summer break that we can while we have them. Just me and the five kids in the Mom mobile...gotta love the mini-van! It is gonna be a hot one, I can tell...but it should be loads of fun.
Have a lovely day.
Peace, Kathy
Friday, July 25, 2003 7:00 AM CDT
Good Friday friends. It is a beautiful day here in our neck of the woods.
I realized this morning while taking my shower, that it was so quiet and peaceful in my house. The thought that all three of my little darlings were sleeping soundly and peacefully was so heartwarming to me.
This morning when I stepped out the front door to meet my friend for our walk, I was floored in my footsteps. I could not help but notice the crescent moon, and the stars in the sky. It is not common to see so many stars in the sky, especially at twilight, around here. I stood there in the street gazing heavenward. It was so beautiful. As my friend approached she noted that she noticed it as well...the other night, while driving along the highway, I saw another amazing sky...then the night before that, an amazing display of lightning...at the end of our walk, after much huffing and puffing and talking, my gazed turned heavenward once again to a perfectly pink and orange sky full of amazing cloudscapes...all evidence of our heavens.
Is it not amazing to think that our Lord allows us live our lives as we do, any way that we choose? Amazing that we are here, and that in moments like the twilight of the morning we can see evidence of His handiwork in the heavens above us. He does not put them there with a sign on them ordering us to notice them...they are subtly placed above us beckoning us to raise our heads heavenward and gasp in delight in the realization that they are there...that He is there...that in all of these things, we can choose to praise Him, or not...He really does love us unconditionally, doesn't He?
"Because of the Lord's great love we are not consumed, for his compassions never fail. They are new EVERY morning; great is your faithfulness." Lamentations 3:23
Indeed He is faithful in spite of who we are and who we are not...may you find peace in His faithfulness to you this day, and may you find peace in who you are this day.
All is well.
Peace, Kathy
Thursday, July 24, 2003 3:53 PM CDT
Good day friends...thank you for not giving me a hard time for not turning up here for a couple of days. I took a bit of a sabbatical. Have no fear...I'm Back! :)
The past couple of days I have found myself deep in thought about myself. I know, we all have a tendency to obsess about ourselves on a regular basis. I have been realizing what an expert I have become at being one of those people that say "everything is fine..." when maybe it really is not. Now do not get me wrong, attitude is everything...but in the quiet of our hearts and minds, and with the trust of the right people, we should be able to face the feelings of disappointment, shame, guilt and anger...you know the sort. The sort of emotions that we tend to hide away and not want to admit that we are battling with. Especially when we are a parent.
So many times as a parent, especially a Mom, we have to put on a "happy face" for the crowd. For the audience of little people that watch our every move. This is a fine line, and a serious thing with which we must find the balance. It is sort of like how they tell you in a marriage to never "argue" in front of the children...well, I think that "arguing" or "fighting" can be painful and confusion for a child to witness, however, I believe it to be completely healthy and normal for a child to know that their parent faces tough issues and must find their way through them. Especially when they are watching a marriage.
As mine and Jeff's marriage has taken on a different role in our lives, it has in our children's lives as well. ...Jeff and I have chosen to no longer be married... Obviously, this has had a tremendous impact and effect on our children. We have spent many hours and much time making sure that our children are safe and secure and know that no matter what we are still their parents and love them and are there for them...we have done this in the shadow of Robert's death; we have done this with little or no fighting, name calling, or hatred...
I do not share with you how wonderfully Jeff and I have handled this phase of our life together--now separate--to say that we are a shining example of people...but, I am grateful to report that in the instance of our children, we have always agreed on how to love them, discipline them, and nurture them. Even now, though we are not a married couple, we are a team and devoted to them none the less.
This summer for me has been one of discovery. It has for all of us. Losing Robert summed it up for all of us. We must learn to live, love and laugh anew again; no matter what. Individually, collectively, and totally--live, love, and laugh--still united as a family, just in a new fashion.
I am astonished with my children. They amaze me beyond words. You can imagine. They are the stellar ones--the shining example to follow and believe in. All FOUR of them.
Thank you for stopping by; for following along...for all of it. As one who has been following along for so long now put it in the guestbook--we are all part of two-sided relationships in our lives; this one may be a bit one-sided, in some ways...yet, I know that you are out there, and I count you all a blessing!
Peace to you. Kathy
Tuesday, July 22, 2003 8:42 AM CDT
Good day friends...Whew, we won't even go into what Monday had in store for me...let's just leave it that it is all a learning process.
I would like to share with you a few words that were written to me from a Mom who lost her daughter to AML some years ago...here they are:
"Grief is like a very bad roller coaster ride. Just when you get to the top and can catch your breath, you are suddenly and unexpectantly dropped back to the bottom of hell again, lacking the strength or desire to begin to try to climb up again. But you do and over time the days and hours between the top and the descent will grow further apart until you find some stable ground.
I think acceptance is an appropriate word - in the end we really have no other choice."
For me, the latter is what rings most true to my ears. "Acceptance...in the end we really have no other choice." Now I recognize that does not apply to all of us. We may not have any other choice, but so many people when faced with the loss of a loved one, do not ever want to come to a place of acceptance. To them, acceptance means almost that they agreed to it...that for them to accept the fact that someone they love has died, means that they said it was okay. That is not what it means for me. Acceptance in this case, losing Robert, does not by any means indicate that I like the situation. For me, it means that I am trying to accept the situation at hand and find a new way to navigate my life.
I am trying very hard to purvey this to my children. I do not expect that they will ever look at me and say it was okay that their brother suffered and died as he did. I also understand as I look at their fragile faces, that for the rest of their lives, they will be coming to terms with the roller coaster that is grief. Can you imagine being so young and growing and as you learn about life, always coming to the reality that your big brother died from cancer? That is a heavy load to bear.
Some things in life we have a choice about accepting. We can pick and choose our friends, our mates, our partners in life, our jobs...we cannot pick and choose our parents. However, we can choose to not accept them and live without them. In the case of the death of a loved one..death by its very naturetakes away our choice. There is no way that I can move heaven and earth and alter this decision that has been made...no amount of anything will change the outcome of Robert's death. The same thing applied when the cancer came in the first place...we prayed, believed, sought the best medical care...we did everything in our power on heaven and earth to not have to accept the obvious. Robert had cancer, and he died from it.
That is a fact. Accept it and find a new way to live...or wither up and die myself...Yes, you know I have to accept this lot in life and find a new way. My heart breaks these days as I ponder the reality that is my children's life ahead of them. Their life will forever be altered by the loss of Robert. I at least got to live a great deal of my life not knowing the cold reality of this loss...they are at the beginning of their lives. Pain and sorrow will forever be their companion. My mission, to impart love, and peace, and courage, and laughter to them.
I am learning to live and accept many things these days. The very idea of living requires a person to be able to accept many things which our out of our control. Getting out of bed every day, whether your child has died or not requires wit, courage and wisdom. Otherwise, we are just zombies coasting along. As you all can surmise, I am not much of a zombie...never have been.
Acceptance comes in many forms. That which is acceptable to us can either make or break us...and in the end, we really have no other choice.
So, I may not like it, may never have wanted it...I may abhor the very thought that my Robert has died. But...
I must accept it.
Peace. Kathy
Footnote...I had written about half of this page, and my internet connection was lost...my journal page gone...No choice, just gone. I had to accept that!
Monday, July 21, 2003 5:49 AM CDT
Good Monday morning! I trust that your weekend brought you whatever you needed.
I spent the better part of Friday and Saturday doing laundry and getting Jess's room ready for her return home Saturday night. It was painted, and I took the opportunity to clean out from under and behind all the furniture to be rid of the dust bunnies. How is it that so much dust and dirt can accumulate in such a short amount of time? There was dust that seemed to be there for years. Rembember, Jessica is in Robert's "new room". She moved into that space a month or so after he left us. She had requested it be painted, and it felt really good transforming it into her space entirely. Pretty much, eight months later all of Robert's things are out of Jessica's room.
My good friend and I were lying on Jess's bed talking Saturday afternoon. I said to her, "see that giant box and those three smaller boxes by the door?" She noted them. I told her those were Robert's medical supplies that came home with him from Hospice and such...they have been in the linen closet in the bathroom of the new room all this time...waiting for me to do something with them. Eight months...well, I must admit it, they are in a box in the garage now! I just need to get them somewhere where they can be put to good use; like our church's medical team ministry. So....hopefully this week, they will be out of the garage. Hey we all have goals in life. Mine just take a little longer sometimes...I shared with my friend that I knew that needed to be delt with sooner, however, I was busy trying to survive and live as opposed to face the "skeletons in my closets..." We all must choose our battles and if we have the luxury of facing them when we are able to, then I am going to choose that option.
Pretty much I do not give advice on my page...right? Well, here is my one bit of advice to all you parents out there. When your teenage daughter is away for a length of time in a new place, with new friends and such...have her fly into an airport a significant distance away from home. The long drive home will give her a chance to unwind and talk about her trip. Jessica requested that I come alone to pick her up from the airport...I thought it a terrific idea and looked forward to some time alone to catch up with her. We have some of our best talks while driving. Do you other parents find that to be true? Think about it, we put them in the car when they are babies and drive them around until they calm down to sleep, and then as teenagers, we put them in the car to drive them around! What goes around comes around!
Anyway, we are DELIGHTED Miss Jessica is home! It is always an adjustment coming home after being in a new place on summer break. Personally, I used to cry for about 2 days when I had to leave summer vacation and come home! My poor Mom, I must have drove her nuts with that.
No big plans for the week at hand. I do believe I owe Jessica a trip or two to the beach. She laughed at my tan--the nerve! :)
Thank you for dropping by. As you surf these pages, please NEVER forget why you are here...I know even now, I must NEVER forget my new and amazing friends that are still in the fight of their lives...Zachary, Mitchell, Ryon, Cameron, Kyle, Jessica, Steven, Lizzie, Matt...to name a few. Matthew noted to me yesterday, "Mom it seems like everyone is getting sick this year." I pointed out to him that we just never knew that there were sick children around before Robert got sick. I said, now we have new friends, and that is how we got to know them...I told him, there are sick children all around us. Then my precious boy told me that he was going to go back to Tennessee. I asked what for. He said he wanted to visit Target House again. He asked me if I remembered his friend Brandon that was there, and if I knew his number and where he lived...my heart sank. I pondered for a moment if I dare tell my precious, tender-hearted Matthew that I do know where his friend Brandon lives--he now lives in heaven with Robert.
I did not have the heart to tell Matthew that Brandon had left this place as well...I just could not do it.
Take good care. Peace to you all.
Kathy
Friday, July 18, 2003 6:05 AM CDT
Good day all. Friday.
We had a lovely day at the beach. Our orignal plans included some friends, but we ended up just us at the beach...Christina and Matthew did have their best buddy, Jordan along for fun in the surf. I was determined to be at the beach yesterday.
I sat there and watched the three children play in the ocean. I watched the bigger kids surfing and skim boarding. I think I like watching the boys skimming the most. I look at these teenage guys and realize Robert would have loved to be doing what they were doing. I just sort of watch and imagine what Robert would look like if he were there. I can see his image and such, but I will never know him as a young man in his teens. So, a little imagination goes a long way. I kept looking for something special from Robert to jump out at me. Then my cell phone rang. I know, how silly a cell phone at the beach...I was hoping my mortgage guy would call. Anyway, it was my sweet Jessi calling me from Maine.
I sat there and talked with her for several minutes. That is when I thought this must be my sign from Robert. To be connected to all three of my children that are here with me now. Jessica will be home on Saturday. She has had a wonderful time in Maine. It will be so good to have her home. Talking with her while sitting on the beach was just perfect for me. I pray she will never be more than just a phone call away.
Last night I was cleaning Jessica's room. Getting it ready for her arrival home. I spent most of the day thinking of sweet Robert. He is everywhere you know. This house is full of him, and reminders of him. There is a wall of family photos that I sometimes cannot even look at. As I cleaned the shelves in Jess's room, I found it...I got my special word from Robert. It was a note he wrote to his sister not long before he left us. It goes like this...
"Sorry Jessica,
for doing what I did. Can you forgive me? Oh well I
wrote this because you don't like being told sorry.
Your Brother,
Robert"
I about fell over when I found this. I tried to scan it so that you all could see how carefully he wrote this note. Robert underlined "Sorry" three times, and every letter "I" in the note was dotted with a heart! Then he colored a rainbow at the bottom of the page. It is priceless. Jessica had said that she had a note somewhere from Robert apologizing to her, but she did not know where it had gone...and last night I found it. It was a gift from him reminding me that he is never really far away, just somewhere else...I will frame it for her and put it with her other pictures in her room.
I stare at his writing and his artwork sometimes to think that in having those pieces of him here, I can almost bring him to life. If I ever do manage to write a book, that will be my purpose...to bring Robert to life. To bring this whole story to life--to tell of the love of a boy, and a family, the love of a community, and perfect strangers...to tell the world of a love that surpasses all understanding. To tell of the glory of our Lord even in the midst of such sorrow.
This weekend will be filled with many new things, I can tell. Jessica is coming home. All is well.
Peace to you all my friends.
Kathy
Thursday, July 17, 2003 7:08 AM CDT
Good day to you all. Yes, I noted the date...it dawned on me last night...8 months since sweet Robert left us.
We are off to the beach this morning. The children and I have really enjoyed our summer. It is unprecedented for us to have this much consistent fun! None of us our driving each other crazy...yes, we miss our teenager, but we are having the time of our life!
I am hoping to get in a walk along the beach to spend some time thinking of my sweet boy. I hope he sends along something special to make me think of him. We go up to the beach where the pier is that we sent the bottles off from. Have not found one yet! Seems that every time I go to the beach I find some special sandstone that Robert sends to me. I am certain I will have quite the collection as the years go by.
My friends...I must run, sorry this is so brief. I just had to come here and say hello.
Peace my friends,
Kathy
Wednesday, July 16, 2003 5:51 AM CDT
Good day friends...I heard a rumor the rain may be headed here for a few days. I trust that those of you in Birmingham and the surrounding areas have your sandbags ready in case more rain heads your way...seriously, I hope the weather gives, those of you who need a break from the rain, just that- a BREAK!
The most profound words spoken I have heard in some time came from my sweet Matthew yesterday afternoon. I had picked him up from a friend's house--he was reluctant to leave, to say the least. Matthew is the hardest one to tell "NO" to. He turns on the waterworks...I mean big time sad face and tears...tears just flow like giant crocodile tears when he is disappointed. It breaks my heart... Anyway, I digress as usual, I picked him up and informed him of the plan for the evening. He did not like my plan for the evening, and I told him sorry buddy, but "YOU HAVE NO CHOICE!" He sat quietly for a moment and replied..."Mom, I really hate it when I HAVE NO CHOICES!" Good thing he was in the backseat of the van, so that he could not see my eyes roll to the back of my head and hear the deep sigh I let out!
I told him, well, we all hate it when our choices get taken away from us...in my mind I had what I refer to as an "Ally McBeal" moment. You know the kind when some insane vision of your life flashes before your eyes, as you roll them to the back of your head and sigh...well, at that moment as my 6YR OLD SON complained of not having choices, my day flashed before my eyes...the stack of bills that are not getting paid, the mortgagae headaches I am dealing with, the lack of a job...you know the drill...
Then I realized, I may not have choices about any of the circumstances of my life, but I always have a choice about my attitude. Needless to say, I failed miserably yesterday about my choices in attitude. I took my choice and was a grumpy, crabby, unhappy person! Yeah, I know--I am entitled, we all are; but, you know what, it does not help anyone when I choose to be that way. It certainly does not help my children. I believe in letting them "see you sweat", however, I do not believe in ranting and raving and acting in such a manner that makes a child feel insecure. I did not do that, thank goodness...just grumpy, crabby, and having a lousy attitude. Apparently it rubbed off on my little guy...because he hates it when he has "no choices!"
Oh, that we were back in the day when having no choices meant that we could not stay an extra hour at our friend's house...and in the end, would not having any choices mean that we had a "CHOICE" to get keep Robert...
"But if serving the Lord seems undesirable to you, then CHOOSE for yourselves this day whom you will serve...But as for me and my household, we will serve the Lord." Joshua 24:15
Choices, choices, choices...everywhere choices--what shall we do?
All is well.
Peace, Kathy
Monday, July 14, 2003 8:06 AM CDT
Good day friends. Monday, Monday...here we go straight on into another week.
Things have been lovely here. The weather is beautiful-very hot! As my Mom so eloquently put it, "it is so hot, it is killing her weeds!"
The children continue to enjoy their summertime. Matthew's best bud arrived home from vacation-I may not see him for the rest of the summer. Jessica continues to enjoy Maine, but was rather jealous when Christina told her that she had been to the beach three days in a row! Jessica is missing her South Florida weather. Do you think being home in sunny South Florida will help her get over the transition home from her vacation? I hope so. Christina continues to enjoy the sunshine and her best friend across the street. The early morning walks have begun again with my sweet neighbor...let's see how long that lasts with those early mornings!
I remember going away as a teenager to visit a friend for a couple of weeks. It was my first real venture from home. I ended up staying the entire summer, and having my first real crush. My best friend, Shari, and I were reminiscing aobut that just the other day...I think there should be a rule that when you have children, parents should be off from work for a good part of the summer to be able to goof off with the kids. Actually, if parents did not work all summer, who would fund the trips the children want to take? Go figure.
I must admit, I am ready to go back to sleep! Late nights and early mornings are something I need to get used to again. Sleeping until 8 or 8:30 is considered late for me! Not much else here to report. How lovely to hear and read some words from some faithful friends on the web...thank you!
Take good care, wear sunscreen!
Peace, Kathy
Friday, July 11, 2003 9:26 AM CDT
Good day friends...good Friday! Another week has zoomed by us. We are holding on--are you? I trust that you are.
As I thought of what I was feeling in the wee hours of the morning yesterday, I am grateful that the day did not become awash in tears and pain. It was a day of fun and laughter, and love and hope...what a day indeed.
A day like any other. I had lunch with a special friend. I helped clean their house, and then spent the afternoon taking in the laughter of my children and my beloved "extra" children. We have been fortunate to have a special guest in our midst this week. A young man named Kyle. He and Robert were great friends. He is fondly known as "Cousin Kyle". It has been wonderful for Matthew to have him here, he is like a brother to him. Yesterday when his Dad dropped by to give him a hug, he noted that he was greeted at the door by 6 children informing him that Kyle was not leaving, and Kyle was hiding in the back of the house!
How grateful am I that within this home children are happy and safe. How grateful am I that within this home, that could be full of sorrow and pain, there is laughter, and love...How blessed we all are. Not one child or adult that comes here can miss the photo collages of Robert and the family...his presence is all around us; it is a welcoming presence. I am grateful for this.
So, I stood in my kitchen. Locked the back door so the kids HAD to stay out in the sunshine for a bit...they jumped on the trampoline and laughed and chased each other around the yard, dodging the dogs! There were 6 kids in all. Their ages ranged from 3-13! I listened, laughed, and counted my blessings...naming them one by one.
The moon should be getting full tonight; Matthew's hair is completely wild from the surf and sun...I actually have a tan! Jessica is having a fun time being a teenager...I am not paying any bills! Life is moving along as it should...and we are going along for the ride.
Yesterday, in the guestbook, a "friend" sent over a website for me to check out. They wrote that when they read this it reminded them of what we did for Robert's birthday. It was a lovely, though sad, story. Thank you for sending over the link. It was about a man who fished a bottle out of the ocean. He found in it a note written by a boy some 19 years ago...the boy grew to a young man and is now gone...the man tracked down the boy's mother, and gave her the note her son had written 19 years ago. I can only hope that someday I will receive a call that says someone found one of our bottles...and that Robert's story will be touching lives in 19 years.
Have a lovely weekend...what a pleasant surprise to hear from so many yesterday in our guestbook. A lovely surprise indeed--Thank you!
Peace my friends--truly, all is well.
Kathy
Thursday, July 10, 2003 7:30 AM CDT
Good day friends. Did any of you read the new quote at the top right under Robert's picture..."Courage is being scared to death and saddling up anyway." John Wayne...That was my boy Robert!
I mentioned yesterday that these are "strange" days for us in our family. Days of deep thought and remembrance.
Today is the anniversary of the actual day of Robert's bone marrow transplant; or rather the infusion of his new bone marrow into his body. I laid awake for hours last night going back to that room in St. Jude. Back to Robert's bedside in that recliner...
That night was like any other night. We knew that they had planned to do the infusion the next day but, they told us it would probably be late in the day before the marrow was totally prepped. Jeff had gone back to the Ronald McDonald House to sleep. Nurse Paula woke me up at 5am to tell me that she had just received word that the marrow was almost ready and that they were gonna do the infusion very soon. I remember waking with such a start; thinking of how I had to call Jeff to get there. Me and those phone calls to Jeff, at least this one was not bad news...I remember practically panicking to think that he might not hear the phone and not be there when the marrow was infused.
My mind just stayed in that room, that early morning. I watched Nurse Paula rushing around to get everything prepped. I watched as Nurse Gina came on to her 7 am shift in complete shock that they would be doing this at shift change and how she kept mumbling about needing more coffee! It was chaos. Robert was so calm. I remember him the most. This is where it becomes so very difficult for me...seeing him, watching him in my mind's eye--watching him pray for his miracle--all along knowing and believing and trusting in God and all of us that this new marrow would kick his cancer's butt and he would live...
I watch him in my mind's eye, and feel him in my heavy heart. There has never been a braver moment in a person's life than that moment as my 11yr old son watched them infuse new life giving marrow into his body. As he began to pray and watch and hope and feel the new cells going into his body. He stared at that batch of new marrow with such intensity as if to will it to make him whole again...
That is what haunts me now. A bittersweet memory of an amazing remarkable moment in time...Robert had all the faith, trust and hope in this world. We all did.
Robert is now living on in heaven, and in our memories and in within our very hearts and souls. This courageous young boy changed my life profoundly, and still is affecting it on a daily basis...You say this is the "reason" that it all may have happened...I have been convinced there will never be reason enough for Robert to have had to suffer and die as he did, for saying that there is a "reason for it all" to me would be saying that it made "sense"...sorry, no sense to me at all can be found in it, none of it adds up...we just must learn to live with it.
Today is a special day of remembrance...a day to be remembered that offered such hope and a day filled with courage. I hope that today for me and mine holds something special in it...a new day for a new beginning.
Couldn't we all use a new beginning? All of us could use a new life infusing "jolt in the arm"? Well, we may not be watching new marrow infused into our frail, sick bodies...but, someone somewhere is; our "jolt in the arm" may come in the form of a hug from a child, or maybe if we are really fortunate a kiss from a loved one...or maybe, maybe just maybe...an I love you!
God bless us all.
Peace, Kathy
P.S. Jessica is having a wonderful time in Maine with her friend. You see, life is ebbing and flowing as it should...
Wednesday, July 9, 2003 9:59 AM CDT
Good day friends. It is a HOT one down yonder in South Florida that is for sure!
All is well. As I sit here I can hear the crickets in the backyard...I can feel the sun beaming through the window and just know that from those sounds and heat it is like a steamy swamp out there. I pity those who have to work in this heat this time of year. Those sounds always bring thoughts of summer. Summer camp, biking, going to the beach...mosquitos, you know the usual stuff.
It is strange around here this summer. I am so very glad that I am home with the children. The emotions are high and spirits are so very delicate right now. I can literally feel how these children feel and how they are remembering last summer. As many of you recall, especially family, many rallied around the children when Robert was admitted to the BMT floor. Mine and Jeff's family rose to the occasion and took charge of the children. They did a wonderful job. I cannot imagine what would have come of them without the family that surrounded them being there...as it was, I am learning even now a year later, just how truly difficult it was for them.
We have always been a close knit bunch. Sometimes I must admit I take for granted how much my children really need me. They are such self-sufficient, independent young people, that I forget how they rely on Mom and Dad for so many things. I realize now that even though they were surrounded by a multitude of family and friends that were loving on them, they needed their Mom and Dad and brother...they needed their family back together again. I also have realized that it often gets overlooked by me, and those around us, just how long these children have actually been without Robert...even longer than Jeff and I have been. Even though he was so sick and battling as he did at St. Jude, and all of those months prior, Robert was with us; we shared in his pain, and his laughter...they pretty much lost their brother last February when he relapsed, and began spending all his time in the hospital.
I think about how those children held down the fort so to speak...keeping watch, waiting, believing, hoping, trusting...KNOWING their brother would pull through and be home again, whole and laughing and living with them. I cannot begin to fathom how their minds and hearts must process this loss. It is overwhelming. It makes my pain seem so small in comparison...I know how to find a way to live, I know that I have three other amazing children to keep me going...they only know as young ones that all the faith and trust and love and hope in the world did not save their brother from his fate...
Knowing and realizing all these things I realize that somehow, some way, hope must be imparted back to these children. They must learn to believe and trust and love and be willing to take risks no matter what the outcome...for the living and loving at hand makes it all worthwhile!
I remember and think many times a day on the words of sweet Genna to me about Robert...she assured me that Robert would have most definitely chosen to live even if he knew the outcome of his life--he would have chosen to live to know the love of his mother, and father and family...that in that love all the pain is made null and void. I think on this all the time. It is true. Just as a mother knows she must endure the pain of labor to bring forth her baby, she gladly endures it; so we must be willing to risk pain in our life to know love and joy and laughter...
Again, Joy and Sorrow--coupled together, one cannot exist without acknowledgement of the other...they must find a way to co-exist within us, within our hearts and our minds...
Mimi Jane sent a letter over to Christina talking about how Robert is in heaven. She shared with her that she can talk with him through prayer to our Lord...and receive word from him through the holy spirit. I agree. The other day on the 4th of July, I sat at the beach with a large group of family friends from my childhood. I sat there and watch my 3 children frolicking in the sand and surf...I thought of how the missing piece is always on my mind; how there will forever be a missing step in the stairs of my children's lives...Robert. I was up from the surf in a beach chair under an umbrella, I reached down to play in the sand...right there was a smooth stone. A beautifully perfectly smooth beach stone, in the shape of a heart. Perfect! It was just as though Robert said, "see Mom I am here with you, this is from me." I held it in my hand and rubbed it in my fingers...thinking back and remembering the perfect heart shaped leaf I found in the middle of the road when I arrived in Memphis last summer with the children at 2am in the morning...another sign...I still have that leaf, I will forever keep this stone.
Thank you for coming over to this page so faithfully. Have a blessed day.
Peace. Kathy
Tuesday, July 8, 2003 7:34 AM CDT
Good day friends. It is a sunny bright day here in South Florida.
Jess is adjusting to life in a very rural area. She has informed that it is not even a town, just a bunch of houses on a lake! Sounds lovely to me; they are staying in a 3 story house that is being renovated, it was built in 1900. She is plotting her early departure though...we shall see.
We are more than ecstatic in our house today...our dear best friends the Finestone's called with great news about their Zachary's testing of late. Zach is a nueroblastoma patient; he relapsed last year...he is doing amazing! Right now his lab work is showing no signs of disease and many of the indicators of his disease are going down and seeming to respond to present treatment...that is awesome! How blessed to have such wonderful friends in our life.
Scott and I talked about how close we all in our little group have become...how we may have not grown up together, but our journeys have certainly forged a relationship that runs deep and will not soon be forgotten...talk about going through thick and thin together!
Today is a beach day. I heading off with the "little ones" and a couple of their friends. Should be delightful. I plan to be slathered up with sunscreen and a hat and a big shirt...no more sunburn for me!
Have a lovely day...I hope it has stopped raining in Birmingham! How wonderful it was for me this weekend to see my oldest, dearest, and closest friend...they hailed from Birmingham for the weekend...now they are home!
Be back manana! Peace to you,
Kathy
Monday, July 7, 2003 9:37 AM CDT
Good Monday morning! Another week behind us, another week in front of us...I hope that you were able to celebrate the 4th of July in a memorable way...I did--we all did.
Jessica has ventured North. She has journeyed to Maine to visit with a friend who is staying there...it was a bit impromptu, and as her vacation started last night, she was a bit apprehensive. We talked for some time on the phone last night. Jessica and I talked about how this time of year is bringing to the forefront new emotions and old ones that we were facing at this time with Robert.
I talked with her about how I understood that from this point on we will be feeling like we are re-living many of those times again. My mind goes back to those days at St. Jude constantly! Now after hearing Jessica's trepidation in her voice I realize her mind is not cutting her any breaks either...the days can be difficult; the nights, after the sun sets, even worse...I pray that she can find some peace and courage as she is away...and most of all I hope that Jess manages to have some good old fashioned teenage fun!
I sent with her a book to read on the plane...Chicken Soup for the Pet Lover's Soul. She loves these types of books. I stuck a bookmark in it that read, The most important thing in life is to love and be loved...I wanted to etch in the metal of the bookmark, and laugh too!
I wonder as life unfolds if the layers that envelope all of this journey with Robert will ever stop peeling away...this journey through losing him and finding ourselves anew is a great one, in spite of the obvious pain and sorrow and such...Jessica and I were discussing religion the other night. Discussing how man has influenced and dictates how we should live. I encouraged Jessica to study the person of Jesus Christ. I encouraged her to study and learn about how He was when He was here among us. The kind of man He was in our world. This may sound strange, not to diminish our Lord by any means, for me I find that I can look back at how Robert lived, and fought his battle and then died and learn much about how to live my life...Robert was a boy, a flawed human...a boy who wanted to be a boy--not even a "choir boy", just a boy...I look to the life of Jesus as a human and I know and see the standard; Robert's life showed me and gave me something tangible in my time to see and gleen from as well. I do not compare the two lives, Robert and our Lord. I just want to know how they lived and see the example of their lives and remember it as I live mine.
I realized this morning, my sweet Jessica will not be reading this page while she is away...I will miss you my precious girl. The "little ones" and I will miss you making us crazy! Come home soon, and remember, to laugh and smile everyday!
Have a great day friends, thanks for stopping by.
Peace to you all,
Kathy
Friday, July 4, 2003 9:02 AM CDT
Hello friends...Happy 4th! I have been spending much of the time this week thinking on this time last year...a friend asked me what Robert did for the 4th last year...I decided to read back to the day last summer at St. Jude. I have put that journal page here for you all to read.
We all miss Robert terribly! Here is the page...who knew what was coming?!?
Thursday, July 04, 2002 at 10:51 PM (CDT)
Happy 4th of July! We had a very quiet day. We slept in a little since Robert did not have to get up early for radiation. He and I watched movies most of the day, he was still wanting to lay around all day, not very hungry and just sort of mellow...unfortunately, late in the day when one of the ladies came in to change his bed, she had quite a bit of perfume on, he got sick to his stomach. After that his nurse gave him a dose of benadryl to help him rest. He fell fast asleep for most of the night. We did manage to get him up to get weighed and I was glad to get a smile and a kiss from him before I headed back to the hotel for the night.
No fireworks here for us...it gets dark here so late that I did not feel like watching any...Robert seemed a bit disappointed that he knew he was missing some festivities. The other children were at their cousins house for the day and would watch fireworks with them. Matthew called me bright and early with a request. He wanted me to let him have a little black and white kitten! He said but Mom the kitten is FREE...that is not possible, all cats cost you at some point. Nothing like a little guilt heaped on you by your 5 yr. old who has been crying himself to sleep missing you! Jeff and I agree that is the last thing we need right now...poor Matthew, I feel so bad to say no to him...if only he had asked for another light saber! Jeff said he is having a hard enough time figuring out how to build a room on the house so Robert has his own bedroom when we get home. I guess the girls will have to pretend Matthew is a foreign exchange student and share their room with him (inside family joke :). We would like to figure out a way for Robert to have his own use of the bathroom as well. This might get interesting yet...Jeff also has to figure out how he is going to get a certain landscape job finished this month in WPB...he does not plan on leaving Robert any time soon, especially this month.
The transplant floor has a full house, 14 children in some state of transplant. They are not all getting transplant for the same reason as Robert, but I have met a little girl from Lebanon who is. Her mother and I talk as much as possible. Her English is pretty good, but I know none of the Arabic language she speaks...we have so much in common, and as mothers we can just look at each other and understand so much. Her little girl is 9 and is an ALL relapse patient like Robert. There are also 4 children in her family, a girl, boy, girl and a boy! What are the odds of that. Fortunately, this little girl's brother is a perfect match...that is where the transplants differ...it is so strange to realize that of the 14 children on the floor almost half may not survive...you do not think of these things most of the time. These are things you do not focus on...I believe in miracles--and for me miracles do not discriminate...every child deserves one.
Robert's WBC is down to .6; his HGB is 10.6; and Platelets are 280,000. If his hemoglobin is lower than ten when he receives this medicine called Rabbit ATG, he will have a transfusion. Robert will start chemo on Sat. The Rabbit ATG is given to help his body not reject the graft of the new marrow. Unfortunately it is not uncommon for the children to end up in ICU from this drug. It causes fevers, and blood pressure problems, and respiratory problems as well. The children go down to the ICU while the drug is being infused and then usually return to the floor after that. They do not stop the administering of any of the drugs from this point on...they only support the patient's body and system as best as they can till they get through it. Pretty much every one of the drugs Robert gets from this time out for chemo, cause fevers, chills, nausea, respiratory problems, blood pressure problems, and some can have serious effects on the liver, kidneys and bladder. Every moment is crucial. It is mainly up to us to keep a very close eye on him for any changes...it appears that the actual transplant date will be on the 10th.
Thank you for checking in, and keep in touch. All the journal entries are awesome...keep them coming! To our friends in FL stay dry!!! Your prayers are so important to us, we know they give us strength. Kathy and Jeff
PEACE FRIENDS...SEE YOU MONDAY! Kathy
Thursday, July 3, 2003 7:20 AM CDT
Hello friends...good day.
Wow...I just looked at the time and date at the top of this page. Very sobering. I have found myself going back to all that was taking place during this time last year. We were at the point of transplant where Robert had radiation and chemo alternating everyday. I remeber how St. Jude literally shut down for the 4th of July...Robert had the day off from treatment. We tried to get them to let him out to see some fireworks outside...but they had him on serious lockdown! So, no fireworks for him last year...
Last night Christina began asking me about Robert. She was lying on my bed, and asked me if I ever wanted to go dig him up out of the ground just to see what he looked like now. I did not tell her that I had been thinking that very thing just that morning...not to see what he looked like, but to believe that he was really there, and gone from this place...than she wondered what he was doing...what he looked like. We talked about how tan Robert would get...the only dark-haired one of the bunch with my brown eyes...the missing link. She struggled so much last night about Robert. She ended up sleeping right next to me holding onto a little teddy bear Robert had made her in the hospital one trip last summer before transplant. I had forgotten about that bear...I stared at it like it was the most precious priceless thing on this earth...something made by my Robert's hands...I cherish these things so much.
I look at anything handwritten and handmade so differently now...you can imagine.
Day to day, we move along...embracing one another...and remembering to laugh. I find that I must laugh to live these days...and I love to laugh and be happy...never before in my life have I appreciated the pure joy of a good laugh...until now.
I have said it before, I will say it again...everything is different now. Everything...
Get out and get some sun...I hope those of you who are getting soaked have some relief soon.
Peace, Kathy
Wednesday, July 2, 2003 8:09 AM CDT
Good day friends.
Today I must start with a confession. I broke one of my die-hard rules...a cardinal sin in my book if you really must know...I just could not resist. Now, anyone in my family who reads on further will be shocked with my revelation...Okay, enough already; I went to the beach TWO days in a row! That is not the sinful part, this is... I managed to get sunburned! OUCH! Even with sunscreen at 45 on I apparently forgot my stomach and managed to fry it! I look ridiculous; luckily I have not taken to wearing midriff revealing tops yet, so no one really has to see the damage, but picture a red-headed Mom walking around wincing everytime her little sundress rubs her sunburned stomach! Too funny! I swore off the sun years ago. I do not know what got into me!
The beach has been so beautiful here. Very breezy and so full of life. Young, lovely, happy life. I think in a way sitting on the beach reminds me of Robert the most. Even Matthew chimed in remembering how Robert would go to the beach everyday if he could. For me, sitting there watching the children play and surf and such, is sort of like feeling that Robert is along the shore somewhere casting his line or net, and skim boarding along the way...
I took Jessica and one of our favorite teens to the beach yesterday. Genna joined us and we had a very nice time. I was glad that we were able to go with just us girls...Next time we will bring the whole crew and make a day of it!
So, there you have it; I am sitting here with a sunburned stomach, and a headache from too much sun...oh the funniest thing to me is when we came home from the beach, I decided to do my daily walk right then...I barely made it home -I thought I would pass out from sunstroke...duh?! Anyway, no brilliant perspectives on life...except maybe, wear sunscreen, take an aspirin and call me in the morning!
Peace to you all...
Kathy
Tuesday, July 1, 2003 8:26 AM CDT
Good day friends. Aaahhh...Tuesday? I think Tuesday is a day I like, maybe. ;)
We are truly breathing new life into the old saying "lazy days of summer." Jessica has a goal of seeing if she can out sleep the day before. I tell the "little ones" to get into their pj's and brush their teeth before going to bed, and realize in the morning when they emerge in the same clothes, that we all fell asleep without me following through...note to self, remind Matthew to brush what few teeth he has left in his mouth! Man am I gonna hate when I get to working full-time out of the house!
Last night Jessica and I spent alot of time talking about life issues. I cannot go into much detail, because as she has told me on many occasions, she is not supposed to even like me as a Mother, let alone talk to me about this stuff! So, we talked...eventually we talked about Robert. She said, "Mom, no one has any idea how much I miss Robert...and how this affects me." I told her I think about that alot. I also told her that I know this summer must be so hard for her always watching her little brother and sister and knowing that they have each other like she ussed to have Robert...she feels the missing piece the greatest. Siblings that are that close together in age and friendship leave a mark on your soul. So, I must say that in all of this, I am most proud of Jessica. Now you all know that I am so very proud of all of my children. But, I have a great respect for my teenage daughter who not only is trying to grow up, but facing some very real hard awful issues that were none of her doing...life, yes, life...she is choosing to live. I watch her as she struggles and is trying to etch out her own way; she is no longer Robert's big sister, she is the quintessential big sister to the little ones, all the while trying to figure out the world's ways, and putting up with her mother! HA! We ended our hour or so of conversing with this..."Mom, I like talking to you so much better when you aren't acting crazy!", I agreed, my reply was "Jess, I like talking to you so much better when you are not acting crazy!" That's what I am talking about!
You never know what a day may bring...a little sunshine, a little laughter...a bonus is always a lovely talk with a lovely daughter. Who knew Monday would be so nice. How nice to have no plan for a day and at the end of it, to look over at the huge pile of laundry that you chose to ignore...and sleep soundly in spite of it.
Have a lovely day.
Peace, Kathy
**The purple page color is for you Jess...
Monday, June 30, 2003 9:09 AM CDT
Good Monday Morning...it is still morning right? I am ready to go back to bed, already! You got to love awaking to the biggest, most disgusting mess known to man made by such a small dog! Good thing I was only half awake so that it all seems like a bad dream...thanks Prince! Hey at least the entire house got mopped!
No, I do not believe that waking to such a mess is indicative of the kind of day and/or week ahead. I refuse to go there. I am sure that there are certain folks that would not want to start off a Monday that way; and a new week. It is already July for crying out loud, can you believe it? I cannot. I remember how last Christmas this summer seemed so far off. Time chugged along and it seemed that it would never be here. And it is here; it is almost the fourth of July...and I am still cleaning up dog poop! Go figure!
We had the most wonderful night last night. Yesterday afternoon was the first official meeting of the Cancer Sucks Club. What you did not get the invitation? You say, how dare they meet and eat without us! Well, first let me fill those of you in on the Cancer Sucks Club...it is led by the infamous, notorious completely intimidating Scott Finestone. His beautiful son's link is at the bottom of this page, Zachary. Talk about a kid who can kick butt! He is the man! Anyway, I digress...so, the Finestone's call me and tell me they will be in town on Sunday for chemo, nice little Sunday drive...so, we decide to get together. I offer my house, we decide to call up another family to come over and hang out...Scott, suggests getting a room at a local restaurant that we enjoy and going there...and then it mushroomed! All of a sudden, a few phone calls later, there were 25 of us for dinner! It was so cool. So, it became dubbed the first official meeting of the Cancer Sucks Club! Hence, the need for food! Oh, did I mention anyone can join this club, there is one pre-requisite...you have to hate cancer!!! Easy enough, right? All the kids were on one side of the room, goofing off, laughing...loving each other...us parents were on the other side, goofing off, laughing, loving each other! There was no consumption of alcoholic beverages...there was a toast...Genna just got her port removed, Amanda finished treatment...Zach had the first "clean" bone marrow aspiration EVER! (or as Matthew fondly refers to it, as Zachary's "bow and arrow is cancer free!) So, we raised our glasses took pictures, loved that there were 6 amazing children kicking their diseases butts--laughing, loving, and enjoying their lives together...as they gathered around and all of them posed for a photo...I know that I was not the only one in that room that was acutely aware of the ones that we were missing...Robert, Seth and baby Jalen. Robert would have loved to be right in the thick of it all...especially with Italian food involved.
To see all those children together--seven families, 12 children...all together, by some sort of dumb luck. A good time was had by all! Kids will be kids, and life will go on...All is well.
Feel free to join us next time. So you see, no amount of dog poop first thing in the morning on a Monday morning can top the fact that my new week started last night in the company of some remarkable friends...God bless them all as they fight on.
Take good care, and thanks for stopping by. I believe that on Zachary's page they will be posting photos of the "meeting"...hey, did I forget to mention the first "Cancer Sucks Club" cake? Man, you really missed out!
Peace my friends, Kathy
Friday, June 27, 2003 5:38 AM CDT
Good day friends. Friday? Friday! Friday...big sigh. Now we have made it through another week. I have decided I must get past the slump that has become Fridays, I will start this today.
Yesterday was such a strange day. The kind of day that one feels all out of sorts all day long and not sure why. Do you know the kind? I do. All to well. I must admit, by the end of a day like that I come to the same place almost every time...Robert. Naturally. For me at the end of everyday no matter what the day may hold, especially if it holds many trials and the things that make me crazy, when I am at the end of the day, I say to myself none of it matters, my Robert is still gone. That is the way; it puts things in a strange sort of perspective for me.
It dawned on me last night as I thought of how much fun the children have been having this week, how difficult a week this must have been for Jeff. You see, this week was the first basketball camp he has ever been in charge of. When you are a coach, this is sort of like having a baby. All week long Jeff has run the camp and watched the kids and such...all week long he had over 50 reminders that his son was not with him. He did rejoice to know that his other children were with him, do not get me wrong...they are the light in this dark tunnel. But, it is so diffcult to see other children that are Robert's age, doing things he loved and knowing that he is not here to enjoy them...very difficult indeed. So, it dawned on me last night, dawned on me how painful this all must be for Jeff this week. Jeff and I have had a difficult time finding a way to remember Robert together and talk of him when we miss him; it is very difficult. It is a process. We just keep going.
This weekend will be a good one, I know it. I am planning on it...even if it means doing laundry. When I say a good one, good is such a relative term. Good for me means the feelings of complete and utter despair do not have a chance to consume my every thought and feeling. That would be good. The rest, sunshine, laughter, love, kisses from the kids, the dog not peeing on the floor--well, that stuff is known as "gravy" in my life; or icing on the cake...
I found myself dwelling on the whole concept of "but for the joy set before him, Christ endured the cross..." I found myself watching Robert in my mind as he was plummeted into the abyss of his disease. I thought of that day when we had to go get him out of school and lead him onto this path for his life...so innocent, so pure, so trusting...he trusted us and his doctors profusely. He always knew if he did that which we told him to do he would have what he wanted--his life back. His joy was the way he lived his life. He knew he had to endure to have the joy set before him...Robert being a boy had no lofty notions of being cured to save the world, he simply wanted to be cured to live his life...I am so grateful that our Lord knew what he had to do; knew us all too well, and chose to do that which he did for each of us. In our humanness I dare say, none of us would have been able to look upon that road and known that the joy before us was greater than the sorrow we were in...
We are human. We breathe, we love, we laugh, we can dance and sing...we can cry and mourn...we are so very complex, yet simply the same in our hearts. We did need a Saviour that is for sure.
Peace to you all my friends, have a lovely weekend.
Kathy
P.S. I know I got my Stepmom's birthday confused with the other date that is commonly shared in our family...the 23rd and the 28th are shared by many...all I can say is Duh! I can walk a mean mile, but I cannot keep certain things straight in my brain these days...she got a chuckle out of my forgetfulness.
Thursday, June 26, 2003 5:41 AM CDT
Good day friends. We have managed to get through another week, almost. I cannot believe it is the end of June. Time seems to be flying by.
I was reading last night from the same book which I quoted to you all the other day ("The Prophet"). Last night I read about the author's views on Joy and Sorrow. It touched my heart. He said, "When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy. When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight...But I say unto you, they are inseparable." No truer words have been written, this I understand, I am living it.
I thought this morning more on this idea. That joy and sorrow indeed co-exist. I guess for some that which brings them joy can be taken away and never delighted in again. Some choose to stop living and laughing and loving. For me it is clear that these two feelings do live side by side. They are a part of life which makes us stronger or can by their very nature break our hearts. Either way...if you know the absolute complete joy that you can feel when you love someone than you know sorrow. If you know that joy, then you in turn know the pain of that joy and coupling that with living you are easily sent into feelings of sorrow from that pain. I believe that in this life our greatest joys only come to us in human form and in the form of love. It seems to me that these things all go together. Love, joy, and sorrow.
I know this is true of Robert. I think of the fact that this boy's purity of spirit has brought much joy to many; think of yourselves. So many of you who have chosen to allow a boy that you do not even know touch your life, bring you joy, in turn upon losing him has brought you much sorrow. I think of all the people, children and adults alike, in my life that I have "chosen" to love and let bring me joy...in that there can be much pain--much sorrow. This morning I thought this is like the proverbial chicken and the egg syndrome. You know it all to well, "which came first?" One does not have to lose the life that brings such joy to know that in living and loving there can be great sorrow.
I just spoke of this the other day with Jeff's Mom. We spoke of the idea of how painful it is to live with a loss of a great love-Robert-and how painful it is to live with a loss of someone you love that is down the street. My answer in regard to this particular idea was that for me, I could go on forever knowing that someone I loved was alive some where just far from me in the hopes of getting to look upon them again...once they are gone, they are gone...whether we are alive and well living among us, or living on in heaven, if we choose to love and receive joy from another, then we dare the pain of sorrow. It is a two edged sword...it is designed that way. None is greater than the other. Yes, we do want to stay in the moments of joy and never know the pain of sorrow, however, it is a given and a risk we must be willing to take to know true love and life.
I think of this simple fact: if I did not mourn as I do now for my precious son, than there would be no testament to the joy that he brought to my life. I thought of this last night as I helped my precious Jessica as she was feeling so sick. She is here, she brings me much joy...in turn as I watch her grow and find her own way in this world, I recognize that she must grow and eventually leave my nest. Yes, this can be considered great joy, however, in turn it means that she is leaving a childhood and moving onto to life. Just the idea of her facing life and its hardships is enough to bring about the pain from sorrow. It waits for her as she grows and chooses to love; the pain of a friendship gone wrong can bring about a deep sorrow and I have even seen it change a person to the point they quit living. Forever the joy that is Matthew and Christina's childhood will be filtered through the sorrow in the in the loss of Robert...that sorrow over the love and joy of that amazing child will forever filter every thing else. Some parents cannot bear to look upon another of their children for fear of the joy that can come and in turn bring sorrow. Some are not brave enough to know the joy because they know of the sorrow.
There is much to contemplate in our life. I wonder if the next time you look at one that you love, one that brings you joy, if you might remember that in some form there has been sorrow attached to the joy. It is okay. It is designed that way, if you are human than you must be brave enough to know that joy and sorrow go hand in hand. If we hide from the sorrow than we must hide from the joy. Can you imagine living without joy...then do not think that you will live without sorrow.
Robert attempted joy at every corner. He faithfully fought his disease for the greater joy that was set before him...for Robert in the end, his greatest joy was found in leaving us...that just reminded me of one of my favorite scriptures..."but for the joy set before Him, Christ endured the cross..." Hebrews 12:2. That is some powerful stuff. For those of you who look to our Lord for guidance remember this...He in human form was brave enough to bear the greatest of sorrows in our place that we might have eternal life. He was truly full of love and joy...and not afraid of sorrow.
I have rambled enough for this day...enjoy this day--be brave--live a little.
Peace my friends--all is well.
Kathy
Sorry, footnote...not done rambling yet--I just thought of Christ again, and his joy set before him enduring the cross. Can you imagine the sorrow? For he knew all to well, that even though the cross would bring great joy to many by bringing salvation, he knew not all would choose to receive his gift...not see his love his salvation...in that the burden of sorrow must have been insurmountable--that is why he endured it.
Wednesday, June 25, 2003 8:09 AM CDT
Good day friends.
Don't you hate when you do something totally stupid? You know the sort of thing; when you remember something important, like calling a loved one on their birthday, and then you keep thinking I will do it later...and then forget! DUH! Can you imagine? Can you relate? I hope not, please tell me that I am the only one scattered brained enough to do such a thing...
Anyways, enough about my not so bright memory...I need to wish a belated, but very heartfelt HAPPY BIRTHDAY to my amazing, stupendous, loving, absolutely brilliant StepMOM! I always knew my father was a smart man, but the day he managed to marry this wonderful lady was a blessed day indeed! Donna, I have told you many times, but I think that many should know, how very blessed and rich you have made my life all these years. You have listened to many a tale and woe, lived practically my entire life with me and supported and loved me and encouraged me as your very own. I realize I may be the "red-headed stepchild", but with you it was never that way! Thank you for being there and for making this family gel! You are glue that is for sure. I hope your birthday was a happy one in spite of all the pain in the midst at this time.
On Monday when I left to pick up the children I thought that would be a good time to call and wish a Happy Birthday...unfortunately, I apparently stepped into the twilight zone and had no cell service the entire time I drove to meet the kids. This was not good. Especially when I was zooming along the highway and saw the little girl standing on the side of the road crying her eyes out! Yes, that is right on the side of the highway stood a little precious dark-haired girl crying! Backpack and all! I did a double take and hit the brakes...I spun around and headed back to her...apparently the bus dropped her off and she was alone. After about a half hour of trekking through the dirt roads and knocking on doors, her "abuela" pulled up. She was only 6 yrs old. The uncle was supposed to be home and she had gotten no answer at her house and walked back to the highway and was standing there when I found her. My guess was that she tried to find her bus again. Needless to say, I want to know why the darn bus driver left her on the side of the road alone in the first place...no cellular service really stunk at that time!
The children are having a great summer. They are at basketball camp at the school where Jeff is coaching now. He is running the camp and everyone seems to be having a ball! I guess I might have to consider liking basketball for its finer points in life, like basketball camp!
Not much else here from the homefront...
Have a lovely day, I hope there is sunshine on your face.
Peace,
Kathy
Tuesday, June 24, 2003 8:45 AM CDT
Good day friends. All is well here at home.
I picked up the "little ones" yesterday afternoon. They had a wonderful time and I think even surprised my Aunt a bit with how perfectly charming those two really can be. She noted how doting Christina was with Matthew, and how attentive and loving they both were with each other. They are the kind of children that do not complain and are grateful for anything and everything that you do for them. Special kids? Yes, they have been through alot; they watch it all unfold and if you look close enough you can see their little minds making mental notations on life and applying to theirs.
As I pulled up, Christina jumped out of the car and stood there waving her arms until I got to her...she leaped into me and would not let go; that is my girl--so full of love. On our way home we discussed how summer is for "summer love" and such...we had a "Grease" sing-a-long acapella style and laughed like fools...it was delightful! Chaos has set in. The minute they came in the door, on went the Disney channel and the peace and quiet Jessica and I have been enjoying was gone...back was me hollering, "Christina, turn down that TV!" Welcome home little ones.
I want to share a bit of poetry with you this day. Mom, you directed me to this book, and now I see why. Mom I read this and thought of "our" boy--Robert. I want to share it with you all...
" Go yet not away from us.
A noontide have you been in our twilight, and your youth has given us dreams to dream.
No stranger are you among us, nor a guest, but our son and our dearly beloved.
Suffer not yet our eyes to hunger for your face...
...Let not the waves of the sea separate us now, and the years you have spent in our midst become a memory.
You have walked among us a spirit, and your shadow has been a light upon our faces.
Much have we loved you. But speechless was our love, and with veils has it been veiled.
Yet now it cries aloud unto you, and would stand revealed before you.
And ever had it been that love knows not its own depth until the hour of separation."
From the book, "The Prophet" by Kahlil Gibran
I am certain you can see why I thought of a sweet boy named Robert upon reading these amazing words.
Peace to you all, Kathy
Monday, June 23, 2003 5:01 AM CDT
Good day friends.
I found myself wide awake early this morning. I have not done that in some time. You know the kind of waking out of a deep sleep when you wonder what am I doing awake and what is going on in the world that is unseen that is jarring me from slumber...
I always think of my children first, if they are away from me. I wonder if they are okay and I pray for them. If they are home, I do a sweep of the house and a head count. I rely on my dogs and alarm system to alert me if anything would be amiss, however, seeing is believing for me. Then ifiled today f all is well here and the feeling that something is going on cannot be shaken, then I think of those I love. I pray they are fine and sleeping away.
Maybe it was just the dogs stirring at 5 am that woke me up. Maybe Prince was trying to keep from wetting my floor for the umpteenth time today. Who knows...some things are simply all a mystery.
Earlier this evening Jessica and I were on our way home and she spotted our dear friend Mrs. Maloy. She is famous in this house. You remember her, Robert's other Mom. His best friend's Mom...Jess insisted we head back and visit. I do love seeing her, she warms my heart so much. I also know that when we look at each other we remember Robert so vividly. Sitting in her home, seeing Robert's best friend, hearing that Robert's picture still hangs in his room, was very hard for me. Of all the things I have to face, that is the one I have found myself avoiding. All those trips to drop Robert off at their house, all those times he laughed and played there...I could see him giving "the look" to Mrs. Maloy, to him giving her the puppy eye look to beg for dinner...hear his voice. Poor Jess, I know it is hard for her to see me get so sad.
Moments like that and then waking in the early morning unplanned, weigh heavy on me.
I think my little ones will be home today. I heard a rumor that they need to be back today. I am sure they have had a wonderful time at their Aunt's. Their stay has been longer than planned, so that is a good sign they are all having a good time. I have managed to fill my days with absolutely nothing of importance in the world's eyes these past days...I did not even need to get out the bulldozer...it has been lovely.
Take good care, and thank you for stopping by and being faithful to follow along.
Peace to you my friends.
Kathy
Friday, June 20, 2003 10:55 AM CDT
Good day friends. Sorry I have not updated for you all. Seems my computer has been affected by the weather and such...we were offline for some time yesterday and today.
It has been very quiet around here. The little ones are still gone. I have really enjoyed having this time. It is nice. Believe me, I do not take it for granted!
These past days have been wrought full of thoughts of this time last year. It is so strange to look back and remember that we were facing such a high mountain to climb with the prospect of transplant. Yet, Robert had taken the bull by the reins and faced it just like everything else in his life. If he was scared, he certainly did not let on. I can remember him gearing up for the road ahead of him like he would gear up for a game of baseball or something. To him it was just another obstacle to face and get through and then get on with his life. Robert never took for granted his health and such...he was very protective against others with colds and such, and guarded himself with tremendous caution, yet, did not miss a moment of life and living.
Jessica shared a story with us about the last trip they had in the Marriott hotel in Memphis and it sent me right back to that last week together as a family. The kids and I had come up a few days after Robert and Jeff. I remember feeling so awful when I was not there for the surgery that Robert had to have to put in his lines. He weathered it like a champ. I remember pulling into the Marriott at around 2 am with the children. We pulled up in the middle of the valet and city...and there at my feet was lying a small leaf in the shape of a heart. I picked it up and looked at it and looked around to see if I saw a tree anywhere. It touched my heart so much...I showed it to the kids and have saved it somewhere...I thought it to be a sign from God that he was watching over us in His own way; He was and is, even though Robert had to leave...
Jessica was telling a story about some boys that were very fresh with her. They were flirting and teasing her a bit. She told us of how they were making fun of Robert. Saying he was fat and bald and such...she told us how Robert stuck up for her and insisted they leave the area because those guys were being such jerks. He told her what they said and how he wanted to jump in the pool and clobber them in her and his defense, but knew that he could not because of his lines. Robert was the champion of anyone who was being picked on. I loved that about him. Jess felt so bad knowing that those boys were calling him names. We both agreed about how Robert would have always come to her defense and had really looked forward to staring down any guys that came her way...this story also reminds me of a time that Robert came to the defense of his little brother when a neighborhood kid was tormenting him...Robert would tell this kid, when I get home and am not sick, you better watch yourself, that is my little brother!
This story brings such a good feeling to my heart and at the same time breaks it a little more...these are the types of things that make me miss my boy the most...his character. I know that there is a lifetime of milestones that will never be met, but it is the moments of sheer delight and laughter and evidences of his character and heart that will forever change me and break my heart that there will be no more...
I hope that the rain subsides for many of you that are soaking wet! That "sun comes up and dries up all the rain..."
Have a lovely day and weekend...
Peace, Kathy
Wednesday, June 18, 2003 10:05 AM CDT
Good day friends. The sun is shining here today. I managed to "get rid of" a couple of children for a day or two...imagine that! I think Jessica stayed home just to soak in some of the peace and quiet.
Christina and Matthew are visiting family on the west coast of Florida. I do hope they have fun. My little Christina has been going through that stage of not wanting to spend the night away from home...I am sure that you parents out there have had that one to deal with. Fine with me, I just assume keep them all home as long as possible.
Pretty much it is summer around our house. Jessica and I take turns yelling at the dogs. Now that we are all home all day every day...we have noticed what a couple of pains Angel and Prince really are. That little Prince is something else. He is growing like a weed and taking over the kingdom of Charlton. Thank goodness his vertical leaping abilities are limited because of his short little legs! Otherwise he would be jumping on the beds to wake us up to entertain him all night! At least once a day each of us threatens his life...it is too funny. Lucky for him he is so darn cute! Angel, poor girl, is becoming more "blonde" by the minute...no offense you beautiful blondes out there...I know that is a stereotypical comment, but the only one that fits Angel.
So, basically the three ring circle at the Charlton house is in full swing. Never a dull moment; if it the dog barking because of the a dog outside; the phone ringing and the kids hollering to not answer it because it is an "unknown name..." it is constant chaos...oh did I mention the TV blaring! Usually by mid afternoon I am kicking them out of the house and making them do some sort of a job! Did you read that Jess, go clean up your room! I love you Jess!!!
There you have it, I know exciting beyond words. A day in the life...did I hear someone say, "sitcom".
Have a lovely day.
Peace my friends.
Kathy
Tuesday, June 17, 2003 7:27 AM CDT
Good day friends. As I type this page, the date appears in a little box right above where you begin to type. This day, this date...has much to remember and be reminded of in it.
Seven short,long months ago, he left us.
I awoke this morning thinking on this. I found my mind going back. Going back to this time last year. I am completely and utterly stunned as to what can occur in the life of a normal person in one year's time...
So, here is my question--What do you do when you are packing up your son and family for the journey of their life? Well, I threw a party! Yes folks, many of you may remember-those that were here in town anyway...we were gearing up for relocating to Memphis and St. Jude. Just last year...I had packed Robert for his four month stay. A journey that was as unpredictable as a tornado...except I dare say even more unpredictable because at least you can see the tornado and attempt to run; not with cancer, that son of a gun is even more treacherous than that. It may only wipe out the immediate person in it's path, but the effects and reprucussions of it go far and wide changing countless lives forever.
Here we were, getting ready to fight. Robert was literally so pumped up. He had already been to St. Jude, and was not afraid. We had visited a hospital here in Florida that would have been the location of his transplant had we not gotten into St. Jude. The hospital here left Robert scared and feeling very defeated within its surroundings. St. Jude was his hope, his salvation...the light at the end of his tunnel. I decided that we needed a big send off for Robert. In my heart I could not bear to think that he would not return to a big reception, but I decided he needed to feel the love and support of those around here that wanted to come and see the boy wonder just in case...
Jeff and Robert were due to fly up on the 19th. So, literally a couple of days before I sent out an email, made some phone calls and gathered the troops! There seemed to be a million people coming and going out of our house that night...I loved it; Robert was so happy--beaming with that amazing smile of his, basking in all the attention. He was the type of person that shined when the attention was on him; rising to the occassion with a huge grin, funny remark and hug for everyone. He was destined to be famous! It blessed my heart so much to see so many friends. To feel the love and support of them all. I am certain it did Jeff's heart good as well.
After a long wonderful night of complete chaos we actually got some sleep. The next morning was the time to take the "guys" to the airport. I remember those moments so clearly. We gathered around the couch. Ryan, Robert's best friend, was there to send him off...we took a family photo. It has now become one of my favorites-it is the last family photo of all of us. Can you imagine? Taking a photo knowing that it could very well be the last time you take a photo of your family in its entirety while still hoping and believing and trusting that it would not be the case...talk about a dichotomy.
That is the frame of mind I would find myself living with for the next four months. The frame of mind that has reality staring you in the face and yet chooses to believe anyway. It is the frame of mind with which I live now. Those months in the trenches with my amazing son, have given me courage beyond measure to live each day. I now have a mission in my life to which I never truly gave flight to...my children. It is now my mission to teach them that no matter what comes your way, life can either be lived...or not lived...lived to the fullest, with a pain in your heart that is unimaginable-with a hope that is unexplainable.
I found myself thinking of the moment I realized that anyone and everyone read this page. I remember the moment that I looked over at Robert and realized that his story needed a voice-his pain needed to be known and that his bravery shouted from the rooftops! I remember facing the reality of the situtation and hoping and believing beyond words for that miracle...but, knowing that it may not come. At that point I made a choice to give this all a voice, a face, a life...to give God the glory no matter what. I wanted the "whoevers" of this world to look upon Robert's story, and our lives and know that God did all of it--in us, through us, and for us...
It is a lovely day here my friends. Tuesday, June 17th-seven months ago he left us.
My dearest of friends who are embroiled in the continuous suffering and harsh reality of all of this, may you continue to find courage and wisdom and peace for the journey...to my dearest of friends who like me are living and breathing in spite of the unimaginable being our reality--may you continue to find courage and wisdom and peace for the journey.
All is well--Peace,
Kathy
Sunday, June 15, 2003 8:54 AM CDT
Good day friends. Happy Father's Day to all you Dad's out there.
This morning on my morning walk, I indulged in thoughts and memories of my dear old Dad. I did love that man. I have memories of him as far back to when I was just 3 or 4 yrs. old.
My parents divorced when I was just about 6 yrs. old. I lived with my Mom and two brothers. Dad married shortly after that and went onto have three other wonderful children with my wonderful Step Mom. I adored my father. He could do no wrong in my eyes. I never even speculated this as an option for him. I did not spend time as a little girl wondering why my Dad was not there all the time for me; why he and my mother divorced...I only knew that no matter what, if I needed him he would be there.
I often think of the "faith" I had in my Dad. I think of how my faith in believing that no matter what, he would be there for me. Later in life, this made my faith in believing something greater unseen a bit easier for me to accept. I can see the parallels in my faith and trust in my Dad, in the way I have great faith and trust in my Heavenly Father.
Dad was an easy going kind of guy. He loved his family more than anything in this world. He loved his kids beyond measure. I can still see him carrying around my little sister in one hand and pacing the front walk with her when she needed a change of scenery. I remember how he used to polish her little white shoes for church on Sunday mornings. How he carried her in the house after church ever so cautiously as to not wake her sleeping in her carseat. I remember Dad and I riding a bike when I was little.
I have spent most of my life missing my Dad. I have spent my life loving my Dad no matter what, because I knew that no matter what, my Dad loved me. It was his way. He may have made us tow the line, and expected us to keep up the "good work", but there was never a moment that I ever doubted how much my Dad loved me. It was the kind of encouraging spirit that my Dad had for me that made me believe in myself. His ability to look at me and believe that in the end, all is well--gave me courage, and strength.
I think alot of how my Dad impacted my life. I think that in a way it would have been easy for us to not even be close as I was growing up. He had a new family. He had a new life. We could have easily gone separate ways. Dad never let me down. He was always there for me.
I know that of my father's 6 children, I feel I was blessed beyond measure. It means so much to me that he knew all of my children. He helped me to settle on a name for Matthew. I wanted to name Matthew after Dad. Dad would have no part in agreeing to another Walter. So, we (he and I) settled on Matthew Waldron-named after my Dad. I am grateful that Matthew still has his blue eyes...Dad had the most amazing blue eyes that could flash at you and make you stand in fright or laugh your butt off!
I cannot imagine what it would have done to my father to have been alive when Robert was sick. He hated hospitals, it was very difficult to deal with illness. I found such comfort in knowing that my Dad was in heaven watching and waiting for my Robert. They would have been tremendous buddies here on earth, I can only imagine how they are in heaven.
I loved my Dad--he could calm any storm for me. It was his way with me. His words to me one fateful day just before I boarded a plane home on my 28th birthday..."Kathy, if I do not see you here on earth again, I will see you heaven." Bring me great comfort.
Dad, you too I will never forget. Dad, I will see you heaven. Take good care of my boy...and all the others. I guess your job to calm the storms is not needed in heaven. The greatest comforter is there, is everywhere. Thank you for being a comfort and encourager to me in my lifetime. Thank you for giving me the courage to believe in myself because you believed in me. I still am missing you. Just like always.
Happy Father's Day.
Have a lovely day friends...Peace to you.
Kathy
Friday, June 13, 2003 8:55 AM CDT
Good Friday, dear friends...it is another weekend. Father's Day. The anniversary of 7 months since Robert left us just around the corner...
Let me say first and foremost...Jeff, you are a great Dad and you should never doubt that for one minute; and always, ALWAYS be proud of who you are and know that your children love you dearly! They couldn't be more proud to have you as their Dad than ever before!!! Thank you for being such a good man and father to our children.
This morning I found myself again wondering of this idea of hope...of courage...of true bravery. I began to think on the fact that for my Robert, there are no more hopes...no more dreams. There are no more prayers to be prayed on his behalf. It is unbelievably daunting to have to realize that in the case of Robert and his disease, there is nothing more that can ever be done to make him healthy. To make him whole here on earth again; no school clothes to buy, no basketball camps...no more, nothing...all finished; done...gone forever from this place as we know it. Daunting yes, discouraging, frightening, heartbreaking yes...can it defeat me, can it defeat any of us knowing this...yes. Will it? NO! I came across some amazing words of courage last night. Just in time I might add...I am going to close this day with some of these quotes...I think it is fitting to add them to the page this weekend in honor of the fathers in our world who have the courage to stand strong for their families and their right to have a life as they see fit.
Here are some of the words that comforted me last night...
"Courage is the resistance to fear, mastery of fear-not absence of fear." Mark Twain
"A hero is no braver than an ordinary man, but he is brave five minutes longer." Ralph Waldo Emerson
"IT TAKES COURAGE TO LEAD A LIFE. ANY LIFE." Erica Jong
"Courage is being scared to death...and saddling up anyway." John Wayne
"Often the test of courage is not to die but to live." Vittorio Alfieri
"Courage is rightly esteemed the first of human qualities because it is the quality which guarantees all others." Winston Churchill
"Nothing is too high for the daring of mortals; we storm Heaven itself in our folly." Horace
"It is better to die on your feet than to live on your knees." La Pasionaria
For me..."courage is facing each new day as it comes your way..."
Peace my friends--indeed, all is well.
Kathy
Thursday, June 12, 2003 7:30 AM CDT
Good day friends. I trust all is well with you.
Strange how a day can turn...right? One never knows what a day will hold. Until the end of it. At the end of a day when you have lived it and are ready to rest and sleep; that is when you can reflect on that day, and what it held for you.
The kids are loving basketball camp. Jessica is loving summer. I am grateful that she has been able to kick back and get started on her school projects that are due over the summer. She has to read two books; no biggie, the child reads like normal people breathe. The other is Art stuff...I do find such joy in watching her enjoy her art. I have tried to challenge her into putting all that within her mind onto a page...the trick is being tough enough to "bare all" in your art even if it is not received as you might expect. That is tough when you are an "art student." I mean the very premise of being an artist is the whole free thinking thing...well, when you must meet certain requirements of your instructor, that fine line between requirements and art becomes a bit skewed. I am so proud of her...I hope that Jessica knows this, always.
Yesterday was so strange for me. I was driving home on the highway, and not only did a car fling up a piece of wood and put a nice dent in my hood-thankful it did not hit my windshield-but, I was driving my usual route and the overwhelming thought of where Robert was laid to rest hit me...I could barely drive along. It was awful. I have been so cautious letting myself see him in my mind's eye...in the school yard when I walk, in the house in his favorite spot, hearing his laughter in my ear...but this was different...this was a dangerous vision, and I almost lost it; well, I did lose it, but I managed to stay the course on the road and get through it...I'll not go there again.
Then last night, while I was out shopping, I heard a Mom and daughter talking as they shop. I love to hear the interaction between Mom's and daughters and friends that shop together. I am usually alone. This woman's voice sounded just like I remembered Gigi's voice...it was so cool. I smiled as I listened and did not look up, imagining Gigi in this voice. I spoke to the woman, she was so friendly, I asked her if she was from up North. She said as a matter of fact, I am. I told her she reminded me of someone and thanked her for being so kind.
This happens to me alot. I hear the voice of someone I have lost in someone that is here. They sound so similar. I love this...this is so meaningful to me. These are experiences that make me smile and grateful to be here...
So, friends, off for another day. Have a good one and take good care.
Peace to you all...indeed, all is well.
Kathy
Wednesday, June 11, 2003 6:38 AM CDT
"You can make yourself live forever through writing. Do not pass through life without leaving something behind for others to learn from your experience--even if no one but your children read it. Write of your dreams. Write alone and in a quiet place. Be honest. You may discover a you you've never known." Antone Atwater, Author
My Mom sent this quote over to me. This is from a commencement speech given by this author. My reply to her was that we always knew we were on to something with our need to write--our need to put our thoughts on paper in our own handwriting. You know that whole great minds think alike thing! :)
Maybe that is why my original journal page disappeared into cyber space...it was not supposed to be permenantly left behind for anyone to read...gotta love cyber space.
Last night as I was unwinding in my room and getting ready for sleep...I looked up and saw the girls in the kitchen. My two beautiful lovely girls...I took note of how sweet and considerate they were being (hey I do know how to savor the moment!). I noticed how much taller Jess is than Christina. Thought of the 5 yrs that separate them by age. How they have both grown in so many ways this year...all this while I listened to some songs that bring my Robert to my mind...I was hearing and thinking on all these things as I wanted to dream of tomorrow and the days to come with a hope in my heart...I prayed and hope that my girls will continue to grow and that they would grow to cherish what they have in each other...a sibling. Another person that shares their common life experiences and yet is completely different than they are...cherish each other I thought as I stared out at them talking so nicely and getting a glass of water...then I hollered out to them, "turn off the kitchen light!"
Off to basketball camp for the little ones today. They are loving it...Matthew continues to shock us with his knowledge. Last night Mom told me a story of how the other night she was discussing with the kids something that is coming up in 6 weeks. Matthew looked up at her and said, "that is 42 days." Mom looked over at the other kids and asked, "is 7 times 6 -42?" Jessica informed her it was...she of course wondered when Matthew learned his multiplication in kindergarten last year! No he did not use paper! "You need to keep your eye on that one..." famous words from an Uncle about Matthew when he was just 2 and not speaking a word!
So, off to another day in the life.
Take good care, thank you for stopping by...
Peace to you,
Kathy
Tuesday, June 10, 2003 6:24 AM CDT
Good day friends. The sun is shining brightly over my shoulder...I felt the heat from it earlier when I let the dogs out back...it felt good.
This morning when I awoke I found myself going to the place and church where my family will be to honor Gigi. I can go there in my mind because it is where we honored my Dad...she will be laid to rest in the same place as my Dad, my StepMom's father...the three of them together. It is a beautiful place for veteran's. I believe that was the part that made this so hard for me to face. The memories of all the losses; the times with my Dad, the last time in Pennsylvania was with Robert and all the kids...Gigi was there...we had such hope that all would be well...and this morning--there is still hope. All still is well. Different, yes very--but it can still be considered well.
I found myself thinking of each of my siblings. Thinking of how each of them will begin this journey of mourning their beloved grandmother. Each facing this phase so differently yet together...that is the part I thought of this morning. How individual our grieving is. As individual as our personalities, is our grieving. I thought of my Step Mom and how she must feel so heavy in her heart right now...I thought of the dynamics of family and how sorrow touches each heart and leaves it's mark forever. Some choose to embrace it and carry it along; some must ignore it to survive. I find myself thinking of how many things Jeff will forever feel like he is missing out on doing with Robert...I found myself remembering all the wonderful cookies that Gigi would bake. The many times around the table sharing stories and eating cookies...I wondered if there was baking in heaven. I love to bake and put a smile on someone's face with cookies...it brings me much joy, as it did for Gigi.
I know within my own little family as I watch the children I can see how each of them survives this so differently. Each must find and make their own way. They seem to understand this and we respect our individualities...they each lost Robert in a certain way; each lost their brother, but he was so different to each of them.
That is the final thought I had this morning. It fascinates me how ONE person can be so many things to so many people...think of yourself for a moment. Think of all the "hats" that you wear. One person you are, one simple-yet, very complex individual-and you influence, encourage, challenge and uplift so many people in so many ways. If you were to leave this place there would be many people who would begin to mourn you in different ways...It fascinates me that we can leave any sort of impression on one another...any at all. I love that we are designed that way; that our brains and hearts work that way; that we as humans can affect and be affected by others.
It is a ripple effect, but one that can change lives.
As you walk along the path this very day, who knows whom you might touch...whom you might make smile...and they you. Today when someone makes you smile or frown remember how they have left an imprint on your very heart; and someday they will be a memory. We all must leave this place someday; it is inevitable, of this I am certain. No one has found a way to escape death...I do not spend much time thinking about my legacy. I do not think about what others will think of me when I am gone...I am too busy trying to live...to laugh every day, love with my whole heart and face the sunshine.
Peace to you my friends...this day and all your days.
Kathy
Gigi would have loved this background...something that sort of blew me away yesterday, was when my Step Mom told me she found a very thick file of all my journal pages; Gigi had been printing them out and saving them...this I never knew, and did not even know she read this page...what a blessing.
Monday, June 9, 2003 10:50 AM CDT
Hello friends.
I am still here...sort of. I think...
I awoke this morning and had a sort of vision. I could see my Robert, Dad, Step-Grandfather, and Gigi...I began to think of all my family that is there in heaven already. So strange to realize that my Robert is there as well. So painful.
After speaking at length with my StepMom, she encouraged me to do that which I "needed" to do to feel settled and at peace...she and I decided that a trip north with the children around her birthday in a couple of weeks would be better for all of us. We spoke of how her mother would not want me rushing to be there just to stand on ceremony.
Donna's, my StepMom, mother,was a kind, caring very happy person. I have known her almost my entire life. Gigi as my children have come to call her, was generous beyond measure to my children and family. Never forgetting a holiday or a child in a package that was sent. I used to enjoy our long talks and her stories. I think of how she came to know me and accept me into her family as a "step" child. It always touched my heart and then when she always remembered the children and Jeff and I on holidays was so meaningful. Now I will begin to search for the many cards that she sent to look upon her handwriting and think of her...
I almost wish I could handwrite this page. I have been a bit obsessed about a handwritten letter these days. I have a collection of notes and cards from those who have gone ahead. I keep them nearby to gaze upon them and bring them to life. I make a point of sending handwritten notes to those I love so that some day when I am gone, they will have something of me that they can see me in and remember me by. A photo is a snapshot of the moment, a wonderful memory, but for me it is in the handwriting of someone who has left this world that I really sense and feel someone. I have yet to find the document I have with my Dad's writing on it...thank goodness I can still hear his voice and see his sparkling blue eyes.
Quite frankly, I do not think I could have been able to withstand another funeral at this time. My heart is so heavy it truly weighs me down these days. I fight the feeling that I have let down my family by not going north. My precious StepMom has bravely had to lay to rest my father, her father, my son, and now her mother all in a matter of years...my father and her father died very near each other, and now my son and her mother. For me, 3 funerals in just 6 short months is more than I can bear. I keep hoping for a reprieve...some semblance of a bright spot. I have begun asking friends who are having babies to let me come and watch the birth...or maybe I will get invited to a wedding...something that symbolizes love and hope and re-birth...a testament that life is going on and that some have the courage to live it...
My precious Matthew has lost his two front teeth. He looks beyond adorable. Lately, I find myself gazing at this child. My only son here now...so different than Robert, but my son a constant reminder of his brother...I pray he stays well. I am fearful of this; I know this is all normal...it is a process. As I said to Donna this morning, it is layers...she agreed.
Another layer has been revealed. A deeper, more scarred fearful one. I can sense that this one will take time to heal, to not be so sensitive...and then I am certain another one will be revealed soon thereafter...
Thank you for your support. So faithful are you all.
My StepMom is surrounded by her children. My two brothers, Bryan and Chris-Chris's wife, Sally, my little sister is there; and my brother's fiance, Jackie...she is in good company and will be taken care of.
Gigi, take care of the boys...I am certain you have met Seth and Jalen...I am certain they are glad to have you with them...reading them stories and laughing along with them.
Peace my friends. Kathy
Sunday, June 8, 2003 7:56 PM CDT
Hello friends.
I have been offline for a few days with some technical difficulties. I will be offline for a few more days because of some unexpected travel plans.
My StepMom's mother, "Gigi" as she is fondly referred to by my children, passed away the other day. Mrs. Anne Hunter left this earth on Thursday June 5th. She suffered a massive heart attack and died. There were no signs of illness and it was completely unexpected and my family is stunned.
So, I am planning on flying up north for her funeral. I am not a good flier...hence, all my driving to and from Memphis last summer...
This has been a difficult week for me. Let's just leave it at that...it has been a difficult week for many people around me. Jalen was laid to rest on Friday...I sat with Seth's parents and a nurse from the hospital.
It all sucks...big time.
Take care.
Peace my friends,
Kathy
Thursday, June 5, 2003 8:04 AM CDT
Good day friends.
We here in West Palm Beach are facing this day with heavy hearts. Another precious child has "lost" his battle with leukemia. Jalen left this place on June 3, 2003--left it for a better place, heaven.
This morning as I walked I thought of Jalen's Mom, Jeanette. I thought of how as I walked and took in the sights and sounds and smells of the morning air, some day she would too. I prayed that as she struggles to find the desire to even breathe and eat and sleep during this time she would find the courage to let time pass--and take her with it. They say time heals all wounds...I do not know about that, all I know is that time passes--ever so slowly at first, and then at warp speed later. It is for her to decide if she will join life and let time move her through it, or not. Only she can decide.
I thought of how for this precious Mom right now, it is about making it through another hour...and eventually the hours will turn to days and then days to weeks, and finally weeks to months. I pray that as she pieces her broken heart back together she finds a way to live with it tattered and torn. It is the only way now.
One day, this precious Mom will walk along a path...she will smell the morning air, hear the birds and see the blooms; I pray that she will find peace in her heart and hear and know that her precious son is with her, living on in her...that now, he too is everywhere. Free, finally free...the ultimate in freedom and rest.
Tonight I join a friend and will go to the viewing. Tomorrow, Friday, I will attend Jalen's funeral. Yes, I hate Fridays even more right now!
Please visit Jalen's page. Send the family a note, I know you can do it...the account of Jalen's last day is beautifully sad...I am proud that his mother had the courage to document it as she has...grateful that she was right by his side to the very last breath.
Peace be with you. Some how, some way, some day...in all things-to God be the glory, great things He has done.
Kathy
www.caringbridge.org/fl/jalen
Thursday, June 5, 2003 7:52 AM CDT
Wednesday, June 4, 2003 7:30 AM CDT
Good day friends. I hope all is well in your neck of the woods.
We have been busy getting through school and are finally ready for summer--I think!?! Matthew's graduation was so cute. Short and sweet...he cracked me up because he did not want me to get his hair cut for the ceremony; so, he stood there with his cap on and all this wild and wooly Matthew hair! He is a bit famous for his blonde curly "surfer" type hair, it truly suits him. It was very special to me also because he was standing next to my best friend, Beth's daughter, my 5th child-Jordan...it was so surreal to see them there together. They sang songs and then got their diplomas...now on to other diplomas.
Jessica actually finished 7th grade! Whew, that was a close call. You see miracles never do cease. Yesterday after school I drove her and a few friends over to a very cool place called "CityPlace." It is a beautiful area in West Palm for going to the movies, shopping, and hanging out...they hung out for a couple of hours. I stayed nearby being tortured in my favorite Macy's department store...It was so much fun to hear the girls chattering away about school and friends and boys...I do enjoy being around them, I have always been a fan of the teenager-especially since I remembering being one!
Christina joined the family and cheered Matthew on for his graduation. I will be putting some new photos on the page as soon as I get my other computer online again. Christina loves school. She even stayed after school to help her teacher take the room apart! She is the kind of child that is a teacher's dream. Christina and her buddies are off starting their summer with a sleepover and swimming.
So, we are off to a smooth fun start to our summer. I do enjoy summertime with the kids. We really do not do a whole lot of anything...I am sure this summer will be interesting to say the least. So far we do not have any traveling plans on the horizon. I think after all the travel last summer the kids have mixed feeling about this. I know they would love to visit family and such, but the thought of a long road trip is less than inviting. We shall see.
Matthew has made it a habit to say when you say "I love you..." he replies, "I love you more!", and I always say, "that is not possible!" As he climbed up to get something for me, I looked at him and said, "I love you Matthew..." and he said, "I love you more...and that is POSSIBLE!" It was too cute.
Thank you for checking in on us, and staying close.
Peace my friends. Kathy
Monday, June 2, 2003 5:44 AM CDT
Good Morning World! :) Wow, a new week for the living...last week and through the weekend was a busy one. This one will be busy as well.
Matthew just rolled over and jubuliantly reminded me that tomorrow is Graduation Day from Kindergarten and he is so excited! I know it will be wonderful ceremony and I will be there with "bells on" and a box of tissues and camera in hand. Matthew will be the last little Charlton marking this milestone...as you can imagine I will cry. School has been keeping the kids so busy as it winds down for another year. Jessica has been so busy with end of the year projects...it sure did not help her getting a cold and such to distract her from her tasks. Christina has been her sweet little old self and did her job in helping with the school summer reading program by taking in books for the kids to have one to read over the summer. Me, well, my job is officially over for the season at the Kravis Center. I have really got to get moving and start working here soon...the life of leisure I have grown so accustomed to must come to an end..:(
Friday St. Mary's Pediatric Oncology Support Team had a Memorial Service in honor of the children who had passed away over the past couple of years. There were 20 children honored. Of course, Robert was one of them. It was a lovely ceremony. A bit torturous, but lovely just the same. It was a bit different for me to know that at that particular time I would be crying over the loss of Robert and the other children, as opposed to my normal crying at random! There was a nice gathering of family and some friends and hospital staff there to remember these wonderful brave children.
I would like to close today with a quote from one of the readings from the service...It is from the book, "The Little Prince."
"In one of the stars I will be living
In one of them I will be laughing
And so it will be that all the stars are laughing
When you look at the stars at night...
You-only you-will have stars that laugh!
And when your sorrow is comforted,
You will be content that you have loved me
As I will be content for having loved you
And we will always be together."
This was my favorite of all that was read that day. It is most certainly true, I will forever be "content" having loved my Robert..and content knowing that he loved me...that is where I find my comfort from sorrow-knowing that it was for the love of a child, and now for the love of my other children that I am content to live.
Please this day, pray for baby Jalen...and his precious Momma, Jeanette. Pray for peace that passes understanding. Pray for comfort and grace...beautiful gifts that our Heavenly Father permeates our souls with in such sad times as those that they are facing...
Take good care, All is well.
Peace, Kathy
Friday, May 30, 2003 1:10 PM CDT
Hello friends...WE are fine...I will be back later this afternoon with an update for you. Take care. Kathy
Wednesday, May 28, 2003 5:38 AM CDT
Good day friends...
"Where were you when my night fell, peace shattered everywhere...will the storms moving across the ocean, turn away, turn away for just a piece...leave me here in these ashes--I will live, I will live..." a verse from a song called Job.
I know exactly where "You" were when my night fell, Lord...you were right there with me, with all of us; and you were waiting for Robert. I know exactly where you were, no matter what--I cling to this. Knowing, believing, hoping...trusting.
This morning I awoke thinking of the few pages I read last night on CaringBridge. I do not allow myself to indulge in some of these pages too often. It is troubling beyond words--as you know. I do however, follow those that are right in my backyard...Cameron, Zachary, Seth, Jalen, Ryon, Jessica, Kyle, Mitchell...did I leave any of my precious friends, and neighbors out...what a contingency of friends-what a group. I was thinking of so many that I am so close to. How I watch them fight with all that they have--fight disease, insurance companies, doctors, hospitals...fight, fight, fight...love, love, love...all for the love of a child--their very flesh and blood. A fight I am all too familiar with. I thought of how each of them knows me, knows me well...watches me and prays with every breath and word that comes from my mouth that they would never have to face the loss of a child. The loss of Robert was an unbelievably devastating blow. You see Robert was a champion. That boy was so strong, so amazing...a beacon for survival. Not to mention he had the "most curable of all childhood cancers..."
So, this morning I thought of them all. Thought of the battle they are engrossed in. My stomach became tight, my mind clouded and I became bluer than blue...I think I am turning navy blue these days...I think of how these precious families have tapped out finances, every ounce of any strength they thought they ever could muster...how every day if they slept the night before they face it and go into battle. All along wondering if someone is going to toss a coin and if that day might be their last with their child...It is an unbelievably strange place to learn to live within a reality that is so real it makes you puke...and living with hope, faith, love, peace, and trust...it requires an insurmountable mountain of trust to have a sick child...and you have to climb it.
My dearest of friends, I think of all of you this morning. I have faith for you, I believe--I see your courage, your love, your devotion...I see your pain as well. I see and know your fears...try to bury them away--and as I was told, never give in to them...for they shall not come to pass. I believe, even now--even after letting Robert go. I believe that there can be a day without disease haunting you...I have faith, as you do, that your precious child will live.
This all goes for all you parents out there. Being a parent is the most brave thing any of us can do in this world. I am certain that those of you who read these pages and go to the place that the pain exists, you count your blessings, hold on a little tighter...make that extra trip down the hall for one more kiss goodnight. I am certain of this.
It has been raining for days here. It seems to be raining everywhere. I hope that as these days of dark clouds loom in the distance, sunshine in some form will find its way into your lives.
Does your "sunshine" have a name...is it a beloved child, spouse, friend...a pet? I wonder. I hope it comes in the form of a human being, of someone that you love.
All is well. We are here.
Peace to you, Kathy
Monday, May 26, 2003 9:48 PM CDT
Good day. Actually, it is evening for me. I decided I would write tonight, I do not know if I will be at the computer in the morning. Plus, I have much on my mind...
Jeff took the children and spent a couple of days on the west coast of Florida at the beach. Sounds like they had a nice time; and enjoyed each other's company...it is nice that they can spend time together just with Dad...
I did my usual, stayed busy doing not much of anything...and everything. I have become a master at doing absolutely nothing, and something all at once. I cleaned like a madwoman and my house actually looked like I want it to look for about 2 days. It is so nice to be home alone. I love my children, we all know that, but there is something to be said about peace and quiet. I cherish those moments. I even took a couple of naps. Life is too short to ever finish all the laundry. We all should have our priorities.
I wanted to write tonight to allow myself to indulge in thoughts that seem to haunt me much these days. Of course, they are thoughts of Robert. This morning Jessica and I were discussing how next year for her in school will be so different. She pointed out to me that she does not want to continue in the pattern of missing school that she has found herself in this year...I told her, Jess, everything will be better-will be different...I told her that we no longer will be living under the black cloud that tried to consume us, we are moving on. I insist! Later in the day, as Jeff and I spoke of life and how it changes, I pointed this out to him. The tendency for some of us to savor living under a black clouded life is overwhelming. Not me...I told him, I am not staying there, can't, won't. NO matter what...I told Jeff that I have concluded of late that I cannot afford to suffer anymore losses of love and endure the pain of losing another person I love...I do not think I could stand it. I told him that it is time to put things aside and live. He asked me if that meant leaving my sorrow behind...I said, no-sorrow cannot be left behind. Sorrow does not leave a person, not a sorrow such as the loss of a child. It becomes a sort of badge of honor...a badge I never thought I would have to wear. Sorrow to me must be embraced; to find a way to live in a new way. If I deny that sorrow, than I deny Robert's very existence in my life. So, I must and am learning to carry it along--letting it make me stronger, wiser, braver...a changed person. Jeff understood. We are learning much he and I, much about life and living...we are learning to live our lives apart now...in a different way. A way that has become obvious and necessary to both of us...life ebbs and flows-I refuse to be pulled under by it.
I have started walking alone these days. My early morning walks with sweet "Juliet" have gone by the wayside...I do miss them. But, I go alone. I put on my headset and head out the door...walking fast, brisk steps...sometimes running...always crying. I take the same path always now. Each time I round the corner and come up on the backside of the children's school and the playground I see images of Robert...and I cry and cry...it is a strange sort of torture, I allow myself to endure.
This evening the image I remembered was so vivid. It was so real. It was Field Day in 4th grade. Robert had been undergoing treatment for a couple of months. He wanted to go so badly. I got approval from the doctors and the school. The vision I remembered was one of him playing baseball. There he stood at home plate. In his red shorts, white long sleeved t-shirt, and baseball cap...covered in sunscreen to keep the sun away from his delicate skin. He was top heavy...his legs skinny little twigs. He was wearing his favorite basketball shoes...he swung that bat with all his might...he hit the ball, and began to run to first base. Robert was an athlete through and through...he ran as hard as he could...his feet got tangled under his top-heavy form and he stumbled right to the ground...the orange clay met him hard...he had to hurt. The school principal was standing next to me, watching and gasping...she almost darted for him...I stood there, not flinching. I knew that my Robert would get up, brush off his chemo-laden frame and keep running...and that he did. He ran for that bag at first base with all his might...and when he made it there, he did not care where that ball had gone, did not care that he had fallen and was covered in dirt with a skinned knee, he only cared that he had made it to the base...he turned and looked at me with his very chubby steroid face and called out to me "Mom..." did you see that...I did it, I ran..." That was Robert, nothing stopped him from getting to where he wanted to go... nothing.
I saw that image, felt him hit the ground as I rounded the corner on my walk tonight. I knew I could not run to help him and pick him up, I knew, as I knew at that moment, he had to do it himself. That is life. Some things you just have to do yourself, and living is one of them, no one can live your life for you...try as they may, no one walks in your shoes, breathes your breaths...
I thought of all of this as I walked and cried and desperately longed to hear my son calling my name one more time...to hear that call for "Mom"...I thought, "Robert, I have no idea where I am going, or how I am going to get there..." I thought that no matter what I will find my way. I thought that I have 3 very good reasons to brush myself off and get up and run...Jessica, Christina, and Matthew...they are all that matters. Okay, maybe I should consider myself in there somewhere...I am beginning to see that, it is a new concept for me. Robert understood how to love others, and himself. He understood that in loving others and loving himself he was a happier boy. He never shied away from being a friend and letting someone be his friend...
I will continue to walk past the back of the school yard...I will continue to see the images of a boy who loved life. I will continue to cry, and live with sorrow...
I may be going at this on a new path these days, but, everything is different, everything. We all must find our own way in the end.
All is well friends, truly.
Peace, Kathy
Friday, May 23, 2003 5:36 AM CDT
Good day friends...Friday...so I think I should write a song about Fridays. Finestone, come up with a tune for Fridays for me would ya! Or better yet, the ever famous father to Double M could write one...or even Christi? Scare me friends...this could get really scary.
I have received an official request from my beloved 13 yr old daughter--the ever enchanting Jessica. She has requested that I dedicate today's post to bragging on my children. Apparently one of her pet peaves is to be around other parents when all they do is brag on their kids and to not have me around to brag on mine! I have told her that my children are so amazing and already famous that I do not even need to brag on them because their talents speak for themselves...anyway, I shall brag for her!
Yesterday was a lovely day for us all. Rained like crazy, but those Charlton children shined through! It started with my early morning parent teacher conference with Matthew's kindergarten teacher. Imagine the ideal image for a kindergarten teacher-are you thinking very pretty, blonde, dressed impecably, articulate, very intelligent...well, take off ten pounds, sculpt the body and you have Miss Becky! She is very good at her job, no mincing words, no points not made-she is an excellent teacher...anyway, I am supposed to brag on Matthew, sorry I digress. Miss Becky has been very excited about Matthew and his progress all year long. All along she has been telling me that he is a very smart little boy. Finally, she showed me just how smart. Matthew has scored the highest on the reading test for the year; which means he is reading on a 2nd grade level. She is beyond impressed with his ability to comprehend what he is reading as he reads it. She says that he is a true leader in the class; and that he has even started telling her that he does not want to get -0 all the time because it is okay to get one wrong sometimes. She says he is the first child she has ever wanted to tell the parent that she feels is truly gifted. I know that she is completely smitten with this curly haired surfer-type charming little boy...but, she would never let that affect her academic assessment. I was and am so proud of him! As Jess pointed out to me we never even read to him or taught him anything (Jessica used to teach Christina all sorts of things when she was a baby)...hence, being truly gifted, he figured it out on his own-in the midst of complete chaos and utter loss...way to go Bubba! One of the first things he told Miss Becky at the start of the school year was..."I do not even know how to read..."
Then the day moved onto the evening with the school talent show. Christina did a number in it. She was delightful. I could see how completely nervous she was; but, she sang and danced and did her thing! She was the first one to perform so I really felt for her...the crowd was not loosened up or anything. She did a great job! I of course was beaming like a fool, but hey that is my job! She did another number later in the show with some other 2nd graders and she cracked everyone up with her expressions and such during that number. It was awesome...I am planning on posting some photos on the page sometime this century! It was extra special for all of us to be there together...the Mimi's were there. Our extra special guests were the Mathis'. Mitchel the infamous Double M came to see his gal perform! Kaleigh, Double M's little sis, I think was hoping to take the stage with Christina. It was so wonderful of them to join us; and I might add, what a cool kid Mitch is to sit and watch his gal in a Talent Show-with no wrestling involved! Christina will be a star one day...she loves the stage! Combine that with her beauty and brains, and we are all in for a treat!
So, onto bragging on Jessica. I think that this is pointless :). I mean you guys who read this page already no how remarkable that kid is...right? You guys have watched her battle demons, kick their butt and get up and brush herself off and face another day...what could be more awesome than that! Well, I must admit the kid has me cracking up lately. Last night I was reading emails, and the next segment of "Wild Kingdom" was happening in her bedroom. I could hear the beasts wrestling and growling at each other...it is beyond annoying; and then I hear Jessica. She is hollering at these wild animals to get out of her room...finally she yells at them "Why can't we all just be friends!?" "Why can't we all just get along...?" I cracked up! I am so proud of the fact that not only is she going to school and accomplishing that which a few short months ago was paralyzing her--she has a sense of humor back! Thank God! Seriously...so, she is up in arms a bit these days, feeling the brunt of her missing so many school days. Poor Jess, she did not get her schedule for next year in on time, so she cannot go to the end of the year pep rally. As she put it, I did not get to do any of the fun stuff this year at school...and now her schedule for next year is suffering. I am so proud that even though she is paying the price for missing so much school due to her suffering, she is not giving up! Nor is she begging Mom to fix it all for her...even though I would if she wanted. Her test scores are high and she is muddling through--looking forward to next year!
So, there you have it a day in the life...of the Charlton children. How famous they are--how lucky I am--we all are to know them.
I think I will spend this day, this semi-dreary Friday thinking on such lovely things as these lovely children. I will ponder their beauty, wit, and brains all day...I will be smiling indeed!
Thank you for stopping by...
All is well, see I told you.
Peace, Kathy
Thursday, May 22, 2003 5:44 AM CDT
Good day. I am here.
The children are doing so good. This makes my heart sing. I was just reading on another CaringBridge site about how it was that Jesus came to us as a man; fully man, fully God...co-existing together...well, pretty much that sums up my life these days...living with a broken heart, while at the same time knowing that it can sing at the sight of my three other children. It is a very strange and unusual way to live.
I must admit, anyone who has known me for my life-knows that pretty much that is my way. I tend to carry the weight of the world on my shoulders, not to be a martyr mind you, but because people and their lives fascinate me and intrigue me...and when you love people, you tend to feel their pain. Life is painful. Life is joyful...the two ideas co-exist to give us what we have in this world. There really is no way to avoid pain; unless you are one that simply chooses to ignore it...then you are basically a liar...if you know what I mean.
So yesterday, feeling blue beyond words, I went to work. That is always an interesting thing to do when you are depressed, let me tell you. My job requires a polite, smiling face. It requires me to be ready to give direction, take direction and generally always involvs seemingly pointless activity. It is a great job! There are always over a thousand people that I face during the day...yesterday was a graduation. A milestone in life for those who attempt college. Yes, I know, I will never see Robert face any other milestones...I know it all too well. It is my life; yet, I watched as many others proudly finished this accomplishment in their life...and they should be proud. They should savor every moment of their life and be proud.
Then I drove home...as I rounded the corner there they were. The children. All one million of them...they seem to be multiplying! My two little ones and the neighbor's children soaking wet running around in their bathing suits. I pulled up, with tears in my eyes at the sight of them...my children. They all came running to my car..."Miss Kathy, Miss Kathy...Mom! Mom!" "Can we come down to your house and jump on the trampoline with water..." "We are hungry can we have a snack, can you make us popcorn...?" Each one of them gives me kisses and wet hugs...a broken heart that is smiling at the same time...
A broken heart that can live broken. A broken heart that can learn to be blue while the sun is shining...a spirit that knows the reason I got up this morning is because my Lord saw fit to give me the strength to do it...and because He saw fit to send three other children that need me to be their Mom too...
Thank you for following along. Life is truly about choices, and allowing those choices to compliment each other and co-exist and in the end we might just get to the last day of our life and realize we truly have lived.
All is well-Peace, Kathy
Wednesday, May 21, 2003 8:29 AM CDT
Hello friends.
Sorry there will be no musing or rambling here today...it seems that a trip down Robert memory lane last evening with two of my most favorite Mom's has taken its toll on me...
I am certain I will be back...
Peace, Kathy
Tuesday, May 20, 2003 2:00 PM CDT
Hello friends...yes, this is an odd time of day for me to be writing...all is well. I was simply not able to get to my computer this morning...
I must say, I missed something really cool...Megan, perfect stranger that you are, thank you for writing me. I am continually amazed that anyone would be curious of this life we are trying to lead...I guess this is a sort of reality show unfolding! Totally unscripted, unpredictable and full of twists and turns...and how lovely to think that you all ever get my humor! Delightful!
For me the realization that there are truly so many who do stop and smell the roses, gaze at the moon, take it all in every day and moment of life, is so encouraging. It is way to easy to get away without living this life that we have been given. I mean there are accountability partners for all sorts of things, but are they out there to check to see if we are actually living and breathing...okay so they may want to make us accountable for going to church, and being honest and such...but, who can truly make us accountable for how we live each day...who can really make us accountable for that which we tuck away in our hearts and is in our minds at the end of every day and as we try to sleep...No one! It is up to us, our responsibility.
Not only can no other person truly hold us accountable for how we live our life, we cannot truly hold anyone accountable for how they choose to live theirs...especially someone we have chosen to love. That is a whole other subject...choosing to love, means choosing to see the person as they are and in spite of all of it, choosing to love. I am blessed beyond measure to have the privelege of having people in my life that have done this with me. My kids are at the top of my list. They truly know me...they know the good, bad and ugly of me...and they love me. Cool, very cool!
So, Tuesday--an ordinary day--be non-ordinary in it! Peace friends...
Kathy
Monday, May 19, 2003 5:37 AM CDT
Hello friends...Good day. Forgive me for not posting this weekend. How nice to be so busy with life and children that sitting down at the computer is not on the agenda.
A request has been made by a couple of my lovely friends to put a disclaimer at the top of journal entries such as my last...a come armed with tissues disclaimer...I was a bit hesistant to share my personal journal, it was truly from my heart...
So, this weekend was so full with the children. Friday night I spent some time with just Matthew and I. He got stuck running errands with me. It only cost me the price of a Yu-Gi-Oh deck to have the pleasure of his company without too much complaining...a cheap date! Saturday, Christina and I headed down to watch her "boyfriend" the infamous Double M play baseball. It was so much fun...by the end of the game I was yelling and cheering the kids on and Mitchell was the only one on the team I knew! I get a little excited at these types of events...I do not get obnoxious. It was a bit surreal to be watching a baseball game on the 6 monthiversary of Robert's passing...he last played baseball the Fall before he was diagnosed...it was quite fitting and honoring to him to be there in that place supporting Mitchell and his family! Our pleasure...they kicked butt, by the way...
Saturday night I went out, in public...Make-up, real clothes, the whole nine yards! I went to a fundraiser. It was very nice. I saw so many of my beloved nurses and even the very delightful Dr. Gowda was there...the fundraiser was hosted by a group that brings all sorts of wonderful things to the kids on the floor at St. Mary's and they constantly try to fill the gaps where others miss something the kids need...this morning I will go drive a golf cart for them at their golf tournament. Should be interesting.
I spent alot of time talking with a Mom I met last fall upon our return from St. Jude. Her sweet baby, Jalen, is not doing very well these days.
Jalen will be going home with Hospice care tomorrow...how very strange to be in the midst of a "party" discussing things of Hospice and choices that a parent faces in times such as this. Jeanette, Jalen's Mom, was brought to the function by a couple of the nurses. They literally dragged her away from the floor...they pointed her in my direction and I am very glad.
Sunday was busy with work and more kid stuff. Christina finished a Triathlon. We got up very early, and her and about 200 other children completed the event. Her best buddy Jordan was the one who got her started on the whole thing. It was awesome. At first as everything was running way behind schedule I got frustrated...then it became obvious that the reason everything was so out of whack was because they only expected 80 kids and had over 200! Christina swam 4 laps and ran 2 laps and biked 2 laps...I do not know the distance, I only know she came in 4th place for her group! I was so proud of her...she road Robert's bike in the race, very fitting indeed! I know if he were with us, he would be racing, and I also know that whether we could see or hear him, he was cheering her on! Next time, I will be prepared...I will have caffeine on hand! :)
Jessica, the ever industrious one, tore her room apart and re-arranged it! I came home from work and there it was...she is her mother's daughter, poor kid! :) It looks so cool, and I think it is awesome the way Jess likes to create her own space and knows how to make the most of her room. The only drawback is that her Prince cannot sleep under her bed, but now he can climb up on it!
So, off for another week. I missed the eclipse, but in our neck of the woods we had the most amazing moon in the sky on Friday night...Matthew and I were on our way home, and as I weaved around the corners of the neighborhood we would strain to see it...I told Matthew that I think the "man in the moon" Robert put the moon in the sky just for us to see! He agreed that Robert must have done that for us...I came home and ran in and made Jessica come out and gaze at the moon as well...
Remember...gaze a little at something. I am one to believe that those things, a beautiful full moon, a beautiful sunset, the stars in the sky...I believe that those are true signs from our God that He loves us and is thinking of us...so, please as you gaze, praise Him for His thoughtfulness of us...
Peace my friends...Kathy
Friday, May 16, 2003 8:20 AM CDT
Good day friends...This is from my journal from Thursday night. Peace to you, Kathy
This day I find myself realizing it is the eve of 6 months since Robert left us. Six short months ago-he was here.
At that point we had no "real" hope-only that which we desperately chose to hope in our heart of hearts. We had begun to prepare for his departure. Family was all around. Friends came over-hoping for a glance of the amazing Robert that we all knew would be his disease...
"I listened to every breath, every mumble, every sigh. I soaked you with cool rags to ease your fever-always at 105 degrees at that point. You were in such pain, suffering so much. Struggling to breathe, not complaining. Wanting only milk, your water bottle, a Slurpee...You slept with your water bottle as you tried to cool your throat. Your voice was gone. You could not move without help-you bled all the time from your bladder...You held my hand so tight, as though you never wanted to let go. I laid next to you and you would put your head on my shoulder. I studied your face, your eyelashes, your hands...the moles on your face, the feel of your hands...the shape of your feet. I felt your hair against my cheek, and took as much of you in and memorized everything I could. I never wanted to not be able to remember you, hear your voice, your laugh, feel your hugs--the feeling of holding your hands...
Then you slipped away- you left us. So gallantly, as a champion choosing a new battlefield. I watched you ebb away-I felt you go-I knew that you were leaving.
I touched your feet, they were cold. Your legs were cold too--you still tried to breathe. Sleeping like a baby. There was no twitching, no holding onto my hand--just peaceful sleep, deep and sound. You seemed to have already gone by then. As though you had left the shell that was your body behind and gone ahead.
I felt that you looked back and could see us there--bidding you farewell--knowing I knew you were gone...
I still see you the moment you were born. Just over twelve years ago-I see your tiny frail form as it emerged from me...I watched you come into our life. I knew of your arrival, I felt you coming. In turn, I knew of your departure, I felt you leaving. It was as though I birthed you again with a different pain-a pain so intense that in the end did not bring joy...a pain that knew it brought with it your death...
Pain to bring you to life-pain to bring you to your death...then you were gone.
Now only a memory, a thought...a spirit.
I love you my son, my sweet Robert Mitchel--Mom"
From the song...'Hold On' from the CD Streams...
"Hold on to me; hold on to my Father's hand...so the flowers grow and grow in the desert sand...and the crystal tears fall and flower in the barren land...till you feel the sunlight shining on your skin and all that once was lost in you is alive again...Hold on to me...Hold on to my Father's hand...hold on to me...and your tears will carry you to a peaceful place, where the wall around you winding you in His sweet embrace...Hold on to me, hold onto my Father's hand.."
Thursday, May 15, 2003 6:08 AM CDT
Good day friends. I am sitting here, running late...I must go "kick the cribs" so to speak to get those those munchkins moving!
I am sitting here, trying to figure out which room has the hidden pile of poop in it--the smell is awful! I mean I already cleaned up two messes! How much can one dog mess in one night...give me a break! :) I am so glad to have a fenced in yard to kick those critters out to every morning.
It is so peaceful here right now, I hate to wake the children...listening to the birds as the morning sun rises is so nice. I also love to hear the trains in the morning...the dogs barking will make me nuts, but the other parts of nature are so peaceful!
Not much new here. I am waiting to hear about a wonderful job possibility. It would be working with people, helping oncology patients-children, and it would be a very worthy cause...I will keep you informed. I do not know when I will receive word about the project, but you will be the first to know! School is winding down. Christina is in the school talent show next week and I am so excited for her! She had to audition for it, and is too cute performing. She will be singing a Dixie Chicks song...Jess is plugging away. Matthew, he is still that sweet little guy as always. Life is good.
I must admit, the 6 month mark is approaching too fast...time has not helped my heart. Sorry to say...it is a different kind of pain now. A more real, defined, consistent pain I live with now. I am learning the triggers, and the times I can tolerate it...it is a process.
Have a lovely day-I hope there is some sunshine in yours today...
All is well. Peace, Kathy
Wednesday, May 14, 2003 5:33 AM CDT
Good day friends. I have been instructed to share this little tid-bit of insight into life from my beloved Jessica. We were watching t.v. last night and discussing WalMart...as we watched one of their commercials, Jessica came up with this one...she said, "If Wal Mart's prices keep getting lower everyday, than how come nothing there is free!?!" She decided that was one for the masses and wanted me to put it out there for you all to ponder...
Last night me and the "little ones", as I fondly refer to Matthew and Christina, went to the Mathis's for pizza. The kids played and played some more...The Finestone's were there. We have quite the little group of families (from the hospital) in our area that we are such good friends with. It is so wonderful- strange, but wonderful (actually the only thing really strange about it is Scott Finestone!). There is about 10 of us that enjoy getting together on a regular basis. It is amazing to me that we have found each other. Truly a blessing to have found people that not only can share such an unusual bond, but, that we actually like each other's company and "hang out" together.
I can remember feeling for so many years I needed close friends. I remember going to church and home groups and trying to make and have friends within these areas of my life. So, believe me I can appreciate the blessing that is these new friends. We do not go to church together, but man do we have faith! We actually discuss, almost debate things of God. We are a group of people who truly understand the frailty of life and we allow ourselves to share in that idea and have managed to establish a friendship. So, if you are ever in West Palm Beach-and you are fortunate enough to be here during a week stay for the Finestone's-we will invite you over for pizza! Actually, the Finestone's are the kind of friends that would make the almost hour long drive down just to visit friends.
What can I say, I am learning alot about life these days. This, of course, is a good thing!
I want to leave you this morning with a report on Prince. Well, I am happy to say that he is growing and healthy. Jessica was delighted to see that on Martha Stewart the other day a feature on those dogs. He is one smart little whipper snapper. I have never seen a dog this smart. I talk to him all the time and he sits there with his little head cocked to the side listening! He wakes me up every morning. I can't wait for him to figure out his weekend mornings. Don't get me wrong, he is a monster. He definitely tries to rule the roost! He barks at Angel and does not let her eat; he barks at her if she is laying in his favorite dirt spot by the back door until she moves. He lives to terrorize the cat, which the cat secretly loves! Needless to say, he is a wonderful addition to the family, and don't look now, but I have not had to clean up a dog mess in two days! HA!
Have a lovely day, and take good care.
Peace, Kathy
Tuesday, May 13, 2003 5:45 AM CDT
Good day friends. Wow, it is the middle of May...almost 6 months since Robert left. UGH!
These days I am reminded of him constantly. I drove to Miami yesterday to visit with a friend and take her to the airport. On my way down I-95 I drove right by the huge Outdoor World store where Robert did his Make-A-Wish. I also was reminded of the trip down to the special dinner where he got to meet his favorite fisherman, Jose Wejebe. I allowed myself only a moment to think back to that night...to how wonderful those folks were to Robert...how he tried so hard to be happy and enjoy it...I remembered that I could seemingly feel the pain he was in and I myself could hardly bear it...I could only go there for a moment. Those last two trips break my heart to think of them. Just driving past that place almost made me want to puke. I now know why making that drive while Jeff is working has been so difficult for him...why when he travels that way he must find someone to talk to on the phone to help him get through it...Robert died within two weeks of his wish. Unbelievable, unbearable...unimaginable-yet, he is gone.
We are here. Tuesday, a day for school - a day to keep appointments, a day to do laundry. A day to maybe hang out with some friends and their kids and share a pizza. Just an ordinary day...without Robert.
My friend who bid me Mother's Day greetings online the other day, said she had hoped that Robert would send me a sign that he was watching over me on that day. Well, I forgot to share with her what that was. Rebecca Finestone and I were sitting at the table out in my Mom's yard. As we talked I looked up and there was a bluejay. Just flitting around the tree; he did not seem to mind that so many of us were around. He hopped onto the birdbath, and splashed about a bit for us...I said to Rebecca, look a bluejay-Robert loved bluejays...she said I know, I remember you telling me. I told her how my friend was hoping Robert would send me a sign-Rebecca agreed that bird splashing about in the little birdbath in the midst of all of his family together might just be that sign...that he was there, watching and enjoying us.
So, no great words of wisdom, no lofty anecdotes from this Mom who has a tendency to ramble...just another day-an ordinary day...Tuesday no less. Have a lovely, ordinary day.
Peace, Kathy
Monday, May 12, 2003 5:45 AM CDT
Good day. It is a new week. Wow...the middle of May. Time just seems to fly by these days. I am looking forward to summer and time with the children...I figure by the end of the first couple of weeks I will be wondering when school is starting again!
I trust you Moms out there had a lovely day yesterday...filled with sweet gestures and lots of love from your babies! I hope so. Christina woke me up at around 7:15 with the sounds of her in the kitchen cooking. Then the smell of burnt toast really got me going...she was too cute. So excited that it was her day to spread more sunshine and love on my life. She appeared around 7:15 to announce that breakfast was ready-toast and cheese grits-and that I must get up and eat it...I asked for a few more minutes...she obliged. Only to re-appear to inform me that it was getting cold. I asked if we could re-heat it in another few, she agreed. Finally, she came back and asked if I would mind if she went ahead and ate it...I thought that was a good compromise. I got up around 8:30.
Jeff took the children and went out to lunch with his Mom. I took some time to visit a friend at a bakery and had decided to venture up to the infamous O2Peds floor at St. Mary's to bring some goodies, and see my wonderful friends the nurses up there. Jessica reminded me of my Mother's Day present last year...Dr. Gowda sent Robert home for me on Mother's Day-I had forgotten, she remembered it so well. I have been thinking of that story and that floor all week. It was nice to be there...to visit with the nurses and get to know a little one and her family.
I must admit, I tried to remember to wish as many as I could Happy Mother's Day. As you well know this whole idea of motherhood has taken on new meaning in my life...
In closing out today, I also keep thinking of those many-hundreds, thousands- of people who are living in such a nightmarish time right now because of the tornadoes. I cannot imagine living with that looming all around me. Nowhere to hide, nowhere to truly seek shelter. If it is coming your way, you can barely have time to move. So far, I have not heard of anyone I know personally that has been affected. Stay safe, and know that we are all watching and keeping you close in our hearts and minds...this is a very crazy time we seem to be living in...
Have a lovely day. All is well. School is here again!
Peace, Kathy
Saturday, May 10, 2003 12:15 AM CDT
Good day friends. I know that I have gotten out of the habit of writing on the weekends...but, I wanted to write today.
It is a beautiful sunny day here. Very hot...This morning I awoke and started my usual morning ritual of sweeping the floors. Christina reminded me that she was supposed to go to a triatholon training session this morning with her buddy. So...in true Kathy fashion, I left the piles of dirt in the middle of the floor, and jumped in the car in my psuedo pj's and headed north (I did brush my teeth...) After I dropped off Christina I drove about an hour further to pick up Matthew from the beloved Finestone household. I had taken him up there for a sleepover the day before...anyway...on my way home after driving for almost two hours I began to think of how much my life is like the way I drive...
You see in South Florida all the supposed highways are under constant construction. I drive defensively and not really fast, but you better be prepared to get out of the way to survive...so, you see that is how life has become for me. I was thinking of how as I zoom down the road many times I get boxed in...sometimes there is a big semi truck on one side, and a half built concrete wall on the other, with no emergency side provided...and as I zoom along and come upon a situation like this, I step on the gas-I punch it! I hate to stay next to those big semis, because those suckers sway! I have visions of getting squished up next to the wall by one those trucks! So, here is my point that I realized this morning...in life there is always something to the right or to the left of me...distractions. Like in my driving, if I stay focused ahead and in front of me, punch it into overdrive a little, I should get through it much faster and easier than if I stay where I am and cower and look at the things to the left or to the right of me...
Do you follow? So many people wonder how does a Mom keep going...sort of like the realization that for the rest of my life I will live with one less child in it...well, quite frankly--I suck it up, look forward...gun the engine a little when necessary-or leave the pile of dirt in the middle of the floor, and keep going...straight ahead!
So...as some have been saying on certain pages in this caringbridge community...FORWARD...you may have to suck it up, it may be with a tear stained face...or it may be because there is sunshine beckoning you on...but, do not look to the left or the right, and keep going. WE will all get there, someday!
Peace my friends, Kathy
Friday, May 9, 2003 10:19 AM CDT
Hello there faithful friends...sorry I missed you this morning. I worked last night and the kids spent the night at Mom's...I got up and out early and headed over to fetch the young-ins...Jeff, was out of town...
Yesterday, I found myself thinking of how sad I had made up my mind to be today. I was re-organizing the kitchen silverware drawer...I was just a boo-hooing away. Sniffling, gasping, gulping, the kind of crying that makes your eyes swell shut...I was realizing that I have been sad for so long. That I have been shedding tears for a long time over Robert and life...as I boo-hooed away, I thought of my best friend from my childhood. I thought of how she has watched me shed many a tear over my lifetime... and then I realized that now, with the loss of Robert-I will always carry a sadness and reason to shed many tears for the rest of my life!
I thought of how as a kid and teenager, tears were shed for various reasons. How throughout life I have shed tears over lost loves, jobs, friends, and over other trivial things. The reality that for the rest of my life, I will forever have a reason to shed tears that will be for the loss of my Robert. The reality that I must learn to embrace this sorrow in order to learn to live again. I have realized that in living I am teaching my young children how to live. In laughing and crying, I am teaching them about life...yes, this realization may seem so obvious to some; but, have you ever anticipated having something unbearably heartbreaking in your life that you know you will forever grieve for--something like the death of a child...it is worse than any pain that a lost love can bring-and it will never go away. That is reality.
So, there I was, gasping, gulping, boo-hooing away...thinking of how the tears seemed to be cleansing my face and my very heart and soul...and low and behold, a knock at the door! When you drive a little red PT Cruiser everyone knows where your car is, there you are...so,I followed my inclination--suck it up and answer the door. It was a very nice neighbor. He was delivering a photo and paper about Robert that was used in a publication for the alumni newsletter from our college...he was delivering it for his wife. Brave man...he noticed my sniffling, and asked me, "do you have a cold..." I sort of rolled my eyes, and said "no", I was just crying...over Robert. He said, "I imagine that happens alot, all the time..." Brave man-he did not even run for the hills...instead he was kind enough to give me the photo and ask how we are all doing. It encouraged me so that this person would not want to run for the hills at the sight of this heartbroken Mom shedding tears over the loss of her son...so many do. It is a pain that stops most in their tracks, I know, I have seen it. Some friends sort of fade away into the background with the reality of life...it is the way for many-it is okay, we all must learn to survive in our own way. I understand, and I do not expect anything of anyone that they are not willing to give...we are all human.
So, it is a lovely, beautiful, hot and sunny day here in South Florida. I have three of the most remarkable, amazing loving children ever to walk this earth! Each of them greets me with kisses and hugs and I love you's even with my tear streaked face and the insanity that is me...they are children,and such an example of how we as adults should accept one another. Never, not once, have they backed down from me when they knew I was hurting...they have stood ready to embrace me and encourage me with a loving hug...just being there. We can learn much from such brave young souls. And I think I am teaching them? NOT!
The tears are not as I anticipated for a Friday...neither is the pain. All is well, and we are here...may you be able to feel the sunshine on your face today-and know that somewhere in the clouds and the heavens above is a boy...and many other brave souls who have gone ahead-left us here-to live our lives to the fullest. They are the great cloud of witnesses...they do not judge, they see it all-and are free, finally free!
Happy Mother's Day to the amazing women of this world that have been brave enough to be Mothers...THE FLOWER BORDER IS FOR YOU MOM'S...
Peace, Kathy
Thursday, May 8, 2003 4:37 AM CDT
Good day friends. I see by the day and time at the top of this page it is Thursday; I will try to remember that. How is it that a seemingly intelligent person such as myself, cannot remember what day of the week it is? One of life's great mysteries I suppose!
I feel the need to clarify one little thing...in yesterday's post I was relaying Matthew's comments while we were at the beach...well, apparently the one about Jordan watching out for the "curtain" may have been lost on a few...he was referring to the very strong "current" and called it the "curtain"! Now, I will not disclose any names as to 'who' it was that missed that one...they know who they are! ;)
Matthew is one of those kids that is full of all sorts of animated, down right hilarious points of views...Just the other day we were discussing chocolate. We talked about how much we loved the stuff! Matthew was quick to point out that though he loved it, sometimes it gets stuck in his teeth. Then he went on to discuss with me the difficulty any child has under the age of about 3-4 in using the tongue to get the chocolate out of the teeth! It was hilarious..."but Mom, a 2 yr old is too little to use his tongue to get the chocolate out of his teeth, I think he could only do it when he is like 3 but definitely 4..." To this day you could ask him, "hey Matthew how old do you have to be to be able to use your tongue to get the chocolate out of your teeth..." He would simply say, "at least 3 yrs old, but 4 is much better!" So, Mom's this weekend as you share your box of chocolates...remember the tongue rule for children under 3 yrs of age...they simply do not have strong enough tongues!
I must admit, I am overwhelmed with the very lengthy wonderful job descriptions in the guestbook. WOW! Mom's out there, take pride in your work--the kids may not seem to notice, but the world apparently does! Thank you!!!
I have been trying not to go down the path that leads to sorrow much this week. (Yes, Shari, I know I have been there...) As I sweep the house and piddle around, I think of the necklace the children gave me last year...all my children! I found myself thinking of the women I knew at St. Jude that are without one of their precious children this year...I thought of the many Mom's still embroiled in the fight for their child's life...there is not one, that would not give their life for their child! NOT ONE...
Last night someone at work said to me, "I would give anything to be 26 again..." I have heard this many times lately from different people. The whole idea of going back in time to re-live, or re-visit a certain age...my response to this person was, "NOT ME!" I can honestly say I could not bare to go back in time...knowing what was coming. Then there is the alternative of going back in time to make different choices. What of that? Again, "NOT ME!" No different choices for my life...that would mean no children, no Robert-no cancer, yes...but, for me, my children are my greatest joy! I could not, and would not trade a moment with any of them...Okay, I would have gone back to sign up to take Spanish as my language in college instead of New Testament Greek! :)
Have a lovely day...I hope that you all more faithful at cruising the caringbridge sites than I...and I know that if you are cruising, you are spreading lovely thoughts everywhere.
Remember, in the end-all is well.
Peace, Kathy
Wednesday, May 7, 2003 4:35 AM CDT
Good day friends. Here we are, almost to Mother's Day. Cruising right along.
What can I say, I am a bit of a softy. I let Jess stay home yesterday. I had some things I needed to take care of in the morning, so we did not venture to the beach until after school and after the other children were home. We took my "fifth" child, Jordan, along with us. I do not know which was more fun, cruising down the highway singing "My Brown-eyed Girl..." or watching the kids get wiped out by the waves! The beach was beautiful. The surf was rough, and the sea lice were out, so it put a bit of damper on it over all...but, we promised to return. We went to the same beach where we sent off the bottles...we did not find any.
I must share this one...We were sitting on the towels all of us except little surfer, Jordan. I was watching as she ran in the waves a bit...Matthew being very concerned starts hollering down to her..."Jordan, do not go in the water, we are not with you...Jordan, get out of the water so the curtain does not get you!" I said, "Matthew what did you say?" He repeated himself and said, "I do not want the curtain to get her..." I assured him the "curtain" would not get her, and that I was watching closely...kids, gotta love them. Jessica at one point told Matthew to stop talking, because he sounded just like Robert. I could totally relate to her point...lying on the beach listening to someone that sounds just like Robert can be a bit confusing...and pull on the heart strings. There will never be a trip to the oceanside that Robert will not be thought of.
That seems to be alot of what I am doing these past couple of days...thinking of Robert. I guess cleaning out the dust bunnies and such, is like getting into the nook and crannies of my mind and heart. Shame I do not have a dust buster to get in there! That is just the way it is...last night I realized that he was here last Mother's Day...I have been thinking of how even at this time last Spring after his relapse we were full of promise and hope for a healing...for me losing Robert is becoming a very personal issue...it is causing me to re-evaluate my ability to be a Mom...sorry, I know that it is not something in question-however, it is a natural response to the loss. This I am certain. As I cleaned like a madwoman last night, with tears coming and going...I realized that my other children were the most important thing in this world to me. Not that I did not know that-but, now to want to be a good Mom and teach them anything of value is so very crucial to me.
That brings up my next point...What exactly am I doing as a parent? Parenting is tricky. I mean you want to pat yourself on the back when the kids accomplish anything...but, for me, what I hope and long for is that someday my children will pat me on the back. It took me a long time to see and really understand all that my Mom did for us. That is just the way in this world. I am working hard to raise children that can stand on their own and live their own lives; maybe I do not want them to ever leave me...maybe I am truly afraid of losing any other children. So, I asked my dearest of friends, "what am I teaching my kids these days...?" Her reply, "you are teaching them that life is hard, that life is really hard-and you face it a day at a time..." I guess as parents much of what we impart to our children is done totally unaware that they even noticed something we had done...children seem to glean that which they want all on their own. It has to do with their individual needs and personalities...
I hope they learn to laugh. Laugh at the wonderful things that can happen in a day. Laugh at themselves when necessary. Laugh at and with friends. Laugh because they finally got that joke that was told to them days ago...
Time will tell, indeed.
Have a lovely day, and thank you all for signing in our guestbook-it is always a blessing to hear from you.
All is well. Peace to you-Kathy
Tuesday, May 6, 2003 4:34 AM CDT
Good day friends. Here we go, another week. So, do you think I should let Jess have the day off and follow her heart to the beach? She is missing the sand and surf big time, says that she needs to feel the sunshine, hear the surf and let the ocean waves wash over her...I can totally relate. I will let you know what happens with this one. I explained to her that we should plan to get a couple of friends together to go on Friday when they have no school--she wants to go alone...now that I can totally relate to!
So, I realize that you do not come here to listen to me brag, or toot my own horn, or pat myself on the back...but, I am going to. Are you sitting down? I actually tackled the hall closet that ate New York yesterday afternoon! I beat it! My kids came home from school and took one look at the hallway full of junk and ran for the hills...I guess they assumed the bulldozer was coming out next and they might get put to work! Now I realize that I am the only one in the house that has been brave enough to open that closet door for months, but, the gloves are off the kids can get their own towels now! I may even make them get the vacuum cleaner out just to show them that it actually works. It was kind of funny, because the girls jumped on the trampoline with the hose and were soaking wet...of course Christina comes in the house-dripping everywhere-and I hear her down the hall. I holler to her..."what are you doing?" She replies, "getting towels..." I told her no way...the thought of her rummaging about in my newly neatly folded towel section of the closet made my skin crawl. I told her that they would have to drip dry! HA! Hey, it was a very sunny day, and they were not coming in the house...
Who knows, maybe now that the closet is clean, I may get my resume together. Do you think I can use this page as a sort of new job description? Or you guys as a reference? I can hear it now in the job interview...so you do not actually know these people and they do not actually know you, right? I would make such an impression! I hope I get my act together soon, or at least my resume. Putting the dates to my life together is a bit daunting...or maybe discouraging is really the word. Our accomplishments and the way the world measures our lives is so unusual, that I am not certain the fact that I spent the last two years fighting for Robert's life trekking to and from doctor's appts. and hospitals will be of much importance to an employer...oh well, I definitely feel like the Mom who chose to stay home to raise children trying to get back into the work place...
Funny, how there are days that I want to leave this house the moment the children leave for school and not return until they are home. Then there are days, much like the days Jess has, where I never want to leave it...I want to hide in its shelter and stay put. Our homes have a way of being such a shelter from the world around us; they provide comfort, love, and encouragement. At least that is what they should provide. I have always felt like my home is a shelter. I work very hard to create a space and a home that is welcoming to anyone who visits or lives here...Or maybe, it is just the fact that I live in such a hot climate and I love the ac! Is that why I stay home many days...ac? I know that is why I prefer to shop than most other things--the ac.
Of course yesterday as I cleaned out the closet, the reminders of days gone by were there. The last set of sheets I bought for Robert in his new room-I thought of a bonfire, but remembered it was against the code in this neighborhood. Then of course, all the baby blankets of days gone by. Even the first one that was Jessica's...yes, the tears came flowing...and yes, that is why I must be careful to choose those projects when I know I can go into the trenches and come out alive! It is not easy...it is life, and it is a choice.
I want to share some words from Robert's journal with you...
"Sucker Fish" Feb. 12,2002
-Today when schools out we're going to go to the pet supermarket to buy a sucker fish that sucks algae off the walls in your fish tank. Sucker fish are mainly called sucker fish because sometimes they'll suck on the walls for hours and hours. Some people think the reason their called sucker fish is because you can play jokes on them. Get it, sucker fish you call someone that after you play a joke on you. The biggest sucker fish are stergent fish witch is also a sucker fish. It's the biggest freshwater fish in the world reaching about 40lbs it's by far the biggest fish in fresh-water. That's pretty much all you need to know about sucker fish.-
Can you imagine being a fifth grade teacher and reading about Robert's sucker fish...looking up and seeing a boy on chemo, fighting leukemia...nine days after this was written we found out Robert relapsed...
Cancer cannot take your heart and soul and if you do not let it-cannot touch the very spirit that is within you-it can most certainly steal your sense of humor, but does not have to...Robert kept his, Zach has his, so does Mitch, and Kyle and Genna, Steven most certainly kept his...
Live, laugh, and smile-it is a new day.
All is well, Peace--Kathy
Monday, May 5, 2003 11:32 AM CDT
Hello friends. Missed you this morning...did you even notice I was not here? :)
Just a brief hello; had a very nice weekend...very peaceful and restful for me.
All the Charlton children are at school on this very hot, sunny Monday. Here's hoping for another full week at school. It is coming to an end...
Summer is just around the corner.
I will be back in the morning. Take care, Peace-Kathy
Saturday, May 3, 2003 11:35 AM CDT
Hello friends...the weekend is upon us. I hope this finds you well.
So, don't you just hate it when as a parent you do something totally stupid and you have to admit you were wrong? Well, that happens quite frequently for this Mom, however, last night I really blew it! You know the kind of blowing it when you totally read a situation wrong, get really mad start yelling and carrying on, and then slam your finger in a door and get even madder! Oh, did I say that I was acting crazy...well, I was. Poor Jess...I thought she had said something she didn't, it was late, I was way too tired, and bam...it all hit the fan. I hope we can recover, really...we have been doing so well. I have begged for forgiveness, I hope to get it. Such is life-at times...
Not much to report here from the homefront, nice to have a weekend with lots of stuff for the kids to do, and it is beautiful weather here. Work and busy stuff for me...
I will not be online until Monday sometime...but, I will be back then.
Have a wonderful weekend, thank you for checking in...and Jess, please forgive your crazy Mom for her few minutes of insanity...
Peace, Kathy
Friday, May 2, 2003 5:57 AM CDT
Good Friday to you all. Another week has passed...or rather, we have made it through another week. I dare say, this week passed with flying colors-I'll explain later.
I awoke this morning from the sounds of the dogs stirring. My alarm clock did not go off-and the dogs usually awake at the same time I do because they know it is that time. As I crawled out of bed in my half sleepy stupor, I began to realize I had been dreaming of Robert...I thought to myself how I knew I had been dreaming of him, but could not remember the dream. I realized that in my dream I just knew that he was gone and that this is our life now. Half-asleep I made my way here...every moring I let the dogs out and listen to the birds chirping...every morning I look forward to coming to this place. Even this morning, as I stumbled sleepily around thinking, "it's Friday..." I began to recognize that many things are getting a bit easier.
Last night a friend used a sanitizing foam that I keep in my car. It is one that we squirreled away from St. Jude. As she used it on her hands and commented on the scent of it, I put some on my hands and closed my eyes and went back...the scent immediately takes me back to Memphis, to St. Jude. I told her this...she said, oh I am sorry-I said, no it's okay. I told her how I like to indulge in thoughts of Robert, how even though it may be painful, how wonderful that a scent can bring back so memories...
As I stumbled about, another friend came to my mind. A friend facing a seemingly hopeless situation...this friend said to me, these days I awake with this gut wrenching feeling in the morning...I remember why it is there, and then I go on...the friend said to me, "just like you do everyday, right?" I replied, "exactly what I do...everyday." It is amazing what a spirit a human being can have. That we as humans have the ability to suffer the loss of the most umimaginable, and still function...I know that as this friend navigates these tumultous waters, they will find that as each day turns to months, the pulling on the heart does not leave, the sense of loss is always there, but in some ways it does get easier...somehow. Unimaginable loss, tragedy, pain...and we move on--we learn to say as we look at our life, somehow, someway--"it is well with my soul..."
Now onto a much more cheery subject. I was informed last night around 10:30pm by my beloved Jessica, that you all needed to know of her school attendance. Jessica has been in school everyday for the past 2 weeks. She even went to school after being up late one night with a queasy stomach! OKAY! Can you believe that... I also want you to know that she reads your guestbook entries very faithfully. They make such a DIFFERENCE in her day! She even asked me where some of the old faithfuls had gone...ie, Christi, Cheryl, Tom, the unnamed "friends"...she wants to hear from you all...it makes her day. I must warn you, she reads other guestbooks as well. Like that crazy Zachary Finestone's Dad's page! Scott...sign the book dude. Start a riddle on the page...you know I do not have the mind for a riddle, but, Jess does!
So, on that positive note, I am looking forward to this Friday. Looking forward to waking my children-right now as I type this, Matthew is curled up in my arms, he could not wait for me to finish--and sending them off to school...Times are a changing! Last night I walked in the door from work, and Jessica met me in the kitchen, wrapped her arms around me, gave me a big hug, and a kiss and told me she loved me! WOW! How is that for a welcome home...
Have a lovely day, I hope the sun is shining on you today and always...
Peace--all is well. Kathy
Thursday, May 1, 2003 5:46 AM CDT
Good day.
I am listening to a beautiful song in the background..."On Mountains High." It starts out, saying "My heart runs to find you..." This song we listened to over and over the last days with Robert. It says, "On mountains high, I'll praise your name, in valleys low, I'll do the same...and as the river runs to find the ocean blue, my heart will always run to find you..."
I thought this morning of how mountains high seem somewhat far off...and how valleys seem so much more familiar. For me, I have to say that no matter what is going on around me, or within me, I can feel how my heart wants to run and find our Lord. I remembered this morning the many times we walked those halls in St. Jude on the BMT floor. I remember how Robert did what I fondly referred to as the "Robert shuffle." Each time we would round a certain corner we would see a picture board. One day as we rounded the corner, Robert stopped right in his tracks. He said, "hey where do you think that is?" He was pointing to a picture on the board. There must have been a couple hundred crammed up there from all sorts of families...he was focused on the only one of a family in the ocean at the beach. He was staring at it...I remember that the water was so blue, I do not even remember the family in the photo, just the ocean blue...I knew Robert missed home, missed his ocean...when he vomitted up some sort of funky bluish stuff one day, I told him it was really ocean water and that it must be true that he was part fish!
Thinking of him back at St. Jude this morning brought many floods of tears. Thinking of all that sweet boy went through to get home, to live, to see his ocean again...he gladly fought his fight to live...I am so grateful that he got to see is ocean before he left us. So, grateful we got to bring him home as he wished. I miss my son. He was a delight. I awoke this morning to a bed crammed full of kids...I was sandwiched between Jessica, and Matthew...Christina has snuck in on the other side...they are very sneaky kids. Jeff always had to run for another bed when they would start finding their way into our room. On the nights when he was gone, we all always slept together...last night, it was like we were bugs in a rug...
My children continue to amaze me. They are growing and flourishing even now. Every day, every moment. It is a blessing.
So, as the river runs to find the ocean blue...and as Robert longed to see the ocean blue, we continue to flow and be tossed and turned by life. It is the way of this life, is it not? The way that we learn to be better people. One of my professor's in college used to always say, "when you shake a glass of water, water will spill out...when you are shaken, what spills out is what is inside..." I pray and hope that somewhere, somehow, no matter what, even if there is a bit of anger, a bit of sorrow, a bit of doubt in my "glass", that when I am spilled over, a bit of praise, love, and encouraging words come out from me when I am shaken...no matter what comes out, keep going, trying and living.
I want to share a poem with you all from a very special person. Her name is Marieke, she is from Germany. Marieke lived with our family during the time when Robert was first diagnosed. Her last visit here was made as soon as we returned from St. Jude, she had to come over and see Robert. She flew all the way from Germany to be with him and to provide comfort for the children...these are her thoughts of our sweet Robert...
"I want to tell you about a boy
Who brought his family pride and joy.
He loved to fish and dance and play
And lived his life just all the way.
But the Lord decided in his plan
That he wouldnt grow to be a man.
He had for him a different vision
And so he sent him on a special mission.
His task was to spread hope and love
And trust into the Lord above.
While batteling leucemia, without a doubt
He showed each one what life`s about.
He only got to be eleven
Then the angels needed him in heaven.
Like Robert touched our hearts and souls
It should be everybodys goal.
We should cry happy tears and smile
That God lent this gift to us for a while."
In Memory of Robert Mitchel Charlton
April 28, 1991- November 17, 2002
Many warm thoughts to you all this day.
Peace, Kathy
All is well.
Thursday, May 1, 2003 5:46 AM CDT
Good day.
I am listening to a beautiful song in the background..."On Mountains High." It starts out, saying "My heart runs to find you..." This song we listened to over and over the last days with Robert. It says, "On mountains high, I'll praise your name, in valleys low, I'll do the same...and as the river runs to find the ocean blue, my heart will always run to find you..."
I thought this morning of how mountains high seem somewhat far off...and how valleys seem so much more familiar. For me, I have to say that no matter what is going on around me, or within me, I can feel how my heart wants to run and find our Lord. I remembered this morning the many times we walked those halls in St. Jude on the BMT floor. I remember how Robert did what I fondly referred to as the "Robert shuffle." Each time we would round a certain corner we would see a picture board. One day as we rounded the corner, Robert stopped right in his tracks. He said, "hey where do you think that is?" He was pointing to a picture on the board. There must have been a couple hundred crammed up there from all sorts of families...he was focused on the only one of a family in the ocean at the beach. He was staring at it...I remember that the water was so blue, I do not even remember the family in the photo, just the ocean blue...I knew Robert missed home, missed his ocean...when he vomitted up some sort of funky bluish stuff one day, I told him it was really ocean water and that it must be true that he was part fish!
Thinking of him back at St. Jude this morning brought many floods of tears. Thinking of all that sweet boy went through to get home, to live, to see his ocean again...he gladly fought his fight to live...I am so grateful that he got to see is ocean before he left us. So, grateful we got to bring him home as he wished. I miss my son. He was a delight. I awoke this morning to a bed crammed full of kids...I was sandwiched between Jessica, and Matthew...Christina has snuck in on the other side...they are very sneaky kids. Jeff always had to run for another bed when they would start finding their way into our room. On the nights when he was gone, we all always slept together...last night, it was like we were bugs in a rug...
My children continue to amaze me. They are growing and flourishing even now. Every day, every moment. It is a blessing.
So, as the river runs to find the ocean blue...and as Robert longed to see the ocean blue, we continue to flow and be tossed and turned by life. It is the way of this life, is it not? The way that we learn to be better people. One of my professor's in college used to always say, "when you shake a glass of water, water will spill out...when you are shaken, what spills out is what is inside..." I pray and hope that somewhere, somehow, no matter what, even if there is a bit of anger, a bit of sorrow, a bit of doubt in my "glass", that when I am spilled over, a bit of praise, love, and encouraging words come out from me when I am shaken...no matter what comes out, keep going, trying and living.
I want to share a poem with you all from a very special person. Her name is Marieke, she is from Germany. Marieke lived with our family during the time when Robert was first diagnosed. Her last visit here was made as soon as we returned from St. Jude, she had to come over and see Robert. She flew all the way from Germany to be with him and to provide comfort for the children...these are her thoughts of our sweet Robert...
"I want to tell you about a boy
Who brought his family pride and joy.
He loved to fish and dance and play
And lived his life just all the way.
But the Lord decided in his plan
That he wouldnt grow to be a man.
He had for him a different vision
And so he sent him on a special mission.
His task was to spread hope and love
And trust into the Lord above.
While batteling leucemia, without a doubt
He showed each one what life`s about.
He only got to be eleven
Then the angels needed him in heaven.
Like Robert touched our hearts and souls
It should be everybodys goal.
We should cry happy tears and smile
That God lent this gift to us for a while."
In Memory of Robert Mitchel Charlton
April 28, 1991- November 17, 2002
Many warm thoughts to you all this day.
Peace, Kathy
All is well.
Wednesday, April 30, 2003 9:09 AM CDT
Hello friends...good day.
I have a bit of a confession to make. I came to the conclusion this morning as I read the guestbook, that I have taken so much for granted. I realized that as I read the many words and love that is outpoured in those little typed letters, that I am not as strong as I might like to think. I am, and my entire family, is being upheld by the love and support and prayers of many--our God is hearing you all, and He is listening and intervening. He is healing, and leading...I must admit, it may not be in the typical fashion, and some things may seem a bit skewed to those who watch us closely, but He is healing and leading on just the same. Forward, as they say...
So, that is my word to you all this day. I am sorry. May I never live another day taking for granted the love and support and prayers that you all send up for us. You all encourage me to pray more, to have more faith, to love more, live more, laugh more...I am so blessed to know and have the privelege of many friends in my life...believe me, ask my family, it is a bit of a new concept to me...it has been a long time.
All the kids are in school. You see, miracles do happen--all the time, not necessarily the way we would choose...but, they happen just the same. Please embrace them as they come no matter what there packaging may be.
Finally, I want to send out a big HAPPY BIRTHDAY to one of my little brothers...Chris...Happy Birthday Bro!
"Comfort is the touch of God when we thought we were alone in the darkness. It is the promise that the dawn is on its way." Edyn Simons
May the warmth from the sunshine of the morning dawn warm your hearts...
Peace to you, Kathy
Tuesday, April 29, 2003 5:53 AM CDT
Hello friends. How lovely to hear from so many of you yesterday...thank you. What lovely notes and precious words toward our family.
There was one that signed in the guestbook that left me speechless upon reading. I cannot believe that I would have forgotten to acknowledge him on the page yesterday...JIM, HAPPY BIRTHDAY TO YOU! Jim is a special young man to our family. He and Robert shared their birthdays...Jim had taken it upon himself a couple of years ago, before Robert was ever sick, to come on the day of their birthdays and spend time with this little boy who had idolized him while getting to know him on the basketball court. Jim was one of Jeff's first players that he got close with from Palm Beach Atlantic Univ. We have had the pleasure of watching Jim over the years and seeing him marry to a wonderful young woman...and it always touched this Mom's heart beyond words when the day of the shared birthdays arrived and Jim would always keep his word and come and take Robert out on "their" birthday...Jim, it is a blur, but how old are you now? I still remember your 21st! Thank you for how you loved Robert in such a unique and special way, he loved you too...
We all seemed to spend our day yesterday in our own ways. It was interesting to see how we each remembered Robert in the way we wanted to on his birthday. As "fate" would have it, my sweet Jess missed the bus...so, I told her she would have to hang with me for a few minutes and then on to school she went. I bought some special balloons and wanted to take them to the cemetary first thing in the morning...I wanted balloons there all the day. Jessica had no problem tagging along. It is not exactly easy going to the cemetary with Mom on your brother's birthday...think about that one for a moment. So, off we went...and it felt so right that she would be with me. I have always felt like the best parts of my life began when I had my first child, Jessica...and it really fits that I share so much of this part of my life with her...
Jeff busied himself with work. I know that on his long drive down to the job site, he sang and allowed himself to "indulge" in thoughts of his precious son...I am certain he was even blessed with tunes that they always listened to together and enjoyed remembering him...it is kind of cool, but the past couple of days the songs on the radio have reminded each of us of Robert...
We are on a roll, maybe just maybe we have rounded the bend...the kids are all going to school! Now all I need is a job, not just any job...the right job!
Finally, my heart is very heavy for a precious friend fighting so hard...Ryon Rommel. Ryon is Joe and Delores Rommel's son. He has been recovering from a bone marrow transplant and is battling GVHD in the worse way! There are no words to describe how difficult and painful this is for this family...it has been a LONG, HARD battle...please PRAY that he too can round the bend and get some relief. He needs another miracle...that is not too much to ask now is it?
Also, the old faithful pediatric oncology unit at St. Mary's is full of precious ones fighting this week...my other precious friend, Jessica Doyle is in fighting fevers...those of you who know firsthand, there is no place like home, so pray for a fast healing and that these sweet children can get back home...
Peace to you all my friends. Kathy
Footnote...this morning I also find myself thinking of a very special friend. The kind of friend who sticks through thick and thin no matter what...well my precious friend, as another of life's obstacles stans looming in the distance, know this, I am here for you, no matter what-we have been bridges for each other over many troubled waters, I am here for you now, as you so faithfully have been there for me...I love you! Kath
Monday, April 28, 2003 5:44 AM CDT
Good Morning dearest friends...yes it is another week, what a day to begin a new week...HAPPY BIRTHDAY, SWEET ROBERT!
I guess the week actually began yesterday...and please, for those of you who did not get to read Mimi Bunny's poem, please go to the journal history and read it from yesterday.
So, our day progressed. We as a family had set our sights on heading out to the beach at the end of the day. We met at a lovely pier. There were 12 of us who went out on the pier...we sent out about 15 bottles. We carried with us one from our precious friend, Zachary Finestone. We carried one from Robert's "other Mother", Ryan's Mom...we carried our heavy hearts, and thought of our precious Robert. There was a cool breeze blowing, we could see the rains heading our way. It was so beautiful. The ocean was the most amazing color turquoise I believe I had ever seen. I looked down into it and was so amazed at the purity of the color and I knew our bottles and messages would go far. I even hoped that maybe I would find one...
On our way leaving the pier, as I carried my very big "baby", Matthew along the way, I looked at the gate and there stood our precious friends, the Bunkelmanns. Many of you may know of them. Their precious Seth left this place shortly after Robert. They had prepared a message and we had to leave the pier, but we gathered on the beach and the bottle went out to sea. It was their first trip to the beach without Seth. The last time they were there was before his first biopsy...I was so blessd and proud that they had the courage to come out on such a day...to honor our Robert. As Ruthie and I hug each other, I feel like we hold on to each other as only two mothers who have lost their sons could...with great strength, courage and pain. Ruthie and I stood watching the ocean and the children--I could see off to our right Scott and Jeff standing shoulder to shoulder sharing of their boys. It was a moment. We stood there with all of the family...with the precious friends we had made along the way...we waited until it was dark and the rain was chasing us away...we all ran to our cars. Christina said "Mom, Robert sent the rain to tell us he saw us and was happy with what we did." I could feel him all around us, and as my brother Terence and I agreed-he is "Everywhere"...now.
This day 12 years ago, the smallest of the Charlton babies was born. Robert Mitchel Charlton-named after his Grandpa, Jeff's Dad, came into this world at 4:30 a.m. weighing 8lbs. 4oz. He seemed so small and skinny...the cord had been tight around his neck...he was a fighter and precious gift the moment he came to us. The look on Jeff's face as he beamed with such pride that he had his son...that is what I will never forget of that early morning. Jeff's Mom was there, my Mom was there...all were so proud as they held on to him. I thought he looked like "Mr. Magoo". It was the beginning of an amazing journey, an amazing life.
Last birthday, Robert ended up in the PICU. I had forgotten this until this morning. Then I remembered the morning that the 3 doctors stood in his PICU room fearful they would have to intubate him. His platelets were too low. They stood there with tears in their eyes watching their champion fight to breathe. In true Robert fashion, the champion rallied and within an hour had completely turned around and was breathing as he should...he stunned them all. They never did figure out how he survived that week. Robert amazed and has left doctors from around the world scratching their heads over him and his ways...
For us, we always knew he was a miracle. All children are, this one, well, this child he was destined to be "shining with fame!"
Send off balloons, send off a prayer...look heavenward, breathe in the air, feel the sunshine or listen to the rain...for someone as infamous as this sweet boy is truly EVERYWHERE, and is truly famous...so SHINE as you journey along and know that each of us in our own way and our own time amaze and encourage others...
May the grace of our Lord continue to carry us along and may you know His love in your hearts and find peace.
All is well, Peace--Kathy
"...I will abandon my soul to the glory of heaven's control--even the angels fall down and worship the King!" Even the Angels
Sunday, April 27, 2003 8:59 AM CDT
THE FOLLOWING IS A POEM WRITTEN BY MY MOM, THE INFAMOUS MIMI BUNNY...ENJOY!
Hello to All-I have written what can only be described as an ode to a most wonderful boy! Here goes!
Birthdays Are A Happy Time
Birthdays are about sleeping late and
skipping work (Or School).
Spending time doing whatever you please.
(Which is what you do anyway.)
Then you have a sweet, sweet cake,
some friends (with gifts) to celebrate.
But this year won't be quite like that.
Seems nothing is the same right now.
You Father's sad as only Dad could ever be.
His loss too great, we all can see.
He's keeping busy; always off and running
but, he never stops for very long.
Your Mom's been changed,
she's just a shell of former self,
but you'd still recognize her.
(Her precious smile and gentle heart
always were her best features.)
There's the curly haired boy
who calls you "Big Brother"
who I still hold when we talk of
how we wish you were still here.
"Do you think we could climb to the clouds
and throw Robert up a letter?
Would he get it, Mimi?"
Our Chrissy's heart is craving love, needs tenderness
and lots of hugs and kisses.
She's grown too much, too fast, too soon
and shows deep thought and wishes.
You know by now that there's a teenager in the house
She's a hurricane force of strong winds and emotions
who took over your room
and is using your energy to keep us alert.
(As if we would ever dare to forget!)
I cannot counsel enough on Aunts, Uncles, Cousins,
all manner of friends, neighbors & strangers who have learned how to love you and weep when we do.
They chuckle or sigh collectively
with each hurdle we stride.
They've adopted our burdens along with their own.
They've approved of the process that means we go on.
Now I said that Birthdays are a Happy Time,
but we all know that.
Today we celebrate your Birth Day
with you, in our Hearts.
All manner of us do.......................
Mom and Dad, Brothers and Sisters,
Many Mimis, Granpas and Uncles and Aunts.
All manner of Best Friends, Caring Doctors, Loving Nurses,
Teachers, Cousins, Neighbors, Puppy Dogs, Angel and Prince,
Bald-Headed Buddies, Old Fishermen, Young Ministers, Basketball Players, Coaches, Many Young children, too.....
but wait, I almost forgot
The thousands of Listeners and Readers and
Prayer Chains Full of People who grew to love you even though they hardly knew you at first;
but now pray and care more because they got to know you through your illness.
You cancer gave many a window into the soul of a brave little boy, who was really a man,
who knew how to laugh and make others smile too.
They got to know Robert.
Our Precious Robert.
Mr. Robert.
They got to know You.
So run along now.
Enjoy your day.
Spend it fishing in streams filled with Rainbow Fish.
Color the clouds and form them into funny animals
so that we can see your artwork.
Fill up the bands of colors for the rainbows we'll see.
Put glitter and lights into the stars so they'll twinkle.
Blow us a kiss in the form of some raindrops.
Race around heaven and surf in the ocean.
Ride the waves with the dolphins into the shore.
Find a smooth, transparent shell in the sand
and put it to your ear and listen,
Maybe you will hear us singing:
"HAPPY BIRTHDAY TO YOU!"
Happy Birthday, Robert,
We Miss You.
Barbara Waldron--Mimi Bunny
Peace to you dear friends...I will be back, Kathy
Saturday, April 26, 2003 8:29 AM CDT
Hello friends...It is a rainy, very rainy Saturday here in West Palm...I hate to admit it, but I love it-it suits the day. Sorry Tom!
I also hate to admit it, but isn't it a pain, when you have this plan in your mind for what seems like months...and then forget to follow through until the last minute. I really need to try to stay focused on one thing at a time...I am the queen of "multi-tasking", unfortunately, lately it seems that the only thing that really gets finished is the cleaning of the kitchen! In other words, I have not figured out a time for the beach trip tomorrow, need to check the tides and a location...I would hate the bottles to wash up right there in front of our very eyes...Also, I want to post what I want written on Robert's papers for the bottles...
If you are able and are planning on joining our little ritual, maybe you could type your words on a page with Robert's photo from this page at the top. That is what I am planning on doing.
On each page I want to prepare it will say:
Robert Mitchel Charlton
April 28, 1991 - November 17, 2002
Robert means "shining with fame"...son you do SHINE! Robert's love of the ocean and fishing can only be matched
by his true love of life and family. Nothing made him
happier than being with his family and friends at the
beach! He felt free there...and now we honor him on this day, his would-be 12th birthday!
Happy Birthday, Robert Mitchel, Bubby, Roberto, Roburrito...
We love you and will never forget you--keep SHINING
"In the same way, let your light SHINE before men, that they may see your good deeds and praise your Father in heaven." Matthew 5:16
Robert's light shined ever so bright has he fought to beat his leukemia...he was too young to have to face such a battle, and too young to die...but, we all know, he knew how to live!
Peace to you all, Kathy
Friday, April 25, 2003 7:42 AM CDT
PLEASE CHECK OUT PHOTO PAGE!
Hello friends. It is FRIDAY! I am delighted to report, that ALL the Charlton children are in school...it is a good thing, indeed. Jessica, way to go girl-you should know that no matter what I am proud of you--way PROUD!
Wouldn't you know it is a gloomy day out...I have been handling Fridays much better. I am continually amazed at how seasons, time of day, and the things like the moon, can affect me and my psyche. Especially when it comes to remembering a loved one...the wind the way it blows, the sun the way it feels on my face...the sound of the rain. It is all new, and strange-yet, so familiar...what can I say, I am a bit of a mushy mess most of the time. I am learning to channel it all, and am happy, and remembering as my sweet long lost friend, Sherri Broderick said--"laugh everyday!"
This weekend is heading into to Robert's birthday on Monday. The plan at this point is to gather family, and anyone else who would like to join us...at the beach on Sunday afternoon. Robert's birthday is Monday, but Sunday the day he left us, seems to fit the honoring of the day for me...so, we will gather at the beach. Call me if you want to know which beach and time...not sure of that yet. I would like to send some bottles off in the ocean with a message honoring Robert and such. I will have our address at the bottom and will request anyone who finds a bottle to send the note home to us. The timing of this is a bit uncertain, as I need to check on the tides...So, if any of you should find yourself near a body of water that leads to the ocean and would like to join us in our ritual...please do, and please let me know...
I am also, planning on sending up helium balloons on his actual birthday. Robert loved balloons before he found the ocean...as an infant that sweet boy could entertain himself with a balloon for hours! I am certain the Mimi's remember this all too well. It is the secret to shopping with a toddler in our house. So, I will attach a message and anyone else who wishes to attach a message to a balloon who cannot send off a message in a bottle, please do...even if you do not attach a note, or a balloon or a bottle, I would ask that you would take a moment on Monday, April 28th, 2003-look heavenward, toward the sunshine, or the stars--thank God for sending an amazing boy named Robert Mitchel Charlton to us...thank God that he lived, laughed and loved for 11 years--thank God that Robert left such a mark on our hearts in his short stay here with us...and if you believe that Robert is listening, tell him that we love him and miss him...and will always remember him and his ways in our living. That is how we must honor this very remarkable young man--in our living.
Robert's name means "SHINING WITH FAME!" I never, ever would have dreamt or ever imagined that he would not grow to be famous...he seemed destined for it--Robert came into this world famously at 4:30 am...maybe that is the reason I wake so many nights at that time, the time he arrived and not because I knew it was the time he began to leave...
My son, even now you "SHINE WITH FAME..." To me and those who love you so dearly, you are famous, a hero, a star!
God bless you all...
Truly, as Robert said in a dream to our friend, "I am alright, and I am finally free!"
All is well--Peace, Kathy
Thursday, April 24, 2003 8:52 AM CDT
Good day friends...I think there is a rebellion on my hands! It is not quite what you think...all the kids are in school! I think this might just be a record...did I hear a collective YEAH! I just know Jess can make it the whole week...how cool is that, as Moms we have to learn to be grateful for the big things in life! I think it is her new haircut; it seems to be breathing new life into her!
So, the rebellion? Well, as I dropped the "little ones" off at school, and ordered my usual, "kiss Mom!" Matthew gave me the old, "how come we always have to kiss you?!?" How dare he...can you imagine, he is only 6! I mean this sort of rebellion is not supposed to begin until at least 9 or 10...he proceeded to inform me that "I think we should only do hugs!" I said no way Jose...it is kisses or I hold you hostage...of course, in this family that is not really a threat, apparently the kids think "skipping" school is an option! Well, I did get my kiss, and it seems that the rebellion has been kept at bay for the moment at least...it did bring back many memories of other times and other Charlton children rebellions!
I remembered when Robert was just 2 yrs old and I looked across the room to Jeff and told him that "Robert is the kind of kid that makes you get up and make your point and follow through with your request..." You know the type, there are those little ones who are so compliant and agreeable and do whatever you ask...then there are those that are born to run free! Can you imagine, a 2 yr old who has his own agenda? Well, fortunately the rebellions so far in this house are manageable and I can hold my own...now Jess, as you read this, DO NOT get any bright ideas, I can still take you! So, then I remembered how when Jess and Robert were little and the only two; back in those days long ago, my routine was that I got up about 7am to "sneak" out to the grocery store hoping to avoid taking any children along for the ride...anyway, many a morning Jessica would "catch" me in the drive and come running out after the car! That was always fun...having a 3 yr old chasing a car driving down the street...wild hair flapping in the breeze, I dare say she was probably in her t-shirt and underwear! One of my favorite grocery store memories was the one of Robert when I returned home from the store at about 7:30 and there he was...standing in the front bay window with his arms stretched out far in his fruit of the looms! It was quite a sight! I could not believe it! It was hilarious to see this kid clinging to the window for dear life...the window was about 3 feet off the floor in the livingroom and I have no idea how he managed to balance on that little ledge--but there he was stretched out for the whole world to see, underwear and all!
This brings me to my final point...apparently there is a bit of a "rebellion" going on in the guestbook as well; a rebellion toward ham recipes! I mean what is going on...Tom, did you get enough ideas from Juliet yet? So, I think in honor of my lack of cooking...you all should keep the recipes coming! Unless, of course, you want to deliver the food yourself...that is always an option...now there is an idea; instead of sending me cooking hints, send the whole meal and we will let the kids put it to the test! Now there is an idea whose time has come...Mom, are you reading this?
Okay, enough already...basically, any recipe with vegetables is not an option for Matthew...actually, any recipe that does not contain sugar and chocolate is not an option for Matthew, so we will not consider him! He can continue to eat his "cheese and bread, for 10 seconds in the microwave..." sandwiches.
Have a wonderful day, Peace to you all, Kathy
HEY GUYS...LITTLE MIX UP WITH THE SONG...SORRY; I AM TRYING TO GET A FAVORITE ONE OF MINE AND ROBERT'S ON THERE...CLOSE BUT NOT QUITE...
Wednesday, April 23, 2003 6:03 AM CDT
Good day dear friends. We are halfway there...that is through another week. Thank you for all the well wishes for Jeff on his birthday...
I found myself thinking this morning of how it is that I manage to have any "faith" left in me...I began thinking of the part of Robert's story where an old friend of mine literally bumped into a Mom, in the grocery store, who had lost her son to leukemia. I could just imagine these two women in the line at the store talking about Robert. One a very dear friend who has enough faith to move any mountain, the other a woman who had lost her son to cancer, yet, had enough faith to believe, and I felt that her faith alone could have willed Robert to live. Mary is her name. Mary made it her personal plight to get Robert to St. Jude. Well, we all know that he made it there. I can remember long talks with this Mom and how she encouraged me never to let my faith waiver, or ever allow any negative thought come into my mind. She encouraged me to fight, and no matter what, believe that Robert would live. She shared with me that every day Robert lived it was like her son's death was not in vain, and that her son was living on as well.
Yesterday, I was in one of my favorite haunts of a store...I began to talk with the woman behind the check out line (I am famous for knowing all the people who work in the stores I shop in). She told me that her granddaughter was in the ICU. I found myself listening to her story with more intent and care than I may have before. Somehow I told her of Robert. This very sweet woman looked at me and said I am so sorry you son did not make it...and upon parting ways, she insisted on hug. So there I stood leaning over the counter in this store hugging a "perfect stranger" telling her that her granddaughter will pull through. I prayed, okay maybe it was more like a begging, that her loved one would pull through.
I find that like Mary, the Mom who also lost her son, that every moment another child lives within this awful circumstance, it is like Robert is living. I have to believe...I have to have faith. Now for me, it is like the air I breathe. It all has a different meaning now. It is like those choices I always talk about...faith, breathing, living, laughing, they all must be a part of life for me or I will wither up and fade away. The alternative is overwhelming. The sadness that threatens to make this a very dark world is too much for this old girl. So, I choose to have the faith that hopefully can encourage another, lift another up, help someone breathe who otherwise might just want to wither up and fade away. I watched someone else who learned to live and have this faith after she lost her son...I need to live this way now.
Robert may be in a better place, living on in heaven. But, there are so many still with us...I see them, am blessed by these children, and their families...we all come together clinging on to any hope that there is...all wanting the same thing-that their children live.
I believe, even now in miracles...I have hope for today and tomorrow...the blues may come, but I pray they do not rob any of us of precious time that we have to realize that taking that moment to lean over a counter and hug on a "perfect stranger" may be enough faith to encourage, uplift, and even change the "fate" of another...
Have a lovely day, and peace to you all. All is well--
Kathy
Tuesday, April 22, 2003 8:46 AM CDT
Good day friends...HAPPY BIRTHDAY JEFF! The big 36! Sorry to say I beat you to it...I hope that this day brings a smile to your face. I know how much you miss the one with whom you have celebrated this day with for the past 12 years, I know and have no doubt that your precious Robert is right next to you listening to the birds chirp and seeing you work so hard...he is right with you all the time, everywhere, Jeff...carry him with you, he will be there, he is in front of you and laughing with you all the along the way. May your life be full of many more wonderful cherished memories! Just watch your back, Matthew might just get his aim right on with the silly string!
Last night the family came over and we had dinner together, thanks to Mimi Jane-Jeff's Mom...and of course, Jeff's twin, Scott Finestone and family were here. At least I think that Zach was here, he and Matthew are quite the team, they tend to disappear. It is always wonderful when the Finestones come over...thanks guys!
Well, believe it or not...all the kids are in school! Thank goodness! Don't get me wrong, I love having my children around-truly I do, but normal has its benefits as well! I was a bit concerned about the girls getting up this morning. I let them stay up and watch Lucy Camden get married on 7th Heaven. It was a Charlton chick flick moment...we, the girls love it! Thank goodness Matthew was asleep, I am certain all that mushy stuff would have driven him nuts...needless to say, I was a bit fearful the girls would give me a hard time getting up this morning. No worries, I guess they did not want to risk losing the privelege of staying up late.
So, off for another day. Work tonight, how very exciting. The season I work should be winding down soon, and summer will be upon us. It is already hot like it is summer, but there is a lovely breeze in the evenings and very nice. That is how I know it is not quite summer, when it is 7pm and I can breathe! The humidity is what is the killer in the summers here.
Thank you for checking in...take good care, Peace-Kathy
Monday, April 21, 2003 6:03 AM CDT
Good Day friends. Another week is upon us. Another Monday, another game of "who is going to school today?" I am guessing everyone seeing as I need to be at work at 8am!
We had a wonderful weekend. Friday was a lovely start to our weekend. We spent Friday late afternoon out at my Mom's house. She had prepared quite a spread, with the help of all of our family and friends...and had hid in the backyard a ton of eggs for the kids. It was lovely. Everyone had a wonderful time and it was very special to be with our family and friends like that. I marvel at how our "family" has grown and changed to include so many new and old friends. When we are together there are friends that have been in the family since my Mom's childhood and new friends that have been in the family only a short while, since Robert's diagnosis. All family, that is the way it should be. Thanks Mom for making us "all" feel so welcome!
Friday night we headed over to the west coast to Aunt Bambi's and Uncle Steve's house. They recently bought a house on a large parcel of land. We have been wanting to visit and see everything for a long time. To try to put it into words how much Robert loved going to Aunt Bambi's house might be impossible. It was always one of his most favorite places. She had wanted to bring him to her new place so badly...we missed him very much as we walked along the property and climbed down the muddy slope to the creek to listen to the waterfall...he would have been in heaven on earth if he had made it there. Jeff and the kids and I had a great time. What more could you want...good food, loving family, beautiful weather...lots of love and laughter...it is all good. Thank you to my sweet Aunt for having us. We will be back. The kids are already plotting their escape!
Easter Sunday the children hunted eggs, whichever ones the dogs did not find first! We all then headed over to their little church in the woods. It was a very nice service and what a kind group of people that attend there. It was special. We hung out for a bit, the kids swam in the creek and waterfall...and we headed home to the east coast. What a difference in coasts. Just the traffic alone made me realize we were home. Jessica and I agreed, actually we all agreed, that the west coast is wonderful, but we like the fast pace of our coast...we would appreciate a bit more of the small town kindness that exists over there, but we can't have everything now can we.
Jeff's birthday is tomorrow. He is getting old! Remember how Robert pointed out that I am older, so I better watch myself. We are going to celebrate tonight, because I am working tomorrow night...and then next Monday is Robert's birthday. We have always celebrated them together...it is all new, and I am hoping that we can make this special for Jeff even if we all know it is so painful.
Thank you to all of you for the wonderful Easter greetings. That was lovely to come home to...and to the one who signs, "No One in Particular..." I dare say, you most certainly are "Someone in Particular". Especially if you and your mother are contemplating such deep things as which is more important, Easter or Christmas. It sounds to me like your life has indeed been full of many things that have caused pain as well...thank you for writing. Take good care, whoever you are...
Friends, have a lovely week, a new one...we have been blessed.
Peace my friends, all is well--Kathy
Friday, April 18, 2003 8:35 AM CDT
Good Friday my friends...Good Friday.
May you be and feel blessed this day.
"Stay Well" by Pastel Poet Timpson
Let your soul create
a sanctuary wehre
al dreams are possible
and life is grand as God's glory.
The beach stretches
before you.
You are strong as the sea's song.
Whitecaps travel and return.
May you never
feel alone or
lose sight of the
sacred seasons of your soul.
Stay well.
Peace my friends, Kathy
I will be gone for the weekend, be back on Monday-Happy Easter!
Thursday, April 17, 2003 7:07 AM CDT
Five months ago today, Robert left. Last night as the sun was setting and the rain was coming down...so did all the strength I had in me. It was worse than the night Robert actually passed on.
I remembered how the lightning was flashing, how we could see the light through his blinds in his room. It was such bright lightning that night...the rain was pouring. We huddled around Robert to cling to him for whatever was coming. I remembered all of it; last night was harder because at least that last night Robert was still here; we stood with hope as he reached out for us in his slumber and dreaming...we held his hands for the last time with a grip from a boy's hands that felt so strong that there was hope that he would stay...by morning he was gone.
The rain finally stopped last night...sometime around 10:30. I finally felt a bit of relief with the stopping of the rain, and the laughter from the children in the other room. Phone calls to a couple of friends helped me as well...but, in all of this, one becomes and is so alone. It is the only way. I pray that as my young children see my tears, they also see courage and strength and love...always knowing that they give it to me...they help keep me strong. Knowing they are here, they are here...that is enough. Trust me, if they were not, I dare say, I might have disappeared by now...just sort of fade away.
Right now as I type this, the sun is shining so bright over my shoulder I can barely see the screen from the reflection. It is a new day. I wanted so much for a new day last night...and it is here. I awoke amazed that I had slept and did not wake at the 4:30am mark, or the 5:30 am mark...yet, I see that I write these words at exactly the time Robert left.
Now, for me-he is EVERYWHERE. Now, for me Jessica, Christina, and Matthew--they are here.
"Angel Embrace" by Lori Eberhardy
There are angels who sit quietly
and whisper when we need comfort.
There are those who breathe life into us
when we are breathless.
There are angels who fill us with gracious support
when our souls become fragile,
and those who kiss us goodnight for a peaceful slumber.
There are angels that touch us with sacred laughter
when tears become a burden.
There are those who wrap their wings around us
and rock us until the ache in our hearts disappears.
There are angels that can send us flying with wonder
when our hope begins to fade,
and those who devote everything to give us
everlasting peace in heaven.
"A Quiet Comfort"
I look up to the sky and I see
one star shining brightly.
I know it is you.
The breeze whispers in my ear,
'You are not alone. I am here with you.'
I find comfort asyour light shines on me
and covers me with a warm embrace.
As the rhythm of life eases my burdens,
I feel completely held by your grace."
"Grace" by Kate Robinson
Grant me tha
graceful moment
in which pain
becomes learning
and tragedy, survivorship.
Let my tears
be as a river
or a mighty sea
floating my soul
beyond this rocky shore.
Peace to you my friends--truly, in the end and at the beginning, all is well-it has to be.
Kathy
Wednesday, April 16, 2003 7:38 AM CDT
Good day friends...it is almost Good Friday and Easter. This is a tough time of year for our crew...Jess and I were trying to remember if Robert spent Easter in the hospital last year as he had the year prior...we remembered he had. The memory of him running up and down the hall with his IV pole in tow to find eggs is very vivid in both our minds.
We will be spending Easter with family on the west coast of Florida, over in Bradenton area. On Friday my Mom will be having her traditional giant egg hunt in her "jungle" of a backyard...it promises to be delightful-hopefully no rain.
Last night it rained, it rained very hard for a few minutes. It sounded so nice to hear it rain. I know there are many of you out there who are hoping it never rains or is cold again...I do not blame you, believe me there is a very good reason I live in Florida. The weather has become one of the top 5! So, the moon was full and the rain was pouring...it was lovely.
This morning I find my mind wandering to those who are still embroiled in the battle for the lives of their children. Often times of late, I actually do not dwell on these thoughts. Part of me is grateful to be free of that painful world; part of me does not miss it all. Yet, part of me, my heart, remembers all the pain, anguish and suffering and knows that I must never forget that my Robert may not be suffering, but many still are...I think this morning of Ryon. I think of Mitch, Zach...Jalen...Kyle. I think of sweet Cameron. I think of little Jessie. These are just a few that live within miles of my home...a few that have touched my heart and changed me forever...I pray if I did not make mention of your child's name you will not feel overlooked...sign my book, put their name there in all capitals...and let us pray for new life and remission forever for these precious ones.
It dawned on me early this morning how our life would be right now if Robert were still with us. Trips back and forth to St. Jude, if we were home at all. His battle would still be in full swing. I know he is grateful to be free of it all; yet, I know he would be full of life and laughter and love if he were still here, giving hugs and kisses all along the way.
Every morning when I drop the kids off at school, I yell back to the back, "Stop, kiss Mom! NO fake kisses, smack right on the lips please!" They always oblige...I guess they do not want me chasing them into school in my jammies, or walking clothes!
I am so glad that I impressed you with the fact that I am the proud owner of a clean closet. Please, do not ask about the rest of the house! Scary, truly scary...
You know you all have become like friends who are sitting right in front of me listening to my ramblings...listening about our life, and my insane perspectives of it. A friend said to me that this has become like my way of letting go of so many things that are jumbled up in my mind...it is true in a sense. This is a release for me. It is nice to know that someone is there...thank you.
I am searching for so many things. Aren't we all? Does it ever end? The searching that is...I mean even if we have peace in our hearts, we-or maybe it is just me-continue to search and want to grow and change and keep finding new avenues of life. It has become such an adventure for me. I think I will sign off now...I hear my music and broom calling me...I plan to enjoy as many of the mornings at home cleaning and dancing around my house as I can before the other shoe drops...don't look now, but all the kids are in school! I may stay in my jammies all morning! Close up the drapes and dance away the day...sounds like a plan to me, wish me luck!
Peace to you my friends, and remember-the same beautiful moon that overlooks your shoulder is overlooking mine...
All is well, Kathy
Tuesday, April 15, 2003 5:59 AM CDT
Good day friends. So, here it is Tuesday morning...let me see, I believe I just read in the guestbook from a woman who lives in Wisconsin that says she and a best friend will be hanging out in the hot tub tonight around 10pm, she says they talk about "us" sometimes...I wonder should I give her something really good to talk about!?! Nah, not today... ;)
Seems to be something in the air around here. I think it is the full moon, or maybe just hormones...actually don't those types of things run neck and neck...I was talking with a sweet friend online last night, actually 2 sweet friends, and both said the same thing. Both said they were a little off center or something. Jess has been feeling it too. You all picked right up on my off-centeredness yesterday. By the way, thank you for all the wonderful words you write back to us...so, Tuesday, another day. We press on. As I spoke with another friend yesterday, I realized it is the 5 month mark for Robert leaving us...5 long months, 5 short months---either way, he is gone.
I spent yesterday afternoon cleaning out my bedroom closet. You laugh a little at this, you chuckle, I can hear it...actually, was that a gafaw, one that goes with the "I wish I had time to clean out a closet..." comment. Well, I am grateful to be able to get my house somewhat organized before I am never home again to do it...hence, the full-time job idea. I have long marveled at how families juggle so many things and still stay afloat. So, we emptied out the mess, vacuumed and killed all the dust bunnies...and voila! 7 trash bags later, my closet is pristine! At the end of the day my dear friend says to me,
"Now, Kathy, you need to purge those shoes..." "Go through them before you put them back..." I replied, "Oh no, you don't understand, those are all staying!" Me and my shoes...okay, now I hear laughing and chuckling. Go right ahead, my family loves me in spite of my apparent shoe addiction...they have learned to live with it for many years now...it all started with a garbage can full in my closet at my Dad's and Stepmom's...oh so long ago.
So, it was rather productive day for me to be able to have that finished. I am the type that gets a little edgy when certain things are completely chaotic; like my shoe collection. The linen closet down the hall, well that I can ignore, but the kitchen, living room and family room and my closet I see constantly and cannot ignore...so, I am tackling them as I can. I guess at some point these projects will run out and I will need to get out of the house...as we cleaned out the back of my closet, my friend picked up some clothes, "what are these?", she asked...I replied, "those were Robert's, he was wearing that his last day here with us..." We packed them away. Strange how we came across them at the 5 month mark of his passing; we also came across another shirt of his I have kept for myself, and his last chap stick. Funny, the things that you keep for memories...
So, I am hoping my sweet Jess can make it to school. How is it that our world has become such a scary place that so many who are so strong have such a tough time...we press on . It is the only way.
I believe by tonight the moon will be full. Lord willing another day will follow.
We shall see, all is well-Peace, Kathy
Monday, April 14, 2003 5:46 AM CDT
Good day friends...I have missed you. It was a busy, and nice weekend here for the Charltons. Work, play, and time to reflect for each of us.
Last night after the sun had set, you could almost feel the energy in this house...an energy that brought with it deep thought, and reflection. For me, it brought many tears, and much anxiety. Jessica said to me, "Mom I am feeling anxious." I replied, I know, so am I...for me anxiousness comes and goes, and does not overcome me...but, last night as it grew dark I began to think of Robert and missed him so. Truly I have come to the point in my life where I do think of Robert all the time, but, it is a choice to allow myself to "indulge" in thoughts of him. I must choose this time wisely. I realized last night as I felt so very overwhelmed with the entire situation of how grieving is so individualistic, and our ability to cope is unique as well. For me, I realized that there is no one who can give me the courage to face another day...I must find the strength within myself to do that.
I began to think of Robert and how his life began. I found myself writing in my journal about the mysteryious beginnings of our lives. How as unborn children getting ready to face the world, a person is totally and utterly dependent on another person to even get a chance to breathe. I thought of how Robert began his life growing in me...how he first stretched his legs, and used his tiny fingers within me...completely and totally reliant on another human being for life. I thought of how we as human beings all begin this way. Completely and utterly dependent on another human being to have life--each of us starts out the same way. I then pondered how from the very moment we are born we begin to find a way to live not dependent on anyone. Newborns babies are totally dependent on their parents to feed them, teach them, love them, show them the way. Yet, from the moment they draw their first breath they want to be independent. Some more so than others; it is how we become who we are as adults.
I thought of how my Mother always told me how very independent I was from early on. I began to realize how I have always tried to live relying on the help of no one and how I thought I could need no one. I am fiercely independent. Yet, for me, I began the same way; totally reliant on another human being for life. So, I wonder how it is that so many of us think we can make it to the ends of our lives not needing one another. I reflected how at the beginning of Robert's life he needed us to feed him, clothe him, hold him up, carry him around and even make sure he was breathing...I realized at the end of his life it was the same. As an newborn, that baby cannot even utter a word. Every sound must be interpreted and every need anticipated. As it is at the end of life...Robert had no voice at the end of his; he was completely reliant on our interpretation of his needs. That is when I began to understand my role as his mother...not only from the beginning of his life, but to the very end of it. What an honor to be able to hold him up as a newborn, and then again to help him sit up at the end...I am grateful for every moment I had with Robert.
I am grateful for every moment I have to spend now...grateful for three other amazing children. Grateful that I am learning that my life does not exist completely independent of others. Grateful that I understand that I need people in my life to love, and cherish and "rely" on...It is a new concept for someone such as myself. I truly have tried to live "independent" of so many things in my life, from the early stages of my life...it is good to know that now if I need someone to listen to me, or cry with me, or love me, I can have it...we humans think we are so smart. We actually try to fool ourselves into thinking that we can make it on our own...when at the very beginning we were totally and utterly dependent on another person for life, and in the end--well, believe me, if you want to have any moments at that point, you will be completely and utterly dependent on another much the same way.
So it goes...for me, I know it is a choice to need someone. A choice and I must voice that need as it comes about. As a newborn we are blessed with the luxury of a Mother who can interpret our needs, as we grow, the blessing of having an interpreter becomes less obvious and we must learn to use our voices to make our needs known to be met...I must learn that I must speak out to get my needs met and filled. It is not easy for someone such as myself-independent and all that. I am learning. Robert taught me much.
It is a new week. I plan to get to end of it; hoping that along the way I allow myself to lean on someone for a little bit of love and encouragement...all along, hoping to be able to give it back as well.
Take good care, all is well...truly.
Peace, Kathy
Friday, April 11, 2003 6:04 AM CDT
Good day friends. Another Friday is upon us...wow.
I am not quite sure how our weather will be for us today; yesterday was beautiful. I was thinking of all you dear ones who seemed to be trapped under the blanket of cold dreary rain. I would love to send some sunshine your way! I thought of how the weather would be in Memphis if we were still there...so cold, and damp-no wonder my sweet boy wanted to head straight home for his last gallant effort to beat his disease-sunshine is a good thing.
I heard a rumor that all my children are going to school this morning...don't laugh, I can hear you! Worse than that, they can probably hear you...and a challenge like that from someone might just cause the plan to backfire! :)
I have managed to come up with a bit of a cold. I may just crawl back into bed this morning and sleep a bit more. Probably not...but, it is a thought! Knowing me, I will go out, do something useless until the kids get out of school and come home and take a "cat nap" this afternoon...actually, I am hoping to have lunch with a good friend-that is never considered useless, a blessing-indeed!
Well, you all will be delighted to know that Jessica and I have settled on a class to take together. At first the suggestion was cooking...did I tell you this? I tried not to take this as a personal slight, but I figured if it was time with just Jess and I-I was game. Of course the idea of her learning to cook was pretty appealing I must admit. However, we have settled on a dance course. We will be learning swing, salsa, hustle...and such. It will be much fun. Jessica does not mind having me as her dance partner. I have long wanted to take a dance class-actually, I want to BE a dancer, but that dream is gone! I am planning on having the little ones take a dance class at the same time...so all the Charlton kids will be well versed in something!
Nothing profound for me this morning...the brain is in a fog. I know, my fisherman buddy in NC just laughed at me with that last statement...
Have a lovely weekend, and those of you in the cold, bundle up...take good care my friends.
All is well, Peace-Kathy
Thursday, April 10, 2003 6:04 AM CDT
Good day friends. Wow, this week is cruising by. Next week is Easter week. Always a special time for this family. The past 2 Easters were actually spent on the floor of St. Mary's Hospital with Robert getting chemo. Not this year...
I was actually planning on going up to the hospital this morning and "hanging out" with one of my good friends and her little girl while they waited to get a bone marrow check. I started to feel a bit apprehensive about it a couple of days ago. I have been on the floor a couple of times, but, I think for me it is the time of year that would effect me. I would have such reminders of Robert racing up and down the hall with his i.v. pole in tow searching for Easter eggs...and now I have woke up with a sore throat, and may have to give up my whole this is just allergies theory! I will have to miss visiting with my friend.
The plan is that all the kids make it to school today...doesn't that sound reasonable...don't tell Jess, but she might just make it an entire week to school. Wouldn't that be awesome?
I spent some time with two very good friends last night. Both Mom's that I met through the hospital. What a bond to share. I said to one of my friends as we were heading out to our cars at the end of night, that we have an understanding of each other's lives that other friends do not...she agreed. We, of course, by no means have forsaken other friends. This is just different. Everything is different. You can imagine. Both these ladies have little boys with cancer. We are able to understand that laughing and crying and living are all different now. We understand the effects this has on our personalities, our marriages, our "jobs"...it is nice, and I am grateful for these friends. Thanks ladies. What is really nice for me, and I think that they would agree, is that we have become "true friends." That in itself is a rare commodity in this world.
So, off to school, off to work tonight and all that good stuff. It is actually a little cool here this morning. I know, you do not want to hear about our weather...so, I won't rub it in! :)
I do trust this finds you well, and thank you for signing in and checking in on us. Do drop by my dear friends pages...leave a note if you feel so inclined, it is all appreciated!
Indeed, all is well--Peace, Kathy
Wednesday, April 9, 2003 8:08 AM CDT
Good day friends. Well, here we are breezing through another week.
I have been busy this morning with the usual Mom stuff. Getting the kids ready for school; playing my ever favorite, "school roulette"...except this week it is Matthew's turn to play. He is home. He had quite a tummy ache last night; he said he did not want to "wake me" and tell me about it. Slick, my kids are, very slick...don't tell them I am on to them and that I at this time in our lives am letting them get away with it.
There are days when I let them go in to school a bit late. There are also days that I let them have a break. This is of course only a temporary phenomenon. I plan to change all of this with the new school year. I am biding my time. I enjoy so much being home with the kids. Quite frankly, being home one-on-one is nice too. So, I try to oblige and parent all at the same time...most days, I dare say, my teenage daughter will tell you that I fail miserably in all areas! I am doing the best I can, what more can I say...
I am off to work today. So, I spent the morning doing my household duties. I walk around here wondering how in the world I am going to keep any semblance of order when I am working full-time. I can only imagine. I have learned to pick my battles in my home as well. Remember the need for the bulldozer for the kids rooms...I have learned that certain messes can remain until such time that I can get to them, for example...since I am the only one who goes into the hall closet to get out towels for the person who is yelling for one when they get out of the shower, I do not care at this point that I have to shove everything back in there and shut it fast to keep it from tumbling on the floor! I find all of this very amusing.
My closets and the way certain rooms look when the door is closed is sort of how I must live my life these days as well. I think you know what I mean. There are times in all of our lives that the "junk" that we have crammed way deep inside must stay behind closed doors for the general population. Jeff said to me that other day after he had been talking with a new friend...he said to me, "we have a lot that happened in our life that most people can't handle." I almost said, "Duh,people can't handle it!" but did not...I am glad that he is opening up to new people and letting them help him with his journey through all of this. It is somewhat daunting when you realize that the general poplulation really only ever wants our repy to "how are you?" to be "fine..." We all have experienced this in life...my personal favorite is when the question is asked and the person asking it has already walked off before you can even begin to reply...
So, off to work I go. Wearing a smile, and ready with my set answer..."I am fine." Actually, I am...and that is true, but I think you all know what I mean. Thank heavens for people that we can be "real" with...where would any of us be.
Have a lovely day, and take good care, all is well.
Peace, Kathy
Tuesday, April 8, 2003 7:43 AM CDT
Good morning dear friends. As I was heading over to the computer this morning...I found myself half grinning. Just the thought that you are there, somewhere, is so very comforting. Strange how the thought that a "friend" would be checking in on "us" is so warming to the heart. Thank you.
It is so quiet in the house this morning. Yesterday, Matthew took the day off to be with Mom. He really needed some time with me. He laid on the couch next to me and hoped "Little Bear" would come on. That was our favorite show when he was a little guy. I was so sleepy, and informed him that I was going to take a nap while he finished his game...as I was sleeping, I realized he was covering me with his blanket and another blanket. He had gone down to the hall closet and got out a big blanket to cover me up...I was so touched by this loving gesture...after I awoke, I saw where he had helped himself to a pack of Oreos and a glass of milk...I must have been out! Very resourceful child I have here, with a very tender heart. It was lovely to have some time with my little buddy. It was a time full of moments.
This whole time change has our body clocks all confused. Jess came home from school and promptly went to bed and slept for a couple of hours. I had made one of her favorite dinners and was glad she woke up feeling more refreshed. Even little Christina has been up later and waking up later...it will all balance out. Did I hear someone say Indiana? Apparently they did not join the rest of us in the time change. Well, I personally love the time change. I love the slow quiet of the mornings and the birds who are so awake; and the fact that it stays lighter later. Christina and her best buddy Jordan may never be apart now!
Yesterday afternoon, I took a few minutes to look through a drawer of photos. Dinner was cooking and all the kids were off playing. I rummaged through this drawer. I think it is more fun that way than being so organized, you never know what you might find...it was a hodge podge of life. Photos from my 5th birthday; photos of me as a teen; photos of the kids at all ages, even ones of my older brother when he was 5 or 6! One of them I came across that made me pause even longer was a photo of 5 children. The 5 children were Jessica, Robert, Tiffany, Christopher, and Patrick. I stared at this photo. Looking long at my children. So carefree and happy; looking long at the brother and sister, Tiffany and Christopher, so carefree and happy. This photo tells such a story. You see, Tiffany and Christopher lost their mother not long after this photo to breast cancer...we lost Robert to cancer since then as well. I stared at this. Looking long and hard knowing that at that moment none of us knew what was coming. I was grateful that those precious children knew nothing of what lied ahead for their lives, in that moment, they were happy, and whole...
Life, whole, or in part, is completey and utterly unpredictable...need I remind you, I think not. I guess for me, and if I can impart any precious morsel to my children and family is that, none of it, not a moment of it should be taken for granted...it means stopping and taking that call that you dread taking from someone you do not want to talk with. It means walking across the street for a few minutes at the end of a long day to visit and laugh with neighbors...it means so many things. I trust that as life unfolds before each of us, we would have quiet mornings, afternoons to ponder, and evenings to gaze...
All is well, Peace to you...Kathy
Monday, April 7, 2003 5:57 AM CDT
Good day friends. It is Monday; and yes, I did forget to set my clock ahead yesterday! I am still confused...I am certain I will catch on sooner or later.
Yesterday, we went to a fundraiser for a family that we have gotten to know quite well through our time at St. Mary's Hospital. Their 8 yr old son, Mitchell, has leukemia. He is fighting hard and is a fighter and a very strong little boy. It was a great day. The weather was beautiful and I do hope that the family is able to have benefited much from the gathering of people and friends who came to show their support...I know that this family already considers themselves "benefitted" by the family and friends...however, this disease is rather costly and believe me there is no rainy day fund for a fight against childhood cancer.
I found this page from Robert's journal this morning. I wanted to share it here.
My Family
"My family is pretty basic. In my family I have a mom, dad, 2 sisters, and one brother. My older sister Jessica is in the 6th grade, I'm in the 5th, my little sisters in 1st, and my brother is in pe-k. As you can tell my sister is the oldest she's 11, I'm 10, my little sisters 6, and my brother is 5. My parents have pretty cool jobs. My dad is a landscaper and my mom has to jobs she works at the Kravis Center and she sells Mayfields ice cream. My moms older then my dad there both the same age. The number is divisible by 2, but the number to equals 7 can you guess what the number is? Its...oh bye."
Robert would have turned 12 on the 28th of this month. He was in the middle of his treatment protocol just over a year ago when he wrote those words. He thought of his family as "pretty basic", even in the midst of all of that...this family has changed alot since then. A big part of this family is gone. We continue to grow and change and live. It is not easy, but "forward" is the only way. The dynamics of this family may be changing, but a family remains...there is just a different definition of it now.
Take good care, all is well.
Peace, Kathy
Sunday, April 6, 2003 7:15 AM CDT
Good day friends.
According to my Mom, it is National Poetry Month...who knew, probably my Mom and Stepmom. So, here is a poem...
Remember
Remember me when I am gone away,
Gone far away into the silent land;
When you can no more hold me by the hand,
Nor I half turn to go, yet turning stay.
Remember me when no more, day by day,
You tell me of our future that you planned,
Only remember me; you understand
It will be late to counsel then or pray.
Yet if you should forget me for a while
And afterwards remember, do not grieve;
For if the darkness and corruption leave
A vestige of the thoughts that once I had,
Better by far you should forget and smile
Than that you should remember and be sad.
(Christina Rossetti)
I would have to agree, and know that Robert would agree as well...that he would rather be "forgotten" if it meant we were living and smiling and moving forward in this life...than spending any moments deep in sorrow and consumed by his loss. He lived to live; to savor life, to take it all in. I know that from where he watches, he would agree, that yes, if for a time it seems that we have "forgotten" him because we are busy living, than he would be pleased. His greatest legacy was the way he loved life...his smile, his laughter, his genuine spirit of friendship. So, for us who remain, I know he would say, live, laugh, love...and move forward for that is the way to find him again, and live eternally...
Peace my friends, Kathy
Saturday, April 5, 2003 6:10 AM CST
Good day friends. We made it through another one. Some with more to be grateful for, some with more pain. I awoke last night around 3a.m.-thanks to the cat-and this verse came to my mind as I thought of so many things...
"...weeping may remain for a night, but rejoicing comes in the morning..." Psalm 30:5
Well, I must admit, last night was not a night for weeping for me...but, as we all know, there have been many nights of weeping and I am certain there are more to come. I remembered when I first heard this verse. I was in college and suffering from a freshly broken heart. It was the very guy who broke my heart that the next day quoted this verse to me. I may have ended up thinking him a "pompous windback" at the time, but this verse stuck in my mind and I realized how true it was for me in my life many times...some days, there is no comfort found in the morning, but many times things do look better in the morning.
I found myself thinking of my dear new friends...two imparticular, two ladies-and how I am certain this weekend will be so hard for them; one with a fresh new loss and one recovering and attempting to live from the loss of her son. Both states of mind and heart that I am all to familiar with-both involve much weeping. This morning I am thinking of so many whom I watch daily, live with a broken heart; I think of the families embroiled in the battle for the lives of their children, the mothers and fathers who plead, beg, borrow, steal if they must to have the life of their child spared-some make it, some do not...all weep! My own mother weeps much these days over the state my younger brother has put himself him from a drug addiction...it is awful, it is scary, it is a choice and it is a situation that causes us to weep.
Yet, in my neighborhood, even now I must shield my computer screen because the sun is shining so bright I need my sunglasses...even now, the shout of joy that is right there is waiting to be acknowledged. Our we being asked to shout and rejoice in the morning because our Lord has brought us through the night; or is he speaking in terms of shouting for joy in the midst of a very dark time that seems there is no sign of morning or light...either way, I pray that we would all find a way to rejoice and shout for joy from the heart of hearts that beats within us...it is good medicine, our Lord designed it that way.
Just for reference...the beginning part of that verse, is awesome as well. "For his anger lasts only a moment, but his favor lasts a lifetime..." so, bask in this love of a Lord who forgives and loves...and I trust at some point the weeping will turn to rejoicing.
Peace my friends, have a lovely weekend...Kathy
Friday, April 4, 2003 5:53 AM CST
Good Friday friends. Yes, I know, it is Friday...I am trying not to go there. It is tempting I must admit. I can feel the sadness tempting me already this early in the day. The sun is up and the air is clear--all will be well.
Yesterday "someone" signed my guestbook, another lingerer who seemingly has taken some time to sign in-first let me say, thank you. Thank you to all of you who are brave enough to linger, and even braver to write in. I need you all to understand how important your messages are. They are crucial. This entire family reads every word that is on this page. It is a bit of a lifeline for each of us; each in our own way is touched by this. So, please know we thank you...and I am thinking of what this "no one in particular" made reference to about time. Indeed time can be our friend, time can be our enemy. It gives us hope and at the same time can rob us of our joy if we do not watch it. This person made reference to understanding that we must cherish time...good or bad. I tried very hard to savor every moment and cling to any morsel I could from the last moments with my Robert. I now try every day to cling to every moment I can; I have told you all, it is a bit of an obsession. A need I have found deep within me to stop and pause and take it all in whenever I can. Hence, if the tears are ready to fall, I let them. If there is a cheek waiting to be kissed or a hug waiting to be received I give it. Yesterday afternoon the girls-my girls and Christina's best friend, my 5th child-were all dancing to a favorite song. I did what I love to do most...I joined in, laughed and watched as the moment unfolded and took it all in...
Some days are longer than others, some nights even longer. There are times that sleep is not my friend, not the comfort I need it to be-yet, the sun seemingly still rises and the children still need me. Last night I was working on a database and had some headphones on listening to music. I had sent the children in to take their showers...I could hear something. I took off my headphones and heard my sweet Christina crying in the shower. I at first was fearful she had hurt herself. She was sitting there, with the water running just crying away. I sat on the toilet and we talked. Christina talked with me about how much she missed Robert. How it seems like it will be so long until she sees him again. I told her it will be a long time for all of us to see him again. We talked about how we can remember him and never forget the wonderful person he was and she talked about all the things she learned from her brother in his short time here. We were both amazed at how much he taught her...I talked with her about how we must realize that we do not know how long our time here is. I talked with her about how some people are here on earth for a long time, some, like Robert are here for a short time. That is the secret. I told her, none of us no how long our time is, so it is crucial we enjoy everyday and all our moments. She understood and said that she could see that I was right. Christina is 8 yrs old. A very mature 8 yr. old. she has a gift--a very tender heart that feels pain very deeply--I understand this gift, it can also be curse.
So, time, as this person inferred, is here. It is time to savor moments. Time to take the time to "chat" with my favorite 13 yr. old online even if she is sitting in the other room! That was alot of fun Jess, I am sure we will have more "chats" that way. This person also talked about the children. People always ask me how are the kids doing? I look at these children and am amazed, continually. I have been long before Robert and his illness. From the moment each was born, they have possessed a uniqueness that baffles my mind; an independence and genuine determination and love for life that I envy. I can look at these qualities that each acquired in their unique way from early on and know that it is all part of a plan to bring them to this point and help them get through. Of all the qualities they are blessed with, I pray that as they journey they would each in their own way, understand that the ultimate longing of their hearts can only be filled by one thing...that is the love of God, the love of a Savior, Jesus. This is something that I know has carried me along through so many times in my life, and carries me now. My life as I said may not be one that is status quo and in appearance be the way the world would want to see it; but, I am testifying that in whatever state I may be, whatever the condition of my heart or whatever the smile on my face says...that I know deep down, my Lord loves me and is carrying me, and leading me.
I want and long for my children to ultimately find their way to Him like this. Now, we can lead them, teach them, guide them...but they must choose this. It is a journey no other can do for you; it is a choice no other can make for you. It is a tough one. Many of us know how to look like we are following and going through the motions of our faith...but, in the end all that matters is what is in your heart...the evidence to the world will shine through no matter how you end up living, this I believe. I want for my children to find the courage and faith to trust in something that cannot be seen, sometimes not felt, sometimes is hard to find. I want and long for them to know that their Savior loves them with a love like no other...so, we keep moving forward...we keep living, there is a new day ahead today, and yes, it is Friday.
All is well, Peace to you my friends....is Spring with you yet, I do hope so.
Kathy
Thursday, April 3, 2003 5:58 AM CST
Good morning friends. I cannot believe it is April. Already the end of another week. So, would it be of interest to you all to know that my dogs are driving me crazy! Every morning the two dogs go out in the back and have a wrestling match. I cannot decide which is more entertaining--Prince and Valentino the cat wrestling; or Angel and Prince wrestling. I have got to get some photos on this page of these whacky animals. Prince is quite the little dog; he is so delightful!
Not much to report from the homefront--just life moving along as it seems to have tendency to do. I actually survived work yesterday; it was a busy day with our usual day time crowd of senior citizens. The Atlanta Symphony Orchestra was there and it was a favorite. The difficult part of days like those is that there is typically a higher incidence of acccidents. The day prior they had 3 falls and injuries; and on my shift we had 2. I had been called out to the front walkway to find a lady who had fallen. So, I am literally working my way "upstream" through the large crowd filing into the lobby. There she was. A lovely older lady holding her head, bleeding and bruised. I do not know how she and her husband managed to get her up and walking...she looked terrible. She had simply tripped on her own shoe and hit the pavement. Her fingers were all skinned and cut; I felt so awful for her. I took the first aid kit and did my best to clean her up and bandage her...she was determined to stay and see the orchestra.
So, it seems that as we get older in some ways we must become like little children again; I mean only someone who has truly lived long enough to not worry about how bumped and bruised and bloodied up they are, or a child, would not want to run and hide their wounds. She was such a delightful lady; and her husband so attentive right by her side...they stayed and enjoyed the entire show--so, for me to have to provide a little TLC was an honor. I notice how now a person's wounds seem so much more sensitive to me...they are like badges of honor...and yes, in my sensitivity I would make a great nurse, but, I do believe I would be fighting many battles that are so tough and have nothing to do with bandaging boo-boos. So, I continue to search for which path to follow--did I hear someone say teacher?
It is "crib-kicking" time as Dad always said...so wish me luck?! I do think it is a day that all the kids will be in school--oh yeah, I do find it rather amusing this idea of me working full-time out of the house...it is not lost on me the irony there, do not worry...
Have a lovely day.
Peace, Kathy
Wednesday, April 2, 2003 5:36 AM CST
Good day friends...I am home. It is good to be home. The children seemed to have grown so much even in the few days I was gone...that is the way with kids, ever changing, ever growing.
A friend called me yesterday afternoon...I know big deal a friend called. Well, this friend I have been "expecting" to call for about 4 months now! It was good to hear her words and get to share our hearts with one another...one of the many things she shared with me that really stuck with me was how she said "loving a child is easy...anyone can love a child; where is the honor in loving a child...?" She did not mean anything harsh by this, I understood. I am that way; loving a child, any child is the simplest most pure of ways of loving in this world to me. I have long pondered how our Lord beckons us to come to Him as a child. To follow Him with the obedience and love of a child. Yes, loving a child is easy...loving and obeying your Mom and Dad as you grow from a child, that is not so easy; loving a neighbor who lets their dog ruin your yard that is not so easy...the things of life that creep in as we become adults makes all of our loving not so easy; not so honorable. Choosing to love a friend when that friend is being painfully honest is not easy and can go against everything that is in us; as we become adults we realize that our ability to truly have love in our lives means that we must have the ability to forgive. Learning to forgive is a whole other subject is it not...? That in itself is somewhat subject. Forgiveness from our human point of view comes in different shapes and sizes, sometimes with stipulations or requirements, sometimes it is based on how we feel or love...or how it is received. Ever tell someone you have forgiven them and that someone not receive it or believe it? Ever be someone who has been forgiven and not receive it or believe it? This can all get in the way of our loving...not so with children. We are quick to forgive and be forgiven and we are grateful and move on, no questions asked...
So, I am home; the dogs are acting nuts in the backyard...I can hear the cars on the highway telling me the world is awake; the birds are here as well-chirping away...I must admit, not with the amazing colors of what I saw this weekend. In a few moments I will make a valiant attempt to get the children up and ready for school...I will pray and prod and gently encourage a teenager racked with anxiety to go to school...there will be no yelling and such-I will give them till Friday for that! I am working today...life moves along and we must join it...
All is well. I am remembering that it was 6 years ago today that my Dad left this place for a better one-his new home in heaven...
Peace my friends, Kathy
Monday, March 31, 2003 8:16 AM CST
Good Day friends. It is rather chilly where I write to you from this morning. Actually from the looks of the weather along the route I am taking home, it is quite chilly everywhere!
My precious, most wonderful friend I have been with these past days is hoping that this is the last cold spell for the year! I hope so to...you deserve some warm weather. Speaking of my most wonderful friend, "Juliet" rest assured I will return! My friend I have been with for the past days took me on a walk yesterday...just like when we were kids. Of course I pointed out to her that when we walked as kids, it was without her dog, and without the hills! Ouch! I managed and actually kept up with her...so, "Juliet" get ready I need to walk when I return...
The children had a very good weekend. Matthew is beyond proud of himself...he made it through the whole weekend, "blanketless" and managed to sleep, "all by myself!" He made friends, and as my Mom put it "I better get home before my sweet little boy grows up anymore!" Jessica had a great time as well. She made friends and helped another girl deal with her own situation. Jess and Matthew were the only children there who had lost a sibling as they had...Christina and Jeff had a great time together and I had no complaints from the home front...whew!
I think the icing on the cake for them this weekend was the visit from the infamous Finestones and the delightful Zach! Zman, I am coming home get those hips swinging, I am gonna out hoola you when I return! It is a challenge...and everyone read it here!
I have had a more than wonderful time away; like a real vacation...someone cooking for me, my best friend to talk to for hours on end...what more could a girl ask for! Yet, I am ready to head home...I know Mom, I remember..."Home is where the heart is..."
Thank you for being so faithful and checking in on us...
All is well, Peace my friends, Kathy
Saturday, March 29, 2003 8:56 AM CST
Good Day friends. I could not stay away. Waking to the sounds of Spring forced me out of bed!
I have been thinking much of Spring this season. In south Florida, seasons are not noticed much. Especially when one is engrossed in so much of the craziness of life. Where I am staying this weekend, even as I drove in the dark, Spring is screaming at you to notice it is here! It is remarkable. My family in Pennsylvania always sends photos of the gardens and Spring. I would look at these photos with this sort of feeling that it could not be real. Florida stays green, in such a different way. We have lovely plants and blooms...but this Spring the that has managed to come to life after a winter is really something to behold.
It is millions of blooms that have forced new life and are there for our pleasure. At home a couple of weeks ago, I began to notice these trees known as Yellow Tabs. They are everywhere. They bloom and are covered with these very delicate flowers everywhere. As I drive down the road when the wind blows these yellow blooms will flutter all around like butterflies by the millions. I have seen this sight a couple of times and I want to stop my car and take it all in or run around like a kid and catch them. That is a sure sign of Spring in our neighborhood. That and the birds...I notice them so much this year as well. I think I have told you how Robert loved the bluejays. He and I would spot them all the time. I saw one building a nest in the tree in our front yard the other day...where I am the air may be inundated with pollen and everyone hating it; but the beauty is breathtaking...gee isn't that just like life...to give us so much beauty but to always remind us that we are human...achoo! Bless you!
I have been thinking this morning of how for the last two years Spring arrived with hardly a nod from this old gal...we were embroiled in the fight for Robert's life. Spending days on end in a hospital and stumbling to your car in the night hardly leaves time to notice the blooms...and now, I see them. I was thinking of how busy the Spring is for our family. It is full of birthdays--like Papa JC's, Happy Birthday!--and holidays, ie, Easter. How so much time is usually spent on family for us in the Spring. Our focus on family has changed somewhat...we now live moment by moment, and day by day. For me, I think of how my two first children were born in the Spring. I was thinking of how when Robert was born only 14 short months after Jessica. I was remebering how in my young 24 yr old heart and mind all I wanted to do was go home and be with my baby girl. It was like Robert was born for Jeff, Jessica was born for me.
Jeff reminded me the other day of how he knew I had felt this way for so long...and then he reminded me of how he knew I had told him Robert changed all of that. Robert took "ownership" of his Mom in a very unique and wonderful way. All of those drives and time together singing in the car, and dreaming and holding hands...he gave me back the gift of love. Robert gave me the gift of being a Mother in a way I never knew or understood. Not only did he give me the ability and courage to stand up and fight for him, but, he gave me the courage to love each of my children with a greater love and courage than I ever truly knew existed. Ultimately, his living and needing me to be his warrior, has given me the strength to live now...to notice that it is Spring and that life is abundant. It is now my mission to show the other children this; to teach them of courage and love and hope.
I must admit, this idea of Spring and hope eternal is not easy. I do live in the same world as the rest of you! There is so much that frightens us all around. It is not a very pleasant place to live right now...it is a complete and utter nightmare for so many...those engrossed in the actual battle for life and freedom that is raging far off, and those engrossed in the battle for life right here in our neighborhoods. I think of all the parents looking out of hospital windows this morning. They are probably in the middle of a big city where there are no blooms and no birds chirping. They are taking in the smells of a hospital room and the stench of so much...they do not even have time to notice the new life. They are pleading for the life of their child. I do not forget any of this. I take it with me wherever I go...
Yet, even in the midst of it all...the blooms have managed to bloom, they no nothing of war. Spring has managed to arrive as though the harsh winter were never here. It only concerns itself with its task...blooming, and bringing new life.
My dear friends, yes, this all comes from the heart of our Lord-I believe. He sends these reminders of hope to encourage us and cause us to stop in our tracks and look heavenward...do so; stop and give thanks...for there is hope-it is Spring.
All is well, Peace-Kathy
Mom, I would ask you to tell the butterflies in the yard to wait for my return...but, they are on their own timetable!
Thursday, March 27, 2003 2:01 PM CST
Okay, so it is not exactly morning...so Good Afternoon! I am writing from an undisclosed location--hee hee--Jessica, don't tell anyone! Actually, I was going to simply take the day off, but there is one reason that I know I cannot...I want to honor my late father on his birthday. March 27th...the last time I spoke with him was on his 60th birthday 6 years ago.
Matthew was only a few months old. I had not spoke to my Dad in some time...having a new born and the other three children; it had been too long. But, we never forget birthdays...I called him like I liked to do. Dad was not one to gab on the phone...unlike me and my StepMOM, forget about it, we can talk for hours! But, this day was different I could tell. My Dad had been battling lung cancer for a few years and it was obvious that he was not winning this one. It seemed to me that both of us knew this would be the last time we talked. I remember one other time when it was my birthday and Dad was so sick, he looked across the living room at me and told me..."Kathy, you know that if I do not see you here on earth again, I will see you in heaven..." I was leaving to go home and he was very sick. He managed to rally at that time, but this time I knew in my heart he was close...so we talked about how much we loved each other, and he called me "Precious" like he always did. I can recall how neither of us wanted to hang up the phone...I remember his voice so well. I miss him very much.
Dad was the kind of man who kept his word, was a friend to many, and never expected anything in return. He knew how to work hard and make an honest days living...he loved his family above all else. His children were his pride and joy. He came to know the Lord later in his life after he met and married my wonderful StepMOM; he had a rich life...not rich by any monetary standards, and when he left us he did not have an estate that would be divided amongst his heirs, he left us plenty of memories of a man who lived simply and loved greatly. It is always a delight to get all 6 of us children together to hear and share stories of him...that is a legacy!
I find great comfort in knowing that my Dad is in heaven. I believe this with all of my heart. I can remember when I began to realize that Robert's time here was not long, and I began to think of my Dad. I can remember thinking and saying to him that I had a bit of relief knowing that he was in heaven waiting for my Robert...that he would be there for him...it was amazing what took place in my head and heart at that moment. It was like my Dad spoke straight to me and said, "Kathy, if you find comfort knowing that I am here, how much more should be comforted knowing that our Lord is here, He is everywhere..." This gave my heart a tremendous peace...it gave my mind a tremendous peace. It made it all a little easier, and I knew my Dad was right, our Heavenly Father had prepared a place for both of them; and is preparing a place for each of us...
So, to you Walter Waldron, I write in honor of...a very handsome, strawberry blonde man with the most amazing piercing blue eyes ever...to you I lift my eyes heavenward and miss you on this day and everyday...Happy Birthday DAD! I can still hear your voice in my ear even now...I love you too!
All is well, and Peace my friends...Kathy
In closing I must mention, yesterday I told you all about Robert's candle; I put the address for the page to go to see and maybe order one...a friend called me to inform me that Annie, a Mom herself to a child with cancer...that her daughter had just suffered a relapse with her leukemia days earlier. She must have just mailed off the candles to the parents as she promised...so, no candles for a time, her life is now upside down again! Please pray for her precious daughter and this lovely family...God be very real to you at this time, Annie, may His wisdom be your shield and strength.
Wednesday, March 26, 2003 6:09 AM CST
Good day all. Wow, I just looked at the date and realized it is already Wednesday...time is zipping by...
I must tell you that, the sun did come up this morning. Actually, there was even a "sunset" of sorts to speak of yesterday. By the time I returned home yesterday, things seem to be leveling off with Jess. School is on the horizon and I believe we are back on track...the eternal optimist am I!
I am planning on being gone for a few days. The children are going to a grief camp this weekend, called Camp Good Grief. It is supposed to be lovely camp and the children will be in groups with kids in similar situations and the same ages as them...unfortunately, at this time, Christina is the first on the waiting list. We are hoping she gets to join in as well. If not, I am certain she will enjoy being just her and her Dad for a couple of days.
I am driving off to an "undisclosed" place...hee-hee. I am not sure when I am heading out, but I do know I will try very hard to make my postings daily...I do not have a way to plug my laptop into my car, yet! I am sure there is a way...maybe I should do that. Then I could sit at the beach and type away...
Jeff and his basketball season is off to a great start. The kids loved hearing how the girls outscored the boys overall in the games yesterday. I am sure that he is doing a great job and the parents I must love him. The kids are anxiously awaiting the time when they are officially introduced to there latest stomping ground...the gym at Summit Christian School. Jeff took on the task of coaching the Elementarty boys and girls in addition to the High School teams...no this is not his full time job, he is still running his landscape company...this is pretty much "volunteer" and he loves it. It is just what the "doctor" order for this time in his life.
Me, well, I am still searching a bit. Did I say a bit...? Okay, I am constantly searching, no surprise there, but, I am searching as far as a vocation is concerned. I am seriously considering nursing school. I have a bachelor's degree in psychology, and would love to go into nursing...either, labor and delivery or pediatric oncology. I figure I would be there for the beginning of life, or during the most traumatic part of life...either way, I am certain both would be enlightening and I could be used. I am leaning toward the pediatric oncology...what a dream to be a nurse and patient advocate (aren't they the same) for those kids and families...I am not sure any hospital would hire me, they may not want to put up with me!I have plenty of life experience to glean from in both disciplines. I know plenty about having babies...and fighting for them. So, we shall see...I do know that if it is part of the plan for my life, it will come to fruition...one way or another...
So, the t.v. just came on; it is time to rattle the cribs and get some kids moving! No hollering this morning...I think I will sing! That should drive them nuts, hey--better them than me!
Christi, I am not sure what time that post was, my computer says 0:35am...that is strange time even for California! What a pleasant surprise! I received all sort of surprises yesterday. I received a beautiful bracelet with Robert's name on it and an angel charm and a gold ribbon charm. One of you faithful followers sent this to me...I was stunned! Yes, sort of speechless, except that I was telling everyone in the house to look at it...thank you Krista. Also, I was delighted to receive Robert's Ocean Breeze candle in the mail! I need to give you the info to go to the site and check it out...it smells lovely and is a beautiful blue! The website with all the info about Robert's candle is: www.AnniesFlowersandScents.com
This group donates 30% of all profits to childhood cancer awareness programs...please check it out!
Gotta run...literally! Actually, I did fix my clock and managed to go for a walk this morning!
Peace my friends, Kathy
Tuesday, March 25, 2003 8:55 AM CST
Caringbridge site was not cooperating...sorry I am late :)
Good Morning friends. So what do you do when you wake up your best friend from across the street to head out for your morning walk...and she tells you that it is only 4:30am! Well, after apologizing for tapping on her window at that ungodly hour and waking her and her husband...you saunter back home go back to bed! Of course, I did re-set the clock first! Can you imagine....duh!
Of course it was a fitting beginning to the kind of morning that was coming next...as you know school has been quite the issue around here. I am sorry to report that as the last nine weeks of school has crept upon us, it has managed to overwhelm Jess this day...she is home. We had a gigantic battle...you can imagine the kind, yelling, prodding, almost dragging...the whole nine yards. Nothing like a good battle with your 13 yr. old daughter to get the blood pumping...I sent the little ones to school to be able to run for cover...
So...here it is folks, you read it here...Cancer SUCKS!...and on occasion-yes, Jessica-life does too! Sorry to sound so pitiful...but what can I say...we all have our moments.
Jess, I love you, and know that you will read this...here it is in print for all the world to see--I love you and you are my sunshine, you will never know how much...
In closing, I must put a word from a wonderful boy that I knew quite well, a boy who may have known that cancer sucked, never not once thought that life did...
Robert's journal-no date "Cookies"
'There are lots of different cookies some are fool of suger others no suger but suger or no suger I like them. My favorite is chocolate chip and suger cookies are my favorite kynes expecially when my mom makes them. I love her home cooking even when it's cold I eat them it still doesn't mater warm or cold I love her cookies. Another of favorite cookie is when she makes cookies with hersey kisses with whip cream its so good when it welts in your mouth it is so so good. Thats why I like home made cookies. '
Peace my friends...Kathy
"
Monday, March 24, 2003 9:01 AM CST
Good Morning friends. It is the last day of Spring Break. It has been a wonderful time for each of us.
I am certain that after reading my Mom's post yesterday, you got a pretty good idea of how the kid's Spring Break has been. They had a wonderful time and I am so grateful that they had made some special memories over their time off. Those are the kinds of memories that stick with a person for their lifetime...a bit of glue if you may. It is wonderful that my Mom has taken it upon herself to help create many wonderful memories for our family...
We are basically not doing much today. You all can rest assured that I finally managed to get the children's room in some semblance of order...almost! :) Yesterday afternoon I spent the day sorting through Robert's dressers and clothing. I managed to get Matthew all moved into what used to be the boys room. It is now his room. I looked around after I had it all cleaned and the furniture in place, and I thought, well, Matthew, I hope you like fish! He has inherited a fish room filled to the gills! Robert lived and breathed anything fishing, as you all know. Christina's room is on the way as well. I had new furniture delivered for her last Sat. and now we are sorting and "filing" her clothes...I even found all sorts of Robert's things and papers from our stay at St. Jude...no I have not been avoiding them, I have simply been living and going on with life; but it is Spring....and it is time to sort through many things.
One of the papers I found was the lab sheets from the last set of labs that Dr. Horwitz gave me that fateful day. They were folded in half the same way they were held in his hand that day as he sat with me in that little room...it was so strange to find them like that. I found these papers at the end of my cleaning...I have kept any paper that Robert wrote on; I loved his handwriting so very much. It is like a real legacy that I can see from him. I even put some of the pieces back on a treasured lego creation of Robert's...as I attempted this, I could almost hear Robert laughing at me!
I began to cherish the handwriting of a loved one I lost several years back. When my Mom's best friend died from cancer it was not long after that I found a note she had written us; it is now a treasure. I have several little keepsakes like this, some are letters from long ago; some are simple notes...they are all treasures, but the ones of my sweet loved ones that are no longer here to write again, they are my most treasured of possessions. So, may I implore you to take a few moments, pen a legacy of your own. Send words on a page in your own handwriting so that someone may have a treasure of you--your handwriting.
May I add, one of my precious little buddies whose link is on the bottom of the page, Cameron, received wonderful news the other day. His MIBG scans to check for his disease came back ALL CLEAR! No signs of disease at ALL! It is indeed a much needed miracle! I am so happy for my friends...we must embrace the miracles when they come, because the other side of that is the continued loss of ones who have fought for so long...one leaves, one gets their miracle! It is Spring, let us look for new life again...
Peace my friends, Kathy
Sunday, March 23, 2003 9:03 AM CST
Good day all! I decided to put my Mom's guestbook posting here on the front page; I wanted you to hear her point of view of their Spring Break...so many of us do not read the guestbook entries, so I wanted it here. Yes, the kids are HOME! The saga continues...take care.
Good Morning Charlton Fans! Since I have helped with the daily "Spring Break" messages by spiriting the children away to the island, I felt it is my right to give you an update from a "Mimi" point of view. The day started early, we were packed to the gills, what with bikes, kids, food and Prince in the car. I got about 15 minutes out of town before Matthew said, "Mimi, are we there yet?" Having the kids with me has always been a treat. The fact that Kathy trusts these beautiful souls to me is a testament to the fact that I still have a reasonable amount of my wits about me. We have always loved Boca Grande and it is a tradition I started years ago so that we could spend time together as a "family." Friends, relatives, kids, animals all massed together in a frenzy of noise, confusion, card games, food, fishing, biking, swimming, fellowship, (did i mention food?)to watch the kids grow, learn to love and tolerate each other's uniqueness. Let me tell you, there have been years I dragged everyone kicking and screaming to our vaca spot, but we always ended out time there the same way-kicking and screaming because we had to leave our island paradise; knowing how much we will miss and relive our simple island pleasures shared family style around the dinner table, tv set, campfires, ocean sunsets, fishing hole. We have learned that even with our diverse lives, the children have always brought us together and we have grown stronger as a family because of them. They have brightened our lives by sharing their love with us. The one thing about our island is; now it will be Robert's island. He was the one who lived up to the "Boca Grande" style even as an infant. He loved each and every moment and hardly missed anything the island promised us.
I was not certain how the kids would feel, this being their first time there since we had Robert.
The kids were great! They loved and savored all the treasures of island living. We stayed at my son Terry's one bedroom apartment in town and soon friends and relatives started arriving to share the Boca Grande experience. Dad came. Mimi Jane, too. Terry, his dog, Sasha. Aunt Bambi and Tina. "Uncle Lou" and Kyle, who will be 12 this week. The pinnacle for me was the night we slept 9 people and two dogs in the apt. (I love this stuff!) The kids laughed, played, ate and tooled around town in the golf cart. (Yes, I let Jessica have the keys.) We took off to see where Robert loved the beach, we fished the spots he fished, we prayed for him and I know that he came with us to guide us through any rough times and to let us know that we can laugh and love and have fun times in his honor and in his memory. Why, I think Robert would insist upon it! We have had a unique kind of love from a strong, wonderful boy who lived his life to the fullest. We have to do the same. We can honor our boy's memory by doing this. Robert, we promise to carry on with you by our side. We will try to perfect our swing, embrace our fears, make new friends and treasure old ones, and yes, we will even tell a few corny, funny jokes and we will laugh out loud. Louder and longer than anyone else would. We will remember you in our laughter and our tears. We will carry you on our shoulders and in our hearts, just like you did with us. Rock on, Fish Boy! Mimi Bunny
Barbara waldron
west palm beach , fl us of a - Sunday, March 23, 2003 8:14
Peace my friends, Love, Kathy
Saturday, March 22, 2003 6:14 AM CST
A TRIBUTE TO A MOTHER'S LOVE
"The young mother set her foot on the path of life.
Is this the long way?" she asked. And the guide said: "Yes, and the way is hard. And you will be old before you reach the end of it. But the end will be better than the beginning."
But the young mother was happy, and she would not believe that anything could be better than these years. So she played with her children, and gathered flowers for them along the way, and bathed them in the clear streams; and the sun shone on them, and the young Mother cried, "Nothing will ever be lovelier than this."
Then the night came, and the storm, and the path was dark, and the children shook with fear and cold, and the mother drew them close and covered them with her mantle, and the children said, "Mother, we are not afraid,
for you are near, and no harm can come."
And the morning came, and there was a hill ahead, and the children climbed and grew weary, and the mother was weary. But at all times she said to the children, "A little patience and we are there." So the children climbed,
and when they reached the top they said, "Mother, we
would not have done it without you."
And the mother, when she lay down at night looked up at the stars and said, This is a better day than the last, for my children have learned fortitude in the face of hardness. Yesterday I gave them courage. Today, I have given them strength."
And the next day came strange clouds which darkened the earth, clouds of war and hate and evil, and the children groped and stumbled, and the mother said: "Look up. Lift your eyes to the light." And the children looked
and saw above the clouds an everlasting glory, and it guided them beyond the darkness. And that night the Mother said, "This is the best day of all, for I have shown my children God."
And the days went on, and the weeks and the months and the years, and the mother grew old and she was little and bent. But her children were tall and strong, and walked with courage. And when the way was rough, they lifted her, for she was as light as a feather; and at last they came to a hill, and beyond they could see a shining road and golden
gates flung wide. And mother said: "I have reached the end of my journey. And now I know the end is better than the beginning, for my children can walk alone, and their children after them."
And the children said, " You will always walk with us, Mother, even when you have gone through the gates." And they stood and watched her as she went on alone, and the gates closed after her. And they said: "We cannot see her, but she is with us still. A Mother like ours is more than a memory. She is a living presence."
Your Mother is always with you. She's the whisper of the leaves as you walk down the street, she's the smell of bleach in your freshly laundered socks, she's the cool hand on your brow when you're not well. Your Mother
lives inside your laughter. And she's crystallized in every tear drop.
She's the place you came from, your first home; and she's the map you follow with every step you take. She's your first love and your first heartbreak, and nothing on earth can separate you.. Not time, not space...not even death!"
I came across this from a fellow caringbridge page, someone had left in the guestbook...it touched my heart so...the reality that "I" was my childrens' first home will not leave me...
Obviously, I have been a mother for some 13 years. I have been blessed beyond measure with amazingly strong, intelligent, loving, kind, silly, independent children...For me, all these years I have never stopped long enough to consider the task at hand of raising my children. I very rarely pause to take a look at what it is that I am doing with these delightful cherubs. I am usually way to busy loving on them to contemplate my mothering skills...
Until now.
I think of how it is that as a woman I have been given this gift of children. A lifelong dream of mine, to be a Mom. I read this passage and I saw myself. My need to shelter and strengthen my children. I have long seen the need for them to have courage in the face of adversity and even in the face of love...they proved this ability so very much as they gathered around their beloved brother and bid him farewell. I think of how the three of them stood longing to have their brother whole again, and how they stood watching him as life ebbed away from him. What strength they showed, what pure love they exhibited, what courage while under "fire" with the most awful of pains to endure...I think on this much. I look at these three of mine that are still with me in such a new way now. I see them and know that they will grow into amazing adults who will change their world wherever they choose to go...
I watch them and know that wherever they go, they will take me with them...I am their mother...and forever, they are my children...Thank you Lord for seeing fit to send them to me, each of them in their uniqueness. It is my heart's desire now more than ever, that they look at this world not with rose colored glasses to taint their view, but with hope and love...for I believe, within this lies all that we need to live.
Robert, my sweet boy, you have beat me to the gates ahead. I know that one day I will not only meet my Lord, but will be hugged by my son with arms that do not let go...I can still feel you, hear you, see you...your laughter, your smile, your very loving ways. You were and always will be a very special child to me, from the moment you were born, to the moment you left...
There is a rumor my children are coming home today.
Finally, Mom, you will read this I am certain. I know that you will catch up on your daughter's life when you return. Mom, you taught me how to have courage in the face of adversity and love; you never let me go to sleep without a kiss goodnight. You kept me warm and gave me strength. I am not sure that you will be thrilled with the fact that, you single handedly gave me the independent nature that I have...such a double edged sword. When I did not want to let anyone in my world, you stood there waiting and pushing just enough to let me know your love...you did not let me push you away. You always have respected me in a way that has taught me to respect others. You are an amazing, unique, wonderful mother! I love you, Mom. Always.
Indeed, all is well...Peace my friends, Kathy
Friday, March 21, 2003 8:40 AM CST
Good day friends...yes, I noticed it is Friday. So far, so good. I did not wake up at my usual 4:30 in the morning, instead it was 5:30...and it was from a sleep that was the kind where you wake and forget where you are and such...it was nice. I went back to sleep! What a concept...
So, I am off to the beach with the my friend and her kids...shhh-don't tell my kids! Jeff headed over to the beach last night with his Mom to go hang out with the kids...I am not certain Boca Grande will survive having two Mimi's there at once, but I am sure they will find a way. The kids are not able to spend as much time as they would like to at the actual beach, because of red tide. It is some sort of bacteria in the ocean that causes cold like symptoms. Christina says she is miserable when she is at the beach, and Jess says it bothers her a little. I can remember being there with the red tide, and not being able to even step out of the apartment.
Last night was a beautiful night outside. I sat out by the water a bit...I had taken my glasses off and was thinking of life, and of Robert (of course). Even blind as a bat that I am, I could see this huge orange circle coming up over the roof of one of the houses off in the distance. I put on my glasses to see that it was the moon. It was huge and orange...rising very fast...I thought of how orange it was and beautiful. As I stared at it I wondered what a moon like that would look like from heaven. Wondered if at that moment Robert was staring at the same moon. I knew he must be. It was like I could feel him looking at it with me. I called my best friend who lives in Birmingham a few minutes later, to see if she saw the same moon; she did not...it was not that majestic by far. I went back out later to look at it again, and it was long gone, just the plain old ordinary moon was there...I thought of how it peeked up just like that as though staring at me...how I had to put my glasses on to make sure of what I was seeing.
I remembered the weather man on the news earlier that evening saying that it was the first day of Spring...as I looked at that orange moon, I remembered how Robert and I were so looking forward to seeing the orange and colored leaves in Memphis last Fall. Robert and I loved the nip in the air and the thought that we would get to live in a season such as the Fall...we never got to share that. I had forgotten that moment with him and how we longed to watch the leaves change together...I thought, and now it is Spring. I thought of how many seasons of my life I will share with him in another place...how only last year, only one short year ago my life was totally, and completely different.
I do not want to know what is coming for next year...I am cured of trying to look into the future...I am happy to live now. I am happy it is Spring, and I am try to focus on the new life that is springing forth in this very confusing and scary time that we are in...I will always, ALWAYS, have hope...hope springs eternal in me...what can I say, Jeff, I am really an optimist!
May your weekend be filled with something that shows you new life is on the way, and may you choose to savor the moment whatever it may be...even if it is a piece of chocolate! Do not even get me started on the complete and utter necessity that chocolate is for a person's life! :)That I have learned to enjoy anew as well...yes, everything is different, some things for the better, some things are not for the better...but all is well...
Peace my friends, Kathy
Thursday, March 20, 2003 6:35 AM CST
Good day friends. Well, I guess my secret is out...I can sleep past 5:30 in the morning...worse than that, I guess you all figured out that my eary morning walks with "Juliet" have gone "missing" as well...hey what can I say, it is Spring Break, right?! :)
Strange to go to sleep and wake to a world at war. I was with a friend and did not get the news of what was going on...this tells me that my Mom must be completely wiped out because she usually calls me the moment anything like this comes up...she and I are the ones in the family who contemplate these sorts of things from a very different vantage point. Rest assured, we very rarely have the same vantage point, but we allow ourselves to "vent" just the same. Politics in this family are usually better left "undiscussed". It should not surprise you that I tend to be the much more conservative one of the bunch, however, I rarely have enough information on any political topic to carry on a respectable conversation.
So...believe it or not, I will keep my mouth shut when the "grown-ups" talk politics...
I have no more stories for you this morning from the children...no doubt they are having a wonderful time. I was driving along right around 6pm, and I saw this tremendous sun setting behind the trees...I thought of the children and Mimi Bunny...I hoped that as I looked at the sun setting, they were too. I told the children the morning they left, "just think, tonight, you will be watching the sun set at Boca Grande!" Don't sunsets always look better from the shore of the ocean, then when you peak at them from behind a bunch of buildings and trees?
I told a friend yesterday...no matter what, or where I am, I always notice the birds singing in the trees, and hope to "spy" a sunset, even if it is behind a building or a bunch of trees...one of my favorite things, is to hear the birds chirping in the early morning....the other day, I saw one of our favorites, a Blue Jay...it was the male bird. He was diligently building a nest in the tree in the front yard...yes, I thought of Robert, and knew he saw him too...he and I always spotted the Blue Jays...
Can you imagine the sites to behold from his vantage point?
Trusting, all is well...Peace, Kathy
Footnote...I just read Tom's post in the guestbook...I am back to remind, not that you sensitive, caring folks need it, remind us all to uplift these men and women and their families that are "fighting" for our freedom and the world's right to freedom...it really hit me last summer the tremendous privelege I had to live in our country. I remember thinking that it was because someone somewhere waged a war and won, that I could have the privelege and luxury of "dropping everything" and be with my Robert as he waged his own war. I used to sit in that hospital and think of all who were fighting so a Mom like me could take care of her child....God bless you brave soldiers, naval personnel, and marines...and all of their families
Wednesday, March 19, 2003 2:16 PM CST
Hello friends...you faithful followers, have no fear, I am here...somewhere! ;)
This whole idea of having nothing to do that is scheduled or really necessary could grow on a gal! I know, reality awaits at every turn...I am certain it is ready to pounce at any time; never the less, I am enjoying Angel's company and her quiet ways this afternoon.
The kids are having a wonderful time. Mom says the weather is just beautiful. Matthew called me this morning to have his "Mom!" fix. He is too sweet. Mom iformed me that they are having a good time running around the island on the golf cart. Picture this, Mimi Bunny, three kids and Prince crusing around the little town checking out all the sights! Mom said that each child has had their turn driving the golf cart--please do not tell the island officials, or any one else for that matter! She rated Matthew's driving at an 8.9; Christina did not get rated; and Jessica, well she got a -3! That is because when she "took" off to start, she managed to dump Christina and
Prince off the side of the cart! Can you imagine...the Mimi, three kids, and one bouncing down the street clutching the beloved Prince as to break his fall! Way to go Christina--keep that Prince in good health! He cost us a fortune! Mom said Christina held onto that little guy for dear life and protected him from the fall...she got a little scraped up on her elbow, but is fine. I told Jess she is lucky Prince fell off with her sister, or people might think she was trying to "off" her kid sister! :)
Of course, she reminded me how I once bumped Matthew off the back of the cart one summer...you just gotta love kids with the memory of an elephant, they do not forget a thing!
So, I am trusting that this finds you well and warm...How nice to be missed this morning...Thank you!
Peace my friends...Kathy
Tuesday, March 18, 2003 8:35 AM CST
Good day friends...try not to be too shocked that it is so late in the morning for an update...what can I say, it is Spring Break!
My Mom just left with all the kids for a few days at the beach. Tempting as it is, I decided not to go! They even took Prince! Imagine this, no puppy pee or poop to clean up for like 4 days--did I hear an Amen! Oh that was just from me! The kids were so excited. Even Jessica was up at the crack of dawn ready to go. I know they will have a wonderful time, they are heading over to the West Coast of FL to a place called Boca Grande. Jeff has to work and has basketball; and me, well, I guess I have no excuse but to get out the mop and the bulldozer and tackle the kids' rooms! So, if I come up missing for a few days, don't send the coast guard just yet...however, Jenny, you can send in the Red Cross team if you would like!
I must add a little note for Jessica. She reminded me at the end of yesterday how I always called her and Robert "Irish Twins". She was highly insulted that I did not make mention of her and her "Irish Twin" on St. Patrick's Day! We came up with that because of the fact that her and Robert were 14 months apart to the day...someone told me that when they were babies, and apparently she liked the idea...she misses her "Irish Twin" and we talked about how he seeems to want to only send her dreams that are disturbing. We then joked that it was probably his way of "aggrevating" her from heaven. We both laughed at him laughing at how much he loved to make her hair stand on end...the minute the boy would come out of the hospital, in the car on the way home, he would start saying things to aggrevate her...he would contradict her on purpose get her all riled up and then start laughing and proclaim how good it was to be home! It took us a while but we finally caught on, but he still managed to get Jess's goose going all the time. I told her how excited he was the last time she came to visit him in Memphis. Of course he had no idea the fate that awaited him and why she was accompanying Jeff back there. Robert so wanted to share his time at the Target House there with his big sister. And for a couple of days before we told him about his final relapse, they enjoyed each other as much as possible.
It is still so hard to re-live and remember those days...I shared with a friend the other day the story of how Dr. Ed Horwitz sat me down that final time to tell me Robert's fate...how he handed me a death sentence for my son...telling me that maybe there would be 4-6 weeks...me and this wonderful doctor alone in the parent room looking through the glass window at Robert sitting in his bed eating soup. It is a moment that is frozen in time of my mind. I remember even what the doctor was wearing, what Robert was wearing...how the air left the room...how I could feel in my very bones that Robert would be leaving us. I could almost feel the disease growing in him. I most certainly saw it; and had even said to Jeff in the two days prior that my gut was telling me something was very wrong...I remember making the third call to tell Jeff his son had cancer, again...
It is in times like those when reality smacks you in the face that you wonder if your faith is really what it should be. I knew they said Robert had no chance of survival; they said less than 10% at best. Yet, the hope that I saw in the eyes of Dr. Hale as he said, if anyone can do it, Robert can! Knowing the facts, the cold hard facts and still believing and trusting in everything that you know to be true, that God can do anything! Very difficult...impossible...but, in the end, though not at all what any of us had hoped, begged, prayed for...Robert is victorious! I believe he chose the ultimate victory. He chose to live in heaven with our Lord...at peace, healed, complete...in a perfect place. Truly I believe that.
As I journey through life sorting through issues and facing cold hard facts of reality, there can still be hope. The outcome of things may not be the way I would have wanted or ever planned but there is always hope, faith, and most of all the Love of a forgiving, grace-filled God waiting to carry us along!
Don't tell the kids, but I am off to the beach for a bit with my best friend across the street, "Juliet" and her girls! I am a sucker for kid...especially the ones who say, "Miss Kathy, I need a hug and a kiss!" Bring it on!
Have a lovely day...
Peace my friends, Kathy
Monday, March 17, 2003 3:48 AM CST
Good morning Friends...Happy St. Patrick's Day! If I am not mistaken, there is even a bit of Irish in me from my Grandfather's side of the family, so...it is fitting for me to send greetings to you on this day.
I wanted to write to you now, even if only briefly, so that if I manage to fall back asleep, those of you who so faithfully check in on us, will at least know we are still alive and well. It is pouring outside, lightning and everything. The rain woke me up.
My friends, it was four months ago that Robert left us. Four short months...four long months...people might ask how this has affected us, for me the only way I can say it has affected me, is that "it" has changed EVERYTHING! From my perspective, everything means everything...the way I sleep, breathe, think, walk around, look at things, eat, dress(because of losing 20pounds), laugh, cry, love, and ultimately live...
EVERYTHING IS DIFFERENT--I AM DIFFERENT...WE ALL ARE.
All is Well--Peace, Kathy
P.S. The vet called, Prince's liver is fine...so, they have no reason for his seizures; he will go on medicine to hopefully keep them from happening again!
Indeed, All is well...
Saturday, March 15, 2003 6:23 AM CST
Good day.
I wanted to share with you all about the Awards Night for the basketball program the kids were involved with. The program is sponsored by First Baptist of West Palm Beach. Robert played in it last year and loved it. At the end of the awards ceremony--can you say, long and loud :)--they introduced the Robert Charlton Scholarship. They had a beautiful plaque made up with his basketball photo from last year on it. The man in charge of the program shared how the reason he volunteers all of his time and efforts to the program is because of a kid...a boy named Robert. He told how Robert touched his life, how Robert inspired him to do this for all the kids. He told how he keeps Robert's picture on his desk. Then he called Jeff and I and the children up to the front. They presented the plaque to Jeff and Jeff spoke of how Robert had at such a young age learned to be all things to all people; friend, encourager, cheerleader, ball player...how he loved to play basketball and be on a team. Jeff told them how honored we were to have our son honored in this manner; how he knew Robert would love this! It was very special. There were at least 500 people there. Many people who have known our family for years; many kids who have grown up with Robert. We used to attend church there years ago...
After the ceremony, we all filed out. I paused for a moment to look at the table and plaque. On the table they had set a large sort of lock box for people to put donations for the scholarship into. I paused to watch the children. I watched as these children folded their dollar bills and slid them into the slot...I watched one little girl as she rummaged through her backpack...I was so touch by this...they were donating to the Robert Charlton Scholarship...I told Jeff, Robert did always know his name would be "in lights" and he did always want to be "eternal"...who knew this was his legacy...Robert you made us proud, and I know this makes you proud.
NOW for the UPDATE on Prince...sorry, but, still no word. We are just watching him closely...anyone who is with him is under strict instructions to get him to the animal hospital a few blocks away if he has a seizure. They did he liver enzyme test on Thursday, but no word yet. When we know something you will know something, PROMISE :).
I thought you should know this as well. It is official...Prince is not a puppy--he is a Charlton! He may be a nosy, mischievous, house wetting, house pooping, one eye with brown eyelashes-one eye with white eyelashes Charlton, but a Charlton none-the-less! He is officially the only other red-head in the family!
All is well, Peace my friends...Kathy
Friday, March 14, 2003 5:34 AM CST
Good day dear friends. Yes, it is Friday. Funny I was lying in bed thinking that I had no words, nothing put on a page...feeling so blah. Then I remembered, "Genna!"
Yesterday I was so blessed to look at the caller-id on my phone and see the name "Genna". I could not believe it was her, I had not spoke with her in over a month. Genna is one of the most amazing young people I have ever known. She is a cancer survivor. She is so sweet, so wise--it is because of her and her sweet kisses and hugs that I have begun to kiss everyone! She plants one full on, right on your face every time she sees you or leaves you...I adore her. I picked her up and we spent a few hours together. Genna and I talked about pretty much everything...we walked along and talked about life, and living, people and how they view us, and how we view them. She wanted answers, asked many questions. I felt honored and humbled at the same time as this young lady asked me so many things. I remembered being her age so well. I was a survivor of sorts like her; but nothing, at least in my mind-Genna, nothing like what she has survived! We talked about how things change. How she has changed. How ordinary things look so differently now. She shared golden nuggets of wisdom from her family, like from Grandpa who told her to learn something new everyday. I shared any golden nugget I could think of...she was like a sponge. We talked about faith, God, friends, family...how cancer sucks, but, is apparently a very big part of life--how it can truly make or break you.
What I really wanted to share with you was this. Genna asked me, "If you could be any age again, what age would you be?" I told her, that was a tough one. I am so different than I was as a teen; those were not my favorite years--too serious, not enough fun for me. I told her how if I changed and went back to any certain age, I would be missing something--missing getting married, missing having children. I told her that for me I had thought before if I would have known Robert's destiny and suffering I do not know if I would have wanted him to be born knowing he would have to suffer. I told Genna that I remember telling the Lord that I knew how He understood the pain because He had watched his son suffer and die...I told her that I also told Him that Jesus chose that destiny-Jesus gladly died for all of us. I told her I do not know if I knew beforehand, if I would have chosen that for my Robert. If Robert would have chosen that...she said to me, that she believes Robert would have chosen that. Genna told me that she knows that Robert would have wanted to live no matter what just so he could know the love of his mother...just so he could love his mother. She said that she loves her mother so much that she would not want to miss a minute of life because she does not want to miss a moment of her mother's love...she said she knew Robert would have done it all over again, just to be with us...because he loved us so much...
I never looked at it like that. How many times in our life have we endured pain in the name of love. How many times as a parent, a friend, a spouse, or just a person living, have we suffered pain in the name of love. Would we trade any of it? Would we trade a moment of pain, if it meant that the alternative meant no love? I dare say, for me, no way. Genna was right. I think that even if Robert had known his destiny he would have said but look at all that I get to do; look at me laughing with my Dad, look at me running with my sisters and brother...look at them, look at me at my best friends house, at family dinners...there would have been no doubt Robert would have chosen it all, even if it meant he could not keep it. I never thought of it like that. Genna, you truly blessed me with that insight, with that wisdom. Thank you.
So, I wonder will I look at life so differently now? I mean the pain that is happening right now, is because we loved Robert so much. Must me be in this pain for as many days as we loved him...then we will forever have a twinge in our heart...how do you decide when the pain stops--when the loving stops. The loving, truly loving never stops. So, there will always be pain. It is our job to live with it; to smile and laugh in spite of it. It is our only way. It becomes like a worn spot on your soul that you carry with you everywhere, a bit of a scar or mark that you bear, like the rocks I found at the beach. They bore the worn spots of many years being tossed in the ocean-yet were so smooth and warm to hold. These rocks had worn spots, but mangaged to make it to shore...this pain from love can be hidden away so that the world cannot see it, or it can be shared and used to change lives. It can become an obsession, or a tool.
Many of you have not lost a child, maybe not even lost a loved one...but, you can understand this pain. Love can be painful. Yet, we choose to do it, choose to love. Sometimes it is so willingly given and received and all is well...sometimes it hurts so bad that you cannot breathe. You know this pain. Would you have chosen it in the beginning if you knew it would sting so badly? Maybe not. Would you choose it again now that you have received it, taken it in, felt its blessing? Indeed you would...For me, I know that life holds many joys and much pain-this I can be certain of. Knowing that pain awaits does slow me down a bit at times, makes me want to run and hide...but, I know that in living, in laughing, in loving...I will be honoring my Lord, and He will show me a way through whatever comes. He will walk with me, carry me, love me...I guess this would be considered a valley. A valley filled with sweet memories of a love lost; of an amazing child who is no longer by my side...a valley so deep that the only way out of it is to carry the pain along...it cannot be left along the side of the road....
Genna said it; Robert would not have changed any of it if it meant he did not get to love...
All is well.
Peace my friends, Kathy
HAPPY BIRTHDAY LITTLE MOMMA, MICHELLE!
Tom, the fish border is for you today...
Thursday, March 13, 2003 5:45 AM CST
Good day. I am glad you are here. Thank you.
First things first--Prince. We are off to the vets again this morning. The tick serology tests were all negative. You'd think the most expensive one would be the kicker, right?! Well, this morning I will take the little Prince back for the liver bile enzyme test. This will indicate whether he has a liver shunt problem. This is of most importance. If he has this, it can be pretty common, than he must have surgery to correct it. So, we shall see. I want to try to find the cause of seizures as soon as possible. It is a bit of a time game, because his seizures have gotten progressively worse. So, off we go; it may not be the cause, in the end it may be of unknown origin, and medication for his loooooooong life to come...he is fine. Funny how I have begun to look at our dogs in such a different way. I see how the children love them, how to them they are "siblings" in a sense...The Little Prince reigns supreme to Queen Mother Jessica. It amuses me so to go in her room and see his little crate, and Angel on her bed. This makes her beyond happy. Jess, you should be the first to know, I have designated Angel as Matthew's official animal. He needs his own pet, and he asked for a cat of his own, I said, no way--and gave him "ownership" of Angel.
She really is his dog; after all she saved his life twice when he was just shy of two...Matthew and Angel ruled the backyard those first two years. I used to stand in the kitchen and watch them. Matthew walked at 9 months of age; he began climbing the fence by 10 months. Angel would herd him...literally. Matthew did not speak; he would grunt. He would be toddling along and as he got closer to the fence Angel would nudge him and push him away. Never leaving his side. I would watch as Matthew would swat at her, grunt at her intent on getting to the fence. She would have no part in her boy climbing the fence. It touched my heart to see these two; Angel was not even a year old when she started herding her boy...then she did not leave his side the two times he managed to wander out the front door unattended. The second time this happened, Jeff realized that Matthew would not answer him when he called, he knew to find Angel, he would find his boy...and that is what he did. Jeff frantically began calling the dog. Sure enough, she poked her head out down the street, and there stood Matthew speaking his "furbish" to some neighbor...Angel never left his side.
I thought yesterday much of my dream I shared with you all. I thought of the words Robert spoke to me. I want you all to realize that Robert in now way felt that his life was empty. I think you realize that. I began to think of how from the moment the doctor untangled the umbilical cord around his neck and Robert drew his first breath--HE LIVED. Nothing got by this boy. He noticed the smells of you cooking in the kitchen, he even watched TV with vigor. I thought of the days when he could not move from the couch, but would yell to me, "Mom come see this, hurry up, it is my favorite commercial..." I would come running to see what made him laugh so much. In eleven short years, not only did Robert manage to learn to play baseball, basketball, fish, fly-fish, memorize the names of a million fish, draw, and study, and sing...he managed to teach all of us how to embrace life and each other...
ROBERT NOT ONE DAY WAS EMPTY WITH YOU, NOT ONE MOMENT WAS EMPTY...there were many, many, many days of love and laughter, my son; and countless moments etched in our minds. Look down upon us and be proud and smile, and say---"That's my Mom!" "That's my Dad!"...those are "My Sisters and Brother..." Your Mimi's are here, they remember, and should know how he loved each of you in a unique special way...all four of you! Cousins, friends, people that would meet him on the street...Robert, with you, none of it was empty--none of it has ever returned void.
The Little Prince and I are off. To the sweet person who wrote about Prince, anonymously, we do not know if he has cancer...he may have nothing. He may suffer from his mother dropping him on his head one to many times as an infant! :) That would be a joke guys...anyway, we will take good care of him...
Thank you for reading my ramblings...it means so much.
Peace to you, Kathy
"PEOPLE HAVE FORGOTTEN THIS TRUTH," the fox said. "But you must never forget it. You must become responsible forever for what you've tamed." The Little Prince
Wednesday, March 12, 2003 5:42 AM CST
Good day my friends, it is Wednesday. This week is creeping by...
Briefly I want to share that we have no word on Prince and his condition. We will know about the tick serology test today; if that is causing the seizures then we will know how to treat it. If not, more tests, right now, no more seizures. That is the biggest of concern they are getting progressively worse. Your words of encouragement mean so much. I never thought that God would see fit to bless us with a puppy to teach us...but He has, and you all saw it. Thank you...
I awoke this morning thinking of a million things as usual. Seems my mind does not rest these days, not ever. There is such a clarity of thought in my head as I ponder so many things and choose to allow pain to exist as I find a way to give and receive love to my family and friends as I never have before. It is a strange and unusual process. I have long considered myself a giving person. Nothing makes me happier than to "give" of myself or anything that I have if it helps or encourages another. This is different. This to me is the kind of giving that changes a person's heart and touches their very soul...it is love. Allowing oneself to open up, share a smile, a thought, a touch. Something that can only come from you...something that cannot be bought, found, or given in a box, or a gift bag...
I found myself thinking of my dream. I have been thinking of Robert so much these days. How he lived. How he died. How he has been gone only four short months, yet it seems like a lifetime ago...like now he is only a dream. My mother and I were talking about him last night. How he never cared what you were wearing, how you smelled, what you were doing, he would come up and hug you. A hug that did not let go; a hug that you had to pry yourself out of to keep something from burning on the stove...a hug that did not let go...I shared with her his words he said to me in my dream. I will share them with you now...I was standing next to his bed, stroking his hair and touching his face. I remember thinking how beautiful he was, how I wanted to gaze into his eyes, touch his eyelashes...I remember touching his face, and every feature...he looked up at me as the nurse stood in the background, a tv was on; he said, "Mom, it is all empty, right Mom...?" He said, "Mom, there are no more days, are there...?" I said, "No, Robert, there are no more days..." I touched him as tears came down my face, tears came from his eyes. He looked up at me, and was not afraid I could see that; I could see that he knew it was time for him to go. He was not afraid. He said it again..."it's all empty, Mom....there are no more days..." In that moment, as I tried to freeze it in time in my mind, I made myself wake up. I sat up and turned on the lights...and wrote it all down. I never wanted to forget my son; his face, his hair, his touch...his words...his brave spirit and heart that wanted to know the world. His heart that was not afraid to love and be loved...
He gave me great courage that Robert did. My children give me great courage. Each in their own way. I want each of them to know, that for now, we have more days. I want them to never come to the place in their life where they are afraid that their life "is all empty..." that their efforts to live, love and be loved are not and will not return void...that for me is the only way. The only option at this point. The only way to come to the end of our days and not say it is all empty...to love and be loved...in whatever small way a person can. Find it, seek it, live it...dream it if you must until you can find a way to understand it, and have it in your life. Robert knew it; he was 11. He knew that maybe his efforts to beat his disease in the end came up "empty", but that boy knew how to love and be loved...laugh and laugh with you...live and live with you...a soul that never turned away from a kiss, or a hug, or a word that would make him smile. It is all there waiting for us. No, it will not be easy. There is always pain as you risk to love and live...always pain. Nothing, I mean, nothing worth having is easy...is it?
Maybe this for me is a bit of a mission statement. Maybe as I seek to live with the deep pain and sadness that creeps in daily I know I do not want to come to the end of my days and feel they were empty...whether I achieve greatness in the world's eyes, or only get the laundry done for my teenage daughter so her favorite jeans are clean...Robert has told me to live.
I am; it may be with a whole new pair of glasses, and a broken heart...but there is a smile and hug and a word here from me if you need it, there is love...
Peace my friends, Peace to you all...Kathy
Tuesday, March 11, 2003 5:43 AM CST
*****Note***** This is Jessica . Please pray for my doggie Prince, I know this might sound silly but I love him like I would think a mother would love her new born baby.. But it appears little princie is very very very sick. Something with his liver and something wrong with a testicle.. He will not be able to be bred. Mom says this is costing my college tuition.. lol I dont care though he is worth it, Apparently though the breeder sold us a defective puppy that I love so much. I really hope we won't have to put him to sleep. My mom says we won't but thats never for sure. He has been having severe seisures too. Just please pray . I need this little dog. Love, Jessica******
Dearest ones,
Yes that is plea from the beloved Jessica...her little pup is indeed not doing so hot. He has had several seizures. He had one yesterday afternoon and fortunately the vet said they could see him right away so off we went, me and Rebecca and Prince.
So, here are the details...apparently Prince was indeed born with only one testicle; no chance of puppies for him. The doctor explained that sometimes they can come down up to about 8 months, however, he is concerned because it is not obvious where it is ...so, it could be as high up as his abdomen. This would require surgery, at the very least they have encouraged us to neuter him and that he will need to have the remaining testicle surgically removed to lower the risk of--get this all things--cancer. Poor Prince apparently has a higher risk of cancer because of this condition. As for the seizures, the vet is very concerned because of the age of the pup. He is checking for tick born diseases, and a possible liver condition. Those are the two most probable causes. To my knowledge it is not distemper, however that is a bit vague and may require a nuerologist to take out some spinal fluid for a test.
So here we were--two Mom's, Rebecca is the mother to the beloved Zachary, or Zman, her son has Stage 4 Nueroblastoma, standing there looking at poor lethargic Prince. She and her family kept him the first night we brought him home the night before Christmas...she has dubbed herself Aunt Rebecca, Zach is a proud cousin...so, here we are these two Moms, well versed in the lab work he is showing us, well versed in the vague ways of doctors "guessing", well versed in the dreaded "C" word...we both just sort of looked at each other and said of all the puppies in the world...we would have the most delightful, intelligent, loving one who has a higher risk of the "C" word, and is apparently "defective"! We literally sort of rolled our eyes at each other and shrugged our shoulders and decided no matter what Prince has to live! Say with me now friends...Prince, live! I am serious, in my mind, the rational part says, "Dog", he is just a Dog...children are my priority...but, in this instance, being that my children are my priority, I hate to think of what would come of my sweet Jessica if her "baby" was not to live...
Rebecca, thank you for going with me, and being such a wonderful "Aunt" to Prince...and friend to me. The guys were headed to a roller hockey match and I think Rebecca and I decided it was our job to get this little guy seen last night. So, did I hear someone say "Cha-ching!" This little guy has not cost us a cent, yet...just lots of love and kisses...I am praying that he is suffering from some sort of tick born disease that is easily treatable. I am praying this little guy's other testicle miraculously appears and he does not require surgery and such...not too much to ask for do you think? After all, who would Angel the dog have to boss around without Prince...Jessica has agreed to fund this effort in any way that she can. I walked in the house with her "baby" last night and she said, I don't need braces that bad! I hear you Jess, and do not worry, we will find a way...
So, how was your Monday...mine was interesting to say the least. Funny, as I looked at a lab sheet with all the typical abbreviations: wbc, rbc, hgb, CRE, BUN...I did not cringe. I sort of had a pit in my stomach and wanted to barf, but, I did not cringe. That is one of the hardest things for any parent in this situation--looking at a lab sheet. You stare at it, willing the numbers to be right; or in check...you try to mentally adjust the numbers so that you do not have to see what you dread to have to look upon...you stare at a "good" one and in that instant you decide to believe it and run and live another day...or you get a sinking feeling in your stomach never truly believing any word from a doctor again...there is not really an in-between, at least for me. Robert's lab sheets from St. Jude tell his story all to clearly. They are a black and white painting of the disaster that was happening in his beautiful body...we stopped doing lab work when we brought him home. I could not bear to look at it any longer, I could see it before my very eyes....
Here we are Tuesday, come and get us...it is a new day. Prince and I are off to the vet's this morning..."Cha-ching!" Oh sorry, I am just preparing myself...work for me tonight...
Take good care, all is well, truly....Peace my friends, Kathy
Monday, March 10, 2003 5:51 AM CST
*****Note***** This is Jessica . Please pray for my doggie Prince, I know this might sound silly but I love him like I would think a mother would love her new born baby.. But it appears little princie is very very very sick. Something with his liver and something wrong with a testicle.. He will not be able to be bred. Mom says this is costing my college tuition.. lol I dont care though he is worth it, Apparently though the breeder sold us a defective puppy that I love so much. I really hope we won't have to put him to sleep. My mom says we won't but thats never for sure. He has been having severe seisures too. Just please pray . I need this little dog. Love, Jessica******
Good Monday morning friends. Another week is on the way. I am sure there is much to discover...much to see, and love about it all...
I awoke from a dream this morning at 4:27am...I find that I wake at this time alot these days, since Robert left. I know it is because it was the moment I awoke when I heard a breath from him the last night he was here. I was having a dream and he was in it. I have not dreamt of Robert much--this does not sadden me, only because I dream of him while I am awake. Nevertheless, he was beautiful in my dream this morning. He looked as he did when he was 9 yrs old. Healthy, handsmome, his hair was perfect. I touched his hair and stroked it like I used to. I took note of the mole to the right of his nose...I looked at his long lashes, and into his eyes, the only child with my brown eyes...I listened to him as he spoke. I will not share his words, they were for me. He knew it was time for him to leave us; he knew he was dying. He cried, I cried...we talked, and I comforted him. He was lying down in a bed at the time. He needed me, but was so strong and had a peace even though he was sad...I could almost feel his face as I touched it...I made myself wake up and left my dream so I could remember it...write it down, paint it in my mind. Tell you...
It is almost 4 months. Strange to be able to have peace in your life during times like these...make it known for me, as I testify here...there is no mistaking that the Lord is very real, a great comfort, and bringing hope and faith in the midst of all of this...tell anyone who asks, how do they do it...we don't, HE does it for us, through us and in us...Praise be to God...
Peace my friends, peace...Kathy
Sunday, March 9, 2003 8:14 AM CST
Good day friends.
After work last night I went out with a friend. A Mom that I met because her son has leukemia...it was so nice to spend some time with her. We both acknowledged that though we met because of our sons' illnesses, we can see that our friendship is not based on this common factor...it is nice to be able to step out of that world cancer so puts you in, and see that it is okay to leave it...Thank you fellow Kathy for making me laugh!
I awoke this morning thinking about my third child, Christina Loren. I know I mention all of the children, but, I wanted to paint a picture of her for you this morning. I think she was particularly on my mind because last night at work a couple of the volunteers were talking about their grandchildren and remembering the "firsts" of them; their first words, steps, etc...I shared with them the first "sentence" Christina said...I can remember it like yesterday. We were driving to church, and she was all buckled in her carseat, she was a whopping 18 months old. She says "Mommy, how come we have hair on our heads?" Not, Mommy, I want juice, or Mommy I'm hungry...she had been talking for some time, but this child really wanted to know why we had hair on our heads...I remember looking at Jeff and asking did she say what I think she said. I answered her...a very insightful answer..."I really do not know...I guess to protect our heads!" Then she wanted to know "Why do they call them beanie babies...?" "Why are there beans in them...?" I knew long before this conversation this child was special.
She was my third, and she came along during a very transitional and difficult time in my life...I was at a crossroads of sorts in my mind and heart. Wanting to continue on in my education, wanting to move on and knowing that my first two were getting ready to head off to kindergarten and such...my mind and heart were in a bit of turmoil as I struggled being a 26yr old mother of two...finding my way. There was a very distinct moment one morning as I stepped out of the car to head upstairs to our apartment. It was almost an audible voice...I was about 4 months pregnant, and I suddenly felt this overwhelming sense of God's presence...He was showing me that I did not have the trust in Him to take care of my children. I could feel and sense within me the ability and determination to be able to hold my life in my own hands...I remember thinking of how I can take care of myself, and take care of Jeff, and how I was doing it all pretty well...he said, to me, yes, but do you trust me to take care your children...for me it was one thing to trust Him for myself, but, to trust Him to take care of MY children was a whole other issue...I stopped right in my tracks. It was like He was saying to me, choose now Kathy, choose either to trust me with your children, your new baby, or risk raising them in this world without the knowledge of who I am...in that moment, and from that moment on, I chose to entrust my children to Him. I could not bear the thought of raising them without them knowing Him...really knowing Him...
This moment changed me. Christina changed me. It was a very stressful and long pregnancy. The stress in my life was intense...her birth was intense, the moments after her birth were intense...she began to give me back myself. I began with her to see myself in a new light...she was a gift. My third child. From the moment she was born I felt that she had special "powers"...as she grew her touch could almost soothe my soul...I felt she must have a gift of healing in her touch. I wanted so to take her to my father who was so sick with cancer...I wanted him to be with her, let her soothe his soul, maybe heal his body...to this day, she is an enchanting child. She has a gift to love and is very discerning. I am glad she is my third. The middle child can get lost in the mix...not her, she shines all on her own...
Each of my children shine. I see it, I know that I am not exactly impartial, but it is there none the less. I am thankful to God for each one of them...they are so unique and amazing...they have changed my life, touched my heart, given me wings to believe I could fly...truly!
Thank you for checking in, and may your day be warm and full of sunshine!
Peace my friends, Kathy
Saturday, March 8, 2003 6:14 AM CST
Good day friends. I trust this finds you well...I often wonder if those of you who follow along follow along from a computer at work, or home...wonder where you are as you join this journey...me I sit at the "big" computer in the family room. It is a little room off the kitchen next to the room that was built for Robert by our church...that room is now Jessica's. I keep her door closed and put on headphones to listen to music and try not to wake her with my pecking away at the keys...most mornings there is no one else awake as I type away...this is not one of those mornings...the dogs are yapping at each other out in the back...the "little ones" are chattering away...I must admit, I need and truly enjoy my "quiet" in the early morning. This has become sort of my "cup of coffee" in the wee hours...apparently, the wee hours needed to be a couple of hours ago...don't these kids know it is Saturday morning and they should be sleeping in! :)
I had lunch with an "old" friend yesterday. She is younger than me by a few years, and also has four children...it was quite remarkable for me to re-connect with this friend at this time in my life. It seems that I have been in need of friends for some time...you know how it is in life when you become so busy with family, kids, work...you forget what a freind is and how to be one, sometimes...to me, this friend is one that I would consider to be a sort of "kindred spirit..." I think that would be a term that is truly understood mostly by women, but, guys for you it would be that fishing buddy that you meet up with, fish with all day and do not have to say a word between you...it is the kind of friendship that says many things, but understands many more...thank you for making my Friday tolerable, and enjoyable. You guys must be praying for me alot on Fridays...I can feel it, thank you...
I then went to the movies. I had wanted to see the movie "The Hours" for some time. My Mom had seen it and she is a good judge about movies and me...she "warned" me that it was intense and a bit dark...but, she knew it would be something I could relate to and enjoy. She was right. I do not know that I could recommend this movie to the masses. It is intense, thought provoking, and if you let it profound. It is about life in the mind of a certain woman. I related very much to the stories in this movie. I related to how the world can exist out there and then in my mind I could be in a totally different place...the mind is a powerful thing, and it can become a person's worst enemy if allowed, sometimes it is a person's worst enemy not by their own choice...mental illness is hereditary. Some people cannot escape the darkness and such that looms in their minds...I have seen it, it is a sad, scary existence. It can cost you your life...it can rob happiness, peace, and joy...There have been times in my own life that I have questioned my mental stability. There is a bit of a history of mental illness in my family...there have been times where I concerned myself with my state of mind...as another dear friend pointed out to me that a counselor told her; "only sane people think they may be insane...only normal people can actually think they might be going crazy..." sounds reasonable, makes sense...
This movie talked about life and moments and happiness. One woman who had outlived all of her family said, "one feels so unworthy to outlive your loved ones...so unworthy to outlive your child..." I understood this. Any parent who has lost a child probably does...yet, for me, knowing that Robert is in heaven, knowing he has the ultimate victory does not make it about who gets to live and die...it is that he is living ultimately. They talked about how life is about living in moments, that it is not something that we should wait to happen, it is here, it is now, it IS the moment to live...
So, for me, I realize that the moments are here to cherish, seize, live...I see this. My children see this. I hope that as they grow and life takes over their precious innocent world, they would have learned to live in moments--good, bad or indifferent...to me all moments are part of life. I shared with my friend at lunch the story of Robert's last night here on our earth; shared with her his last moment of consciousness, how he felt as I could feel his presence leaving us...I shared with her a very painful moment...I took her there with me. She went there, she could feel it, she loved Robert-and he loved her. They were friends too. These last moments with Robert are etched in my mind like a painting with great detail...not a watercolor awash with swirls of color...a finely detailed painting that is definite and one can see all the details. It is there...I hope never to forget that moment...I will never forget (I pray) the very moment he was born...it too is etched in my mind, and his leaving- now it is there as well.
One of the other characters in the movie was a poet. Something he said as he was close to the end of his "moments" was that he only ever wanted to write...he said to his friend that I only ever wanted to write, to capture a moment and put it on a page...he said to her, "I want to write about how you looked when you walked in the door holding those flowers, how the sun feels on your skin..." I thought to myself, that is something I would like to do, write about the moments and capture them in time some how as to never forget...much like a photograph; but give it words, life and feelings...my friend yesterday asked me what I dream of doing some day...I thought about this question alot, I do not usually ask myself such questions, I just live...well, I guess that would be my dream for now, to live--to capture moments with my children, to capture moments in this life, put them down on a page share them with others, or keep them to myself...but, for now, my dream is realized in living through these moments with my children and hoping to teach them about love, trust, dreams, hope, faith, and living...
Peace to you all my friends...have a wonderful Saturday.
Kathy
Friday, March 7, 2003 5:37 AM CST
Good day friends...it is Friday, already. I literally woke up this morning and thought, wasn't it just yesterday when I wrote to you all and said, well, another week is on the way, and here we are another week is on its way out...
Please let me clarify for all you horrified faithful followers...the reason Jessica went to see this "psychiatrist" was so that we could have a formed signed to enroll her in a "hospital homebound" program. It is my "idea" that if she is officially enrolled in a program such as this, she will not have as much pressure and anxiety about getting to school everyday; she will have a different set of requirements to have her be able to pass 7th grade. I am concerned about her absences; yes, I am concerned about her getting behind in her school work as well. Jessica is very bright, and has always had all A's...so, the goal is just to not fail 7th grade because of all this...soooooo....her pediatrician, and "normal", "kind", counselor, both agreed; but said I would have to get to a "psychiatrist" to get the paper signed...Unfortunately, the reason Jessica was hoping to be there was to find a person with whom she could talk to and such...there is not much in the way of choices with her insurance plan...and we will find someone else, either through church or wherever if she would like to continue on that route...let's hope that whole incident does not cause her to never want to seek any medical help again...she was sorely disappointed in the whole ordeal. Quite frankly, I figured that would be the kind of doctor that we would be seeing that day...scribble down some symptoms, give out a script or some samples...and send them on their way. I must admit, the whole waiting room scene does play out in my mind like a scene out of a movie, and I honestly was praying that none of the people in there had a weapon! It was so surreal, my heart ached for the folks who were clearly there in need of help...his name, Dr. Womesh Sahedeo. I do not have his address handy...and plan to report him to my insurance company this morning...you know how I love Fridays, so I should be able to muster up plenty of emotion to get my point across to them.
I am hoping to get together with an old friend today...one that I have lost touch with over the past few years. Her son and Robert were good buddies. Yesterday, I went over to visit a friend and went to the infamous Dr. Gowda's office. He was Robert's oncologist...it was his office where this whole journey began. Yes, it brought back tons of memories. I went into the office next door to his to drop off some toys and say hello...this office is occupied by a group of women known as the POST team -Pediatric Oncology Support Team. They are a wonderful group of people who really, really work hard to help families in this crisis. Robert loved popping in to visit, and we did it every time we were at the doctor's office...no matter how hungry or in a hurry, he would want to stop. There were about 5 or 6 pictures on the wall that he had drawn; and several photos of the children...funny though, to me that place as much time as we spent there, does not remind me the most of Robert...simply put, Robert reminds me of Robert...things like how yesterday morning I was in the kitchen getting breakfast for the kids, and I looked out on the couch, and there they were--the three of them lined up in a row. Sleepily sitting there, leaning on each other...there will always be a "step" missing with those three...right above their heads was a big photo of Robert...it was like he was there too...
So, off we go to another weekend. Last basketball game in the morning. Work in the evening for me. Birthday party on Sunday...sounds pretty harmless right? :) I make no predictions in this area, what may seem perfectly harmless and normal, can turn into a tailspin of emotion as far as I am concerned...
I will update you all about my friend who had her brain surgery as soon as I see her. Her children have been at the house all week after school playing-that is a good sign-her daughter informed me that she came home yesterday. I did not think it wise to desert the 7 kids jumping on the trampoline to go visit her, especially since 2 of them were hers! No stress there on Mom, "oh yeah, I left the kids jumping out back to come over...so how are you?" I will check and let you know...
Peace my friends...Kathy
Thursday, March 6, 2003 5:39 AM CST
Good day friends. I hope this finds you feeling well and on your way to a new day...
What a day yesterday was! What a day indeed. Funny how you can just sort of cruise along in life and than BAM, life smacks you right in the face...I warned Jessica that this would make it to the page today...so here goes...yesterday afternoon Jessica had an appointment with a "psychiatrist". You know the doctor that supposedly helps your psyche, the doctor that went to school all those extra years so that he can medicate the public; I am certain you know the type. I wish I could report that this doctor was anything but that type. Picture this if you will, come along with us and spend an hour and half with us in the afternoon--here is what happened...
Jess's appt. was at 2:15; you know when you see one of 3 psychiatrist that treat children you would expect to see him in the afternoon after school right? Well, that just happens to be his lunchtime...so, I knew we were in trouble when the staff so kindly informs us and the other "psychiatric" patients that the doctor was going to eat lunch, we would have to wait longer...hey, I don't care if he eats lunch, just do it while you see my daughter! So, there we sat...I got up and went out to call a friend while Jess read a magazine...I came back in to find that by now an hour later the waiting room was full of 16 people; I am talking people with issues; I felt for these folks as I realized this was their lifeline...there were 5 children in the waiting room; a teenager blaring music in his ears to drown out the sounds; another woman rocking gently in the corner trying not to literally lose it, she began to scribble on a page; another woman who had a problem with walking and her feet; the children were running and climbing on furniture and turning the lights on and off...they were running out the door into traffic, and literally tripping and climbing on the woman with the problem with her feet. The father is yelling and laughing; the woman in the corner is writing; the woman with the feet gets up bangs on the glass, no one answers, she calls the very office we are sitting in on her cell phone and tells off the doctor, no staff, no doctor no one acknowledging the utter chaos that is about to explode in the waiting room...and me and Jess, sitting there taking it all in...I am thinking to myself how lovely my humble life is looking to me now...I thought I had issues...I felt so helpless wanted to help these people at the same time wanted to myself go in there and tell off the doctor...I told Jess that if they did not appear back after an hour and half, we were out of there...she did not want to leave; she was determined to see this doctor; I was determined to knock his block off; the one woman quietly got up from her seat and left her note she scribbled on a pad...she left. The other woman with the problem with her feet got up and left...the kids were playing outside in traffic, the dad begged for medication for is daughter...we finally went in to see the "doctor"...
Needless to say, he asked Jessica what she wanted to talk about; she looked at him and said I cannot hardly speak after waiting out there in that chaos...this very smug man scribbled down symptoms of what was going on with Jess...he wrote a script for some medication, and told us that he saw his doctor last week and had to wait an hour and 10 mins and he knew he was a doctor! NO I did not jump across the desk and strangle this very smug man! There was another man sitting in the office that must have been a drug rep and was a pretty big guy, I figure he was really his body guard and would take me out if I tried anything...needless to say, I got my point across and those two knew I was not happy!
Unfortunately for me, he did not medicate me...after leaving there the pure stress of it all sent me into a tail spin with memories and flashbacks to last spring when Robert relapsed...all the feelings of helplessness as a mother to really help her children overcame me like a wave....I sobbed all the way home...the whole time as we sat in the drive thru waiting for food...I sobbed as I drove down the highway...all the while knowing that this is just another day...another day that somehow I must get through. Poor Jessica, she did not say a word; she understood...I hope. I could not help it. Matthew had called and left a message on my phone while I sat with this very smug, unhelpful doctor saying "Mom I miss you, please I just want to come home..." It was like Robert was calling me...I could hear his voice on the phone begging me to come back to hospital in the middle of the night when I had left to be with the other children...I was torn all over again...Needless to say, there is much to face and live with it...
I know today will be better. I know and hope for it. The sun did manage to get up this morning, and so did I; I managed to walk with my friend...the dogs are annoying each other...soon I will wake the children...
Yesterday as I sat at a red light tears streaming down my face, I could feel and see the sunshine...I thought how happy I was to be in Florida. I thought of all of you who are in the cold and so sad...I looked at the sun and thanked our Lord for it, it seemed to want to dry the tears from my face...it was warm and comforting...I pray for rays of sunshine to dry your tears to warm your very soul...it is a medicine that no doctor can prescribe...
Peace my friends...let whatever works to get you through your days work...be it a medication, or a ray of sunshine, a word from our Lord--maybe it is a song in your heart...let it work, let it heal...let it bring peace to you...
Kathy
Wednesday, March 5, 2003 5:49 AM CST
Good day friends...Just in case some of you read the guestbook entries, the one from Prince, the one that is a bit like gibberish...that is the new puppy, Prince. Jessica's baby; she sat with him on her lap so he could sign the guestbook...She is such a proud mother!
Yesterday I was reading a page of another Mom's...Alexandria's mom...in reading her page, I began to think of how so many friends were here for the time after we lost Robert. How so many tried and tried to make sure that we were alright. How it amazed me that so many cared. In reading this guestbook everyday, I see that so many of you do care, and are following along everyday-watching, hoping, still praying...thank you. Your words touch each of us in a unique special way.
One day I was talking to Jessica about how her friends needed to see her; needed to know that she is okay...she said to me, "But, Mom, I am not okay..." I said that I understood that, but, the fact that you can get up and breath is something, this hits too close to home for so many of us; for a 13yr. old, a 6yr old, a Mom, a Dad...a friend...truly but by the grace of God go I. I said people need to see us struggle our way through this, and find a new way to live...I said, why it is "us" that must be the ones to live this, I will never know...
I can remember years ago after I had married Jeff...he had a very close friend from high school that was killed in a car accident on the way home from a basketball game; she was one of the cheerleaders...a couple years after we were married and working with the middle schoolers in church I got to know her brother. Got to know and see my first survivor of one of life's greatest of tragedies...he was 12-14 yrs old. He was always full of life and laughter...I know that his parents smothered him more, and I am sure he was frustrated a bit with this...I remember seeing his mother. I remember going to where she worked in the mall one day, and seeing her there. I literally watched her; I stood there staring at this woman. I now was a mother of two of my own, Jessica and Robert. I remember looking at her, wanting to go up and hug her and thank her...thank her for breathing, for living. I remember thinking how does she even find the strength to stand, let alone look so normal, so like a regular person. I thanked God for her that day...never did I dream that I would become her...that I too would learn to find a way without one of my children here to brighten my every day...
I stumbled upon the video of Robert's service yesterday. I wanted to video the kids on the trampoline with the "Florida snow"...no Mom the video camera was not charged...but, in it was the tape of Robert's service. I sat there for an hour listening and watching it on the tiny screen of the camera...in the background there were 5 children jumping on the trampoline, soaked, covered in soap, playing, yelling, laughing...I savored the moment. I let myself think of my precious boy; I watched the kids...life can be so good and so painful all in the same moment.
Our good friend Lyle Wells had the most amazing words to say about Robert at his service...he summed it up saying "Robert, you have done it again...you were first...you've gone ahead..." Indeed, he is first, he is home...
I am thankful that yesterday, our home had laughter...my tears did not daunt that...my thoughts, my tears, my thoughts of sweet Robert did not take away the laughter--I am so happy to have a home that makes people happy, and children feel safe in, a home that tears cannot wash away...
Laugh today, even if it is about fruit roll ups!
Peace to you my friends, it is another day...Kathy
Tuesday, March 4, 2003 7:16 AM CST
Good day friends...I guess at some point I will get over the fact that it is March; a new year. March, 2003...certainly did not know what was in store for my life and the life of my family this year...
I have started working some nights again at the Kravis Center. I have worked nights there for the past 6 seasons; it has taken some getting used to working days; mainly because most of the guests and people I have worked with are there at night. It has been nice to be back in my element of sorts...I do miss the kids at night, but, it is a good change of pace for me.
This morning first thing before the alarm went off, Matthew came around and crawled under the covers...he laid there next to me, and I put the "seatbelt" around him as he fondly calls my arm over his tummy. Almost simultaneously, Christina came in and curled up on the other shoulder...it was one of those moments when you are sad and happy all at the same time. One of those moments that you know why you are alive, why you do get out of bed and live...a moment to cherish...I took the moment to take in the simple pleasure of having two of my healthy happy children wrapped around either side of me...and I knew I was blessed...
I think so much lately of moments. They have become like glue to me. Not entire days, not entire weeks...moments. Like choices...they come individually packaged...to embrace. Moments get me through the days. One moment being happy, one being sad, one feeling frustrated beyond measure...moments in time that add up to a lifetime of memories...
"Life should not be measured by the amount of breaths that you and I take, but by the moments that take our breath away..."
Hope you have at least one moment and can see and feel it today...Peace my friends, Kathy
Monday, March 3, 2003 5:51 AM CST
Good Monday morning friends. Whew, another weekend under our belts...this one was a tricky one, I'll explain in a minute...Can you believe it is March? Wow...
So, I have not shared about the events of Jessica's birthday because we had a surprise planned for her on Sunday, and since she reads this page daily...I had to watch myself. It was a tough one. Jessica had kept telling me that she did not want to do anything for her birthday. It was one of those situations where we all looked at each other, darned if you do, darned if you don't. Her friends felt this way too...they had planned a party for her, and then she figured it out, and told them NO WAY...so they changed their plans...it was so awful for me to see her very unhappy on her birthday...but, we worked through it. Jessica was hurt...and we managed to talk through it, and she forgave us, and then she was so happy with her surprise...it ended up being a few close friends meeting at the bowling alley to bowl and eat pizza and cake...I did not even make it; had to work, and Jeff was under strict instruction to be invisible as she "hung out" with her friends...so, in the end, she had a great time...I think? :) I have told Jeff that one day when she is way OLD, and brings home this guy that she says she is in love with ...I plan to look at this man and give him some advice...three things I will tell him...1)"I have a gun and a shovel, and they will never find your body if you harm her!" quote from the movie Clueless...2) "It is better to ask for forgiveness, then permission..." as quoted by Uncle Steve...3) Go with your gut! Jessica is well on her way to being a wonderfully complicated intelligent strong woman! Watch out world! Again, Happy Birthday, Jess, we love you so much!
Matthew had a wonderful time with his buddy Zach...I love him being able to be with Zman...Christina is finally on the mend...no coughing all night. Her and her Dad went to church together and had a lovely time...all in all, I dare say, we had a NORMAL weekend...what a concept...
Seems that spring is on its way...I hope those of you in the cold weather, and snow...especially, sweet Alexandria's parents, soon see some sunshine on the horizon...that chill can get you right down to the bone...
Peace my friends, take care, Kathy
Sunday, March 2, 2003 8:02 AM CST
Happy Sunday friends...trusting this finds you well...
Saturday was a nice day...if you can believe it, after my sharing of the deep emotion I was feeling after thinking of long hospital days with Robert...
Basketball season is winding down, all around. Jeff's season with the college ended; unfortunately, those guys just could not pull it together, and did not get to go into the tournaments and such. Jeff himself will be doing something new with basketball next season...it would have been his 8th with the college, volunteering his time...instead, he will be the Head Basketball Coach at a local Christian School, Summit Christian Academy. He will be the high school basketball coach, as well, as oversee the other basketball programs....Jeff, I hope I have this right? So, he will be meeting with the parents next week, and begin to design his game plan into making this school a viable force in their "league" in the area of basketball. I know that he will do an excellent job, and it will be a great thing for him to do and the kids will love going to the games and such...they have asked that they still get to go to some of the Palm Beach Atlantic games, as that has been a staple in their life for so many years...the school where Jeff will be coaching is finishing the building of a new gym; Jeff will have the honors of being the first coach in the new facility...a very big deal in the basketball world...should be a wonderful venture...
The kids only have one game left. Then a banquet and awards night...the church that hosts the league for the kids, First Baptist of West Palm Beach, will announce that night about a scholarship program they have set up in honor of Robert for kids to play ball there...we are so touched by this...Robert loved playing there, even though it was brief...he took to the court like he took to everything, like a fish takes to water...so, it will be an honor to know that this will be in place to honor his life...Jeff and I had hoped to have something like this in place to honor Robert in this way; I know that for Jeff in part taking the coaching job is his way of honoring his son as well...Robert I am sure will be at every practice, every game, every step of the way with him...
The little ones went with Jeff to a birthday party for the much adored Zachary! He is NINE! I cannot believe you are getting so old ZMAN! HAPPY BIRTHDAY! Check out the link to his page at the bottom and send him some love on his special day! They went bowling and had a blast apparently...sorry you missed it TOM! Then much to Matthew's sheer delight, he got to spend the night! He is going to church with them this morning...I worked! I missed it too...sorry guys, but glad to know you all had a great time...
So, off for another day, and for the record...I never did manage to get the bulldozer out and re-organize the kids rooms...I am working on it a bit at a time, in between cleaning up after the new PUPPY--UGH!
Have a wonderful day, Peace my friends, Kathy
Saturday, March 1, 2003 6:04 AM CST
Good day...Most days as I sit and write here, I listen to a certain song by Michael W. Smith, I have shared this with you all before...I am hoping to get the song onto the site soon, so you can listen to...this morning the words are falling on ears that long to hear a word of hope..."maybe there's a light in my soul...maybe it flickers like a neon sign, a sign in an abandonded hotel, maybe there are things you just cannot know, can you say there are no mysteries in the house you choose to dwell, maybe we are entertaining angels anaware, maybe there is more than meets the eye..."
I listen to these words, I think of the angels unaware...they must be so aware of us, we simply do not see them. I feel so many times in my life these days this must be the explanation for how I get through days...an angel. An angel who is designated to get Mom's through dark times...you all know my Friday dilemna...strange to have a goal in your life to try to leave the anxiety of a certain day and find a new way to embrace it...I found myself trying to figure out why exactly I become so anxious and will literally shake with this unsettling feeling...I let myself remember why this exists for me...it is definitely a by-product of the whole ordeal with Robert. Here it is months later, and I can suffer with the anxiety and tension of the days and nights when I would have to leave Robert in the hospital...the sun would begin to set; the shift changes would begin; in the PICU it was the worse, if you did not leave when they began shift change, you would be stuck in the room for 2 hours until they finished...for me the leaving the hospital to come home to be with the other 3 children was not an option, I could not bear to leave them alone at night as well, but the thought of leaving my Robert has proven to be the most daunting of all...the pure anxiety of leaving him night after night on the weekend, worrying about who is nurse would be, worrying if something happened because I was not there was and is still pure hell in my mind...even at St. Jude...if it was my night to not sleep in the hospital, or even if I was there, it was so hard for me to relax and not be "freaked" about who was taking care of my Robert. That is what it boils down to these days, that no matter what, no matter who, no matter...he is still gone. It made no difference that I knew that if I was not there Jeff was, it made a huge difference, but my Mother's heart was still breaking all along...no matter if I called and the most favorite of nurses was there...my Mother's heart broke...it seemed to break over and over and over through the months. Torn between my need to take care of Robert, and the need to take care of my other children...it has proven to be very daunting for this very strong woman...this weekend it is hitting me; all the months of living under the pressure to survive like this. I have realized that my heart is truly broken, and that now there is such a large missing piece, my Robert, it cannot be put back together properly...ever.
So, I struggle to find things to fill this void...as the tears flow and I recognize this, I keep coming back to one thing...God. Long ago, as a teenager and I began searching for something to fill a void that seemed so deep, I found Him then....now I realize I must come home in a sense, to find a way to let Him fill that void, because there is nothing here on this earth that will be able to do that...I am not certain it will be church, because that in itself brings much pain...it is truly like walking around with an open wound that is not visible to the eye so that anyone can help heal it...it is hidden away and it opens and stings when you least expect it; so, my friends, wounds like this can only be healed by a Master, by a specialist who can see that which is unseen...
Last night, our dear friend came over. A wonderful neighbor...his children play with our children, he gave much to the project of Robert's room...his beloved and cherished wife has battled breast cancer neck and neck with Robert...She was diagnosed just a couple of days after Robert--when he relapsed the next year she cried saying why him, why not me...she then relapsed herself...she has rallied and fought like a champion...her husband right by her side all the time; her children so strong...family all around...now they came to tell us the battle rages...the cancer is in her brain. It is a miracle they even found it. It is in the front right lobe the size of an egg. They are hopeful they can get what they need to be able to go back in and get it all...she had no symptoms at all. It was a chance they even found it...it is not part of her treatment plan to have a brain scan, but they did one and found it...as our friend stood in our kitchen, I could feel that angel holding me up...I could feel the presence of something that kept air in the room as we stood there forgetting to breathe...Life is not easy, it seems to be taunting us, challenging us to live...almost laughing in our faces...please pray for MARIA...I know Robert is beseeching our Lord for her right now...he loved her so...and she him...them both with their bald heads, and beautiful smiles...this woman would have given her life for Robert to live...maybe just maybe Robert you can give her something from heaven to get her through this...maybe just maybe you can give each of us something from heaven to get us through this...
Yesterday, I must admit, God was faithful, He sent a couple of friends and phone calls that I would not have normally recieved...I shutter to think what would have become of me without those unexepected conversations to get me through the day...thank you each of you, you know who you are...that is the strangest thing of all, you do not know what is going to open up that wound, therefore, it is impossible to predict that which could heal it for the time...there is no set pattern, there is no normal...
Sorry to be so glum this day...thank goodness we have basketball this morning...the kids are going to the infamous Zman's birthday party today...they are so excited...
Take good care, Peace to you all my dear friends...Kathy
Friday, February 28, 2003 7:27 AM CST
HAPPY BIRTHDAY JESSICA!
Good day friends. Yes, it is indeed Friday, I have noticed already...but, today I will focus on the fact that it is my daughter's birthday. Jessica is 13! Right now, she is climbing on the bus to school! At her school the tradition is for friends to bring a balloon and or flowers for the birthday person to be recognized at school...she loves that!
I spent last night thinking of the night before she was born. How nervous I was at the prospect of labor. I literally worked up until the moment I started labor. She was one of those 27hr ones...and she was much bigger than the doctors and nurses thought; my belly was not that huge...she weighed 9.1oz...she was so beautiful; everyone thought I would be having a boy...Everyone except me.
I had had a dream before she was born. In my heart of hearts was hoping for a girl to be born on the 28th. I thought it would be a wonderful day to be born; the last day of February...in my dream, I was going into the delivery room to deliver a baby...and my Dad was standing there holding a beautiful baby girl with the most amazing eyes. I said well Dad I am going in to have my baby...he said this is your baby--I said but Dad that is a girl, I am having a boy; he said yes you are, but this is your baby...the baby he was holding was a little girl about a yr. old...it was Jess...in my dream, I was going in to have my baby boy; Robert...Jess and Robert are only 14 months apart...so strange that it was during my pregnancy with Jessica that I had this dream. I can still see my Dad standing there holding that baby girl...and me thinking she was so beautiful...that was over 13 yrs ago...wonder what other dreams I had at that time, wonder which ones I have forgotten...So, my Mom goes up to the nurses station to ask if I had my baby...they said yes, she is fine...and then she said, oh what did she have...they said a girl! She was like no way, not Kathy Charlton, are you sure? They said yep! She was so excited...I think she went shopping that very moment! HA
So, began my life as a MOM...I loved every minute I spent with Jess as a baby. Truly some of the happiest times in my life. I focused on her and our little world. She was all that mattered to me. I left my full-time job not long after returning from maternity leave; I could not bear to have someone else taking care of her...I was jealous and did not want to share! Jessica was the easiest most pleasant baby. She went everywhere with us; everywhere...she was positively angelic! Still is...to me!
SO HAPPY BIRTHDAY SWEET JESSICA...MAY ALL YOUR DREAMS COME TRUE...YOU ARE A DREAM COME TRUE FOR ME!
I LOVE YOU! WE ALL LOVE YOU...
Peace my friends, Kathy
Thursday, February 27, 2003 5:45 AM CST
Good day friends. I am sitting here this morning wondering what to tell you all. Strange how I think of coming to this page to meet you daily. I do not presume to come here to find anyone on the receiving end, nor do I presume to come here with words that just flow from my mind and onto this page...I just come here because it is such a nice place to be.
I find myself sometimes wondering what is on my heart to put here. What is it that I need to share that someone may want to read or hear...I never know what is going to be on this page until I am finished and "proof" it...sometimes there is a story or a lesson or something that is so heavy on my mind that I put it here, other times "I got nothing"!
This morning I awoke after a long restless night,you know the kind where you look at the clock every hour and realize I guess I did doze off. I was so glad when I realized it was morning. Whenever the children are sick they sleep with me...so needless to say I have been listening to coughing and checking for fevers for more than a week now all while trying to get a few winks of sleep. I laugh at how my kids cling to me as they sleep. Even my big Jessica sometimes likes to curl up next to me just like she did when she was little. We, me and the three kids, used to always sleep in Jeff and my room whenever he and Robert were at the hospital or on a road trip for basketball. It just became the way. In my mind, I thought if something were to happen with Jeff gone, at least me and the kids would all be in one place. This comes from the days of being so afraid to sleep alone as a child. Now I am not afraid at all at night. But, for so long I would shut me and the kids and our trusted Angel up in the room for the night.
Some days can just make you feel more anxious. I know exactly how my daughter feels. I know all to well the feeling of that anxious nervousness that can try to creep in and take over your mind...it is a strange feeling. Yesterday was a long day at work. Couple that with the ill effects of hormones and "Bam" you have a Mom who needs a vacation...so, it is good to see the sun rise this morning. Good to know that I can come here and ramble and to know that somewhere there are people like me struggling through life on a day-to-day basis.
I heard a rumor yesterday that Jessica is going to school. I was absolutely elated at the thought of all the children being in school...Christina, poor baby, managed to spike a 102 fever so she is down for the count! But, Jess is going! I am still working on getting her enrolled in a part-time or full-time homebound program. Something should be in place by next week. I am going to take some time to do nothing like wander around a mall or something, or sit in my car and watch the waves...My Mom offered to have Christina at her house for me. I have been working all week, and will work all weekend...
It is time to go "kick their cribs" (Dad always said that about waking up my brothers and sister!) to get the kids up, at least when they are all in one bed it makes the "kicking" easier!
Take care, Peace to you, Kathy
Wednesday, February 26, 2003 6:14 AM CST
Good day dear ones. How utterly amazing to me that you even find the time to stop over and "listen" to my ramblings. Even more amazing is that you really do read and hear what I am saying, some of you even find a way to hear what I am not saying...to be on the receiving end of so much love and support is truly a blessing. I know that each one of the family members who reads your words is touched by them...
This has become rather theraputic for many of us...mainly, ME! I love to have a place that I can put so many thoughts. For much of my family, this is the way we stay connected. Even within this house, this connects us in a unique way. Gives me a place to put words that might not get spoken otherwise, and gives the words a chance to be received or ignored in private. That is the best option for all of this. Truly, it is a unique way of connecting, if you want to read, cry, laugh, or just hit the delete key, you can...very unique indeed. Thank you that it is not "spoiling" us with the overuse of the delete key. Many of you take the time to email me personally and all of your messages in the guestbook continue to prove that we humans do have an amazing ability to love, forgive, accept and feel for each other...THANK YOU.
Today I am off to work, and praying, that ALL the children make it to school. Quite frankly, I think Jess will have to be pulled out of school. I do not know that there will be any other option at this point. This is very difficult for me to do. Jessica attends a special school for the Arts. I love the school. If she leaves, she loses her spot for next year...there will be no going back, and if she does feel up to public school next year, it will not be that one...so this is a very big decision. I am not opposed to the idea of homeschooling, but, in some ways it will be tough. I was hoping to start working more outside of the home, but, who knows...something will work out. I have been fortunate over the years to be able to work from home before, soooooo you never know...it will be rather taxing for me to keep up with homeschooling for Jessica, as she is very bright!!
The children are pretty well on the mend...this was the strangest, biggest pain, this illness they have had. Jessica is still not feeling that well...Christina either...for those of you wondering, all of my lab work has come back normal! So, I guess my cholesteral is fine, my glucose, my thyroid, and everything else is okay. They checked my thyroid because I had lost so much weight. It was so very nice to hear that it's all "normal" on the other end of the phone. To say that I am a bit paranoid of getting lab results back is an understatement.
So, friends, we are off...I think it is Wednesday, in the month of February, right?
Have a wonderful day, Peace my friends, Kathy
Tuesday, February 25, 2003 5:58 AM CST
Good day friends. I cannot believe that February is almost over...Friday, the 28th is Jessica's birthday...the BIG 13! I can't believe that me at 29 1/4 has a 13 year old!
Today will be a busy day...I have ordered Jessica to school today. I need to BOMB the house. We have, of all things, ticks...gross, is right! We have not so much as had a flea in all the years I have had pets, but, Tick...yuck! So, I am kicking out all the animals. Our old lady kitty will not be happy at all about being kicked out, she never leaves the house, but, I don't think the alternative of leaving her inside will work. I plan to put her in the kennel on the back porch with the other animals out in the yard...should be interesting.
I pray that Jess is able to get to school. This week is the week for some standardized testing to pass FL schools. I told her she HAS to take them...my goal is to one way or another get her through 7th grade...I would hate for such a bright child to be held back because of all this! That would be another loss...
So, off we go...it is already getting warm at 6am when we walk...summer will be upon us soon. It is truly hard for me to conceptualize that some of you who read this have snow! or at the very least are still freezing! I am a Florida girl for sure...one that loves AC! I know that would make my Dad so proud! :)
Take care and I will be back...Peace to you, Kathy
Monday, February 24, 2003 7:50 AM CST
Good Monday day! Another week is upon us...
The children are on the mend, physically that is...the battle rages about the school thing with Jess. It is a tough one! Jessica, I know you are reading this...I am trying my best, doing everything in my power...
Yesterday, I found, in one of the many junk drawers in the kitchen,a treasure...it was a torn out page from Robert's journal...a true treasure indeed!
9/21/01 "Right now I'm haveing Ovaltine. Its the bomb chockalate milk. It's quite easy to make. Just add 2 teaspoons. My mom says to only put 2, but I put four. Gulp Gulp mmm thats good. Now I'm listening to the backstreet boys--Don't want You Back. "
A boy after my own heart, chocolate milk! What a guy...
Thanks for checking in on us...
Peace my friends, Kathy
PAIN
When we must live with pain
that dark-robed visitor
becomes more bearable
as it grows more familiar.
We begin to sense how long
we must endure its presence,
we understand when to struggle
against its grim power
and when to submit.
Through pain we learn about
our bodies and our spirits.
Pain cleanses us, the edge
of its robe sweeping away
regret, confusion, and pettiness.
And when pain parts from us,
releasing us from its grip,
we are left empty, purified,
and grateful for small pleasures.
Suzanne C. Cole
Sunday, February 23, 2003 8:31 AM CST
Good day friends...It is Sunday, the beginning of a new week. Let me be the first to tell you, I truly questioned if I would even make it to Sunday this weekend...by Friday night at 6pm I was having a major meltdown...I finally managed to retreat to my "Juliet's" house across the way for a hug and a good cry...I knew at her house her beautiful two yr. old would look at me at say, "Don't cry Miss Kathy..." children do warm my very sad cold heart...they are magical...angelic. So, I made it through.
I do not know how I would be making it through except for a few close friends who do not judge, who only love and support me...in everything...thank you. Funny, I walked into work last night, and a co-worker, a man that I have known for years, looked at me and right off the bat said to me..."Kath, how was your Friday?" I looked at him a bit puzzled, he replied, Fridays are hard for you, you hate them...you told me last week at work (it was Friday, Valentine's Day)...It made me smile so to know that he of all people would remember that and be kind enough to specifically ask me about Fridays...thank you friends...
This morning I went on a long walk. No Juliet, just me and my music. No church around here this weekend, everyone is sick, sick, sick...that is why by Friday night I was so weary. I found myself wondering how in the world did I manage to take care of Robert and the other three children for so long...yes, I know Jeff was there, but, a Mom bears a different responsibility so lets not go there...it was very overwhelming to me to have three feverish, achey chilren to tend to...I realized that normal day-to-day stuff I have gotten prety good at handling; this was quite a curve ball. It almost got me right in the head!
As I walked I of course thought of my life and what has become of it...thought much about the way I am choosing to live my life. I find myself battling many things these days. Besides just the normal getting out of bed and facing the day stuff. I have chosen this time to make some very big changes in my life. It is not easy. Many view my decisions and choices as selfish, some dare say even manipulative...I ponder these things very deeply. I make no such life changing decisions lightly or without great thought...I do not know how prayer fits into my decisions at this time; I feel as though I think of my Lord more now than ever...I am certain there are many within our community, church family and such that would not agree with my choices of late...I think of how I used to work so hard to fit into the standard of what I thought God and my church and community expected of me. I thought back to the days when I literally worked for my church, taking care of children in the nursery. I think back to that time and hours that I spent in service to my church...I think of how I thought the more I did the more accepted I would be...I look back and realize that no matter what I did then or now, it is the same Lord who loves me with my broken, scarred, I dare say a bit confused tender heart...he saw it then; he sees it now. Strange how even though I surrounded myself, and busied myself with things of the "church" with Bible Studies and friends, I felt lonely, and struggled to find my way...it is the way of being human. Now, I realize I have a very good reason to be struggling, confused and hurt...it is a different pain I live with now, a different set of standards for my life. My Lord loves me just the same.
For me, in this life, there will always be times that I could be better, more Christ-like, more the way someone would like me to be...but, for me whether I am devoting all my time and energy to what others deem valuable and acceptable and necessary to be pleasing to God is not the point. For me now all that matters is that I know He loves me and accepts me no matter what...it is called GRACE people, and it is a free gift. I am not talking license to party and go nuts...I am talking about having a peace that passes understanding in the midst of the most traumatic, confusing heart-wrenching time of my life...these days, my good works are not measured by how many church services I attend, or how many diapers I change in the nursery...my good works are measured in the way that I can find the courage to face a new day; to find the love and courage to help my children find their way; it is in the way that I try to help Jeff find his way; it is found in the way that I have learned to love new friends and be loved in return...my good works may not be measured in statistics or numbers or in a "mission" field...for me it is in letting people see me as I am; a broken-hearted, very courageous, a bit confused, determined woman who must find her way in this world anew...it is for me being a mother who people look at and wonder how in the world does she breathe...
For me, it is a new way, a new day, a new beginning...it may not be picture perfect; it may make some frown, and some question my motives...but it is my way, and I know that my Lord, my Jesus, my God is right here with me watching and pulling me through...so all you theologians out there...look in wonder and give me all you got, I am ready...
I need to go now, I think one of the kids is throwing up in the bathroom, back to my oasis that I have found...back to the land of the living and the laughing and the loving...my new motto..."Life is hard, love should be easy..."
Take care, and Peace my friends...Kathy
FOOTNOTE:
Dear Kathy and Jeff Charlton,
Quilts of Love has completed a Memorial Page in memory of your beloved child Robert. We hope you will receive some comfort from our efforts. This Memorial Page has been linked to our site Index and please feel free to give out the URL to friends, family and visitors to your website. We want you to know that your child will always remain a part of our Quilts of Love Family. You may visit this page now by going to http://quiltsoflove.com/memorials/robertC/angelrobert.html
This has been a labor of love for us to make this page and the graphics for Robert. Please accept our sincere condolences on your loss and know that we will hold you and your family in our hearts and prayers.
Sincerely
Quilts of Love
Friday, February 21, 2003 5:51 AM CST
Good day friends. I have decided that no matter what, I shall start my page with a greeting wishing you all well. I remember having a discussion with Jessica once about how she decides that certain days are gonna be "bad" ones...I said, how can you pre-determine a day is going to be bad before it even has a chance to get started! Such is my life...
If ever there was going to be a day pre-determined in my life to be bad, it would be today...I feel the blues creeping in and trying to sneak up on me...they have tried before, I give in a bit, but at the end of the day, I truly believe the sun will rise tomorrow...and tomorrow...and tomorrow...I am an optimist--Jeff always told me I was pessimistic...I never agreed, a bit of a realist, yes, but never pessimistic.
So, there is very good news to be spread on this dreary damp day...that little one I told you about yesterday, the one they said had leukemia and was having the bone marrow aspirate...well, THERE IS NO SIGN OF DISEASE IN HIS MARROW!!! DID I HEAR AN AMEN! I told my friend as he shared this news with me, I felt like "we" averted a disaster...I said "we" because "we" are a community, a family that rallies around our children to save their very lives! Apparently he has some other disorder that Down's children are pre-disposed to and his is a mild case and can easily, readily be treated...
THANK YOU LORD FOR ANY AND ALL THAT YOU INTERVENED WITH FOR THIS FAMILY!
This week has been long. Jessica has been sick all week. Fevers on and off...I pray that when she awakens this morning she will have some relief...for her and ME!
Within all of this, I am finding ways to find time to be able to gather my thoughts and stay strong. This is not easy in a house full of children as you all know so well. I have become a master at finding ways to get some time and space to think...it may be in the middle of the night, or in my car as I drive down the road...but, I find them, take them, and cherish them none-the-less...
Also, within all of this, I have concluded that I hate the word "Good-bye"...strange isn't it how simple things in life can become so big...for obvious reasons I do not like that word, and for not so obvious reasons...I think I may stop saying that word altogether...I decided it is a necessary word, but one that can really hurt under certain circumstances...good-byes have taken on a whole new meaning to me. I have always been very conscience of this word; my girls and I notice how on one of our favorite shows that we watch, 7th Heaven, they never say goodbye...they hang up the phone, no good-bye, they leave each other, leave a room, never say that word...it is bizarre. We spend so much time saying good-bye to one another, that we hardly even know we were ever even together...Not so for me anymore...I think that is why I always bid you peace at the end of my page...I cannot have many more good-byes in my life, I have met my quota...and then some...
So, I see the sun peeking through the clouds, it is a day to rejoice, to realize a family averted a disaster in their life yesterday...friends are growing, changing, life is moving forward...some of it easy, some of it painful, some of it downright insane! But, moving forward it all is...so I must go, and join the sunshine and the living of this day, Friday...a day to be blue...a day to find something to smile about...
Good day my friends, and Peace to you all...Kathy
Thursday, February 20, 2003 5:22 AM CST
Good day friends...yes, even today I shall say, Good day...it is a drizzling, damp morning. No morning walk, it is a day for thoughts and tears I feel...yet, even in this it can be a "good day!"
I received a somewhat frantic phone call from a very dear close family friend. He had just received word that a beloved nephew in the family is believed to have leukemia! I have chills just contemplating the fact that not only has our little community just begun to mourn the loss of one we have come to know through these pages, Alexandria, now we have another one that we may be getting to know because of this disease. This is the sort of family that would gladly close its doors and never have to welcome another one in...I told my friend that Jeff and I would do anything, ANYTHING, in our power to help...
This friend and I discussed many things. His family watched our journey with Robert...they are hoping for the best, but, the reality of Robert and his blasted statistics is smacking them in the face...my friend and I discussed some of the "why's"...the wonderment of Did God do this? allow this? WHY! Well, many of you who have followed our story may know how I feel on the subject...I have contemplated this question many times...I have concluded this much. Our God is a loving, gracious, Lord...he after sent His only Son to dwell among us and ultimately be the atonement for our sinful lives. To me, I cannot, will not accept that He, our Lord, has anything to do with these children getting sick...genetics, our environment, evil that exists in our world. Our Lord awaits to provide the grace and love and courage and pure grit to get a family through any and all of this. That of course is my perspective, and my humble opinion.
I chose long ago within this journey to not blame God. I had to choose that to survive...many, many parents do not. Sometimes it is easier to live life being able to place blame and be angry...God is a big God, He can take anything we throw at Him; even our blame and our anger. I simply cannot do that. I do enough things in my life to alienate me from Him...ie, sinful ways...I personally need to believe that He is ultimately on my side. "If He be for me, than none can be against me..." I may appear to be this strong woman, ready to take on the world, but, it is should be no secret from which my strength comes from...it should be no secret even to me.
This morning, another precious child will be facing a life of major uncertainties. At 8am another child will have a telling bone marrow aspiration. He is two; he has Down's Syndrome, let's balance out the odds already stacked against this child. Let's start now with the petitioning, the begging, the utter pathetic pleading that is truly an expression of our very fragile hearts...he deserves all of our hard work and effort...maybe we together can have this little one be the miracle we have all been looking and waiting for! He is at the beginning of a long road. He and his precious family...they will need wisdom, courage, strength all beyond measure--I speak from experience...it is a fight from the beginning--it is worth it, every child should have a chance to live!
Today was the fateful day that my sweet Robert only last year began to lose his battle...I remember it so well-he and Matthew in the doctor's office with me...Dr. G coming in and asking if Robert had the sniffles or a cold or anything. He prodded and desperately was looking for something to jive with why his wbc was elevated...he took me into the hall and told me this was bad...very bad. Robert's disease was back...he was shocked and sick to his stomach you could see. I left my boys playing video games in the room, as I ran out gasping for air into the haven of the offices next door--the ladies that work there help families like us, they do an AMAZING job...I knew I could gasped and cry in there...and call Jeff. So, I huddled in a back office, trying not to upset another parent...and made another dreadful phone call to Jeff telling him the cancer was back...Robert begged to back to school, he felt fine...he had 57% blasts in his blood...
This disease is relentless! It does not quit! We must not quit...put down your pencils, close your eyes, breathe in some air and pray for a new child on his way into a new world. Pray for a Mom and a Dad facing obstacles never imagined with their beloved child...Grandparents, Aunts, Uncles...this disease is relentless, it gets a hold of all in its path, it will try to harm anyone who rebels against it...
Robert's last journal entry...2/20/02
"Daytona"
Last night me, my dad, and the whole PBA basketball team took a bus up to Daytona for a basketball game against Embrey Riddle. It took 3 hours to get there not including bathroom brakes. I rode on the front of the bus by the driver he let me open and close the door every time we stopped.
When we arrived at Embrey Riddle the team headed strate to the locker rooms to do chaple. (They do that every game). When they got there jurseys on the team went out to the court to warm up. I also warm up with them sometimes. Right before the game Coach Wells gives his prep talk to the players then its game time.
This boy loved it all...truly he did!
Peace my friends, stay dry and warm...Kathy
Wednesday, February 19, 2003 6:05 AM CST
Good day friends...wow, another week is zooming by. I used to wish time would stand still, now I am not so sure. In a way as time passes, it is supposed to bring healing, restoration to the soul and spirit...if we let it. So, for me when I realize, I, along with my family, have made it through another week, I feel I have truly accomplished something...strange to just sort of focus on existing ...simply, gracefully, humbly exist...
I want to share a journal page that is very close to my heart from Robert's journal. I dare say it is not necessarily profound in nature, it is not the one that touches my heart where he talks about my cookies, or the one where he talks about his Dad...it is the one that he speaks about one of his last fishing trips--a fishing trip with his beloved 5th grade teacher--the infamous, Mr. McMahon...
Robert Charlton
2/19/02
"Fishing with Mr. McMahon"
Fishing with Mr. McMahon was fun because he's got a nice little boat with a fifteen horse power engine. The reason I like fishing with Mr. McMahon in his boat is because his boat can fit where normal boats can't go. When me and him went fishing yesterday we each caught two fish each. I caught a peecoc bass and a brim. Mr. McMahon caught a oscar and a brim, too. That's pretty much what we did when I went fishing with Mr. McMahon....
This fishing trip was a promise made good by Robert's teacher. On his birthday in the April prior, Mr. McMahon gave Robert some coupons to give him a fishing trip with him...It was a day off from school, President's day. Robert loved fishing these canals. His counts were good, and one of my favorite pictures of Robert is him holding a fish in his hand; it is on the front of this boat, and from this day...Robert must have felt pretty brave that day, because he knew how cautious he needed to be with the canal water, and fish and such...he has the biggest, most wonderful grin on his face as he shows his fish...it is pure delight. Even at that moment, his cancer was creeping in...I look at that photo as one of the last pure moments of Robert's childhood, even though he was on treatment, he felt he had beaten it down, and was strong...two days later, a finger prick away, we found it was back...taking over his strong 10 yr. old. body...
Mr. McMahon, thank you for being the kind of teacher, friend and man who keeps his word. You know how much that day meant to Robert...you too can see it in his eyes in that photo...thank you especially for having the presence of mind to take that picture...you truly capture our boy in that moment...for that I will be forever grateful. I know even now, you continue to touch the lives of your 5th grade students as only you can...you are a true hero to this family! Hold onto your hats, there are two more Charltons on the way up!
I have to share this story with you as well...it cracked me up when it happened...I had sent Matthew down the hall to find shoes to finish getting ready for school. Well, the tornado that is their closet is only half cleaned up (I know fire that maid!), so Matthew comes out with a sneaker we have not seen in months, determined to wear them! Of course the ones by the front door will suit me just fine, get dressed I holler...he says, I want to wear these...I tell him that only the Lord Himself can find that other shoe in that closet...I told Matthew to ask the Lord to show Him where it was, I reminded him that He sees everything...so from down the hall, my very practical 6yr old hollers, "But, Mom, God can't point to my shoe!" I had to laugh, because according to Mom's all over this country, that is exactly what God does, points to shoes that suddenly turn up with no other explanation! I mean is it a mother's sixth sense that manages to find everything...or is it that unseen finger of God leading us...God can't point to my shoe...very good Matthew, keep looking for the hand of God in your life son, you will surely see it!
I do hope that this Wednesday gives you a reason to smile...even if it is over the image of a kid rummaging for a lost shoe, or a boy holding onto a fish that he so proudly caught and kissed as he sent it on it's way back to sea...
Peace my friends, Kathy
Tuesday, February 18, 2003 5:29 AM CST
Another day is here, not to be taken for granted...it is a bit chilly out this morning...damp, and chilly--no snow though.
I sit here this morning thinking I have no words to write...thinking I will just leave a poem or two I have come across that touched my heart...then, I begin to remember that another precious child left this earth just the other day. Sunday to be exact. She left on a Sunday as did Robert...she left as much on her terms as she could, just like Robert. Sweet Alexandria fought and lived longer than they said she would, as Robert did...she left this place clutching the things she loved-her mother, her father and a beloved toy...for Robert, it was his mother, his father, and his beloved blanket...either way, they are both gone.
I am sure that only a few months ago, even in the midst of the battle that was raging against the cancer, her parents had hope. Had promise of healing...their faith did not waiver. I am sure like me they looked at their daughter lying there not breathing and thought "okay, Lord, now she can get up and walk..." I remember staring at my Robert, thinking even in that moment when he became lifeless, that he would be healed, rise up and be healed...yes, I believed that until the very end...I would believe it all over again if ever I had to.
So, what can I say, I am at a loss for words. At a loss for the unbelievable, outrageous loss of children! It seems like so many...I cannot even count. I can remember a couple of years ago, thinking I had been to so many funerals...and now, I am watching and reading about beloved, precious children waging a war against an unseen menace...forget Iraq, forget stinking, lousy Sadaam Hussein--I mean can't we try to save our own children!! I realize there is so much to pick and choose from these days to fight about, so many necessary battles and wars to wage...but, what is really going on here!!!! How many children must suffer and die. If I here one more statistic or statement saying that it is the most curable of cancers, I might just puke on whoever says it! Is the money really going there...I realize that as little as 10-20 years ago, getting this disease was an automatic death sentence...I know they have made leaps and bounds in progress, but, I dare say it is not enough....give these kids a chance. Or at the very least, take away the darned statistics...do not look these children in the eye and tell them they will be fine, that they will suffer and endure pure hell and then be fine...somewhere, something has got to give...
Well, I guess it is a good thing that I had nothing to say today...nothing at all...
Peace my friends, send your love and support over to Alexandria...oh you faithful followers who joined this journey out of devotion not because you had to, continue to support those of the living that ARE STILL WITH US by signing their guestbooks, and whatever else you are led to do...
Thank, as always for stopping by...Kathy
PAIN
When we must live with pain
that dark-robed visitor
becomes more bearable
as it grows more familiar.
We begin to sense how long
we must endure its presence,
we understand when to struggle
against its grim power
and when to submit.
Through pain we learn about
our bodies and our spirits.
Pain cleanses us, the edge
of its robe sweeping away
regret, confusion, and pettiness.
And when pain parts from us,
releasing us from its grip,
we are left empty, purified,
and grateful for small pleasures.
Suzanne C. Cole
*Special note...to the "Friend" who signs this page anonymously, thank you for your insight...I am glad to know that you are watching, you may be someone I see everyday, I truly have no idea, and have no intention of figuring you out...:)
Monday, February 17, 2003 7:13 AM CST
Good day...it has been three months since Robert left us. So much has happened since then...in some ways it seems like time has passed much faster, in some ways, it seems to have stopped...
This morning I went very early to have some lab work done...as I sat in the lab room it brought back the memory of the day I took Robert for his first lab test. He was so frail and weak. I remember how he was too tired to be scared. How they could not find a vein. I remember feeling that giant pit in my stomach for the first time...that pit stayed with me for 2 yrs...I knew at that moment when there was no vein to find, that my precious son was desperately ill. Everything within me wished I had the strength to carry him out of there...the last time I promised my son that I would do something for him if it meant carrying him out on my back was the day we brought him home. As parents that is what we all long to do...hold our children in our arms and make it all better...I know right now in so many ways my beloved parents wish they could hold me and make my life all better, I also know that the pain they bear at the loss of Robert is great as well...
The lab tech who drew my blood had the sweetest spirit about her. She said to me the body is an amazing thing, we take it for granted. She was so soft-spoken and gentle...she seemed to sense my grief. I wanted to tell her about a boy whose body gave out on him just 3 months ago; how I have learned that the human body is frail, but the human spirit, it is great. Our bodies may be defeated, may betray us, but our hearts and minds can be so strong if we let them. I chose to embrace the memories of my sweet Robert's journey this morning. I chose to let my mind go back to the day in the lab with him. I allowed myself to dwell there for a few moments and remember...I told Jeff, this is my way, this is my choice...I survive in this. It may be sad, it may be hard, it may seem impossible at times, but all of these memories and moments are what make up my life now. I am the mother of four amazing children, one of whom is gone from this earth.
Saturday at the kids basketball game I just happen to sit by a woman who had just lost her 40 yr old son. She said she had lost her husband and lost others...but, to lose a child, no matter how old, is just not right. We comforted each other in a way that only we could, we were connected in a very unique way. Such different worlds we all live in, yet, if we allow it we can come together and rejoice and live...
The children are home from school today. We may venture to the beach. Matthew is looking forward to seeing his buddy Zachary. Zachary has a link at the bottom of the page...as you look at the links, the one for Alexandria is there. She may have already left this place...her time was so near. I read her story, and this morning on the 3rd month "anniversary" of Robert leaving I remembered that morning. I remembered knowing it was Robert's time to go. How Jeff and I sat with him, no hospital smells, no hospital sounds...no IV lines, no oxygen, no needles, no pain...just peace and light flooding the room that blustery November morning. I remember the last moments with such tenderness...it is very painful, but comforting in a sense that it was so peaceful, so loving, so complete...he would have wanted it that way. Robert lived so freely, and he died so freely...free of the world's hindrances, of his disease's hindrances...he chose to go in his own way, in his time. I will never be able to accept that his time here was always to be only for 11yrs...but, I must learn to live with it.
Remember, take those moments, take it all in, linger a bit...look at the moon, smile at the person next to you...laugh, smile and live...God be with you.
Peace my friends....Kathy
P.S...the lab work for me was just a standard thing my doctor wanted done...no worries!
Sunday, February 16, 2003 8:52 AM CST
Hi, Good Morning to everyone. This is Jessica Charlton (Robert's Older sister) for a change, when I woke up this morning I was very sad because of a dream I had. In my dream (to prepare you I must say I always have really weird dreams) my dad and I were getting to go to war. And everyone (all of my family) was at my house. So I was just hanging out getting ready and I went into robert's room. There he was just sitten on his bed watchin t.v. and one of his buddies was on the other bed. In my dream I didn't think anything of because I didn't realize Robert was there till afterwards. So then I was just walkin around the house and all of the sudden I hear a voice singing. It was coming from the bathroom in the hall. My mom and Uncle terry are already there and on the door was a sign and it said Don't come in I am taking a stinkin cold shower. But the voice was beautiful. Just thinking about it I want to start crying. It was deep yet it was sweet and light. Sounded like a child yet overpassed a child's understanding. And the voice said I didn't get to really live my whole 11 years, but I'm okay now and you have to live on. It will be okay. And then we realized no one was in the shower. And we all started crying because we realized it was Robert telling us he is okay. We will be okay.
This helps me so much because I have been wanting to have Robert in my dreams. Matthew is the only Charlton that has this luxury. I still can't get over how beautiful the voice was. And a little clue to everyone, ROBERT LOOOOOOOVED TO SING! We would be in the car and he would hear a song and it would come back on later and he would sing to it because he could remember all the words. He was in chorus at school too and all I can say is the kid was a singer.. He took after both my parents. My dad loved to sing too. And my mom has a nice voice too. Well I just felt I needed to share this dream. Have a wonderful day and all those kids out there who read this have fun on our day off. (Monday)
Love, Jessica
Friday, February 14, 2003 6:06 AM CST
Good Morning. I want to share another page from Robert...there is no entry on Valentine's Day from him-so I went back to January 14,2001...
"My First Game" My first game is this upcoming Saturday against the Heat. I'm on the Lakers. I'm also very excited because I've got'n alot better over the weekend, I was going to bring out my technique on the other players. My coach, Herb Triplette is the owner of the league so we have the unfair advantage. Which I don't like one bit. Cause the other team's coaches are just regular coaches. I'm so excited I'm leaping for joy and that's all on the agenda for the weekend. I'm looking forward to my first game."
***HAPPY VALENTINE'S DAY***
"If someone loves a flower of which just one example exists among all the millions and millions of stars, that's enough to make him happy when he looks at the stars."
The Little Prince
Have a lovely day...Peace my friends, Kathy
Thursday, February 13, 2003 5:53 AM CST
Robert's journal page, dated, January 18, 2037 (it was really 2002) just weeks before he relapsed...
"The Future" I'm almost 48 years old. I have a wife and kids, 3 that is. My wife is 48 years old her name is Caitlin, we went to Elementary school together. My kids are 20,21,24 there names are Andrew, Jacob, and Marine. Marine is the oldest, Andrew is the youngest, and Jacob's in the middle. We live in a house just south of mercury. I work at the mining facility by Jupiter. I drive a hovercraft 200,000,000 it's the fastest ever so I'm never late for work. My wife works at the nursing home where my good friend Ryan lives now. Me, and Ryan go way far back into kindergarten through 12th grade. We've been buddys ever since. Bzzzzz...Oh, I'm going to be late to work. Bye!"
That child had quite an imagination...wonder where he got that from? I picked this entry because it made me smile so...to think that Robert had thought of his future and dreamed of a life far off someday. He always talked about growing up, getting married, and having children...all while he daydreamed the days away...and yes, he always thought that wherever he went Ryan would be right by his side.
Matthew went to Ryan's house last night. On his way over I told him that if Mrs. Maloy invited him for dinner that he could stay. I told him you know that was Robert's favorite thing in the whole world...he said yes I know. He loved to smell her cooking and go into the kitchen with Mrs. Maloy.
On our way we saw two of the neighborhood boys out front playing catch...I said, "Matthew, look at that boy." There in the yard was a giant version of my little blonde-haired curly Matthew. Matthew said, "I know that boy Mom, he goes to my school..." he went on to say, "everyone always says that he is my big brother...I get so mad Mom, I tell them he is NOT my big brother, my brother is in heaven!" Matthew said, it makes me so mad when they say that...he said, I wish he were my brother, though, I bet he is nice like Robert was...I kissed my sweet son and watched him skip into Robert's best friend's house to visit...as I cried my way home, I saw these boys again. I saw these two brothers throwing the ball out in the front yard. The older brother smiled and waved...I thought of how much Robert wanted to teach his little brother and how much Matthew wanted to learn...
These days, it seems tears flow more readily. The cold hard reality that an amazing child, my son is truly gone hits hard and hurts...I guess even a carefree loving soul like my Matthew is feeling the reality of it all. We all are...I know this. As my Mom wrote in the journal, the rains could come and it would not be enough to wash away the tears...
It is Thursday...another weekend approaches. Thank goodness I have my crazy animals to make me crazy...listening and watching the new puppy entertains us all! He certainly adds a new sideshow to the circus that is our household!
Thank you for stopping by, and thank you for being brave enough to journey with us...
Peace my friends, Kathy
Wednesday, February 12, 2003 5:29 AM CST
Good morning dear friends...it is another day. A bit chilly outside...we had to cut our walk short, our blood was running a bit thin and we decided we wanted more sleep!
Last night just before bed, Matthew asked me if he could call his new "best friend", Zachary. Zachary is the son of some of our newest and dearest friends. We met his family last year in the hospital when Robert relapsed. I looked at Jeff and said, I think Scott, Zach's dad, is going to be one of your best friends ever...I was right. Over the year we have grown very close to this family-they have become our family as well. Zachary has nueroblastoma...and has relapsed as well. Matthew loves him very much. The very first words out of Matthew's mouth to his friend were, "How are your counts?" "Are they up?" "How are you feeling?"...he then asked him if he grew any more cells...and the deep concern in his voice, and look on his little precious 6 yr. old face said it all to me...he does not want to lose his friend to cancer...not ever, not like he lost his brother. At his very young age, he has learned that cancer kills...cancer can take loved ones from you.
I see in him a faith--a faith of a child still willing to believe that miracles happen. HE believes...he is a loving, trusting, child...If only we could package that sort of faith. A faith that is willing to make a new best friend, even knowing the odds. A faith that is coupled with enough love to believe anything--ANYTHING...faith to me springs from love, or rather maybe it gives life to love...my young son, does not contemplate such things, he only knows that he loves his best friend, wants to talk with him on the phone, hear his voice to know he is there...to him, I am certain in talking with his best friend, in a way, he feels his brother. I am amazed at the capacity of this child to love--the love he had for his brother was the purest of loves. It was based on hope, and strength and courage. He watched it all unfold, he went into the trenches with his brother at his young age. He chose to love and believe until the very end...and chooses all of this even now.
Yesterday, we received a newsletter from Ronald McDonald House in Memphis. In the back is a section for honoring those who have passed recently...the list was so LONG...on it, I saw the name of another boy we had gotten to know there. A boy the same age as Robert. They had played and shared together...the other children remembered him as well. He is gone too...gone to heaven...
Pretty much guys, this truly sucks...sorry for the lingo--but, I am at a loss for a more descriptive word...and that is what it is--awful, sad, heartbreaking, it sucks...and we must continue on. We must, find a way to believe, love, laugh and live...we must not let it consume anymore than it already has.
Robert relapsed on Feb. 21, 2002. One short year ago...I will continue to write his last journal pages he did for school before he knew his cancer had come back...
remember as you read his words, his cancer treatment was in full chemo-swing; and already the cancer was beginning to consume him again...
"2-11-02...'Saturday'...Saturday was very fun. I spent the day with Ryan. My best friend. His sister went on a cruise with her boyfriend and so her boyfriend's dog had to stay a week over at his house. So we played with Dasani, that's her name, intil I or Ryan could tug a war with her. Ryan also has a miniature doxin named Heinz he's alot more fun because he doesn't knock you over when you pick him up like the great dane Dasani well we played playstation 2. That's what I did on Saturday..."
Life can be so good, life can suck...Life is life...
Peace my friends, Kathy
Tueday, February 11, 2003 5:42 AM CST
Good Day dear friends...we are well on our way into another week. I still cannot believe it is February. Strange how I do not even spend time thinking of what life was supposed to be offering at this time instead of what life has offered.
Yesterday, Monday, was a good day all in all...actually, both girls stayed home from school. Long story...needless to say, everyone is suffering from difficulty sleeping around here these days. We take it a day and moment at a time as it comes...
So, what is a Mom to do when it is a beautiful day out, and she has been up since 4am and not looking forward to being home all day cleaning house...Well, this Mom took her girls to the beach to meet with another friend and her precious little boy. It was a beautiful day out...yes, folks you read it here first-I actually put on a bathing suit and went to the beach! My Mom did not "drag" me-I went on my own accord. It was wonderful. We did not stay long. Christina and I walked along the beach holding hands. We played in the sand and I really enjoyed talking with my sweet friend. Her precious son is recovering from treatment for his nueroblastoma...he is a beautiful, amazing little boy...much like his parents. It was good for the mind and heart to be there...thanks Michelle for getting us out of the house. On our way from the beach, I told Jessica to fill the big cup we had with sand...I told her I wanted to take some beach sand to Robert's grave...so that is what we did. The girls and I went to see Robert's site. We each took turns sprinkling sand all around...we hugged on each other a bit...and then we took the very long walk back to the car--tears just flow these days--my children are rather accustomed to it I must say. We just cling to one another and keep going...that is the only way.
I wish my little guy would have been there. Had I known we were going to be together like that, I would have kept him home as well. What's another kid around the house...another day off from school...isn't it some holiday or something...Matthew I can see and feel misses his brother more than I ever began to realize. He spends much time in thought...quiet. He is playing basketball all the time. Matthew is one of the most sensitive, loving children I have ever known. I look at him and realize that he knows that this was the time Robert was to be well, to be here with us. I am sure in his mind he remembers every doctor appointment, every finger prick his brother endured to be here with him, with us...and he misses him.
I was driving the children-Matthew and Christina-to basketball practice last night. Christina is busy chattering away, the radio was on, I was busy driving...I realized my little guy in the back was so quiet. I glanced back to see if he had dozed off. He was just quietly looking off into the distance. I asked my little buddy if he was okay...he said "yes, Mom"...he said he was just thinking. I asked what he was thinking about...he said, "the same thing I always think about Mom--Robert". I asked what he was thinking about Robert...he said, well, Mom I was just wondering if he was fishing. Tears are good for the soul...moments like these bind us together...they either give us the courage to go on, or they can stop us cold in our tracks and paralyze us...the kids went to basketball practice, and I am sure my little Matthew dreamt of his brother fishing all night long...
My friends, thank you for checking in on us. As this month is full of reminders of Robert and the "anniversary" dates of his diagnosis and relapse, I want to share some of is words from his last journal...
Feb. 6, 2001, Robert wrote..."Yesterday"
Yesterday was my Mom's b-day. She's 35 years old though she looks like she's 29 1/4. We went out to dinner at Rosalita's. I had nachoes bell grande and I can't remember what my Mom had, but it had spinach YUCK! I hate spinach! Then after dinner we went back to my home to open gifts and eat cake. That was my Mom's birthday.
Bless you friends, peace to you all...Kathy
Monday, Feb 10/Sunday, February 9, 2003 8:37 AM CST
***It is indeed a new day...Monday morning...I just returned from my walk. As usual there is much on my mind. I will ponder it all a bit longer, and want to leave my Sunday journal page here for now...I will be back.***
From Sunday:
Good day...sorry I missed you all yesterday. I was sick! Can you imagine...I got a cold. Unheard of! I actually lost my voice, sore throat the whole nine yards. My idea of being sick is maybe taking a nap...I am not one to be sick. I sort of just keep chugging along like the ever-ready rabbit or something...
Needless to say, I let the dream of cleaning and organizing the children's rooms go right out the window. Pretty much the mess that is their rooms will still be there Monday morning! So, Saturday, I stayed in bed lounging all day...it was nice. I met up with some old friends Saturday night for a movie...it was nice. I actually went to two movies this weekend...yes, Mom, can you imagine!
Last night when I finally made it to bed, around midnight, I began to think of my boy...it was so strange and surreal to not have my voice for two days. I kept thinking and remembering Robert and his hoarse voice those last days. How he literally would try to speak and nothing would come out. I could see his face, his frustration, his desire to call the dog and know that the dog could not hear his voice...I let myself go there. Back to those days. Back to his room with him, and I felt his mouth on my ear as I drew near him to hear any whisper that came from his mouth...hoping for a word to cling to from my son...mostly, he would ask for simple things. Ask for milk, or his water bottle. He wanted to do it all for himself. He would sleep with his water bottle so it was right there if he woke. I let myself go back to those days where I would not allow myself to be more than a few feet away from him so I could hear him breathe...as I struggled with no voice and a sore throat--I thought of him. I was so sad...I let it all come to me...like a wave. I chose to remember him at this time, I chose to allow myself to feel that pain again. To remember him as a baby, a toddler, to remember the feel of his hug...I choose to remember him, to cry for him, to live for him...
This morning I began to think of how our life is about choices. Everyday, every moment, it is all a choice. Some choices are set in stone; some unavoidable. Unfortunately, try as he did, Robert really did not have a choice to get to live as he wanted...he chose to go-to go on ahead to heaven. For me, there are choices that I want to make, but cannot. Like taking a full-time job. I would like to go in that direction, yet, I realize that tomorrow is Monday morning and my daughter may not be able to face a day at school--her choice? That I am not sure of--anxiety can be a wicked thing...I can however, choose to accept that in my life, I can choose to be happy, no matter what. I can still choose to look for the good in people, choose to find hope in a new day, choose to get out of bed and brush my teeth!
I think about how all along our life boils down to choices we make--some good, some bad, some life-changing, some well, who really cares which black shoes you wear with those pants! But it is all about choices, isn't it? Throughout this journey and from reading pages of other families, some people choose to give up the battle of living when their child has "lost" their battle for life...some choose to live anyway. Within this journey, I have met parents who did not even have the courage to choose to help their child fight in the first place...we all make choices. We all must decide what exactly is worth fighting for...what is worth waiting for...what is really worth trying to attain at all. My son's life was worth everything to me...EVERYTHING! There is nothing in this world that would have kept me from getting him anything in my power to keep him alive...NOTHING would have kept me from fighting for him...or fighting for my other children. I have seen in all of this that it is about choices...how we face each day. I may choose to allow sadness and heartache in my life...I may choose to cry and feel sorrow...but, I also have chosen to live.
So, for each of us, we must decide. What exactly is there that is worth having? Worth fighting for? Worth waiting for? Worth living for? Within each of these questions an individual answer awaits us...you may be searching to make a choice to live, to get out of bed and face a new day...your choices at this time may be more simplistic--like what color to paint the bathroom...whatever that choice may be--make it, accept it, and live with it...Life will go on whether you choose to join in or not...Me, well, I think you all have figured out by now, I have chosen to live, and be happy...it may be with a broken, bruised heart, but, live I shall...
Yes, it is Sunday morning...I have not counted the days since my Robert left us...I know on the 17th it will be three months...the sun came out this morning...Matthew played basketball...I woke up coughing and blowing my nose!! Now it is off to work...it is a new day. The Kravis Center will host it's big gala tonight, I may choose to linger a bit and take it all in--I may not. A new day for each of us...God bless you as you endeavor to live and make choices for your life...
Peace my friends, Kathy
Friday, February 7, 2003 5:42 AM CST
Good day friends. It is nice and muggy out, feels like home. The morning walks continue. It is a wonderful feeling to have someone to enjoy this with and share so much with in the early part of the day...I have told "Juliet" that now it is up to us to "solve the world's problems" in the wee hours of the morning...Donna, I guess I have moved on from my spot in front of the rocking chair...time does have a way of changing things...
The weekend is upon us. There are no basketball games this weekend. The kids are a little bummed, but I am sure by 9:30 Saturday morning when the knocks on the door begin and the kids come over to jump on the trampoline it will soon be forgotten. I have set the task at hand for the weekend to finish moving the children's rooms around. So strange to have a house with three children and each with their own room...no doubling up in my house...very strange concept. I can remember Jeff saying that the kids needed their own rooms as they kept showing up...I pointed out that would require a very large house! I think I pursuaded him that sharing a room is a good thing...gee can you tell he is an only child! They are really excited about it, it is pretty cute. Matthew is known as the human tornado around here...it will take me several hours to dig out (AGAIN) and sort through all the stuff he dumped out in his closet...I have literally gone down the hall to his room and been so stunned by the mess from one so small that I have called all those in the house around to see his masterpiece and applauded the boy! So...I am hoping to bring more organization to my house this weekend...stop laughing at me, a feeble attempt I am sure, but attempt it I shall!
The infamous Cathy #2 is coming to town this weekend. She is a friend I used to work with and they dubbed the three Kathy's with numbers to tell us apart on the radio. I, of course, was Kathy #1! That is because I was there first...I guess being the oldest of the three might have helped too. Anyhow, it will be nice to see her; we have not spent anytime together since Robert's funeral, and I look forward to having another friend around...
Other than that...Jeff will be traveling with the team to a game on Saturday. I think he is hoping to take Matthew with him. Robert loved going to away games. He loved hanging out with those guys and being included with the team...he did not even mind wiping up their sweat off the court during the game. He totally and literally looked up to those guys. It is very difficult for Jeff and the other coaches that loved Robert so much, when these guys act like guys and do not appreciate all they have. I know many times they have wanted to blast them with a Robert story to inspire them on...unfortunately, there are those who tend to be so self-centered that even a story of an amazing child like Robert Mitchel cannot inspire them...between you and me, those are the folks I tend to stay away from...they scare me. I am sure the guys will have a good time on the trip...GO SAILFISH!
Have a very pleasant weekend. I will be back...thank you for checking in.
Peace my friends...Kathy
Thursday, February 6, 2003 5:43 AM CST
Good day dear friends...here we go, almost into another weekend. Can you believe it? Time really just passes by so quickly...
In a couple of weeks I will be the proud parent of a teenager...YIPPEE! Jessica will be 13 on the 28th of the month. She is quite the teenager already. Fortunately for her and myself, I like teenagers, and even though she may not believe it, I do remember it like yesterday when I was her age...the other night while out with my good friend, we did much strolling down memory lane...the revelation of my age at the time of many of the "incidents" we talked about made us all gasp as we realized Jessica was almost the same age! Needless to say, it should kick it up a notch in our lives going through the teenage years. Of course, Christina likes to think she is a teenager as well; more like a teenage idol! Thank goodness we all have Matthew around. To remind us of the innocence and sweetness of life..."Mommy, I love you--I love you more..."
I am certain that Jeff is not ready for to have a teenage daughter...think about it guys, it can be intimidating. I am sure that he will learn to navigate those waters. He is a great father and I know he will continue to do his best even with this...
Not much to report here. We are still playing who is going to school today. I manage to get the little ones out the door these days only because they know I can stuff them in their clothes or at the very least drag them to the car as they are...you know the whole, you are going to school even if you are barefoot speech...thank goodness we do not have snow! Christina is gettng close in the weight department. I may have to find new methods for her...you can only drag a kid so far when they weigh as much as you do! Even if the adrenalin kicks in...The school my youngest attend is such a special place, and their teachers are exceptional. I know you have heard me talk about their school before; it is the place that hosted our family and guests for a large reception after Robert's service...amazing place. It is school as it should be...at least according to me!
The beloved new puppy, Prince, is becoming quite the Corgy. He tries to rule the roost. He loves to herd and bark at the cat and Angel. Can you imagine, barking at Angel! She is after all the original Charlton dog...she after all was Robert's baby...he better watch himself...it is hilarious to see how he sneaks in and out of the cat door into the garage...very smart dog. I highly recommend them...
It is time to start the day...again. Have a wonderful day. Thank you for all the lovely thoughts and sentiments on my birthday! Liz, that card you sent me cracked me UP! My family thought I was nuts laughing at my computer...a husband stuffed with chocolate to double as a pinata, now there is an idea whose time has come!
I hope that you all are not having problems with the new design on the page...I could not get the guestbook to view at all last night...I think I might have a birthday everyday just to get all the sign-ins... GRIN!
Peace my friends, Kathy
Wednesday, February 5, 2003 6:40 AM CST
Good Morning friends...
"Maybe there's a light in my soul; maybe it flickers like neon sign, a sign in an abondoned hotel...maybe there are things we just can't know..." Michael W. Smith--I'll Lead You Home..."
I think of these words much as I venture these days...I think of how there is a driving force that gets us through things that normally paralyze us. Things that keep us from moving ahead, seeing a hope and a future...missing things that God intended to be used for good somehow, someway...someday.
I have managed to turn 36! Last night I spent time with a friend from my childhood...someone who has literally watched my life unfold before her very eyes...I think of how as kids we talked and dreamed of our futures; dreaming of family, love, children...it brings me back to realize that as a kid I never thought of being 36, a mother of four, of losing one...one never contemplates living the rest of one's life with one less in a child...
On my 28th birthday I watched my father as he was being consumed by cancer...I listened as every breath of his sounded so painful as though it might be his last...I remember how my family tried to bring a bright spot in my day...I remember the gift they gave me. The last gift I shared with my father on my birthday...I remember his voice, his words as he said..."Kathy, if I don't see you hear on earth again, I will see you in heaven." I got on a plane that day thinking I would never see my father alive again. He lived for a couple more years...I have lived missing him more than anyone can know...
Then my 34th birthday I watched as my precious Robert was so sick...then the call in the early morning from a doctor's office...I had just taken the children to school, Matthew was with me, he was in preschool. I remember looking at the caller id thinking I was amazed that the pediatrician was calling so soon after lab work the day before, and so early...I remember taking a deep breath and answering the phone...I can still myself standing there in my bedroom on the phone with a doctor I had never met...she said to me, "where is Robert?" I told her he was at school...she proceeded to tell me the lab work was back, and that it looked like he had leukemia...in the same breath and sentence she continued on to tell me to go to school, get Robert immediately to see Dr. Rodriquez-Cortez, gave me his phone number, and told me he was waiting...all in one sentence...it was 8:15 in the morning...the words rang in my head, began swirling--I began to pace all around my house, saying over and over, "Oh my God, Oh my God..." Matthew followed me like a faithful puppy would, saying Mommy it will be okay...over and over...I made two phone calls, one to my friend to come get Matthew...the other to Jeff.
Forget being the one receiving a call like that, for me to have to make a call like that to Jeff will never be something I will get over...how do you tell the father of your son, your husband, that his son has cancer...how do you do that in such a way that does not cause the man to lose his mind and get home safely because you have moments to get your son to a hospital...HOW?
We headed to the school...we cried with the office staff. The school nurse had just lost his mother to leukemia a couple of months before. He cried too. We watched as Robert carried his backpack into the office, as he tried to take each step like he knew he should...he was so weak, but wanted so desperately to be strong. I could see it in my son...he always wanted only to be strong, to live, to be happy and enjoy his life...he was so good at that. So good at being a kid. A boy who was brave beyond any human's imagination...We took him that day to his new world. His new way of living...his life began a journey that would lead to an end...an end that was much too soon, too soon...
So, indeed I miss my son. Miss hearing his voice. Miss his hugs, his hugs that were so tight you had to beg him to let go...to let you breathe...he sees me now. I know he does. He sees us all. I think if he were able to he would miss us. I believe the joy that exists in heaven is so complete missing does not factor in...just peace, joy, and an overwhelming totally perfect love...he I know sees me and knows that now I am brave. We are all brave to go on without the likes of such a precious boy...
I can still hear my Dad's voice on the phone, the one time that he would agree to make the long distance phone call and talk on the phone to me...he would say I don't talk on the phone and hand it over to my Step-Mom...I still hear him saying my name...calling me "Precious." I still hear my son voice, hear him saying "Mom"...hear him laughing.
It is a Happy Birthday...I have much to be happy, and grateful for. This morning I awoke to the voices of three amazing children telling me Happy Birthday...hearing the voices of people I love, people I am blessed to get to have in my life...that are here with me, hearing their voices...
No walk today, it is raining out...I do not remember it ever raining on my birthday...it is a way of symbolizing a new beginning to me. A new way of life, a new way of celebrating...
"Life's struggle
can be puzzling now & then.
Somehow
at the most difficult times
we find wings to fly."
Corrine deWinter...Get Well Wishes
Peace my friends, with fond thoughts of you all...thank you for checking in.
Kathy
Monday, February 3, 2003 10:02 PM CST
Hello dear ones. How strange to be writing to you all in the night. I will miss not being here in the morning. This reminds me much of the times I spent at St. Jude on the computer in the wee hours to keep my mind occupied and feel a connection to the world outside.
Tonight we moved Jessica into Robert's new room. Jessica had been occupying Robert and Matthew's old room. It had become too much for her. It is really in our minds the "boys" room. It definitely reminds me so much of Robert...Matthew was delighted at the prospect of having his old room back. Jessica is delighted at the prospect of being in the "new" room. I think she just wants her own bathroom! I am telling you she is one smart girl. I know Jessica being in that room will bring a new life to it that it needs; it was built with such love, and now it will be filled with love again. For me, I had come to realize that I avoided that room. I would walk in there, feel my son and leave...tonight, as I opened the closet door and saw his clothes, it was so hard. The reality that he wore those things only a few short months ago is mind boggling...I think of Robert all the time. He is everywhere to me. I let myself think of him. I let myself dwell on his memory and his smile. I cry when I need to and I go on...it is my way.
Today I received a call from our dear friend Joe Rommel. He had news about his son Ryon. Ryon is battling very serious Graft vs Host disease. Now it seems that one of the sores on his leg is testing positive for the fungus Aspirgillis (I may have spelled it wrong). It is not the best of the fungi to have...he is on his way to Duke for treatment. Please, please run to our Lord and plead for Ryon...he needs relief from the pain and discomfort, he needs healing...his transplant was over a year ago. Yet, he still suffers so. Seeing him today in the hospital reminded me much of Robert. As I looked at Ryon's big brown sleepy eyes, and his soft brown hair...I thought of Robert. I asked Robert to touch Ryon, to plead to our Lord for his friend. I felt like Robert could see and knew all that Ryon was facing. Maybe even could see the other side of all of it...I pray that our Lord reaches down and touches Ryon to heal him.
Tomorrow will be a busy day. Work for me; school for the kids, I must be at work early that is why I write tonight. Tomorrow evening I will spend with an old friend from my childhood...Jenny always is very good company and I am so looking forward to spending some time with her...thank you Jenny for thinking of me.
Two years ago at this time was the beginning of the journey which would ultimately take our Robert from us...two short years ago, he was 9, I was turning 34. He was growing weaker and weaker by the moment. Yet, still was in good spirits, looking well, and just oh so tired...I remember how sleepy he was...I know now it was because his body was under attack. An unseen predator that was taking over...never, never, could we have seen it coming. It crept in and took over...I go back in my mind. I see him, remember how he tried to be so pleasant and tried so hard to be cheerful for my birthday. I remember him at the doctor's office that day. Hearing the doctor say that he looks fine, but let's do bloodwork because you two are saying this is not quite normal for him...I remember how we had to walk up a flight of stairs to the lab for the blood work. How he could barely make it...his hemoglobin was at 4.0...I remember how they could not find a vein. I knew in my heart something was terribly wrong, I wanted to scream! I could not...I wanted to carry my son to the car like I used to when he was a baby...carry him home and keep him safe and make him whole...I just knew something was terribly wrong.
Follow your heart. Listen to that still small voice inside. Go with your gut. Your instincts are not to be overlooked...trust them, trust your instincts...
Peace my friends...Kathy
Monday, February 3, 2003 5:33 AM CST
Good Day dear ones...I have missed you...I think that we actually had a weekend that would be considered somewhat "normal". It was a blessing.
Saturday started with the basketball games. Always so much fun to watch the kids. Christina apparently inherited Jeff's need to live and breathe basketball. She is pretty darn good. She is debating between being a "performer" or a WNBA player...I of course told her she needs to be on stage whatever she decides to do. Her older sister told her to do which ever makes more money! Smart girl that Jessica. Matthew, well he apparently has inherited my genes for sure. He basically "dances" up and down the court. He is a pure joy to watch. I love it! It does make Jeff laugh, however, I am certain at some point he will put the hammer down and encourage the boy to dribble more seriously. Dance, Matthew, Dance!!! That's my boy!
After the game, Jeff took the kids out on the boat. I was so glad to know that he was able to do this. The boat was of course a labor of love between Robert and Jeff. Jeff was determined to get Robert out on the ocean in his own boat this past year...they had some good times and of course boats will be boats, it almost sunk a time or two on those guys. So, for Jeff to be able to go out with the other kids was a blessing. I am sure that he thought of his boy the entire time, but I am proud that he is focusing on who is here with us too. Me, well, my birthday is coming and in order to keep my mind occupied I went shopping. My Mom enlisted me to do some clothes shopping for my younger brother, he has lost quite a bit of weight himself. Twist my arm, force me to go the mall.
Saturday night was basketball game night at Palm Beach Atlantic. Jeff took the kids. I went to the ballet- all by myself! I enjoyed every minute of it. I plan to go more often if I can. I definitely missed my calling. I used to think I wanted to be a dancer, but, I believe my true calling would have been choreography. It was so nice to be at the place where I work not in uniform and actually watching a show.
Sunday, was sort of "chill out" day around here. I took one look in my closet and decided that it is on its way to be cleaned out...pretty much most of what is in there does not fit. The way I shop it is cheaper to find new than to have old altered...especially as much as they would need to be altered--so, Sunday I left to go buy a dress that fit! On sale of course. It was nice to actually enjoy trying on clothes for a change. You ladies all know how much fun that can be, NOT! Then I took the children to a family fare circus type show at the Kravis.
All in all, it was a perfectly "normal" weekend. Sunday morning did not bring about the usual flowing of tears that come with the rise of the sun...even Friday for me did not end in its usual sad state...I realized around 2pm on Friday when I was on my way to pick up my children from school, that I had not ended up in my usual spot--by Robert's grave site--in tears...
This week will be a particularly difficult week for me I think. My birthday as my family knows all too well, can be very emotional for me. I must admit I do not feel the usual blue feelings that are already trying to consume me at this point. But, I am on the watch for them. I will share the stories of these days from my past this week with you and I hope that as I share them the pain and reality of it all will help to heal them...
I will 36 on Wednesday. I know that is not "old", but I am feeling it for sure. In Robert's 5th grade journal on the day of my birthday he wrote..."Today is my mom's birthday she's turning 35. Me and my dad spent 1 hour baking her cake it looks delicious. It's a chocolate cake, with chocolate frosting. Frosting with hershey's kisses on the top. I can't wait until this afternoon because I'm getting out of school at 2:15 and my mom's party isn't until 2:30. Well, that's today." It does my heart so much good to read my son's handwriting...to see me mentioned there.
Take good care, and thank you for checking in..."even the angels fall down, and worship the king..."
Peace my friends, Kathy
Monday, February 3, 2003 5:33 AM CST
Good Day dear ones...I have missed you...I think that we actually had a weekend that would be considered somewhat "normal". It was a blessing.
Saturday started with the basketball games. Always so much fun to watch the kids. Christina apparently inherited Jeff's need to live and breathe basketball. She is pretty darn good. She is debating between being a "performer" or a WNBA player...I of course told her she needs to be on stage whatever she decides to do. Her older sister told her to do which ever makes more money! Smart girl that Jessica. Matthew, well he apparently has inherited my genes for sure. He basically "dances" up and down the court. He is a pure joy to watch. I love it! It does make Jeff laugh, however, I am certain at some point he will put the hammer down and encourage the boy to dribble more seriously. Dance, Matthew, Dance!!! That's my boy!
After the game, Jeff took the kids out on the boat. I was so glad to know that he was able to do this. The boat was of course a labor of love between Robert and Jeff. Jeff was determined to get Robert out on the ocean in his own boat this past year...they had some good times and of course boats will be boats, it almost sunk a time or two on those guys. So, for Jeff to be able to go out with the other kids was a blessing. I am sure that he thought of his boy the entire time, but I am proud that he is focusing on who is here with us too. Me, well, my birthday is coming and in order to keep my mind occupied I went shopping. My Mom enlisted me to do some clothes shopping for my younger brother, he has lost quite a bit of weight himself. Twist my arm, force me to go the mall.
Saturday night was basketball game night at Palm Beach Atlantic. Jeff took the kids. I went to the ballet- all by myself! I enjoyed every minute of it. I plan to go more often if I can. I definitely missed my calling. I used to think I wanted to be a dancer, but, I believe my true calling would have been choreography. It was so nice to be at the place where I work not in uniform and actually watching a show.
Sunday, was sort of "chill out" day around here. I took one look in my closet and decided that it is on its way to be cleaned out...pretty much most of what is in there does not fit. The way I shop it is cheaper to find new than to have old altered...especially as much as they would need to be altered--so, Sunday I left to go buy a dress that fit! On sale of course. It was nice to actually enjoy trying on clothes for a change. You ladies all know how much fun that can be, NOT! Then I took the children to a family fare circus type show at the Kravis.
All in all, it was a perfectly "normal" weekend. Sunday morning did not bring about the usual flowing of tears that come with the rise of the sun...even Friday for me did not end in its usual sad state...I realized around 2pm on Friday when I was on my way to pick up my children from school, that I had not ended up in my usual spot--by Robert's grave site--in tears...
This week will be a particularly difficult week for me I think. My birthday as my family knows all too well, can be very emotional for me. I must admit I do not feel the usual blue feelings that are already trying to consume me at this point. But, I am on the watch for them. I will share the stories of these days from my past this week with you and I hope that as I share them the pain and reality of it all will help to heal them...
I will 36 on Wednesday. I know that is not "old", but I am feeling it for sure. In Robert's 5th grade journal on the day of my birthday he wrote..."Today is my mom's birthday she's turning 35. Me and my dad spent 1 hour baking her cake it looks delicious. It's a chocolate cake, with chocolate frosting. Frosting with hershey's kisses on the top. I can't wait until this afternoon because I'm getting out of school at 2:15 and my mom's party isn't until 2:30. Well, that's today." It does my heart so much good to read my son's handwriting...to see me mentioned there.
Take good care, and thank you for checking in..."even the angels fall down, and worship the king..."
Peace my friends, Kathy
Friday, January 31, 2003 at 05:30 AM (CST)
Good day my friends...I think of you often throughout my days. I am so blessed by your words in the guestbook-you may never fully understand what a lifeline they are for me at this time...the encouragement and thought that people that are "perfect" strangers have gotten to know me in such a way that they would want to be my friend...that is such a blessing to me.
So, my friends, it is Friday. Many of you have followed and picked up how my Fridays tend to be a bit "blue" these months...many parents who are grieving find Fridays difficult. They lead into a weekend that is not at all like it ever was. For me, I do not have quite a handle on why it is that way, I know there are many reasons. So, I am asking for all you friends out there who follow so close and think of us often, to think of me.
The stress of this new life does indeed weigh heavy on me. I literally have to remind myself to eat; I have to force myself to sleep. My mind races constantly. This I do not mind. I truly do not have to force myself to see the blessings in my life day-to-day. I do truly get much joy from the smiles and laughter of my children and friends. Yet, it is a struggle...so, my morning walks and new found energy need fuel...basically, I do not think me losing 5 pounds a week is a good idea...not that I am trying, but stress has a way of burning calories apparently...I think I have lost to date over 20+pounds...I actually feel better and more energetic...but, I know that I must watch it and keep it in check; stress, lack of sleep, do not make for a sound mind. You who know me, know I like to keep my wits about me!
It is a new day my "Juliet" said to me as we ventured on our walk. A new day indeed...here we go.
I hope that you all have time this weekend to enjoy your life, your loved ones. I hope that somewhere as the days go by you find reason to pause, look heavenward and thank God for your life, and beauty in it.
It is a new day-and I will rejoice and be glad in it.
Peace my friends, Kathy
Thursday, January 30, 2003 at 05:22 AM (CST)
Good morning dear ones...
"Maybe there is a light that is within my soul--maybe it flickers like a light...Can you say there are no mysteries in the house you choose to dwell? Maybe we are entertaining angels unaware?...Maybe there is a place where we will fly...Maybe there is more than meets the eye..."
These are words from a song by Michael W. Smith, "I'll Lead You Home." I listen to it every morning while I type on the computer...it speaks of so many things that exist that are unseen. It speaks of how these things are all around us. Touching, knowing, loving, soaring...taking us by the hand--leading us to the promise land, leading us home...this is much how I see my life these days. I feel as though something that I cannot see is leading me through these days...that something is truly our Lord. He for me is the one in whom I can trust all things...all my heartache, all my thoughts, my pain, my hopes, my dreams...in human form all these things can seem fleeting, can be dashed and put aside...to me, that is not so with my Lord. He sees all. He has my Robert right there with him, how can I not trust in Him.
Last night I received word of another faithful soldier's passing...a woman from our old church named Ginger. She passed away after a long and difficult battle with cancer. I have not seen her in years...she has been away fighting for her life. I remember how sweet and genuine she always seemed. I remember hearing her story over the years and the unbelievable struggles in her life. I remember how easy it was for me to have babies and this precious woman gave everything to try to have one...I have never known of anyone in "person" who had endured so many personal losses in one lifetime as she...yet, to look upon her face, you did not see sorrow-at least I did not- I saw courage, a smile, a woman who would not give up. A woman who was truly strong and courageous...she wanted the simple pleasures that life can bring...and now, she is in heaven-rejoicing, praising God, and I believe, loving every moment of it. Ginger, you were an amazing woman. I hardly knew you, and your life touched mine. I pray for her family-her husband and daughter...I know they know she is at peace. It is a new life for them as well...a new "normal".
So, here we are rounding out yet another week. I am delighted to inform you all that there were no "incidents" at work. I even managed to help one gentleman find his ever so tiny hearing aid piece...he was charming, and kind...he is 92! I would have loved to find out his secret...how he got there...I find much joy in being to help someone and hear them say thank you...or even if they do not acknowledge it, to me when you manage to make it to 92 years of age, and have the strength and such to get up and go...the least I can do is be kind and courteous in my job...the smile of a 92 year old man goes along way in my mind and heart...
Have a lovely day. The game of who is going to school today continues! So, I bet you thought your kids were gonna leave home someday...HA! That's okay, soon enough I can charge rent! I may never have to get a full-time job...
Peace my friends...Kathy
Wednesday, January 29, 2003 at 05:45 AM (CST)
Good Day dear ones...I hate to admit it, but, "Juliet" decided not to walk this morning...I have to be to work by 8 a.m.-gonna be a long day- and we thought the "extra hour" of sleep would be nice...so much for that idea. I was still awake at 4:30! I guess my sleep hours will need some adjustment...this whole not sleeping can catch up with a gal after a while.
Today is the kind of day at my job that makes most of the Front of House staff nuts. It is a series known as the Adults at Leisure. There are two shows that run back to back, buses that drop off large groups of folks, most of whom need assistance, like a wheelchair, and such. Over the years you get to know certain people pretty well that come back time and time again. For me, this kind of day does not stress me out-too much. I spend most of my time staring at all these older folks wondering how in the world they made it to that point in their life. Sometimes I wonder if they have all been blessed to live their life with all their children here...I recognize that they have lived through much. Sometimes, when I am really fortunate, I actually get to share a story with one of them.
The last show I worked like this was not too bad. But, the worst part-for me that is-is when a call comes over the radio saying someone has fallen, or is hurt etc. This happened last week. I headed over to find the gentleman who had fallen. He had a pretty badly bruised arm and a bandage on it already. Unfortunately, when he fell he tore skin from his fragile skin and it looked awful. He was positively charming. I was grateful for that. Believe me, most of the time that is not the case...So, I proceeded to bandage the man up and got his and his wife's name. I had hurried to get them into the show so they would not miss anything. As I walked them in, the wife asked me if I was a nurse, or if I had some special first aid training...I said I had had first aid training, but that I had lots of experience with medical situations. She was so kind and I appreciated her noting my kindness and care to her husband.
Interesting what we glean from our life's circumstances. Obviously, I will never bandage another scrape on a child the same way again. I am glad to know that I can have the same compassion for an adult. Cuts and scrapes and bruises hurt alot! So, really how much harder is it to make a "boo boo" better with a smile and gentle touch than the good old fashioned "gruffy" manner. Christina is forever coming up with a scrape or a bump or something. I have to catch myself when I want to respond with a you are fine, now go play remark...you know the kind, when you are right in the middle of something really important like reading an email, or watching a show...yes, I catch myself all the time.
So, today should be interesting to say the least. Truly I pray for no falls, no heart attacks, no missing of a stair...it can get very scary sometimes with these types of situations. The jury is still out on the whole school thing with Miss Jess. She is doing her work, and trying to not fall behind...but, it is not easy for her to be there right now. WE are trying to find a way. Christina and Matthew are blessed to have a school that is a safe haven for them. I think if Jess could go back there, she would. She could probably teach over there!
Jeff has been busy with work. We have found a counselor that I think actually can give us some skills in navigating all of this. This grief has really caught us off guard to say the least. It has been particularly hard on Jeff. As I read many journals and such, I realize that each person's journey through grief is so individualistic, only they can navigate their own way. I have learned a new type of respect for our individual ways. Humans are indeed very complex beings. I find it rather fascinating, and completely frustrating at times. Can you imagine how God keeps us all organized in His mind and such...all these complete individuals trying to live together and work together and have lives together...he must have some rolodex! So, we go on...I know that Jeff will be able to get through this. It is a process, it is not easy. Believe me I know firsthand...I am living it too.
Well, my friends, have a lovely day, I am sure that they will be much nicer to me at work if I actually show up on time, dressed and with some lipstick on! So, gotta run!
Peace my friends, Kathy
Tuesday, January 28, 2003 at 05:54 AM (CST)
Good day dear friends...I know you are out there...believe me, I can feel it. Some of you have shared with me how you are praying...not even knowing what or how to pray. It is such a strange thing, and I am so grateful to know that He understands and hears us even when words do not form on our lips.
I am finding it hard to have words to say this morning. Once again I find my mind swirling in a million different directions. I just left the site of a young man who just left this world two short weeks ago...on his photo page, there were photos from Christmas. Photos taken 2 weeks before he was gone...gone from this place.
I wrote to the mother on his page. As I signed the guestbook I realized that though I can probably say that I am a good one to be able to understand her pain, her loss, I realize that for each of us, grief is so different. I cannot truly ease the pain of anyone, I cannot truly ever fill that empty space that will forever exist in the heart of another. For me, I must admit, though I am all about immediate gratification and such, I chose a long time ago to try to live my life for the long haul; seeing the "big picture"...in other words, I have not given into the many things that might fill my void immediately. Like the many times I thought I really needed a cigarette, even though I do not smoke. I also fight, daily, the beckoning of the complete and consuming desire to "run away" from it all. I am realizing every moment of every day, that I must cling to God. For me, that is my only real hope. Truly. I pray that as many parents are forced to navigate waters and live in a way that they never dreamed of, they would find whatever it is they can cling to that would offer them something more lasting than immediate gratification. I pray that they can cling to each other, if they have other children, cling to them. Cling to the Lord, somehow...
I wrote to this Mom how it can be so hard for us in our humanness to recognize that our children are really not ours...how I chose to give them "back" to God when they were born. I took them back time and time again...thinking that these cherished souls were truly mine...that it was up to me to raise them and such. That they were mine. In the end, I had to give Robert back to God, again...only this time it was for keeps. He gets to keep him now...it was not enough time for me, his short eleven years. It will never be enough...but, Robert is God's-he was before he came to me as a newborn; he was really His all the time that Robert dwelled with us; and ultimately, Robert belonged to God...in the end, he wanted him back-for keeps.
I do not know exactly where I am going with this, and I do not intend to always put such deep thoughts on this page...it is not my intent to cause anyone to feel sorrow or pain as they linger here. I just need to say what is on my heart. Somewhere in all of this, may God be glorified...someway in anyway in my life, and yours...
Peace my friends...Kathy
Monday, January 27, 2003 at 05:56 AM (CST)
Good Morning friends...and the answer is yes. I am so sure that you all cannot wait to find out if "Juliet" and I even walked over the weekend...the answer is yes. I must admit, I did not want to get out of bed at 5:30 this morning! But, this solitude I have discovered before the household wakes up is quite lovely...
On Saturday morning our city hosted a "Race for the Cure". I wanted so badly to go. With the childrens' basketball games and such, I chose not to go...so, on Saturday very early as we walked I talked about my dear precious friend Sheri Broderick who died from breast cancer 5 years ago...I talked about how I could still see her beautiful face in my mind. How I could hear her voice, and the words that she shared with me...we were good friends in some tough times; she was positively without a doubt the most "angelic" person I have ever known. I think of things she shared with me, things that troubled her. I think of the story I heard from a friend of hers about the last day she lived...how she told her daughter who had just turned 10 something very amazing...she told her, "Tiffany, I want you to be happy, smile alot, and laugh all the time..." I know why Sheri would say such a thing. To this day I remember her laugh...her laughter, her delightful smile. She had a twinkle in her eye. I remember watching her and her husband...taking notes I did...making mental pictures of this friend. She left many marks on my heart. I can see and hear him looking over at her and telling her "hey beautiful..." and the way he paused while they were stripping paint off a table, and just took her in...I watched this. It touched my heart. It made me understand how even though he traveled all the time as a pilot that they had so much between them...she brought this out in people. When you were with Sheri, you were the only person in the world that mattered. That is how she made you feel...
So, I walked with my new cherished friend. I told her of a cherished friend who is gone...I thought of the other women in my neighborhood who are fighting this dreaded disease, and thankfully they are winning...winning in their minds, bodies, and spirits. I can truly appreciate winning in the mind, and spirit...and am grateful that some get to win in their bodies as well.
The night before the "race" I found a note from my old friend. I stared at her handwriting like it was a long lost treasure...a handwritten note from a hand that does not write anymore...I looked at the words, I heard her voice her laughter...I saw her smiling. She loved Robert, too...There is much to cherish here if we look for it. There might even be buried treasure in a box next to your bed...I found some there. I savored the moment...I remembered her so much. I miss her too...she is probably playing flag football with Robert, and if there is a beach in heaven, they are certainly there together, and Robert is telling her that she looks good in her bikini! Smart boy that Robert was...
So, off to a new "race" this week...what is the goal these days. It used to be to get to Friday. Now it is to get to the next day...to get up and walk, to get up and go; to live and laugh and smile...to be happy.
Find a way, look for the buried treasure...it is all around you. Trust me, if I can find it, surely anyone can...
Peace my friends...Kathy
**I am putting my weekend journal here because it still is heavy on my heart...some Monday morning folks may want to read it**
Journal
Saturday, January 25, 2003 at 05:42 AM (CST)
Good day friends...so, I wonder how many of you are not able to check this page on the weekend because you are only able to check in from work. I feel so blessed to have a computer at home...it has become a great comfort to be able to be connected to so many this way...
I have come to realize that not only are Sunday mornings particularly difficult for me these days, and yes as my friend noted, I do have a bit of the "sundown blues..." I see a trend that by Friday midday, I am drawn to where Robert's physical body has been laid to rest. It seems to be a trend that by noon, I am consumed with thoughts of him and drawn to think of him...maybe it is because normally the school day would be ending and he would be "racing" home and I would be with him...he did always run ahead...looking back saying "hurry up MOM!"
So, I found my way to the beach yesterday. It was the kind of blustery cold day that is not too familiar here in Florida...I loved it, and at the same time cursed that snow was so close, and my Robert was not here to take it all in with me. I sat in my car and watched the ocean...I took it all in. I cried for my son. I remembered my father's last trip to visit me in Florida. I could still see him standing on the pier with my brothers waving down to us. I could feel Robert. I like my father sort of put up with the beach in South Florida. He was always working near the beach in Miami Beach, and not a big fan of the hot sun and sand...me, I did always enjoy the beach, but was the first of the kids ready to leave...the sun is not my friend...I hate sunburns. I thought of these two. How Robert seemed to be born with salt water in his veins...he could live and breathe and never leave the beach. He would definitely have been a beach bum.
I got out of the car and wanted to feel the cold air, the seaspray. I watched it all and thought of many things...Mostly I thought of how it seemed to represent so much of life to me. I looked down the beach as the lifeguard blew his whistle to get out of the water...there were red flags flying. The ocean was out of control. The surfers were plenty. I found myself thinking of how the ocean beckons us to come in...how its seaspray taunts us. Even on such a cold day there are those brave enough to attempt to tame it. I thought of how life is. How there are riptides and currents so strong they can pull us under. I think of the "red flags" that our Lord puts up to keep us out of danger...how so many of us see those red flags and still go in. As if a red flag were not enough, there are even lifeguards watching, patroling to keep the surfers and swimmers out of harms way. Such is life. We have reminders, helpers to get us safe to shore when we have ignored red flags...There are some of us who would not dream of going in when a red flag is flying...I tend to fall into this category. I tend to be safe...
I think about how Robert would have gone in...full force, if he had grown into a man. He as a boy did not have much fear in him. He would trust our reassurance, and look for us, but, he was always willing to take a risk and go right into the deep waters and try to surf. Robert was one that had the ability to stay afloat. He could have tamed the ocean if he tried. I know this about him.
Living life with regrets is not a good idea...in my opinion. It does no good. The other night Robert's best friend's Mom and I were talking about him...she shared about the day he came home and they surprised him by picking him up at the airport. She told me how he begged to go to the beach. Begged to see the ocean. How he looked at everything at all the FL license tags and could not believe the sunshine and warmth he felt was from home...Jeff did take him by the ocean that day, by the beach. I do not know if he felt the sand between his toes...but I know he saw it, smelled it, breathed it all in. I know he was happy...I do have this regret...that I was not here. I was racing like a maniac driving from Memphis home. I made the choice to do that...I would have rolled Robert in the sand...tossed sand all over him...splashed with him a bit...I do regret not being able to take him to the beach one last time...to put a fishing pole in his hand and see him cast his line. This truly hurts my heart. Yet, I am reminded that I was so blessed to be able to have anytime with my son...any moments with him...anytime to kiss his face, hold his hand, breathe him in...yes, I have been blessed.
I want to share with you what I wrote yesterday at the beach...
"There is a sadness that tries to consume - it is like the ocean, like the very waves.
Some days it is calm and smooth - days like those you skim a stone upon it.
Then it begins to churn from deep below - it turns very tumultuous and beckons to pull you under.
A riptide grabs hold and drags you down - you can feel it coming, you know the signs...
Sometimes you just let it take you-
Sometimes you let it sweep over you to cleanse your soul...
The secret is not to drown - to keep your head above water, to know when it will consume you, or when it will cleanse you.
That is the secret of the ocean - that is the secret of sadness - stay afloat - don't let it pull you under...
The sea it pounds, it beats down - it takes captive all in its path.
If you stay in the shallow, it taunts you with its seaspray- beckoning you to come in...
I am not brave enough for the deep ocean - not brave enough to dive in...I stay where it is safe, where I can skim a stone on its surface...I can feel it beckoning, taunting me- I will not go it will not take me captive."
Robert, maybe that is your job in heaven...maybe you are in charge of the ocean blue...in charge of our oceans off the Florida coast. I love the beach now. I want to be there, and feel your love for it...tame it in my own way...you gave me so many gifts my son...taught me so much.
Saturday, January 25, 2003 at 05:42 AM (CST)
**I am leaving my Saturday journal up until Monday...It is a beautiful cool Sunday morning...My sweet Matthew is right by my side as I type and we listen to praise music...he loves to just be by my side. He is such a little sweetie. I will miss him when he "out-grows" his Mom. He is the perfect little buddy. Just content to be...it does help that he tells me he loves me ALL the time! :) Have lovely day...*** Please read on if you did not read Saturday...Peace, Kathy
Saturday, January 25, 2003
Good day friends...so, I wonder how many of you are not able to check this page on the weekend because you are only able to check in from work. I feel so blessed to have a computer at home...it has become a great comfort to be able to be connected to so many this way...
I have come to realize that not only are Sunday mornings particularly difficult for me these days, and yes as my friend noted, I do have a bit of the "sundown blues..." I see a trend that by Friday midday, I am drawn to where Robert's physical body has been laid to rest. It seems to be a trend that by noon, I am consumed with thoughts of him and drawn to think of him...maybe it is because normally the school day would be ending and he would be "racing" home and I would be with him...he did always run ahead...looking back saying "hurry up MOM!"
So, I found my way to the beach yesterday. It was the kind of blustery cold day that is not too familiar here in Florida...I loved it, and at the same time cursed that snow was so close, and my Robert was not here to take it all in with me. I sat in my car and watched the ocean...I took it all in. I cried for my son. I remembered my father's last trip to visit me in Florida. I could still see him standing on the pier with my brothers waving down to us. I could feel Robert. I like my father sort of put up with the beach in South Florida. He was always working near the beach in Miami Beach, and not a big fan of the hot sun and sand...me, I did always enjoy the beach, but was the first of the kids ready to leave...the sun is not my friend...I hate sunburns. I thought of these two. How Robert seemed to be born with salt water in his veins...he could live and breathe and never leave the beach. He would definitely have been a beach bum.
I got out of the car and wanted to feel the cold air, the seaspray. I watched it all and thought of many things...Mostly I thought of how it seemed to represent so much of life to me. I looked down the beach as the lifeguard blew his whistle to get out of the water...there were red flags flying. The ocean was out of control. The surfers were plenty. I found myself thinking of how the ocean beckons us to come in...how its seaspray taunts us. Even on such a cold day there are those brave enough to attempt to tame it. I thought of how life is. How there are riptides and currents so strong they can pull us under. I think of the "red flags" that our Lord puts up to keep us out of danger...how so many of us see those red flags and still go in. As if a red flag were not enough, there are even lifeguards watching, patroling to keep the surfers and swimmers out of harms way. Such is life. We have reminders, helpers to get us safe to shore when we have ignored red flags...There are some of us who would not dream of going in when a red flag is flying...I tend to fall into this category. I tend to be safe...
I think about how Robert would have gone in...full force, if he had grown into a man. He as a boy did not have much fear in him. He would trust our reassurance, and look for us, but, he was always willing to take a risk and go right into the deep waters and try to surf. Robert was one that had the ability to stay afloat. He could have tamed the ocean if he tried. I know this about him.
Living life with regrets is not a good idea...in my opinion. It does no good. The other night Robert's best friend's Mom and I were talking about him...she shared about the day he came home and they surprised him by picking him up at the airport. She told me how he begged to go to the beach. Begged to see the ocean. How he looked at everything at all the FL license tags and could not believe the sunshine and warmth he felt was from home...Jeff did take him by the ocean that day, by the beach. I do not know if he felt the sand between his toes...but I know he saw it, smelled it, breathed it all in. I know he was happy...I do have this regret...that I was not here. I was racing like a maniac driving from Memphis home. I made the choice to do that...I would have rolled Robert in the sand...tossed sand all over him...splashed with him a bit...I do regret not being able to take him to the beach one last time...to put a fishing pole in his hand and see him cast his line. This truly hurts my heart. Yet, I am reminded that I was so blessed to be able to have anytime with my son...any moments with him...anytime to kiss his face, hold his hand, breathe him in...yes, I have been blessed.
I want to share with you what I wrote yesterday at the beach...
"There is a sadness that tries to consume - it is like the ocean, like the very waves.
Some days it is calm and smooth - days like those you skim a stone upon it.
Then it begins to churn from deep below - it turns very tumultuous and beckons to pull you under.
A riptide grabs hold and drags you down - you can feel it coming, you know the signs...
Sometimes you just let it take you-
Sometimes you let it sweep over you to cleanse your soul...
The secret is not to drown - to keep your head above water, to know when it will consume you, or when it will cleanse you.
That is the secret of the ocean - that is the secret of sadness - stay afloat - don't let it pull you under...
The sea it pounds, it beats down - it takes captive all in its path.
If you stay in the shallow, it taunts you with its seaspray- beckoning you to come in...
I am not brave enough for the deep ocean - not brave enough to dive in...I stay where it is safe, where I can skim a stone on its surface...I can feel it beckoning, taunting me- I will not go it will not take me captive."
Robert, maybe that is your job in heaven...maybe you are in charge of the ocean blue...in charge of our oceans off the Florida coast. I love the beach now. I want to be there, and feel your love for it...tame it in my own way...you gave me so many gifts my son...taught me so much.
Peace my friends...Peace to you all. Kathy
Friday, January 24, 2003 at 06:01 AM (CST)
Good Morning friends...Wow, I do not know if the world is ready for this red-head to be running around pumped up on endorphins from exercising! I mean for the world to handle the stressed out version was one thing...but, this, I may have to go into politics or something...I have found my niche...no one else, except my faithful dog-Angel, cares to keep my company at this hour!
So, I have to change things around a bit. For the record, it is I who should be Romeo...and my walking partner shall be Juliet...you see I am the one wrapping on the window at 5:30 to retrieve her...so, I am Romeo...anyway, two days in a row, that is nothing to shiver at! Did I say shiver...it was cold this morning-the coldest we have had in a looooonnnngggg time...I decided to to go out and walk anyway and pretend I was living in some other place! Of course, I dare not compare our cold to the cold the rest of you folks are enduring...oh no, I definitely live in So. Florida for a reason--it's the air conditioning! Anyway, I walked with Juliet, she is from Pennsylvania, so I figured this was nothing to her...well, she did have a jacket with a hood, I should have known better! Of course as we rounded the bend I knew we were right where we started in South FL...no lack of urban myths here. We could hear some guy yelling and yelling...being the saavy women that we are we spotted him across the street, and watched him closely...of course "Juliet" reminded me that I was holding the weapon her other half ordered her to carry "just in case, babe..." She commented on how we forgot the cell phone!
Can you imagine, this is what our world has come to...whatever happened to the days when two women could walk along and talk at 5:45 in the morning and not have to carry some sort of poking device, and a cell phone! Well, turns out the guy was yelling at a cop! I quickly noted that I figured he could yell at the officer all he wanted, after all, the officer had a gun! Oh the joys of living in the city! HA! We cut the walk a little short as my ears were frozen and and my face hurt from the cold...never thought I would see myself with that pink flush on my nose and cheeks in this neighborhood!
Remember yesterday, and my bragging about getting all the children off to school...well, I tried. Poor Jess, anxiety got the best of her at the last minute...there are so many complex, constant things that have to be tweeked and dealt with on an indivual basis within all of this...I fight tooth and nail daily to keep my head out of the sand, and to keep going...a catatonic state is not an option for me...neither is running away. Believe me, I have considered both...it truly is a good thing that I am not a drinker, or a smoker...good thing I am a walker now!!! Sooooo, it goes, life and times of the Charltons. I have seen commercial for new reality family TV shows...I think to myself, they sure do not want this kind of reality...I am certain my children and my insane ways would delight the masses...but, the cold hard fact of the sadness of it all, may be more than some could bear....
Have I told you that Prince is the cutest thing ever! He is the new puppy. He is already totally a member of the family. It is so neat to watch him and see his little personality, these dogs are really people animals. He has not taken to the trampoline like Angel has. He does not like the kids putting him up there...Angel of course, jumps right up and it does crack me up to look out my window and see her on the trampoline with the entire neighborhood of kids...last night there were 8! I realized around 8 pm that I did not have my usual "blue" feeling as the sun set...I think having all those kids here got my mind off it. Not to mention a wonderful phone call from a friend...
So, we are heading into the weekend. Jeff is off on Saturday with the team. He is working hard. God has been so faithful to make a way for him to start over on his own in his business. I told him I am so grateful for that for him. He needed that so much. I told him that it is affirming how much I know that our Lord loves him and how He knew exactly what Jeff needed right now to give him a bit of a boost...Jeff does some excellent work in landscaping. He has an excellent reputation for being honest. Not the norm when dealing with sub-contractors, unfortunately.
Gotta run, get the kids up and going...it is getting late.
Wish me luck! HA!
Peace to you all, Kathy
Thursday, January 23, 2003 at 06:03 AM (CST)
Good morning friends. Okay, stop the presses...I actually got up out of bed at 5:30 and went for a walk with a friend! No this is not a misprint...I will forever refer to this friend as "Romeo"...because of the way I tap on her bedroom window to tell her I am outside waiting for her...the things a Mom must do to get out and walk!
Actually, Romeo and I are professionals at "trying" to walk. We are not exactly professional walkers...but, we are professional "triers..." So, if you are ever cruising on Carambola Rd. and see two women ducking in the bushes...it would be "Romeo" and myself...we are not ashamed to admit that we have hidden from our 8 children before...of course the one time that we hid from Robert he got on his bike and tried to circle around the block the other way to find us...my children are very determined kids. Wonder where they get from!? I was just glad I did not go into cardiac arrest...I did not know what to expect from this tired old body...I have lost 20 pounds in the past two months...I am not quite used to having so much less of me...now if I can just get my cardio strength back, there might be hope for me this summer when beach time rolls around!
So, another day. It "appears" that all the Charlton children are going to school this morning...I am going with Matthew's class on a trip to the zoo. Thank goodness it is not too hot.
I have had a few friends share with me that they check this page daily...this amazes me, and encourages me so much. I will and want to try to keep something here everyday...as you can see, I aeem to always have something to say..."chatty Kathy" and all that...so, thank you for being so faithful, I will be a faithful friend to you all as well. I do not know if I will post early in the morning, but I will be here...as long as you are there...
Have a good day, besides, this page gives me the date and day of the week...smart people these caringbridge folks, they know that crazy people like me never know what day of the week it is! Of course, the whole central time thing does confuse me a bit, I am not in Memphis anymore...I am home!
Peace my friends, Kathy
***Another one for you to follow...***
Hi Everyone,
I hate to say it, but it's bad news. Alex has relapsed for the 7th time and we are making preparations for her and Andrea to fly back to Duke. I updated our site (http://www.alexupdate.com) with four new photos and all of the details. Hope everything is going great. Take care.
-- Todd
This story is absolutely UNBELIEVABLE! Words cannot describe it...go there if you feel led to.
Wednesday, January 22, 2003 at 07:44 AM (CST)
Good day friends...sorry I missed you yesterday. I did miss you. I awoke early this morning with thoughts flooding my mind of writing to you all; writing for myself. Putting down my thoughts. This journey began so long ago for me and my family...now it has taken on such a new form. A new sort of life. It is so vital for me to be able to share with you all...thank you for continuing to be faithful to read my ramblings, and follow the stories of this family...life is truly a journey, with twists and turns, and swerves in the road. Some of which is unavoidable, some of which try as we may is inevitable. There are simply things in this life, pain and sorrow that we cannot avoid.
This early morning I found myself thinking of so many things. My mind seems to not rest these days. I still wake up with a bit of a start surprised that I actually slept soundly...I have started dreaming a bit. Jessica and I were talking about how fortunate Matthew is to have Robert visit him in his dreams. Jessica and I do not see him in our dreams...we both are sleeping so hard when it happens, dreams do not come to us. Matthew found his way as usual to my side this morning. He showed up as I was daydreaming of things in my life; daydreaming of Robert.
I found myself once again thinking of what my life is like to me right now. I think of how much I want to live and dream. How much I want my children to hope and know that no matter what, they will always have hope and can be happy. I was thinking about how I find myself pausing at the things of this world...taking them in. Enjoying the clear blue skies and the cool air. Enjoying that the moon has been so full at night that it cannot hide when the sun comes up...I think of how when my children are laughing, playing in the other room I cherish the sound of it. I guess you are not surprised that I might be in such a pensive state...that I would want to linger a moment longer and take in the breathe of a loved one.
I found myself gazing into a picture I have on my refrigerator of Robert...his look from his eyes pierces your very heart as you gaze back into them. He had amazing eyes...big brown, long lashes that went on for days. I remember every speck on his face, every mole, the smoothness of it...I remember his hands, his touch, his warmth. I am determined to remember this and more...about ones I choose to love in my life. My precious children...even my own self. I was so thrilled when I walked outside with the dogs this morning to see that the moon was still out. It looked so close I could touch it...I wondered if Robert was near.
My alarm music went off this morning with the song "I can only Imagine..." Many of you have heard this one I am certain. It speaks of imagining what we will do when we meet our Lord in heaven...it begs to wonder if we will dance or fall at his feet in wonder...Of course I think of Robert as he came face to face with the Lord. I saw his eyes sparkle, I saw that amazing smile and imagined the feeling of his very tight hug that he gave our Lord...I know that Robert danced...and is dancing...my son loved to dance. He danced with me all the time.
So...as I search for new things everyday, and begin life over all the time...I think of these things. My mind does not rest. But, I rest within my thoughts. I literally shake my head and chase away the thoughts that hurt and bring me pain...I find a way to cope. I am teaching my children to find a way to cope...it is a journey this life of ours...it is a pre-cursor to heaven. It is a glimpse of heaven here on earth...look and see if you can find a bit of heaven here...if you can smell it, touch it, feel it in your heart. It is there. Sometimes it is not spoken, sometimes it is hidden...look close. Our Lord is faithful to reveal himself, after all he is the author of all of this...
Peace my friends, peace to you all. Thanks for checking in...Kathy
Monday, January 20, 2003 at 08:51 AM (CST)
Hello friends...guess what, the sun is shining...and it did indeed rise this morning! It is all well. Days like these, rather the long nights, cause me to remember the verse from Proverbs where it says..."weeping may endureth for a night, but a SHOUT of joy cometh in the morning..."
Many times in my life I have gone to this verse. Hoping beyond hope that the SHOUT of joy would indeed be there in the morning...this morning, the shout of joy came when my little Matthew, who had once again snuck into my side of the bed, looked at me and said, "seatbelt Mommy...seatbelt..." This is what he calls it when I put my arm over him and around to curl up next to him. I realized as I laid there with him that I had not stopped to listen to him breathe in a long while...it was pure joy.
So, yesterday I headed off to church. Left the house early, by 7:30. I could have sworn our church had an 8 am service...well, it is at 9:15. I drove all the way there...being the determined woman that I am, that was not going to stop me. I called my old church, surely they still had an 8 am service...what is wrong with these people...I needed to go to church, right then! So, I being the determined woman that I am, knew everyone was sleeping at home, do I head home and clean house...no way. That could wait...so I went to Target! Gotta love Target. They open at 8 am, even on Sunday! So, any resourceful woman knows that it is easy to spend an hour in Target...no problem. I made it to the 9:15 service, and loved it! It was definitely one of those times that I knew God wanted me somewhere and I actually followed. One of the new songs we are singing is about having a melody in our heart, a melody of praise...it goes on to say that how can I not praise you...it makes me feel so much better to praise my God than to be angry and hurt towards him...that is just me. I am grateful for that. I need that.
One of the worship pastors then began to lead us in some other song...but, at the beginning, he said, stop and contemplate what Jesus has done for you...I thought to myself, not a good idea. Contemplation...for one with my vantage point, that could be dangerous. I mean, I did just lose my son, not get the miracle I begged Jesus for...and now am struggling to remember to breathe...so, I contemplated this for a moment...from this vantage point, I saw Robert in heaven with Jesus. I cannot fathom his vantage point...It must be so beautiful. I looked around at all the people, strangers, that were gathered standing, singing, praising Jesus, each with their own vantage point...I contemplated this, and though I had tears in my eyes, I wanted to praise Him. He is here, in the midst of even all this pain...
He brings a shout of joy in the morning...I am glad I saw it. I am grateful that the sun rose this morning.
Stay warm. God bless you and keep looking for joy, everywhere...
Peace, Kathy
Sunday, January 19, 2003 at 05:34 AM (CST)
Good Morning.
It is Sunday. Unfortunately, this Sunday morning is not letting me forget a Sunday morning two months ago...not that I want to forget, but it is definitely a painful memory.
Everyone is asleep. It is a cold day in our part of the world. Time is passing, not fast enough for me, it seems to move in slow motion these days...
I am going to church. Alone. Me and about a thousand others... I want to go by myself.
Do not fret my friends, it is all part of the process of living...God is with us, sustaining us, holding us up, reminding us to breathe...believe me there is no other explanation. The human spirit may be strong, but not that strong...
Peace my friends...Kathy
Friday, January 17, 2003 at 04:29 AM (CST)
Good day friends.
So, here we are heading into another weekend. Basketball for the kids in the morning...homework for Jessica. The children are off from school on Monday, so it will be a long weekend. We have plans to go to dinner with friends on Sat. night. These are some wonderful friends that we are so blessed to know from St. Mary's Hospital. Two of the children have nueroblastoma, both have relapsed and are trying a new treament in NY and will be leaving for a few days...the other little boy is in remission from leukemia...so it will be 15 of us for dinner and I am sure that we will have much laughter. It is something to spend time with parents and friends that we have met through this whole ordeal. When we are together I dare say we have much more patience for each other's children and we look at them in amazement and wonder and are grateful for every moment...as parents we have an understanding of just how precious this life is that we have. For us, when we get together, especially to eat, it is always bittersweet--Robert loved to eat--believe me not one of us will not be thinking of him...
Yesterday, Jessica made it school, Matthew stayed home...go figure! The life and times of a MOM. I laugh every time I think of getting a full-time job outside of the home. Good thing I majored in psychology/counseling in college...it seems to be helping me, nothing like counseling yourself! Just kidding. Whenever I find myself in the company of my Matthew alone, it takes me back to the days when he was a baby; and back to the days when he and I would take Robert to the doctor's and such. Needless to say, Matthew and I talked of Robert alot. As we drove down the road he simply says to me, "Mom, I miss Robert. I want to see him and hear him. Mom, I want to give him a hug." As I reply, Matthew asks, "Mom, are you crying...." I reply just a bit. So, we drove along, and Matthew told me he only wanted to listen to sad music. So we drove along and sang and daydreamed of Robert. Robert had daydreaming down to a pure art form...he inherited that from me! On our way home, still listening to "sad" music, I decided to head to the place where Robert is laid to rest. (I have no idea how to refer to this place, this is a tough one for me) We were listening to Josh Groban's song, "Only a Breathe Away". Matthew and I got out of the car. It is so beautiful where Robert is in this park. Way in the back, in a hedged area that is in the shape of a cross. His grave is in the way back. Matthew and I went there. We talked about some of the reminders that were left at the site by others. The note from a neighborhood child, the Cancer Sucks Club button...it always touches my heart when I know someone else was there. I had told Matthew to bring his Silly String can with him. Robert loved silly string, LOVED it, especially to squirt on his Mimis. So, Matthew sprayed silly string all around...we laughed as the sun shined down on us, we both knew Robert was laughing at us...then I balled up some of the string and we played a bit of silly string baseball. Matthew kept reminding me to watch where I stepped...He really knocked a few out of the park with that silly string can...he laughed, I laughed, we agreed that Robert was laughing too...it was one of life's precious, bittersweet moments. Matthew really seems to understand that his brother is not there...that we just go there as a special place to remember him. Matthew always speaks of Robert living somewhere else, and that we just cannot see him, hear him, or touch him...I never dreamed that a six year old little boy could have such a tender, sensitive heart...so full of love for his brother.
Robert, we all could use a hug.
As for this whole "time heals all wounds" theory...I read on another site a Mom commenting on time, she said, time does not heal--it just passes. I agree. There are matters of the heart that time can heal--I do not believe this is one of them. As time goes by when you think of a child who is gone you are forever reminded that they are not there...each day uncovers another layer of emptiness that you did not know before...it is the way, and we must accept it and go on. One of the volunteers at the place where I work looked at me the other day, and was asking how I was doing...she looked up at me and said, "yet, I still that smile...there it is." She patted my hand and went on her way.
Keep your smile, keep a song in your heart, even if some days it is a sad song. Time will pass. With or without us.
Peace my friends, have a wonderful weekend.
Kathy
Thursday, January 16, 2003 at 07:14 AM (CST)
Good Morning friends.
My thoughts are very far off from West Palm Beach, FL this morning. They are with a family of a little angel named, Alexandria. Alexandria is not long for this world, so they tell her Mom and Dad.
I have been following her journey for a while now. Last night as I read the update, the tears came from a heart that understands all to well where they are in their lives. I feel for them, and my heart breaks. Alexandria has relapsed after a bone marrow transplant, like Robert did. She even had to endure a hellish episode of poor treatment without proper pain med...it does indeed break my heart to think that another precious child must endure so much to even have a chance at life...
I spent the day yesterday with an amazing young lady. Genna. She is a cancer survivor. This young lady exemplifies the word survivor...she is the essence of what a survivor should be. Kind, caring, living, breathing, full of hope and promise, full of life and laughter...couple that with wisdom and a tender heart, and BAM--you have Genna. We talked much of Robert, and Seth. The loss of these two has touched her tender heart. She is moved to make a difference with the rest of her life. She will and is making a difference...
As we visited last night the "girls"-Jessica, and Genna- talked with me about those last days and how it all happened. We talked about the phone call home I had to make to Jeff about Robert's relapse; we talked about whose decision it was to come home...Genna asked if we thought Robert knew he was going to die...Jessica replied that she thought he must have known...I do not agree. This brings me to reading about Alexandria. Her parents did not tell her they were bringing her home to die...they have not told their other young children. I agree with their choice. I can remember when so many told me that I needed to talk with Robert about this...about dying. I am slick. I know how to find out what a person is trying to say without having to go exactly there...Robert and I communicated in a very unique way...I thought about those days much last night. I remembered how just a couple of days before our Robert breathed his last he sat in our family room with us. He was fully cognitive. He told me that if he slept out there again he wanted me to put a blanket over the back doors, they scared him the night before. I remember him trying to talk even that very last night. I remember him talking with Jeff, and then the last time he spoke he said, "MOM!" three times to me...No I do not think Robert ever knew he was going to die. I do not think he needed to know. All he needed to know was that no matter what Jeff and I were there for every breathe. That his family was all here with him. This made him so happy. He knew he was home...this made him happy. Robert never missed a moment. Even if he did not have the strength to move himself, or hold a cup, he lived...
Alexandria's family is facing an unimaginable time. Her brain is full of disease, and thus she is disoriented at this time. We did not have to deal with that sort of disorientation, just a bit of it from the pain meds. Robert's bladder bled constantly those last few weeks...but, only Jeff and I had to see this and deal with it. Many parents are not so fortunate. This disease is RELENTLESS and vile beyond words...it shows no mercy.
Please think of Alexandria and remember another sweet angel that is, at this time, losing ground fast...I talked with Genna yesterday about how a woman gladly endures much pain to have a child. How some women are willing to risk their very lives to have a baby...to endure pain and hardship to have a baby...a precious life. Children like sweet Alexandria and Robert and so many others must endure unimaginable pain and hardship not of their own choice--and their prize is...to breathe, to laugh and to have a precious life.
God be with you in a very real way...May the peace that passes understanding surround you...
Kathy
Wednesday, January 15, 2003 at 06:05 AM (CST)
Good Day.
Okay, so the drizzle yesterday was indicative of a cold front...big surprise. Actually, for me it is a pleasant surprise. Very rarely in South Florida do you start out your day feeling all warm and sticky from the damp humid steam and end up, cool and cozy...usually it gets hotter!
So, the plan is for all the Charlton children to make it to school today! Don't you love a plan...wish me luck, I need to go wake them up right now...
As I am sitting here by the back door, listening to the dogs scoot in and out of the back door, wondering if they are muddying the floor, I am noticing how cold it is outside. I am noticing that this "winter", in this house it seems to stay warm. I like that. I do not have to turn on the heat because it seems to just stay warm in here...many houses in Florida can get a chill that never goes away. As a child my house would be so much colder than the outside. My friend would come to pick me up for school, I would be dressed for a snow storm and it would be like 70 degrees outside! Quick change to say the least. For some reason, our little wood frame house keeps its warmth. Maybe it is all the hot air blowing around from all of my craziness!! :) Maybe the Lord knows I need my home to be warm and safe and my children to not notice the cold...
Maybe it is just some very practical structural thing...this I am certain. I do know from all the men who worked on the house that we have lousy insulation, another project for another day...but to me it is warm...I hope it is a warm place for my children. Cold houses scare me...So, wherever you are, stay warm and cozy...
School days, School days, kindergarten rule days...sing along everyone...wish me luck, heres goes nothing!
Peace my friends, Kathy
Tuesday, January 14, 2003 at 07:35 AM (CST)
Good morning.
It is drizzling outside here...not cold, but cool. I do love days like this, the type of day you want to shut up in the house and just enjoy...
I dropped the children off at school, not Jessica, she is home again...these things take time, I have lots of patience. As I got out of my car, I picked up the newspaper...The headline read, "Twins separated at birth go home..." As I glanced and read this through the plastic liner, I said thank you Lord...bless them and watch over them... be very "real" to them; it is a long road ahead for them. Then I said to Him "I am amazed at the things you do..." I paused for a moment, and then said "...and amazed at the things you do not do..."
I went on to say, "I will never understand Your ways...understand how You choose, I only know that they are Your ways"...and that I trust.
Have a wonderful day, and remember, He is with us, wants to live within us give us peace, and love, and joy...things that only He can bring to soothe our souls.
Peace my friends,
Kathy
Monday, January 13, 2003 at 05:36 AM (CST)
Good morning all. Well, Monday managed to make it here...Jeff made it home safe and sound. He had a great time with friends, mangaged to stay warm and have some much needed time to enjoy life.
I awoke early this morning thinking of many things...but mostly thinking about our church family. I began to realize that in all of this, or rather after all of this, I have not taken the time to truly thank them and pay them homage as to how they have helped our family...believe me, without them, I realize what we did in Memphis would have been impossible.
Our church, Palm Beach Gardens Christ Fellowship, not only reached out to our family in a spiritual sense, but in very real tangible ways. They helped support us when they learned that Jeff was without a job. They helped feed us when they knew that food was the last thing on our mind. They uplifted us in prayer, cried, pleaded, begged, and when the time came, helped us let go...For me and my family, the extension of such grace and love has revealed that our Heavenly Father can truly be glorified here on this earth. Many of you may read this and think that we must be something very special to our church. That we must be teaching Sunday School, or volunteering or working very hard at church to merit such kindness...I am not proud to say that this just is not so. Jeff and I came to find our church 8 years ago. We have been so busy growing and changing and trying to live our life that it seemed we did not have much time to give back to our church. This for me is a foreign concept. I had always worked in some way or another in my church. I believe that when you join a church you are a part of a larger family, a community, that must come together and help the ministry along in some sort of way. It is called being a servant.
So you see, I awoke this morning reflecting on how our church chose to reach out to us. Not because of anything we had done for them in our life, not because of who we are-per say. They did it because of love. Love for a family facing a crisis, love for a child they barely knew...love for three other children they barely knew. Not for notoriety, not to receive anything...I found myself thinking so hard about this this morning. Thinking how I wanted to thank them and express to them that what I know they did for our family is one of the greatest examples of Christ's love for His children that I have ever known in my life. Ours is a very large church. I dare say it is a force to be reckoned with...we are a small family. We are smaller now. The love and generosity that was given freely to us has helped see us through the darkest time of our life. Their hearts broke with us as we watched our Robert leave. This my friends is an amazing reflection of the love of a Savior. A love that has a heart that breaks and hurts when we do. A love that meets our needs when we do not even know how to ask. A love that guides us through when it is so dark you cannot see your hand in front of your face...It is a love that can only come from our Lord, Jesus Christ.
Thank you church family, thank you Pastors, prayer warriors, friends, and perfect strangers...thank you for being shining examples of our Lord in a very real tangible way that changes lives and touches hearts...Thank you Palm Beach Gardens Christ Fellowship for being our "church family."
Well, my friends, I have been writing alot these days...there is so much going on in my mind as we navigate these new waters...
Peace my friends, thanks for checking in on us.
Kathy
Friday, January 10, 2003 at 05:54 AM (CST)
***HEY GUYS...PLEASE LOOK AT THE BEAUTIFUL PHOTOS ON THE PAGE; YOU CAN GET A GLIMPSE INTO THE HEART OF MY BEAUTIFUL BOY WHEN YOU SEE HIM SO HAPPY...***THEY ARE FROM ST. JUDE. THANKS!
Good Sunday Morning...It just dawned on me, that this is the first Sunday that I did not wake up at 8 am with this sinking lonely feeling that missed my Robert more than words can say...it is 11:00 a.m.
This weekend has been good, busy, but good. The children really enjoyed their games and I so enjoyed seeing them so happy and what not...it was only until I paused to watch the boys that would be on the same team as Robert playing did I find myself focusing on him. For me, I savor the moments when I allow myself to ponder life as it would be if he were here with me. It is tinged with such sadness, but at the same time, I am so proud to have been the mother of such a special boy...a child who changed my life forever, and will never be forgotten.
I have been following another page. The page for Gabbie. Gabbie's Mom is very good about the way she puts her words on the page. She has included some excerpts this week that have really touched my heart. They are in reference to grief. Acknowledging that the loss of a child is the most unnatural, untimely, hardest of all losses that a human being can suffer...it goes on to say that inparticular it seems to be most difficult for mothers. Part of me wants to go "Duh!" Part of me sees Jeff and his grief and clearly sees how different we are in this. Another quote referred to how suffering such a loss a human being is not the same...some are stronger. This is how I see myself. I have never felt so unafraid of anything. The other night as I pondered my life in its entirety and searched for answers to common everyday difficult issues, I suddenly thought to myself--"I watched my 11yr old son, die before my very eyes...I felt the very breathe leave his body for the last time and felt his soul leave this place..." And I am going to be afraid of anything this life has to offer...I think not. I am a stronger person, a better mother, a better friend...
I am going to share something with you all that you may not realize, actually you cannot because you are not here...Robert's old room has become a bit of a shrine. This hurts my heart. I desperately contemplated this in bringing him home those last days. I do not second guess that that was the right thing to do for him and all of us...but, I immediately wanted to create a different space there in that room. Jeff was not ready, and is not ready. He does not want to live right now thinking there is not a space here for Robert. I am ready-and have been ready-to put away Robert's belongings for some time. For a while this room the children played in it, someone was always in there in the recliner watching TV; using the bathroom; Matthew toys would be scattered about the floor. It had life. Now, we forget that there is even a bathroom back there...I share this to share with you all another facet of this journey that is so unpredictable and very daunting at times...It will stifle the human spirit if one lets it.
Jessica had a very good day at school on Friday. She then went out with friends on Friday night--she had a good time. She said, "Mom, I have not left this house in two months...can I go!" She has not wanted to go out at all yesterday or today...BUT, she is doing her homework. Jessica is one of the most fascinating well-rounded people I have ever known in my life...I look at her with amazement. I am so proud of her. I am proud that she has chosen to climb out of the darkness that is so sad and trying to keep her...she is trying like the rest of us. She will make it; and be a better person because of it. This I know too.
Jeff comes back from New York this evening...he has lots of work here waiting for him. That is a blessing. We have much to work through ourselves...life does go on, indeed.
Peace my friends and thank you for stopping by...
Kathy
Friday, January 10, 2003 at 05:54 AM (CST)
***HEY GUYS...PLEASE LOOK AT THE BEAUTIFUL PHOTOS ON THE PAGE; YOU CAN GET A GLIMPSE INTO THE HEART OF MY BEAUTIFUL BOY WHEN YOU SEE HIM SO HAPPY...***THEY ARE FROM ST. JUDE. THANKS!
Good day dear ones...it is Friday. I awoke this morning glad it was Friday. Not that it being Friday makes it any different for me...the laundry does not know what day of the week it is, nor does Prince...the puppy "pee" patrol has to mop it all up no matter what day it is...still it is Friday. Used to be my favorite day of the week. I loved the weekend knowing the kids would be home and such...
Jess is attempting school this morning. So she said last night. I pray she is able to make it, for her own peace of mind. The plan is to get to the bus stop early enough to show of Prince to her friends...there was no incidence of hysteria last night, so...we shall see. I will be praying and holding down the fort for her all day. Pray it is not so big that it seems insurmountable.
Jeff is off this afternoon-off to the Big Apple that is. I am looking forward to the childrens' basketball games in the morning...a break in the routine. However, it is very difficult to sit in that gym and realize that just this time last year Robert had started playing on the team there and loving it! He was a bit of a ball hog-just like his Dad- and a very good shot. Yes, I will be thinking of him all the time. There will be many people there who have known us for a long time; some of whom I have seen since Robert died, and some I have not. There will probably even be one that does not know that he is not with us anymore...The first time I was there, I shared the story of the morning he left us and we both were teary eyed as we sat in the gym...
It is easy for me to talk about Robert. He is a wonderful "subject". It is more difficult for me not to talk about him...Jess told me yesterday that does everything have to be about Robert...my response in my mind was "does everything have to be such a pain in the ....?"
So, have a wonderful weekend...I have changed a couple of the links at the bottom of the page. They are going to reflect a couple different children whose story I am following. One is about a little girl named Alexandria. I fear she is not long for this world...my heart sank as I read that things are not going in her favor. She has a similar story as Robert...she is precious and beautiful. It may be too hard for some to follow, but, think of her anyway...the next is another little Alex...her story is "unbelievable" for sure. Finally, my good friend Ryon Rommel...he is doing much better, and I think you guys zooming over and sending him love and hello might be a nice idea...
Peace my friends to you, Kathy
Thursday, January 09, 2003 at 07:26 AM (CST)
Good day dear friends. Thank you for your constant faithfulness to this family. It touches my heart tremendously...and I know my Jessica reads every word and feels your love as well.
I have to also say a special thanks for those of you who posted onto Steven's site. He is a remarkable young man from a remarkable family. I hope you marveled at seeing his handprints right above Robert's green handprints...maybe I can get the beloved Joe Rommel to put that photo on this page...would that be okay, Lyle? Joe are you hearing me...Thank you all. Steven, keep up the good work-I look forward to seeing that smiling face again someday!
I want you all to rest assured. I may not be reading the books it takes to get through this, I talk ALOT to some very special friends, it helps me the most. I think many things through in my mind. I have realized my coping skills are some that I have had for as long as I can remember...for me, I think of Robert and his strength and unbelievable courage and fight to the very end and I go on...I have recognized that not everyone has the same coping skills. The very things we cherish most about each other is our differences...right? Well, in that spirit, I am glad to tell you that I believe Jess is getting the help she needs to help her have the skills to cope as best she can. I took Jessica to see our pediatrician yesterday. He is a wonderful doctor, Tommy Schectman. He was the doctor that took Robert's case on for Hospice and truly has a heart for treating the entire patient and family and seeing them through to the other side of an illness. That is truly a gift. Matthew loves to talk with him; so we have been so blessed that he will do just that. He informed us yesterday that he has just hired on a counselor for his practice. She will be specifically there for children who are coping with catastrophic losses and trying to make it through school, as well as the children who are just having trouble coping with school. It is a very trying time in our world for young people--no news flash there! Jessica felt very comfortable with his words and his plan for her to get the skills she needs to go on...he is even going to be speaking with her principal and following her school progress.
My best friend's Mom said some very wise things to me the other day...she told me that I cannot do this for Jessica. I realized I knew this, but, want so desperately to get my children through this...she told me that in the end, I would become an enabler for her. This made such sense to me. I am a mother, but, I want my children to continue to head on the path that they started long ago...to be strong, intelligent, courageous people who function in this world with a purpose and hope. She said that life is a journey...indeed it is. One that changes whether we like it or not...some changes come on by choice, some by circumstance, some just come out of nowhere and knock us right off our feet!
I am grateful to know that our Lord is doing what He does best for us...guiding us, loving us, and forgiving us...and many days...carrying us.
Well, Jeff is off to New York this weekend with the infamous Benjy (another friend is goind along as well, Chris Steele). Many of you who were around our house those last days with Robert might have met Benjy. Jeff should have a very good time-their agenda? Who knows...I think they will be so busy trying to stay warm there will be nothing left to do! Jeff's new venture in his old business is going well. I know this a great comfort to him. I am grateful that he has this...things are really falling into place for him in this area. That is a nice blessing, something that could be just that much harder is going smoothly. Matthew and Christina have their first basketball games at First Baptist Church this weekend, and Jess will hopefully see the new counselor on Sat. I am supposed to work...what a concept huh?
As I type this, I am listening to the music from the movie City of Angels. It is the end of the soundtrack the part that is instrumental. I listened to this while I headed into Memphis one of my treks across country...it puts me right back there and the feelings I had as I fought so hard to keep my family together...longing to be in two places at once--with my sweet Robert in St. Jude and my three children at home...that was only 4 months ago...who knew. God knew-He saw what was coming and was waiting there for us to get us through...
God bless you, Peace to you my friends.
Kathy
Tuesday, January 07, 2003 at 05:14 AM (CST)
**Just a footnote to yesterday...please click on the link at the bottom for Steven's page...he is a remarkable young man that we befriended at St. Jude; he is finishing his treatment and he put his handprints on the wall. The photo on his page shows how he placed his hands on the wall right above Robert's; Robert's hands are in green...this touched my heart tremendously! Just to see his hands there...please send Steven a special note of encouragement, and look at Robert's hands! Thank you!
Good Morning. I found myself awake and lying in bed thinking of so many things. I had to write to you all, and for myself. I have been following the journeys of many children and families, several of which have lost children. Each perspective and story touches my heart in such a way that I cannot explain. This whole new process and way of living is so completely different than anything in any book and anything that one can imagine...we certainly did not sit around dreaming this sort of thing up when I was a kid and naming my children long before I even had a boyfriend!
So, today it is back to school. I was not in the slightest bit stretching the truth when I said I was hoping all the kids were in school today...Jess is battling so hard to stay focused and on track. Her mind is trying to convince her that she is losing. Not a day goes by in this house without tears being shed in one form or another...when I took the children to Robert's burial site on Christmas Eve, Christina did not want to leave. This day was so hard. Jeff was sick. He was in bed; the children and I went to church without him and then onto to visit Robert's grave...we had all walked back to the car, and I looked and saw Christina was not with us. I called for her, she would not come--so, I found myself walking the very long walk back to where we laid Robert to rest...back to retrieve my child who was standing there sobbing...she is too big for me to carry, so I had to convince her to come with me; I reminded her that Robert was not there, that this is a place where we remember him, and laid his body to rest...What a surreal experience...I was hoping someone would come along who could carry me back to my car, yet, I realized I had to keep my courage up for the sake of this child and my children that waited in the car.
So it goes in life. There you have it. The children and I talk about Robert all the time. We have much to share and remember...Robert filled this house with such laughter and love. Robert never turned down a hug or a chance to be silly. He never did not want to hold your hand or kiss your face--his hugs would be so tight and long that you would have to pry him loose. Robert, we need to remember how you lived to be able to live...we need to remember how you held our hand and hugged our bodies...we need to never forget one moment of your life with us--we remember and we will never forget.
Today is back to school. Back to more living and more things that we think we cannot begin to accomplish because this pain in our hearts...I will never be able to express enough how much joy I get from my children--all of them. One is not with me now; one exists only in a memory and a photograph...but, what an existance he had, and has in my heart and all of our hearts. A good friend of mine, and many others, recognize how fortunate I am to have 3 other children to give a reason to get going...my children have always been my life. Now, more than ever do they need me to help them navigate. I only never thought it would be this way with such a heavy heart and so many tears...Jess should only have to be concerned with the things a 7th grader has to be concerned with--they are enough in itself. Christina should be able to have her 8th birthday and not have to want to cry and hide because she misses her brother so much...Matthew should always have a boy to play with because he has a big brother here...
So, we go back to school on with life...it is going on whether we want to go or not; so go on we shall.
My sweet Robert, I do not know how things work in heaven. I do not know the protocol...but, I know you see our tears, I know you see us here trying to live without you. Never for a moment are you not in our hearts and in our minds. I will never forget holding your hand or hearing you laugh. I will never forget your hugs or your love...to me, well, now "You are Everywhere..." just like the song you grew to love so much last summer--it is by Michelle Branch. I dance with you, laugh with you, and cry with you...my tears never daunted you Robert-you simply would say, "Mom are you crying again...?" I would always tell you yes, and that it is all just so hard...we miss you, love you, and will never forget you my precious son.
Peace my friends, Kathy
**Footnote: Jessica refused to go to school-she is too big for me to carry as well-so, goes another day...
Sunday, January 05, 2003 at 10:30 PM (CST)
Special THANKS to Joe Rommel for putting the photos on the page! It looks great!
Hello friends. I guess by now, you all being the saavy folks that you are, have figured out that the cutie little puppy is Prince. The one and only...
The children love him. I thought it would be nice to have a picture of each of the children from Christmas day. We have had a very nice few days with several of Christina's friends around for her birthday and days off from school. It has been nice having lots of kids around. Yesterday, Jeff finished the area that we put a fountain and a small pool type pond in...I hope to put a picture on the page so that you can see this special area that was created in honor of Robert. When I look out of my kitchen window I can see the fountain with the little boy riding on the back of the turtle...Jeff and I were looking outback, listening to the children play on the trampoline. I said to Jeff that Robert would love the way he fixed the backyard. I told him that he would love the fountain and be so happy out there...we both cried and agreed that it would have made him very happy. He loved the outdoors.
I have taken to joining the kids on the trampoline on a regular basis. It is so much fun and I love to laugh and "play" with them. We are getting ready to get back to more "normal" life things. The kids are off to school on Tuesday. This will be another new sort of challenge for Jessica. She is still trying to make up alot of the work she missed last semester. It is not easy, and it can be very discouraging. Please think of her in a special way as she tries to pick up the pieces along with the rest of us. Jeff and I have so many things to adjust to; Jeff is on his own for work. He is starting all over; I am considering a full-time job change; and Jessica, she is starting all over like the rest of us. She is trying to figure it all out just like us adults. It is not easy going to school where your brother is supposed to be going with you everyday and trying to keep up with all that you missed...Jeff and I are trying very hard to help her as much as we can-it takes time to heal and re-learn how to cope.
We managed to get to church all together this past Saturday...so, we are trying. Take good care, and thank you for checking in on us.
Peace, Kathy
Friday, January 03, 2003 at 06:56 AM (CST)
Good Morning dear ones...I knew you would listen, and respond. Respond you did...how amazing that you all are there. Hence, my feeble attempt at a tribute to you all a couple of days ago...a sort of lifeline that I never could have imagined would exist.
Interesting isn't it how people respond. I find that as I share with so many so much of this journey, that there is no judgement here...maybe there is and I simply choose to ignore it. As any of my family members can attest to those last days when Robert was here, I had little or no regard for anything in this world except his well being. I did not concern myself with who ate what, when, or how -it all got done...I did set some ground rules in the house...they revolved around having peace and love spoken and flowing throughout...and if any one crossed the line, well, I may be only 5'5" but, I guess I look pretty mean if necessary. Even now, people judging my actions is of no concern to me...
So, we are going on...I wonder if you read the one guestbook entry from Diane. She shared about how she talks about Robert all the time...I love to hear this. For me, talking about Robert all the time is natural. Last week at work, there was one day that I shared with three different people who I had never met about Robert. The other night at basketball practice for the kids, I shared with an old friend about the last night our sweet Robert spent here on this earth. I love to talk about him. The children and I speak of him all throughout the day. The children's friends do as well. It seems most difficult for Jeff to talk about Robert...he is suffering in his own way, and I see and sense the pain--his is different. That is something else I have learned about--respect. Respecting that no one's pain is the same. Each of us has our own perspective and coping abilities...each must learn to survive in their own time and manner. This can be very tough to watch. Some folks are so sad that they feel sorry for themselves...some are so sad that they become physically ill...some are just so sad that they cannot figure out how we are living...then there is the whole idea of "survivor's guilt"...that in itself could be a book.
I must say, when I see a child who is facing insurmountable obstacles and I see them alive and well---I could shout for joy! I look to their faces for hope and love. It is there. They know the secret, it is in living, loving, and laughing. The other day, I called up to the old faithful O2 Peds floor at St. Mary's. I knew an "old" friend and favorite nurse would be there...The Infamous Nurse Karen! She and I exchanged "hey babies!" and such, and then she informed me that the very first young lady we met at the hospital was in-patient. This young lady was adored greatly by Robert. Her name is Mary. She is special indeed. So, I called Jessica and said would you like to head up to the hospital and pay a visit to Mary...I told her we would bring Prince for visit. Jessica was thrilled at the idea.
So, I zoomed home; picked Jessica and the little Prince up and we went off to St. Mary's. We snuck in the back door-let's hope the hospital does not read this, I will never divulge my sources! Jessica carried Prince in her bag. The children LOVED him. It was so neat to be on the floor in this way. I had dreaded it in my mind ever going back there...I figured I never would. Yet, there we were. Jessica, and I and the little Prince....very fitting. I told Jess at that moment, I thought that she should train Prince to be a therapy dog. It would be the perfect thing to do in honor of Robert. Once Jessica is 13 she is able to volunteer at the hospital.
I guess I need to clarify a bit. Prince is the new puppy! The children had a very special delivery on Christmas morning. Prince Thomas Cruiser aka "Prince" is a Pembroke Welsh Corgi. He is toooooo cuuuuutttteee! Yes, he is a bit of a pain; he is a puppy! He will be the perfect size and disposition for such a task as being a therapy dog. I can see it is a new mission for Jess. She adores this dog and has taken ownership of him. As soon as Jeff gets the cable thing figured out for the computer I have some photos to add to the page...so our visit with Mary and all the children was very special. We will be back. I looked around and took it all in...strange how it did not affect me as I thought it would. Robert was not there...but, I know he is there when a little one is scared, and I am sure he comforts that young Mom who is so scared...he did enjoy making everyone laugh and comforting those little ones...
Well, I am expecting about 4 girls in a few minutes...Yesterday was Christina's 8th birthday. I took a few friends of hers to the mall for lunch. We will have a party for her on a weekend day when I can plan it...bowling I think I heard mentioned. Brookelyn, are you available? Christina turned 8yrs old. She is such a big girl. She is such a bright spot in so many lives everyday...there is something very special about this sweet child...she has a tender heart- HAPPY Birthday Christina!
Take good care, and thank you for checking in...
Peace to you, Kathy
Wednesday, January 01, 2003 at 10:54 PM (CST)
Okay, so somewhere in the Bible I know there is a verse that refers to the fact that our Lord promises to NOT give us more than we can "bear"...well, I have searched and cannot find it...I looked through my concordance and everything...
I have a need to see these words in print, black and white, to be able to read them once again for myself...in other words, I am having my doubts about this one tonight. I mean really...whoever thought that we could handle losing Robert I dare say was really reaching in my book! I said to Jeff two nights ago..."what was the Lord thinking to think that we could handle this!!!" I do not mean to sound disrespectful to our Lord..but, this is horrible--no and's, if's or but's about it!
Okay, so I guess that whole idea that children who are subject to a life that includes battling cancer are special is very accurate...this I agree with. After all, only a "very special" child, like my sweet Robert, could bear to watch from heaven as his best friend and little brother spend the night together without him...only a "very special" child could constantly affect so many lives and not even be here in our physical presence to do so...yes, only a "very special" child...it is true indeed...these children who fight for their lives to beat a disease that is trying to take them from us are "very special"...I love these children that I have come to know so well over the past couple of years. They amaze me--Zachary, Cameron, Steven, Matt, Jessica, Genna, Timmy, Frankie, Amanda, Leah, Ryon, Trevario, Ryan, Mya, Mary, Graham, Israh, Christopher, Ronnie, Kyle, Michael, Seth, Veronica, Nancy, Kristen, Tito, Brandon, Lizzie, Mitchell, Christina, Matthew, Warren, Robert...the list goes on and on...wonderful special children each in their own unique way touching hearts and changing lives...
May our Lord bless them, keep them, and lift them up and hold them close to Him as they carry on...some here with us, some gone ahead.
For us who must forge ahead and carry on...is this a burden to heavy to bear? He must not think so...
Peace my friends, Kathy
P.S. Happy New Year! By the way, some old acquaintances must never be forgotten...
Tuesday, December 31, 2002 at 08:10 AM (CST)
Sunday, March 24, 2002 at 10:01 PM (CST)
hi every one its robburrito,(robert)
i just got back from sea-world.i'm glad to read all your e-mails.as you guys and girls probably heard i'm going to be in the hospital this week...but,when i get out i want to read all your e-mails and i'm glad to here that so many people are praying for me some that i know, some that i don't.i just want to thank everyone that's supporting me with every thing that's going
on and stuff.ok, tha's really all i got to
say peace out :):):);).
Hello dear friends...I hope I did not freak you out with starting this page with the only journal entry Robert ever made in this log...it is a good starting place for my latest attempt at a tribute to those we love and cherish and who have touched our lives and changed us forever...
You see, I refer to you all. Friends...I was able to re-read that entry without much effort because of the handiwork of a friend...A very dear, not so "old" friend paid our family a visit the other day. She and her family--husband, Mike, son, Travis, and daughter, Ashley; came over to spread some holiday cheer. The beloved Benjy was here as well. Carla was the first "new" friend of mine at PBAC...she worked in the Admissions Office where I first worked after starting school there...we have been friends ever since...she is one of the few who gets all my strange and unusual ways and manages to laugh with me at myself!
Anyway, she put all the journal entries together for me into a beautiful notebook. She painstakingly placed each printed page in a plastic cover and decorated it with stickers and such...it is a treasure...it is thick...it is a beautiful reminder of two things to me...my amazing son and his journey, and that there are wonderful gifts in our life...FRIENDS...
Robert was a boy who understood the value of friends early on...he loved many and loved with his whole heart; he was one that did not expect much in return, if anything...For many years in my adult married life, I have felt like friends were too few. You know how it is, a job change, a move, or other life altering situation--people come and go out of our lives. For me, this was a bit tough to take. I grew up with a close circle of friends in a close neighborhood. I make a friend for life...so, as we struggled through with Robert's journey, God gave me a gift...He showed me the amazing love of friends in a new way. I have been blessed to have many new friends, and to have old ones back...
"Friendship is born from an identity of spiritual goals-from a common navigation toward a star..." Many of you came to join this journey with a spiritual goal...with a common navigation...Robert's healing. Friends from all over this world-new and old-joined forces with our little family to help uplift, encourage, support and carry a boy through this part of his life. In doing so, you all forged a bond with our family, with me, that I cannot let go unpraised. I must indeed say, that I have never known such love and support ever in my life. To experience such outpouring of faith and generosity in one's life is an amazing blessing. I am humbled by it, and honored to say the least.
The many notes, cards, gifts, phone calls, money...the prayers, the food, the fact that "perfect strangers" found us and cared enough to go out and find something for a boy they never met and go to a post office and mail it off to him speaks volumes...it is the human spirit at its best. You all should be proud to know that your ways encourage us to keep our chins up and uplift each of us...
For me-well, I could write a book about what I learned from you all...I hope someone asks me to speak somewhere or everywhere about my experiences...the things I lhave learned...much of it comes from the fact that your courage to join in our fight taught me and re-newed a faith in me that had long since died...the faith in friendship! My children, well, they are so blessed because of you all. Christmas was extra special because of friends...the chidren did have such a delightful time and still are. The new puppy-a generous gift of many-is bringing such joy to Jessica especially. He is a new friend that she can love and cherish no matter what. She has such a new understanding of the gifts of love that we have received from our friends...she too is learning all new ways about friendship...we all are.
When you lose a crucial part of your life, a friend, a loved-one, a son, a brother...you lose so much more than just the actual person. You know that. You run the risk of losing hope, joy, peace...you run the risk of losing yourself to your sorrow. It is a new thing that tries to consume you...when the cancer came and tried to consume Robert we were blessed with medical staff who knew what to do and showed us the way...now that something very dark is still knocking at our door, it is through the love of friends-perfect strangers-that we can be shown the way to go on...
I thank you for being there...I thank you for loving Robert and our family...I thank you for being our friends.
Peace my friends...Kathy
Tuesday, December 24, 2002 at 09:42 PM (CST)
TWAS THE NIGHT BEFORE CHRISTMAS AND ALL THROUGH OUR HOUSE...
NOT A CREATURE WAS STIRRING...WELL NOT QUITE, BUT I GAVE IT A TRY...
THE CHILDREN ARE TUCKED ALL SNUG IN THEIR BEDS...
I AM LEFT THINKING OF CHRISTMAS'S PAST IN MY HEAD...
THE MORNING WILL COME
AND THE CHILDREN WILL SEE--
THAT THE LOVE OF MANY
WILL GIVE THEM MUCH GLEE.
PRESENTS ABOUND
FROM THESE GENEROUS SOULS...
FOLKS WHO HEARD OUR STORY
AND WERE TOUCHED FROM ABOVE.
WE WILL CELEBRATE TOGETHER,
ONE LESS THAN BEFORE...
WITH HEAVY HEARTS WE WILL GATHER.
STILL WE COME-TOGETHER,
STILL WE CLING-TO EACH OTHER...
STILL WE LOOK HEAVENWARD-KNOWING HE IS NOT FAR-
THERE IS A SPECIAL SURPRISE
YOU WILL BE GLAD TO READ;
HIS NAME WILL BE "PRINCE"
HE IS CUTE AS CAN BE...
UNDER THE TREE HE WILL GO,
WITH MUCH LOVE BE RECEIVED...
NEVER GETTING TO KNOW THE JOY
OF A BOY WHO LOVED WOULD HAVE LOVED HIM SO.
STILL, A BRIGHT SPOT IT ALL BRINGS...
THE LOVE AND CARE OF MANY SUSTAINS JEFF AND ME.
I WRITE WITH TEARS TONIGHT
AS I THINK OF HEAVEN SO BRIGHT
WITH MY SON IN ITS LIGHT...
SO, DEAR FRIENDS, HAPPY CHRISTMAS TO ALL. YOU ARE LOVED BY THIS FAMILY, AND GRATEFUL FOR ONE AND ALL!
MAY THE LOVE OF GOD GUARD YOUR HEARTS AND MINDS IN CHRIST JESUS OUR LORD...PEACE, Kathy
Tuesday, December 24, 2002 at 06:51 AM (CST)
Hello dear ones...on the Eve of Christmas...what a special time. I can remember as a child, I truly believed it was magical! My little brother and I were the only two kids who actually thought they could see Santa's sleigh flying throught the sky...we looked for what seemed like hours in the night sky for Rudolph's nose...
Now it seems, I look to the sky for real reasons...reasons of hope and anticipation! Hoping to catch a glimpse of much greater things to come...Who would have thought that believing in something like Santa who I could never really see, would help me later accept this concept in my faith...
Well, for those of you who are so faithful to follow this slightly crazy family...I thought you should know that I actually managed to make it through the first two shows at the Kravis Center...I was not real sure how I would feel going back there after being on leave for almost a year. I left last Spring as soon as Robert relapsed...so, I even managed to help with a Nutcracker show...it does warm my heart to see all the children in their finery and families happy together. As a friend mentioned on her page after recently losing her son to leukemia...they were on a trip to Disney recently and she found herself wanting to tell everyone about him...her beautiful boy. I cannot help but think of my family as a family of 6 and not 5...I will forever be the mother of 4 amazing children! I too feel as though people should know what a loss our world has suffered...who we are missing from it! I did not slobber on any children and I even managed to not shed too many tears as the ushers who have known me all these years came up to me and expressed their sorrow in my loss...it is good to be around people who love and care for you. I need that so much...what can I say, I am a needy girl after all!
I just wanted to write a brief note this morning as we are going to bake some this morning and spend the day together...The children are eagerly anticipating Christmas...Jessica, she and I have talked so much lately about so many things...Christmas for her is so empty without her sweet brother...it is for all of us, but than again, why should Christmas be any different than any other day...we have a new way to look at life and live. Simple as that. Matthew and Christina have been enjoying having friends over all the time; and going to friends houses...that is such a blessing to know that as sad and as young as they are, they are children who know how to play and laugh and go on...
Please pray for our sweet friend--did you read that Joe, I referred to Ryon as sweet, don't tell him that! Ryon Rommel...many of you have been on the receiving end of so many blessings from our dear friend Joe...and his amazing beautiful wife Delores...well, their "sweet" son Ryon is battling GVHD big time a year after his transplant...pray he is able to put on some weight...that the lesions on his legs will heal...and the GVHD will get under control with the new meds...PLEASE bang on that throne door, HE will hear you and answer you...I know HE IS THERE!
www.caringbridge.org/fl/ryonspage
Send them a note and lots of love...
I will be back tonight with some other good words, I have a story for you...Peace, my friends...Kathy
Friday, December 20, 2002 at 05:55 AM (CST)
Hello dear friends...I cannot believe it is Friday. The Friday before Christmas. Only a few days left...it is so strange to look at life through my eyes and heart these days...such a different vantage point I have now.
I am usually so eager and full of anticipation around Christmas time. I absolutely love when the children are out of school and we are home together...I must admit it, I am one of those people who actually look forward to Summer break and such so I can be with my kids...lately, I seem to love being around any child. Not that this is new, but, I dare say I am almost obsessive. Good thing Christina's best fried does not mind me calling her "love" and hugging and kissing on her all the time...good thing her parents know me so well, or they would move. The sheer delight I have when I see or hear a little one's voice is amazing to me these days. My children may not believe this, but, there is nothing-absolutely nothing- that brings me more joy and happiness in this world than them. I am sure many of you doting parents out there understand this idea. Christmas is about children. To me it agains reminds of our Lord beckoning us to come to Him as a little child...
Children are my safe place these days...they still laugh, and they still have the ability to play...it does break my heart into slivers when I realize how sad my little loves can be...for almost 2 years cancer tried to consume Robert and our family...now, it is a sadness that threatens to shake our very foundation. I refuse to "lose" anything or anyone to any of this...it is not worth letting it win.
So, as I contemplate how I am going to get through the days at work next week, I find myself thinking of Christmas pasts and such...For the record, I work at a Performing Arts Center here. I have been with them for 6 years...it is "Nutcracker Ballet Time!" I am one of the few employees who actually still like the Nutcracker after listening to it hundreds of times...however, I am having a tough time envisioning myself watching all those families coming together for this season. Actually, that is probably not true, and I am not going there. I may shed a tear as I did in Target the other day when I looked at some of the last photos taken of Robert and the last family photo of us together, but, many times a tear shed is because I am so happy to see families together. To see the love that exists between Mother and child; Father and child; and the entire family unit. It is a precious, precious thing this idea of a family...they come in all sorts of shapes and sizes; whatever your particular dynamics of your family may be, I am certain it is beautiful and amazing...
So, I am wondering if some of you would be so inclined to indulge this very sappy Mom and share some stories with me...it could be a favorite Christmas memory...or I would also love to hear a favorite "Robert" story, or even a whole "Charlton kids" classic tale...I love to hear from you all, even if it means that you called information in California to get my phone number and left me a message on my voice mail...it is all good, and I WANT TO HEAR IT!
Finally, dear ones...get to work, pray for our dear, special friends...the Rommels. Ryon needs all of you to lift him up in a new and unique way...his battle is raging and we all want to be a part of his victory...Lord, we indeed ask in the name above all names, Jesus for Ryon...you see him there, you can do all things! I know, I have seen it, and lived it....to God be the glory, great thing HE has done.
Peace my friends, Peace...Kathy
Monday, December 16, 2002 at 02:56 PM (CST)
Dearest ones...I guess if I could, I would ask a collective HOW ARE YOU? It is strange living a life that has so many focused on your own...so many of you everywhere I go ask me that "how are you?"...ask about the children...ask about Jeff. It is a strange question, a loaded question as they say...Over the past almost two years I have had to learn to re-define my definition of "fine". Today, I wanted to pay tribute to the many amazing people who walked right through the trenches with our family during this journey...they taught me from the very beginning a new way to answer that question of "how are you?"
In honor of precious Robert I want to pay tribute to the nurses and staff and doctors at St. Mary's Hospital. For me to do this justice I find my mind going back to the very moments when Robert was first diagnosed on Feb. 7, 2001...Wed. morning. I had just taken the children to school, including Robert. Matthew was here with me when the phone rang at 8:15am and a doctor I had never met informed me that my son had leukemia...she proceeded to tell me that I needed to get him from school immediately and get him to see a Dr. Hector Rodriguez-Cortes, she gave me the address and told me that they would be waiting for me...well, after I picked myself up off the floor and stopped pacing in circles, my dear friend Angel ran into my house to scoop me up and keep me upright...I called Jeff. As you can imagine, this was unimaginable. We were at Dr. Rogriguez's office by 10:30 am. That is where we met our first nurse. By that afternoon we were in the midst of learning all sorts of new terms and technalities and a new way of life...
The best way for me to describe those first moments and hours is like this...in a blink of an eye, or the answer of the telephone, our lives were pushed into an abyss with deadly implications...it was quite unbelievable...as I felt this darkness ready to consume us...we were immediately grabbed hold of and led through the maze and given light...light at the end of a tunnel. It is like they just reached right in and said, we will pull you through. The staff, nurses and doctors of St. Mary's would not rest and were relentless in their determination to save our son. There was not one moment in this journey that we ever felt like their love and determination and abilities could not get Robert through this.
The nurses walk in these trenches every day...Dr. Rodriguez, was the doctor who told us the first time Robert had leukemia and the second time. Dr. Craig MacArthur gave Robert the courage to laugh while he fought hard for his life. Dr. Gowda...well, he gave us all courage and hope in a very dark place. As you can imagine we forged a bond with these amazing people that will never be forgotten. I pray for these dear people. Many of you know that our time at St. Jude was very special and meant a great deal to us...it was where we needed to be to get through that part of Robert's treatment. BUT, as they say, there is no place like home...and so my dear beloved ones at St. Mary's...each of you, continue to fight for the lives of these precious ones...continue to have hope and be courageous...continues to educate, equip and encourage each new family...unfortunately, there will be another "Robert" fighting for his life...may you continue to have the strength to reach deep into that darkness that tries not only consume a child, but an entire family, in a sense an entire community!
Thanksgiving has past...Christmas is coming....you all are to be honored and thanked with more words than I can express...you are "gifts" of God to us, and will always be remembered fondly...
"When we exchange manly handshakes, compete in races, join together to SAVE ON OF US WHO IS IN TROUBLE, cry aloud for help in the hour of danger-only then do we learn that we are not alone on earth..."
The Charlton family may have experienced dark times...but, in all of this we now understand that we were never alone...by the grace of God we had all of you...God bless you and keep you in peace.
Kathy
Tuesday, December 10, 2002 at 10:13 PM (CST)
Hello friends...yes, Ryan, I think a clone would have been a great idea. Robert's best friend, Ryan, told his Mom the other night while they watched the news...it was talking about cloning; that he would have liked to clone Robert before he had leukemia...very smart boy!
Strangest thing, one of our friends-there is a link for their son's website at the bottom-Zachary's Dad has been asking people to re-write songs for his Cancer Sucks Club. Well, it is strange his request, but it does help folks vent I must admit...anyway, the strangest thing was that tonight Matthew asked if he could re-write a Christmas song to include Robert...he then began to sing "Joy to the World." His version went like this..."Joy to the World, the Savior reigns...let Robert have fun in heaven..." I am sure he will be adding to this. It touched my heart so to hear him singing away about his brother in heaven. He prays for him and always asks that Robert be having fun in heaven. What a wonderful child.
Tomorrow we will be heading over to the hospital chapel for a service honoring Robert. They are having one there so that some of the staff can be a part of a service remembering Robert. Only one of Robert's nurses was in attendance for his service; and one other one came and visited us at the visitation...I am glad they will be able to have this time. They will also be remembering sweet little Seth at this time. It will be very strange to be there...I am not sure I want to be at the hospital...at least I will not have to really go into the hospital, just the chapel. Strange how I do not have any reservations about going back to St. Jude...I can barely drive down the road that leads to the hospital here...I guess I made that trip so many times with Robert holding my hand as we sang along for the ride that I cannot imagine it without him. He always loved to hold my hand...and we sang and laughed all the time.
Hopefully, you all will be able to hear one of the songs that was sung at Robert's service when you read this...it is so special to me; especially the way it talks about how the river runs to find the ocean blue, and how my heart will always run to find you...hope the song comes in loud and clear. I have enlisted the help of a friend with getting a slide show of photos of Robert that was used in his service...let's hope it works.
Thank you for checking in on us...God bless you, Peace my friends...Kathy
Monday, December 09, 2002 at 10:13 PM (CST)
Hello friends...so am I the only one who cries when they are trying to shop for Christmas presents and hear some of the songs of the season? Come on, you can admit it...I won't tell.
Jeff made it home tonight. Matthew was so eagerly awaiting his return...he made a Welcome Home flag and pulled up the blinds in the front bay window and placed a chair behind the Christmas tree watching for him...it was precious. Matthew has such a tender heart. It is obvious that the separation anxiety he must have endured is still affecting him...he cannot bear the thought of Jeff or I going somewhere or making mention of going somewhere...somewhere overnight that is...Jessica told him I was moving to India. Don't ask me where she got that idea...who can understand the mind of a teenager. Anyway, Matthew was like well, Mom pack my bag I am coming with you.
I cannot believe that Christmas is almost upon us. It is so strange to be living in the midst of all of this. We will get through it. I am hoping to bake some cookies with the kids when school lets out... I have enjoyed getting some presents for the children. Christina keeps asking about buying gifts for Robert. I have told her that we can get gifts for another child in honor of Robert...she likes that idea. It is so strange to have only the three children to buy gifts for. We have been talking alot about Robert and we all miss him so much...no big news there.
Many of you have been so faithful to keep us close and check in on us...you are life lines, like fishing line that is invisible but holding tight...thank you, and I want you to know that we all need it. Each of us needs a lifeline...
Thanks for checking in on us. Peace to you my friends...Kathy
Saturday, December 07, 2002 at 09:35 AM (CST)
Hello dear friends...I just had to write. The Charltons are chugging along...
Some dear friends just delivered us a Christmas tree! It is beautiful, it looks and smells perfect. Jessica reminded me that this was the year that it would be Robert's turn to pick out the tree...so how fitting that someone would be a "Christmas Angel" and deliver us a perfect one...we will decorate it when Jeff returns.
Jeff is on a basketball trip with his college guys. As many of you know-Jeff, has been a volunteer with Palm Beach Atlantic University basketball team for many years...I think 6 to be exact. He has gone on many road trips, and brought "up the rear" when he needed to bring players to games that got out of class later than when the rest of the team was leaving...so, he joined them for a tournament in Georgia and will head over to Memphis for a day and then drive home-by himself- in a couple of days...I hope the drive is good for him and I think he may visit some of our dear friends at St. Jude. I would love to join him, but I cannot leave the children right now...as it is, little Matthew is very concerned about his Dad being in Memphis...have a safe trip guys, and good job with the WIN! Way to go Sailfish!!
The children all managed to get through the week at school...miraculous for sure! What prompted me to write was the fact that as I type, there are "7", count them "7" kids on the trampoline! A neighbor just called me to tell me how blessed she has been to hear the kids playing and laughing in our yard...I figure the "term" blessed will last about 6 months, then the neighbors will start going nuts with all the kids playing in the yard!!! Our yard and house has been one of those homes where all the kids hang...I told Jeff that we needed to bring the "life" back into our yard...and it has worked. We had to keep all the children away for so long while Robert was sick...and he loved the trampoline. When he was too weak in the legs from treatments and steroids, he would sit in the middle and the kids would bounce him around...I have pictures of this and I will always remember it. The children play for hours making up all sorts of games and contests. They are very good to take turns, and watch out for each other. Maybe there are special "trampoline angels" assigned to watch over kids playing out there...I especially love to see Jessica "playing" it is good medicine. One of their favorite things to do, is to wet the trampoline down and cover it with soap...it makes "Florida Snow". Sorry for all you sweet folks who are covered in real snow and freezing your bottoms off! Yes, they do this in their bathing suits in December!!! No, Jeff and I have not put on our suits and joined in the Florida snow wars...it's a thought though...
Christmas will be here before we know it...I have spent much time this week thinking about how much grace I feel in my life...I looked in the dictionary for the definition. I know what I know it means...but, I wanted something official...it did include a "free gift of God." Then I looked up forgiveness...one of the first definitions was "pardon". This is also a definition listed under grace..."pardon"....well, I am sure that we can all think of times in our lives that we have been on the receiving end of grace. And, yes, in all of this, I feel overwhelmed with grace and forgiveness. A "pardon"... I think these words are so important to me at this time, for two reasons...first, because I believe the time we had at St. Jude was "grace"--a free gift. We (Robert) could have had to "settle" for an institution here in Florida that would never have provided the same love, safety and peace that we had while at St. Jude. Therefore, to me, it was a bonus...unfortunately, and ultimately, it did not change the end...but the peace that comes from knowing that we were at the best facility makes all the difference...that is grace too, the peace that comes from knowing that. Secondly, I think these words are so important to me at this time because, I know how much I have needed to survive knowing that I am forgiven for all the stupid, wrong things I do in my life...therefore, who am I to not "put down my stick!" This I refer to my attitude toward my husband-at times- and all the awful things that happened and attitudes that affected me so deeply during Robert's journey...don't get me wrong, there are "issues" that need to be addressed. But, I believe addressing such issues with the wrong attitude will get us nowhere...grace and forgiveness go much further than anger and bitterness. So, yes, I will try to yell less in traffic, and be more patient with others-I will practice "putting my stick down"...and all-in-all, I believe a kinder, more gentler Kathy may emerge...of course, I am going back to work this week, so that should prove to be interesting! :)
As far as work for Jeff, well it is a bit of a mystery at this point...we are doing fine in that department...our Lord is faithful to provide for us. He will direct Jeff in the right way to go.
"All this is for your benefit, so that the grace that is reaching more and more people may cause thanksgiving to overflow to the glory of God. Therefore, we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all...So, we fix our eyes not on what is SEEN, but on what is UNSEEN. For what is seen is temporary, but what is unseen is ETERNAL."
2Corinthians 4:15-18
Tuesday, December 03, 2002 at 02:45 PM (CST)
Hello friends.
Thoughts of Robert flood my thoughts all day long. I had to make two phone calls today to different organizations to let them know that Robert was gone; actually, I called St. Jude as well to speak with a friend that was in the Food Service area, she already knew of Robert's passing. I am amazed at how St. Jude has responded to our family. With such genuine love and concern even though they only knew us so briefly...I miss that place and will venture back there at some point to say Hello-Goodbye for our family and sweet Robert. All in all, in spite of all my "concerns" and things that I tried to "fix" I must admit that place is amazing and I am grateful for our time there...God forbid it, but if ever you find yourself or a friend in need, send them there without reserve or hesitation.
As I made those calls and cleaned out medication of Robert's I thought of him and his battle. I cleaned out his mini-fridge in his room and threw out the last bottle of milk that we bought him...one of his simple pleasures in the last days of his life, milk that felt good on his throat. I remembered holding the bottle for him when he realized he could not hold it himself, and how he tried so hard to swallow with that sore throat...I am amazed at what a soul can endure. Robert endured so much to live; and now we must endure a different kind of pain and live. Robert did not get the miracle he prayed for here....another question I will never have the answer to in this lifetime-and I do not even ask it- and now we must learn to live.
Today as I mind wandered and I began to fade in my courage and strength I kept thinking of the verse in Romans. Many of you may know it; Romans 8:28--"And we know that in all things God works for the good of those who love him who have been called according to his purpose." I kept thinking about how I committed this verse to memory many years ago . How it is the kind of verse that almost becomes "cliche" for those who share the Scriptures with lost souls...I began to realize it in a new way today. In my human mind and heart it is hard for me to accept that Robert had to suffer so much, and have to leave this place...I am not willing in my human-ness to have allowed Robert to go through his journey only that God could use it for good. I mean, if I had been asked at the beginning..."Kathy, I would like to put Robert through all of this for the greater good of mankind...." I would not have signed up...not for my son. It is one thing to sign up for yourself--I think of Jesus, and how willing He was to endure what He did for all of us--and then I know how human I am; I would not have agreed. BUT, I am very grateful that within the Scriptures I have a promise of how our Lord can turn this for good ( and believe me we SEE how He is using this)...I also read in this Scripture another truth. That is that Jeff, Robert and all of our children, and Me do love our Lord--you see the second part of the promise of turning something to good must come from loving our Lord and following His purpose. Now, I must admit, I haven't a clue what my "greater" purpose in this life is. I am all about day-to-day living and breathing. I do not know if I am being "called" this way or that way; but, I do know that our purpose for Robert was to love him unconditionally, and constantly protect and provide for him while he was with us...as is my ulitmate calling for my children.
Now I realize these are the saddest of times I have had to endure thus far in my life. I do not want to know of the future. I have lived long enough to know I simply could not bear to know the future...I also realize that things can always get worse...BUT--"Who shall separate us from the love of Christ? Shall trouble, or hardship or persecution or famine or nakedness or danger or sword?...No, in all these things we are more than conquerers through him who loved us...neither height, nor depth, now AYTHING else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord." Romans 8:35-39
Tonight I will go to show my support to the Bunkelmann family as they prepare to lay to rest their little Seth...please pray for this family as they seek to find peace in this time of deep sorrow.
Finally, as always, I am grateful that you came in to check on us...so far all the children have been to school both days this week, now that is a miracle. Jeff was able to work a few days, I, well, I did do some laundry and manage to keep myself busy...I do love West Palm Beach.
Peace my friends, Kathy
Friday, November 29, 2002 at 09:42 PM (CST)
I literally just stumbled across a beautiful page that the funeral home provides for families...Jeff and I knew they had this page created, but have not remembered it. I was checking a friends site this morning, little Seth Bunkelmann, who passed away last night (early Sat. morning). On his site it shows that the same funeral home-Quattelbaum- is providing their services for the family. Strange that there is comfort in this, this family who runs the funeral home are very gifted at taking care of families in this awful time of need...On Seth's site, I saw the notation about the Life Memory page...and remembered Robert's. I went to the link and there was my boy staring back at me...and there were some lovely guestbook entries that Jeff and I had not even read.
Please go there...www.Quattlebaum.org. Click on the part that asks to view guestbook and pages...you will see Robert Mitchel Charlton there...two names below little Seth Charles Bunklemann.
It has been two weeks...so much seems so far away. The other night Christina had a friend over for the night. In the middle of the night, around 1a.m. I heard this little voice saying, "Mrs. Charlton?" I woke up and there she was...looking so sad. She said that she missed her Mom and I asked her what she wanted to do and if Christina was sleepong...she said to me, " I am just homesick..." So simply put to me, no I have a tummy ache, I am scared, I want to go home, just simply, I am homesick...I got her the phone to call home. I began to think of Robert. I thought of him approaching our Lord and saying, "I am just homesick." I wondered how the Lord would comfort him if he missed us...then I realized, he is not homesick, he is home...it is I who is now homesick...and I who must learn to live in this place simply, longing for home...
God bless you with peace and joy and patience as you enter into this holiday season. Peace my friends. As always, thank you for stopping by...Kathy
www.Quattlebaum.org
www.caringbridge.org/fl/sethlovestrains
Friday, November 29, 2002 at 09:42 PM (CST)
Dear friends. Well, it has finally happened...I dare say, it is best known as plain old guilt. I hate that word. I hate regret. I, like my father, have always tried to know that whatever happens, happens...make a choice and that is the way it is. No looking back...today, this afternoon to be exact it hit me-like a veritable ton of bricks. I suppose it was inevitable, right, in our humaness, it is inevitable.
I found myself thinking of how Robert wanted to do everything he could possibly do to live. No matter what. I found myself wondering if I gave him every opportunity known to man to have this. My heart breaks at the thought of so many things, things that may have made things different. What can I say, I am a human after all--a Mom who is completely heartbroken that after all this time and all the prayers for a complete miraculous healing, Robert is gone. It is a bit overwhelming, I know you can relate. Many of you are heartbroken and you did not even know him. We talk about Robert all the time. This helps. Jessica and I talk about so many things all day long...this helps both of us. I never would have dreamed that God sent my other children to me to give me the strength to face the days ahead...
I got a call from a dear faithful friend today...through her tears and love for a child she never really knew, she confided how difficult it is for her to grasp that Robert did not receive the healing we prayed for...these are very tough things to face, very difficult realities that we must mull over in our minds. Things we must be forced to accept and go on...as we talked I once again re-iterated that there just has to be a heaven; and that I know that no one goes there "until their room is ready". I must find a way to somehow grasp that for Robert his time here was only those 11 and a half years. I will never have a second chance. This is inconceivable to me...there is no other choices to be made, no other therapies to try, no cures to seek out...he is gone from here.
Jessica and I have talked much about how she is missing so much without him here. She is now so much older than the "little ones". I see them together, I see the missing part of them. It pains me to watch. They cling to each other, and us in such a different way now. This morning as I looked at them lying on the couch together, the three of them, I thought of how sad it was that they have missed their brother for so long...the sacrifice they made to save his life...the months of separation and such. Matthew, well, he says that Robert came to him in a dream last night. I told him that I believe his brother will visit him alot as he grows up. Christina she just will cry and tell you how much she misses him. Jeff and I can barely speak of it, we both just know how sad we are...
I have concluded that I wanted to share these deep thoughts with you all for this reason...to encourage you all to do that which is in your heart and follow through on all those little things that you keep pushing aside for another time. For the parent who is fighting for their child's very breathe of life, keep fighting. Leave no stone unturned, leave no moment of love and tenderness unshared...I am not saying to ever feel like you are not doing all you can, never would I put that on any of you. I am simply beseeching you to pick up that phone and call that friend you have wanted to call for about a year and keep putting it off. I am saying the next time you are feeling like it is going to be a bad day, look closer, change the day and find a blessing....anyting. I have a huge stack of letters to write. I will get them done. I have to. I have so many pages of things Robert has written, I cherish them. I have his journal. The written word is precious at times like this. I do not have anything that is in my fathers handwriting, but I can still hear his voice when certain people call me and I almost drop the phone. In a nutshell, I guess I would pray that as life continues to unfold all around us, we would take that moment to smile at someone and encourage them. Hug that child a little closer, and breathe in their smell and think of how precious they are...Stay calm, be happy and laugh...love....cry...sing.
Jessica said to me this afternoon that it was so sad to her to think that as Robert celebrated last Thanksgiving, Christmas and his birthday, it was his last one...I said to her, what makes me sad is to think of who may not be here next year with us....indeed, it is overwhelming. You see, I have to have faith--faith in things I cannot see. Otherwise, the things I cannot see will consume me with the fear of them....
Take heart and be of good courage, for I have overcome the world...that is what our Lord Jesus told us...Peace my friends, thank you for stopping by, and THANK YOU for taking the time to say those words that our on your hearts to us...they mean much. Kathy
***Another precious child went to be with our Lord this morning...Seth Bunkelman, he was 5 yrs. old. Please pray for his Mom-Ruth, Dad-Scott, and little sister-Emily***
www.caringbridge.org/fl/sethlovestrains
www.caringbridge.org/fl/sethlovestrains
Friday, November 29, 2002 at 09:42 PM (CST)
Dear friends. Well, it has finally happened...I dare say, it is best known as plain old guilt. I hate that word. I hate regret. I, like my father, have always tried to know that whatever happens, happens...make a choice and that is the way it is. No looking back...today, this afternoon to be exact it hit me-like a veritable ton of bricks. I suppose it was inevitable, right, in our humaness, it is inevitable.
I found myself thinking of how Robert wanted to do everything he could possibly do to live. No matter what. I found myself wondering if I gave him every opportunity known to man to have this. My heart breaks at the thought of so many things, things that may have made things different. What can I say, I am a human after all--a Mom who is completely heartbroken that after all this time and all the prayers for a complete miraculous healing, Robert is gone. It is a bit overwhelming, I know you can relate. Many of you are heartbroken and you did not even know him. We talk about Robert all the time. This helps. Jessica and I talk about so many things all day long...this helps both of us. I never would have dreamed that God sent my other children to me to give me the strength to face the days ahead...
I got a call from a dear faithful friend today...through her tears and love for a child she never really knew, she confided how difficult it is for her to grasp that Robert did not receive the healing we prayed for...these are very tough things to face, very difficult realities that we must mull over in our minds. Things we must be forced to accept and go on...as we talked I once again re-iterated that there just has to be a heaven; and that I know that no one goes there "until their room is ready". I must find a way to somehow grasp that for Robert his time here was only those 11 and a half years. I will never have a second chance. This is inconceivable to me...there is no other choices to be made, no other therapies to try, no cures to seek out...he is gone from here.
Jessica and I have talked much about how she is missing so much without him here. She is now so much older than the "little ones". I see them together, I see the missing part of them. It pains me to watch. They cling to each other, and us in such a different way now. This morning as I looked at them lying on the couch together, the three of them, I thought of how sad it was that they have missed their brother for so long...the sacrifice they made to save his life...the months of separation and such. Matthew, well, he says that Robert came to him in a dream last night. I told him that I believe his brother will visit him alot as he grows up. Christina she just will cry and tell you how much she misses him. Jeff and I can barely speak of it, we both just know how sad we are...
I have concluded that I wanted to share these deep thoughts with you all for this reason...to encourage you all to do that which is in your heart and follow through on all those little things that you keep pushing aside for another time. For the parent who is fighting for their child's very breathe of life, keep fighting. Leave no stone unturned, leave no moment of love and tenderness unshared...I am not saying to ever feel like you are not doing all you can, never would I put that on any of you. I am simply beseeching you to pick up that phone and call that friend you have wanted to call for about a year and keep putting it off. I am saying the next time you are feeling like it is going to be a bad day, look closer, change the day and find a blessing....anyting. I have a huge stack of letters to write. I will get them done. I have to. I have so many pages of things Robert has written, I cherish them. I have his journal. The written word is precious at times like this. I do not have anything that is in my fathers handwriting, but I can still hear his voice when certain people call me and I almost drop the phone. In a nutshell, I guess I would pray that as life continues to unfold all around us, we would take that moment to smile at someone and encourage them. Hug that child a little closer, and breathe in their smell and think of how precious they are...Stay calm, be happy and laugh...love....cry...sing.
Jessica said to me this afternoon that it was so sad to her to think that as Robert celebrated last Thanksgiving, Christmas and his birthday, it was his last one...I said to her, what makes me sad is to think of who may not be here next year with us....indeed, it is overwhelming. You see, I have to have faith--faith in things I cannot see. Otherwise, the things I cannot see will consume me with the fear of them....
Take heart and be of good courage, for I have overcome the world...that is what our Lord Jesus told us...Peace my friends, thank you for stopping by, and THANK YOU for taking the time to say those words that our on your hearts to us...they mean much. Kathy
***Another precious child went to be with our Lord this morning...Seth Bunkelman, he was 5 yrs. old. Please pray for his Mom-Ruth, Dad-Scott, and little sister-Emily***
www.caringbridge.org/fl/sethlovestrains
www.caringbridge.org/fl/sethlovestrains
Thursday, November 28, 2002 at 11:54 AM (CST)
Hello dear friends. I think of you often. So patient, praying and supporting us from nearby, and afar...it means more than you will EVER know. I have had many times written pages in my mind for all of you. I have many stories, anecdotes and life things that come in and out of mind all day long...many things that I search and ponder wondering where they belong...things I want to share to document for myself, my children and my family...I have come to a remarkable conclusion this week--God is being glorified even in the midst, the midst of all of this...
I shared with friends last night and was reminded of how many months ago I began to pray that no matter what happened, whether Robert "breezed" through his transplant and lived to be a very old man and never looked back on this time, or whether, God did not give us the miracle we longed for--no matter what, that He would be glorified. Now granted many of us do not ever ponder our lives in such a way that we truly stop and say, "God, Heavenly Father, glorify yourself..." This is human nature, many of us live with acknowledgement that God is there, that He is real to us, but, having a sense of living a life and living in the midst of something that causes people to look on and know that only God could do that which is being done...and in the ultimate victory which Robert had over his disease, God said, see--only I could do this...no medicine on earth could cure Robert, no social worker, chaplin or pastor could give the peace and strength that our family has to face the "unimaginable". Only God can do this...I admit, I never thought that this would be the ultimate way in which God would choose to work; and I never ever gave up hope that Robert Mitchel would be totally, miraculously healed. I now am faced with the reality of how he was healed and must choose again to see it for what it is...something that only God could do...
Many times in this journey I have stood shocked how the response of people saying that Robert's leukemia was the "best" kind to have; at how many people I met that knew someone that had a bone marrow transplant and the way that so many thought that this was no big deal...I knew early on not to be deceived by this. I realized that this battle was something that should never be taken for granted. Not for Robert, not for any child...not ever. Thus, became my heart's desire that people would know that what they chose to make a part of their life with choosing to follow Robert's story, was miraculous. I made a conscience effort to spare the horrid details; to not share the insurmountable statistics, to not share the true lack of encouragement and hope that no doctor could bring...and chose to let God have it all. Robert himself learned early on that no one could guarantee anything. He chose to fight and not pay attention to what they said. He was a determined young man...He taught me much.
Now, I realize that I have three other just as determined, strong children...Robert had a little brother, and two sisters...when I long to hold onto Robert and hear him laugh, I shake myself and remember they are still here. They need to know that there is hope, love, joy, peace--laughter. Last night we were with friends, someone said to us that they heard us laughing at our table and it warmed their heart. Robert laughed all the time...at me, at himself, at stupid commercials on t.v...we must laugh.
Jeff and I are doing what we do best...winging it! We recognized years ago that we truly had no clue as to what we were doing and how to raise 4 kids...so, we just wing it! There are no guide books to get you through life. But, there can be grace and love and hope if you choose to look for it. Right now, Jeff is out in the backyard with Jessica and Matthew and a neighborhood friend-they are putting together a new trampoline. I told him the Charlton house must come back to life...we need to have the yard where the kids flock and play...Jeff and I may have our differences, but we love people, and children. We have always wanted to be the kind of people that others feel welcome around and happy to be with ...just like our boy. He did not fall far from our tree, our family tree. So, in honor of Robert we are transforming our backyard into a place where we can gather, and kids can play...we have made an area right next to his room that has a fountain with a little boy riding on a sea turtles back with a little pond...(I think it will be a live bait well before you know it!). Life is out there...we are choosing to live it. Robert, well, to us, he is everywhere, somewhere, he is here...
The countless cards, phone calls and thoughts and prayers have been so amazing...so very amazing. I am grateful that so many of you feel that you can share you hearts with us. It is cherished and safe with us...we appreciate the love of many.
I am not sure how this page will be used. I am not sure what I will say here. But, I know that I will be here, and God has a plan for all of us, even me!
A final note, I have some of the program pages and things from Robert's services...if any of you would like one please email me personally with your address, I will send it. If you want a photo of Robert or something like that, I will send that too. We made photo boards of Robert and had a video presentation at his service that scanned three songs...Michael W. Smith's "Hello-Goodbye"; Newsboys "Shine"; and Phil Collins from the movie Tarzan "You'll Be in My Heart". Our church and many were amazed at the amount of photos we have of Robert, the second child...they saw firsthand what a rich and full life he did leave...let me know, I will send it.
We are thinking of you, and grateful does not seem to surmise the feelings Jeff and I have for all of you...Thankful for so many things.
Happy Thanksgiving...it was Robert's favorite holiday--he LOVED the food, and he said he liked not getting presents!
Peace my friends, Kathy
Monday, November 25, 2002 at 08:03 AM (CST)
Hello dear friends...How sweet it is to hear from all of you and to know that you are there...it gives me great comfort to know this. Great comfort and a sense of belonging in these days which can cause us to feel so lost.
Yesterday morning, Jeff and I both awoke very early, about 5:30am...neither could sleep. Just to look at him tells me that we both are in the same place...a bit of disbelief. As we sat and talked of many things about Robert and the last week of our lives together, I began to try to recollect if I shared the story of Robert's passing with you...and I re-read my journal to see that I did not. I would like to share that with you and the many events of this past week. I want a record of it, I record that will never be erased. My mind is sharp and I am known for being quite the "elephant" and remembering everything...however, some things are simply too important to risk being lost in the mind somewhere.
Last Sunday morning around 4:30am I awoke. I had slept with my head on Robert's bed and Jeff was right outside his room on the couch. Our dear friend, Susan-who was Robert's nurse that night-was on his other side. I awoke to see that Robert was in a very peaceful deep sleep. I had not seen this type of sleep in months...the kind of sleep that as a mother you want to watch, to cherish the moments of peacefulness that you can simply watch your child. I was very sleepy as well, I dozed back to sleep, holding onto Robert's hand; this had come to be my place, touching him and being right next to him to hear him breathe, or call out for us...I was posted on watch. At 5:30am in my slumber I heard this sort of deep whistle sound, a deep breathe...in my sleep it sounded like he called out for us, all Robert had to do was breathe the word, "Mom" or "Dad" and we were right there with our ear to his face to hear his words through his oxygen mask and his very raspy sore voice...we did not want to miss a word, not ever. Susan awoke and saw that I was there looking at Robert and she explained that he was very near the end, he was so peaceful. At this moment, Jeff awoke and came in the room. Susan left us and we began to talk with Robert, and hold his hands-one of us on each side as we had done countless times before...one of the last things Robert did in his semi-conscious state as we watched him earlier in the evening was stretch out his left hand and motion the fingers for me to hold it; and then simultaneously, instinctively he stretched out the right hand and did the same...this child knew that his parents would only be a handstretched out distance away. He did not wake and did not speak when he did this earlier Saturday night, he instinctively knew we were right there on either side. This was the last time that we held his hand and he held onto us to tight...this was during the moments that we truly felt that he was literally wrestling and "negotiating" with our Lord. He held our hands as if to say, I am staying here with these two...I will never, never forget that moment...so, it was early morning and Jeff and I could easily see that Robert was in a state of complete peace. We put on one of his favorite songs...his and Jeff's song-Will Smith's rendition of "Just the Two of us...". Robert and Jeff had listened and sung this song countless times; earlier on Saturday, Robert even danced with his head and hands to it when Jeff played it for him...Jeff and I then talked with Robert telling him how much we loved him, how proud we were of him, how special he was...we told him he could go. We sang praise songs, and prayed to our Lord...Jeff opened the blinds as the sun rose to let the sunshine in...it was a very blustery day and the wind and rain blew in a defiant way outside. We sat there with our Robert for 2and half hours as he continued to breathe and fight. Finally about 7:30am, I touched his feet under the blankets and felt they were cold...and I touched his hands and realized they were getting cold as well....at this point I looked at Jeff and I said, he is not here, Robert is gone on ahead...he was still breathing. I laid down next to him in his bed, and put my head next to his and let his rest on mine...I looked up at the ceiling and I had a sort of vision of Robert running on ahead of us, laughing and running just like he loved to do...I could hear him breathing but I could see he was not there...I told him, "Robert, it is early Sunday morning...its just like Dad is in his room sleeping in...and you have woke up first as always; you are there already before us...we are here. You are safe and we are watching for you. I then remembered how when we all would go to his favorite place in this world, the beach at Boca Grande, and how we would all stumble out of bed and we would start asking where is Robert? and we would look, and there he would be down on the beach by himself...trying to catch bait fish...and we would all be in the house watching. This was the final vision I had of Robert that morning...and Jeff knew it was the way. Robert had gone on ahead, ahead of us all, and we were right there watching, ever looking on his life to make sure he was safe and happy and well-taken care of ....I had such a peace knowing that he was in the safest, happiest place that is known to man...in heaven, in our Heavenly Father's hands....I looked at Jeff and told him that we needed to remove the oxygen mask. That Robert would not want that on, and that he needed to go...free from all the lines, and cords and masks and things of our world that he gladly took on to live...and now he was free. We removed his mask and within moments he drew his last breathe. Final. There was no second gasp for air. No coming back...he was already there. It was so clear.
Jeff and I have spoke much of how our sweet boy fought his fight. How so many told us, he will let you know when it is time, when he is tired...Jeff and I kept looking for signs from Robert that he was not wanting to fight anymore. We both must say in tribute to Robert, he absolutely, quite obviously did not have these moments...his way was his way; it was obvious to everyone, the nurses, the pastors-people who had seen others breathe their last...Robert was not giving up, or "quitting". Jeff and I had released Robert days before, letting him know he was the most amazing, brave person we had ever known...but in the end, without a doubt, Robert left this place on his own terms, in his own time....at the dawn of a new day after he had "negotiated" with Jesus about his going...up to the very moment that he drew his last breathe, I am sure he was asking God to give him his miracle...to let him stay. It was so obvious. For me, to know that this amazing boy wanted to stay here with us that bad, that he loved us so much, that to the very end, he believed he would be whole again, get up and walk and run again...this kind of love gives me great strength...I know in my heart that for our sweet boy, the only way to be healed and whole again meant he had to leave this place. The way his disease would not let go of him, was relentless...he had none of this, he refused to ever recognize that his disease would win, would get its prize...it could not have Robert, and he refused to let it. This I will carry with me my whole life. There are so many things that try to master us as human beings....Robert let nothing master him, instead, he chose in his short time here to master everything he did...on his terms he lived, he mastered anything he put his mind to, and ultimately, for Robert I know he looks at his disease and laughs, knowing that he did beat it....may his spirit to live and master all things, and not be mastered by things of this world give us courage and strength....
To God be the glory....Peace my friends-Kathy
Friday, November 22, 2002 at 07:02 PM (CST)
"THERE IS A SUN THAT SHINES IN MY HEART. IT IS STRONGER THAN THE COLDEST WINTER IN MY LIFE..." Theresa Nault
Peace friends...Kathy
Thursday, November 21, 2002 at 05:28 AM (CST)
Good day friends. I keep looking at the date on this page. Looking at it, and thinking of how of all the dates in the world this would be the date we would honor the life of our dear Robert...
It is unbelievably "strange" to know that all of this is going on. Last night we were blessed tremendously by the outpouring, overflowing love and support by so many who came to visit and "view" Robert for the last time here on earth. I do not know how many stood in line, but I do know that Jeff and I are overwhelmed and so grateful that our Robert and family have touched so many lives. It is in that gratefulness that I recognize something different, something that I know only our Lord can do. Grace from a God who loves us; and is sustaining us in ways we cannot even begin to fathom. There are questions we will never have the answers to, questions I may never choose to ask...knowing in my lifetime I will not be granted an answer. As I looked out the door and saw the many, many faces of people that we have known over the years coming together to support us, to see Robert, I realized that God can do anything...even use something as unbelievable as the passing on of a child...in his death, Robert is victorious and whole again.
The room where we had our visitation was filled with memories of Robert. We brought them there. It is not like we brought people into our home, but we did bring much of Robert to that place. We filled it with photographs and artwork that he had done in his fourth and fifth grades. The children were there, everywhere...greeting people, hugging people, sitting with their brother as they watched so many come to love on us. What a sight to behold and be on the receiving end of so much love. Everytime I hugged a neck, as I looked over the shoulder Robert's picture was there in front of me, looking back at me, as if to remind that he was there...watching all of it.
Today, will be long, it will be hard...it will be the first of many very difficult sad days. Many days of confusion and pain for our other children who could not bear to leave Robert's side last night. I have shared with many how it was to live the last almost 2 years of Robert's journey; I liken it to the feelings I had as a new mother with my very fragile newborn. The reality that as a mother you are the lifeline to that child. The very source that child must rely on to survive...I tell people remember how nervous you are when you check to make sure your newborn is breathing...I listened to Robert's many breathes constantly over the past years...holding onto everyone in my heart. Yet, I have found a major difference between the feelings of a new mother and me...when expecting a baby you have a due date; you cannot wait for it to arrive. At the other end of a child's life, you never want that "due" date, you fight to keep it from coming...the labor pains are not a welcome pain that brings forth an amazing being into your life; it is a pain that symbolzes one leaving this life...Never in my mind would I have expected November 17, 2002 to be Robert's due date in heaven...and today, well today we honor his amazing life. In eleven years he lived a wonderful blessed life. I am so grateful to know that.
If you are here and joining our family, thank you; if you are far and not able to join our family, thank you; may God bless you for choosing to join us on this journey. May He use this in your life to change you in some way, let it-let Him change you. Robert chose to be changed and took this bull by the horns and went full force into this battle...never looking back, only looking forward. I thank you for the many, many stories of how this touches your lives and how you have allowed it to change you in a way...
Peace my friends, Kathy
Wednesday, November 20, 2002 at 06:38 AM (CST)
Hello friends. I think of all of you out there watching ad praying still for us...I guess that is a lot of how I feel right now about my sweet boy...I have this amazing sense that he is out there, simply watching from afar.
For me in my life I have chosen for a very long time to believe in something I could not see, something I could not touch...I have chosen to believe in a Savior and a God who loves me. This helps me so much. I now have chosen through all of this pain and loss, to believe. To believe and trust and know that Robert, sweet Robert, is there...to me is he everywhere...now I may not know all the technicalities of what heaven is like, as you know from all of my ramblings, and simple jargon, I am not a genius, or theologian...I am a Mom and a woman who chooses to simply believe...I am sure there are some scholars who would love to enlighten me about heaven and such, but-I am not interested...I feel as though, for the first time in a very long time, Robert is free...free to roam the world that he so would have loved to discover. Free to sail the ocean blue and to surf the great white waves of the sea...I believe that now, he does not have to dream of fishing and catching that big catch, for now, he can be there too...in the ocean in the air...with that sweet friend of his Cameron as he battles on...with Steven in his laughter, with Zach in his joking...with Ryan as he maneuvers through this place being the wonderful, precious tenderhearted boy that he is and as he grows into a man who will be changed because he knew Robert...
And yes, with our children...they each are remembering him in a different way. Clinging to each other, and us knowing that a piece of us all is not here. To me, Jessica and Robert were two peas in a pod; they were in essence, "my Irish Twins". She is feeling this too. Christina, she feels things so deeply and truly exhibits that freely as she goes through her days...many will always know of her brother through her stories. Matthew, sweet angel boy, he is a bit lost...he will be 6 yrs old on Sunday. All he wanted for his birthday was to have his brother here for his birthday. This was the time we were slated to head home. He simply wants to know, am I still a brother? Who is going to teach me to "cast"; What am I gonna do, he's my only brother...? I know as he grows Robert will find a way to teach him and comfort him...I know this.
One other thing I have come to have to recognize in a very sobering moment...unfortunately, this disease is relentless. It is still taunting us, and trying to shake our faith...I received a call from my dear friend from St. Jude. Many of you remember my Lebanese friend...her little girl is not well. She has relapsed. I am heartbroken...I want to fly to be with her, to help her understand all the medical jargon, to hold her and cry with her, because I know...please pray for this family. I am at a loss--and I am mad. I do not know where or how or why, but, this disease is still out there...
Be strong and courageous and steadfast in your life. Remember always the plight of those who suffer not because of anything they have done, or chosen, but because...
We look forward to seeing many of you, to receive hugs and share tears with you in the next couple of days...we invite to come to our family and be with us...
Peace to you my friends...Kathy
Tuesday, November 19, 2002 at 06:16 AM (CST)
Dearest friends...I have sat here twice now to write to you all...both times the words were lost to me...once in my thoughts, once literally through cyberspace. I will be back to tell you the beautiful story of our sweet Robert's passing...
For now, I want you all to have the information about his service and such.
We, as a family, will be having visitation on Wednesday, November 20th at the Quattelbaum Funeral Home in West Palm Beach, from 6-9pm. We welcome anyone and everyone who would like to visit us bring your children and please join us...Thursday, November 21st at 1pm will be his service at our church. That is Christ Fellowship in Palm Beach Gardens...their South Campus. Our dear friend, Pastor Todd Mullins will be doing the service for us. We will then go to the place where sweet Robert will be laid to rest; HillCrest Memorial Park. It is lovely, very near our house, and a very special place indeed. Finally, Robert's school, MeadowPark Elementary is organizing a reception afterward for all who wish to stay with us a while longer. They are preparing food and such for whoever wishes to join us...
Wednesday, the 20th of November; visitation at Quattlebaum Funeral Home; Thursday, service at Christ Fellowship in Palm Beach Gardens; then to Hillcrest Memorial Park; and reception at MeadowPark Elementary in honor of Robert.
The spontaneous and very generous heartfelt outpouring of love toward our family in this time of loss, has been tremendous. We are so blessed to have you all dropping by, and sending us food and such...truly we welcome you, our children have enjoyed seeing so many come to love on our family and I know it helps them to hear the many talks about our sweet Robert. They are right in the middle of all of this, and they see the love and feel the strength that is upholding them...God is right here with us, He is carrying us, truly.
Dear friends, I want you to know that Robert's best friend that I have shared with you about many times...he has been here too. We are so grateful that he wants to be here with us, he and the children are forging a new bond, and facing this together...they informed his Mom and Jeff and I that Ryan was officially their brother too...
Words will never be found to express the amount of grace that overflows in our house and around us...a grace that indeed passes all understanding.
Much love to you all, and thank you, thank you, for sharing in all of this with us. May you be blessed...Peace my friends, Kathy
Sunday, November 17, 2002 at 07:10 AM (CST)
Dear friends...our sweet Robert left us this morning...he drew his last breathe just before 8 am. Jeff and I were here with him in his room as he silently took his last deep breathes...we prayed with him and sang with him...we were blessed to be here with this sweet boy from the moment he took his first breathe to the moment he took his last...as the sun rose and the we watched the wind blow out his beautiful windows we knew he was leaving...
He was tender and precious to the very moment he left us....
Robert Mithcel Charlton April 28, 1991 to Sunday, November 17, 2002...
Saturday, November 16, 2002 at 09:00 PM (CST)
Dearest friends...our sweet Robert is still holding on like no one can believe.
We started our day with him so laboring in his breathing we truly felt he would not have breathe left in him for too long. His nurse who was here with us earlier in the week, was back today. It was a comfort to have her back, as she is an excellent nurse, and very kind. She is an wonderful example of a Hospice caregiver. Sara is her name...in her kind gentle way, she shared with us around 12 noon, that she felt because of Robert's breathing, that he would only linger a couple more hours...
Jeff and I have been steadfast in our ways with Robert. Right by his side providing comfort and care...upon hearing this, we gathered all the children here in the room with Robert. We all prayed and shared with each other how we felt...it was so peaceful to all be together. All of our family was outside as we sat in here together. The children could really sense that their brother was not breathing as he should be...and we talked about our time together. It was precious to be all together as a family. All huddled up and trying to love one another and Robert.
Many of our church family rallied around us. This day was full of love and peace. It was a rainy cloudy day. The kind of day to stay all bundled up together. Robert is still working hard. It is so obvious to us that he is still working through his journey. He may be laboring in his breathing, but is clearly not ready to leave us. This evening was rather remarkable with the prayers that are going up for our Robert and family. Robert truly rallied and has shared with us that he is working things out with Jesus...he told Jeff that he is not ready to go.
We have recieved much comfort from all of our family and friends. Our church family has been literally surrounding us and Robert with love and prayer. We have been uplifted and blessed even in this day. Blessed by God in our pain. Friends have brought food and all sorts of things that we did not even think we could need.
I will try to update you all briefly in the morning before many of you head off to church in the morning...we know how important it is for you all to know how to pray. We are grateful beyond words for all of you and the way you are steadfast in your prayers and love...
Peace to you all, Love, Kathy
Saturday, November 16, 2002 at 12:45 AM (CST)
Good Day dear friends...
Our sweet Robert as I write this is trying to rest. His breathing is becoming more and more labored...he is with constant fever and they are spiking more and more...today getting to 105...he says to me, "I just don't feel good..." His voice is barely audible and as he does sleep he is constantly muttering and moving his hands as if acting out his dreams. This sweet boy is very tired. I can see it. I can also see that he wants to still hold his own water bottle to his lips, taste the sweetness of his slurpee, and hear the sounds of his family all around him.
Jeff or I are constantly at his side. He awakes feeling as though he cannot breathe and gasps for air, and tries to sit up, but cannot. We must raise him up and steady him to help him try to regain his strength. The night is much more difficult than the day, maybe the night air...
I literally sit here listening to every breathe afraid it is the last...he is hot to the touch. This sweet beautiful boy who has touched so many lives with his ability to simply live and enjoy every moment, struggles to breathe and be comfortable...he is the bravest person I can imagine I will every know...
Thank you for all you are doing for our family; feeding us, loving us, praying for us...Peace to you all, Kathy
Thursday, November 14, 2002 at 10:50 PM (CST)
Hello dear friends. We have made it through another day...indeed, we are blessed.
After I left you last night, things got very "hairy" around here for dear Robert. It was time to change the access needle to his port (remember they pulled out his hickman lines the other day due to infection). So now any meds, or IV's he gets are administered through the old faithful port. One of our dear friends from the O2 Peds floor at St. Mary's, Nurse Karen, agreed to come over after her shift to change it out. We had hoped to have the old needle pulled and the area covered with numbing cream and ready to roll for the new needle when she got here...well, that did not happen. Robert was pretty tired and agitated and did not want anyone touching his line. End result was we tried a very small dose of Ativan to calm him down, and it sent him through the roof...he became very unsettled, scared, and such. By the time it was time to get the needle out, he was not going to budge. Jeff and Karen had to hold him down and pull it out. We put on the numbing cream and let it sit for awhile...when the time came to re-access his port he was not happy. Unfortunately, Robert's port has moved a bit over the past couple of years, and it can be tough to access. Poor Karen, who had accessed 6 children's ports at work today, could not get it. Robert was screaming with no voice to stop it...it was so horrible. He was so "freaked" from the Ativan, and then so scared of being stuck and missing his port. It was truly awful. I live and breathe these days to provide a safe, comfortable place for my son. It was awful to know he was suffering, and needed so much to have that line in. SO...Karen called Dr. Gowda. She told him he HAD to come and begged him for Robert. He agreed, so at midnight, the wonderful Dr. G came to our house. He had promised Robert he would come to see his new room, and here he was. Robert was much calmer and I could sense the trust this child has with this man...I have always been touched by the bond these two have forged over the time we have known him...we practically jumped up and down when Dr. G got the port accessed...AMEN.
Unfortunately, this incident left Robert extremely agitated and anxious all day. I sat right by him all morning and afternoon. I was cleaning the house and my StepMom, Robert's Mimi Donna was sitting with him...I heard his raspy voice call "Mom!" I went in and he simply said, "SIT!" I did, and I stayed. I am here now. It is so very obvious that Robert is suffering with much anxiety over his being in the hospital of late...all day he mumbled in his sleep, grabbed at his line, and waved the air like as though someone was coming at him. He said things like, "no going to the hospital," and "no going upstairs...PICU". I would reassure him he was safe and at home. Touching his twitching hands and legs and feet frequently to soothe him. His breathing was very labored, and his sleep very resltless. I cannot bear to think that Robert is finally getting a chance to dream while he sleeps and it might be a nightmare reminding him of awful parts of his hospitalization. Robert continues to try very hard to be strong, and is not complaining at all. He even blessed his day nurse today when he thanked her for helping wipe his mouth after he coughed and spit...
One of Robert's dear friends came to sit with him tonight. A young man whom we have known for many years. He is one of the guys Jeff coached at PBA. He has had such a love and friendship with Robert since he was pretty little...they share a birthday and have been doing something together on their day for a few yrs. now...as we spoke he shared with me that he felt like I did not seem to want to share the actual severity of Robert's condition and the harsh reality of his plight at this time on this page...I told him that he was right. As I watch Robert and see him going through this phase of his battle, I do not want to overwhelm you all with all the hardship he really endures daily. The condition of his body, and such...for me, I do not want to draw people here because of a story of such suffering...I want you all to know his story because of his spirit. His spirit that exudes even in the midst of all this chaos that has become his precious life. He was once thanked by a Chief in the PBC Fire Dept. for taking the time out of his "complicated" life to do something for him...the way he referred to his life as "complicated" has always stuck in my mind. Robert's life is complicated...it is hard, and it is very scary. He is not afraid of his condition, but I sense now he is afraid of certain things around him...right now, he has lost that sense of safety and assurance he had so much of as when we were at St. Jude. Maybe it is a bit confusing being in his new room in a place he is not familiar with...I am so grateful that there are so many people who are here helping us so that I can sit right here with him and reassure him and help him have peace of mind.
Jeff and I continue to find our special roles in Robert's complicated life...they have changed again. No good cop, bad cop stuff...just two parents working very hard with love to help their son...Jeff lifts him and carries him when he needs to move, I speak to him in a way that soothes him...Jeff puts the Nefedipine (blood pressure med) in his mouth when his pressure sky rockets, I use cold cloths to cool his body from the fever...we are so grateful that we can both be here for him. We have moved our team that we perfected at St. Jude back home. We are grateful to be here.
This is a very unbelievably complicated, and difficult time on our lives. We will always be as devoted and steadfast in our care for Robert as we have been all along...that will never change. Our other children sense the work that is going on here. The desperate times that are their brother's precious life. Each of them is reverent in their way with him...they say goodbye in the morning before going to school, yet they do not disturb him or cause him any angst...Jessica sits with her brother when Jeff or I cannot. Christina draws him pictures and writes him poetry...Matthew, he just quietly curls up in our lap and watches his brother as he has done all along on this journey. He has been to so many of his doctor's visits, hospital stays, now he watches as his brother struggles to breathe...
We are grateful for our family that is here to help with the kids and the house and such...at any given time you will find 4 different "Mimi's" here at once. Today, was my mother's birthday...she said her best present was the kiss she got from Robert for her birthday...Happy Birthday MOM...May you be blessed and uplifted this day and forever...
Thank you for checking in and as always for your love and prayers...God bless you, Kathy
Wednesday, November 13, 2002 at 08:44 PM (CST)
Hello dear friends. We are trying to wind down from the day...
Last night I went in to lie down in Robert's room with him; Jeff was out in the family room watching the new Star Wars movie, it was midnight. Robert woke up and I told him that his Dad was watching the movie. He asked to go out there to watch the movie. Jeff and I jumped into gear, and unplugged the IV pole, the oxygen tank and pushed the recliner out into the other room for Robert. We were so thrilled that he wanted to get out of his room and watch a movie with us...of course, we were both ready to sleep, but who could resist such a moment. So, we dozed and watched them movie. Robert stayed in the recliner in the family room all night and rested pretty good.
Robert enjoyed being out here with the family all day. He dozed and looked out the back window at the world...he seemed to have much relief from his breathing and it was such a simple pleasure to have his company all day. Everyone who came in to visit were pleasantly suprised to see him. Several people came by to pray and visit with Robert. He really appreciates and enjoys when people pray with him. He may not have much of a voice to pray out loud himself right now, but the moment they are finished he always agrees with an Amen. Pastor Tom from Christ Fellowship came by today. What a blessing to have such wonderful support from our church family. They have truly rallied around our family and it has been amazing for me personally to feel that. So, many people are rallying around us and our dear Robert...so many. We have pastors from our "old" church coming over as well. When Robert was young, we attended a different church, but have remained very close to many people there, and they are so faithful to our family.
I continue to be amazed at how this wonderful boy has touched and uplifted so many...Robert is so strong and today he showed us that he is not ready to go anywhere. As far as what they told us when we left the hospital, he has already surpassed the time they said he had here...only our Heavenly Father knows this secret. Tonight as Jeff helped Robert to the bathroom, he told his Dad that he was not ready to quit, that he wanted to keep fighting...I can see it in his eyes. Every person that has come into our home that does not know us, people from Hospice, they are so amazed at this child. How strong he is, how he is so sharp and tries to do things on his own. Simple things like opening his own water bottles and drinking...
Today, was a gift. A gift we did not know we would have 4 days ago...We are grateful for that, and count ourselves blessed.
Thank you for staying nearby...we do not know what tomorrow will bring, remember, none of us do...Peace to you all, Kathy
Tuesday, November 12, 2002 at 10:21 PM (CST)
Hello friends. Today was a much more restful day around here.
Robert started out seeming to be laboring much more when he was breathing. I spent the morning just sitting with him and not leaving his side. As you can imagine, that is truly all I want to do these days...As the day progressed he woke up and seemed less laboring in his breathing. He was watching t.v. and such on and off all afternoon. It was very nice to have the same nurse back today that was with us yesterday. Jeff and I have been on high alert as far as providing medical care for Robert for so many months, that it is nice to have someone taking care of this so that we can tend to Robert's needs.
Robert remains having fever all day. His throat is very tender and talking is very difficult for him. All day many people come by to see him, and to visit with us. Pretty much, we only allow people in with Robert when he gives us the okay, and is not sleeping. So many people have waited so long to see Robert, especially since he was gone to transplant for so long. If you come by and we do not let you in his room, please know that it is only so that he is comfortable. He does like to hear who is hear and at different times of the day, I know he loves the hustle and bustle of the house...This morning Robert's "other Mom" came and sat with him for awhile. He of course did not "shoo" her away. Mom's have a way of protecting and giving comfort that makes a child feel safe and loved...Martha, Jeff and I have always known that Robert has such a special place in your family, that you love him as a son...
Our family that is here with us, has been especially good to us, and very good to respect Robert's needs and wants right now. So many people have reached out to our family even more right now. So many are coming together even tighter to add support, feed us, and do anything else that we might need. Jeff and I as we have been for so long are only focused on Robert and the other children's well-being. Dr. Schectman, our family pediatrician, came by tonight to talk with us and check on Robert. He is going to try some things to help get Robert some relief for his throat. He is still wanting him to be transfused at home to help ease his body; Robert continues to bleed from his bladder.
Robert is comfortable. He is a bit restless when he sleeps, and does have times when he is uncomfortable. His tender heart shines through so much.
In one of the lovely emails I received a friend was seeking the Lord and how to pray for us. She came to the verse Psalm 27:14 "Wait for the Lord; be strong and let your heart take courage, yes, wait for the Lord." She looked up the word "courage";it's meaning is this:"the quality of mind or spirit that enables a person to face difficulty, danger, pain, etc. with firmness, and without fear, bravery." As I read this, I thought, yes, indeed that word does encompass my Robert. All through this time in his life he has had to face difficult, danger, pain, etc...this touched my heart to read this, I guess I should submit that they should add his name to the definition.
I must testify to you all as well, that all your prayers, well, they are holding us up. God is being so faithful to give us what we need. Even things that we did not know we needed He is providing. Indeed we are grateful.
It is late, and there is a very sweet, qualified nurse here at our house to help us...Jeff is getting some rest, I think I shall try to as well. Parents, it is amazing how little sleep we can get by on and still manage to cope...
God bless you and Peace to you all. Kathy
Monday, November 11, 2002 at 08:28 PM (CST)
Hello dear friends...I must admit, I am exhausted. I think of all you many times through the day, knowing you are praying and uplifting us. It lifts my heart and does so encourage...
Robert is comfortable. His throat today is much more sore. I feel so bad that on top of everything else, he has no voice. He was much more tired today. We sent up his lab work and his hemoglobin was only 6.2 after two transfusions on Sat. His platelets were so low, they did not even tell us what they were...so after we begged, and got many people working on it, we convinced Hospice to give him transfusions at home...it was a long day. I sort of exhaled as he was given his red blood tonight. I see this going into him as a sort of life line...something that may give him some extra strength that he so desperately needs. The outpouring of donations of blood and platelets has been tremendous. We will continue to do whatever we have to to make sure that he gets it...Our pediatrician called Hospice and told them that he would take over Robert's case and I am so grateful for this. He is a wonderful, very excellent doctor and I know he will help us in any way that he can. He is also very resourceful. That seems to be what we desperately need the most these days...resourceful people who know how to get a job done.
I wish that I could say that Robert is improving and that all is well...I simply cannot. The reality is we can see him struggling and trying to be his normal self, but he has no strength, and such...Yes, this is the hardest thing anyone could have to bear. I also wish that I could report that Hospice has come in here and just swept us off our feet with remarkable care...since we started on the weekend, it was not easy for them to staff. We have had 4 different nurses in two days. One of them has never had a child patient before and was crying five minutes into reading Robert's chart. Another came in for a night shift, and told us she would be back tonight, but told them she could not handle coming back...God was so good to send a very efficient kind-hearted nurse who was with us all day. She WILL be back in the morning. Most of Hospice care is not for children. It is very hard on the some of the staff we have met.
On my heart tonight is this...It breaks my heart to know how deeply sad so many people are at this latest development for my dear son. Today was Veteran's Day. I thought of how my sweet Robert may not grow up to fight in a war; but, what a battle he is fighting right now. He is a soldier like no other. He is strong, courageous, brave, thoughtful, loving, willing to go the extra mile, he has backbone...I watch him. I see him. I think about so aspects of this young boy and who he is as a person. What he is teaching all of us. I tell people come see him, see how beautiful he is. Jessica asked me why I was so sad tonight. I told her it is just very hard to see Robert so sick. She reminded me that if the time came and Robert left us, that he would "be in heaven for eternity" and that we would be with him again...I told her I do know that. I do believe that, and that I also believe that if God so chooses He could make Robert whole again. This is what I want to say to so many who are so broken hearted with Robert's latest predicament...we have faith. We know and believe that if he should have to leave us, we believe and find comfort knowing that he will be with Jesus, our Lord in heaven and that we will see him again..."and they can no longer die; for they are like the angels...for to him all are alive." Luke 20:36-38
Please take heart, and be courageous for us, with us...God will see us through this. He is already giving us strength that we cannot explain. Many are here with us, family, friends...people who love our family and are holding us up. We are praying that Robert would get some strength from his blood. We know he is receiving them special delivery from the many special people who are direct donating them to him...they will give him that extra that he needs right now.
Thank you for checking in and loving us from here and there. Peace, Love, Kathy, Jeff, Jessica, Robert, Christina and Matthew...
Sunday, November 10, 2002 at 10:02 PM (CST)
Hello dear friends...Robert is home. Right now at this moment he is comfortable in his room, watching a football game with his Dad...the Dolphins of course. One of his favorite nurses Karen is here also...she came by to "hang" and give us some rest. I am going to get some rest.
God was faithful to get Robert home last night. We are so grateful for that. He is much more comfortable and happy here. All day he enjoyed just hearing all the hustle and bustle of family all around the house. I kept asking if he wanted his door closed for some quiet and he said no...I have known for a long time that he has truly missed the "normal" sounds of our family and loves to be around all of them.
His cousins came over from Bradenton, he was so pleased to see them...he loves them so much, and they have always brought such joy to his life...we have told him that many people are glad he is home and do want to see him. He is very tired and is on oxygen. There are many things going on with him. I believe that I will focus on all the beautiful love and tenderness that is being shown and shared in our home...not the very difficult things that we see for Robert.
We have around the clock care coming to help. Last night one of the nurses from the PICU came home with Robert...she had prayed with him that God would make a way for him to get home if he really wanted; and then told Robert that if God was going to get him home, she was going with him...I cannot express how great of a help and comfort it was for us to have her here...a blessing which I cannot explain. Praise God for her...she stayed on and filled the nurse in on the morning shift about all of Robert's meds and such...we would have had no nurse at all last night if she had not come with us...God is still being so faithful to help us in the midst of this. Pretty much Jeff and I do all the care for Robert...actually, we can do it, and we have. He is on some antibiotics and such...he is getting TPN still.
I will let you know how Robert is progressing and such...thank your for checking in on our family. We are grateful. Peace to you all, Love, The Charltons
Saturday, November 09, 2002 at 01:44 PM (CST)
DEAR FRIENDS...I AM WRITING TO YOU NOW, I MAY NOT HAVE CHANCE LATER. WE ARE TAKING ROBERT HOME. IT IS THE FIRST THING HE HAS VERY SPECIFICALLY ASKED FROM US IN A WHILE. YOU ALL KNOW HOW HE FEELS ABOUT HIS BATTLE. HE WANTS TO BE AT HOME.
His pnuemonia is very bad. The doctor just showed us the xray from three days ago...he said he does not know how he is not on a ventilator, his kidney is very bad.
Yes, we are hoping and believing for a miracle. Robert is tired and we will be at home.
Much love and as always, thank you for coming by...Kathy
Friday, November 08, 2002 at 10:19 PM (CST)
Hello friends. Let me start by saying that Robert is feeling about the same...he is trying to get some rest and when you read the story of today, you will be shocked that any of us can rest...Also, the outpouring of support for platelets for dear Robert is such a blessing. They told us tonight that they only have one unit on hand until Sunday afternoon. This afternoon, after Robert's nurse hounded them they managed to get a unit up here...this morning at 6am his platelets were down to 16,000 and we found out early on that he would be having a surgical procedure...between the bladder bleeding and the surgery, well, you do the math...16,000 platelets can't stop a finger prick from bleeding!
This morning I spoke with Dr. Vega very early. He informed that Robert's line had grown a yeast culture and they had to be pulled out right away. This is not good. A yeast infection is all in the family of the Fungus. Robert has been on an anti-fungal medicine since transplant to prevent fungus, and if he grew one in spite of this, it is not good. They are hoping the yeast was only colonized in the line and that pulling the line means no more fevers and such. If the fevers persist, they will have to go back in and take out his port. They also did another chest x-ray; it showed the infiltrates in his lungs. This is the deceiving part, when they listen to his lungs they sound clear. That is because he has not wbc to launch an attack and create the usual gunk that builds up in the lungs with pnuemonia. So, there is pnuemonia; they just do not know which one. There is a chance that it is fluid. His body is not able to pull the fluid away and out like it should. They also told us that the CT scan showed that one of the kidneys is not functioning as well as it should. More problems...These were some of the issues we were having to face earlier in the day.
The decision was made that Robert would go down to surgery and have his procedures. The surgeon would pull the lines and do a bronchoscopy at the same time. The procedure took about 15 minutes. The surgeon was running late, so we had waited from about 4pm to 5:30 for him. Robert's throat is so sore is it not to be believed...he could not drink anything...and then his anethesiologist refused to give him anything for the pain and discomfort before the procedure. Robert was so miserable...the surgeon was not pleased to hear that when he came in...he knew Robert did not have to be in pain. Dr. Buffo did his procedure. He came out to talk with us afterward. He shared with us how without wbc Robert may not be able to get over the pnuemonia. He explained that antibiotics will only help so much and then the body usually does the rest...he was so very kind and thoughtful as he shared many things with us about possible things Robert may be facing.
It was about 6pm when Jeff and I went in to be with Robert after the procedure. He was very uncomfortable, but what unfolded in the next 3 hours is what is so intolerable about the whole thing. After listening to the nurse begging them to take Robert to his room so he could get into a bed and off the stretcher he had been on for several hours, I almost lost it. The nurses on the regular floor where Robert had been, "REFUSED" to take him back...they started this whole thing about him going to PICU...Dr. Gowda was furious and insisted he be back in his room. He did not feel it was necessary to have him in PICU. So, while these nurses did there reports and such, and argued with their very rude nursing supervisor, Robert had to be in pain for hours and miserable! I could barely breathe and stand as I was so furious and trembling at having to hear and see him so uncomfortable and pleading to be in his room. I do not know where it all began, or who made the final decision about where Robert was to go I may never know. But, what I do know is that for 4 hours my son did not get any of his meds, chemo, TPN, antibiotics and pain meds that he needed! He was only allowed a certain amount to be administered by the Post OP nurse. It was so unbearable. Then to have a nurse supervisor be so rude to me on the phone. I came up to the floor to get some of Robert's things, after the final decision to send him to PICU was made, and I was beside myself. His nurse from last night was here and looking for him...she had no other patients! She had been brought in to split a shift to be one on one with Robert...or so she told me as I was hysterical!
It is 11:40pm; Robert has not had his chemo, his TPN, his antibiotics or any of his meds...I cannot believe that this stupid hospital would put such a sick child's life at such risk...I realize they were monitoring him and such, but the time it took them to get all his meds to PICU, and get all the explaining of what he needs the night will be over! Thank the Lord the nurses and staff in the PICU were professional and kind. His nurse there told me she even hung up on the nurse supervisor...she was rude to the nurse in the PACU, rude to me, and his night nurse that was looking for him said she had yelled at her! "Pat, nurse supervisor"...your goose is good as cooked! May you never have to hear your son suffer like I did after hearing such heart wrenching news all day about his unstable condition...may you never, never, be on the receiving end of such an uncaring, condescending individual...you may not be able to take it...some people are not that strong...
Jeff finally said enough of this, and was ready to go get his bed from the floor...they were telling him that they were not going to let him bring it down...I stopped him and we finally got Robert moved. I am still shaking...Believe me, the fact that Jeff and I did not go on an all out rampage in this place tonight is truly an act of God...we had more important things to do...take care of our son. We had a very long talk with Dr. Gowda about all that Robert is facing...and know this, Jeff and I fully understand how very sick our son is...we also know that he has asked us to do as much as we can for him. We expressed this to Dr. Gowda and we told him that under no uncertain terms is anyone of the staff to question, second guess, eavesdrop, conclude or do anything but take care of him...he is meeting with the nurse manager in the morning. We told him that we do not care if someone feels Robert is a burden to their schedule, get us another nurse. He is a patient here, and will get the best care they can give.
They have loved and taken care of this child for almost 2 years...they cannot stop now. He needs there love and care more than ever now...we are continuing with the ARAC and VP16 until the next bone marrow on Thurs...at that time, if Robert's health permits, and the disease is down, we will decide our next step.
My heart has never been so broken as it was tonight. I literally felt so betrayed by people who have known us so closely for some time. I feel like they are jeering at us waiting for the other shoe to drop...well, it has dropped, and we are still standing!!! I will fight tooth and nail so that no other parent should have to feel like this...it is not necessary. We are praying tomorrow is a better day. Dr. Gowda says, cold or no cold, Robert needs to see his siblings...he has not seen them in over a week...
Thank you for being so faithful, and please be kind to one another...I would consider a personal favor...Peace to you all, Love, Kathy
Thursday, November 07, 2002 at 08:39 PM (CST)
Hello dear friends...I am writing you in between naps! I was just all curled up with Robert while he was sleeping. He had some serious back pain and asked me to lie down next to him...he pulled my head so that it rested up right next to him. He likes this alot these days. He likes to rest his head right on us. I feel as though he really wants to just curl right up in our laps like a baby...I know he finds comfort and feels safe whenever we are right next to him.
Robert had a better day today. Dr. Gowda was so surprised to see him awake and watching tv when he came in to do his daily assessment. Robert seems to be experiencing some relief from the bladder problem. It is still very obvious, but, he is able to get some rest, and I believe the medicine that Dr. Vega switched him to has really helped. Robert is still very weak. He barely has the strength to move around his bed. He also is very sensitive to touch. There are times that he cannot bear for anyone to touch him or move him. I have to say that through it all, I can see him shining through. It seems like today the tougher things have gotten, the more determined he is...He had several visits from respiratory therapists today, and though they are truly a painful treatment, he does all his breathing exercises.
Tonight as I was lying down with him listening to him breathe...very aware of his weakened condition, I could not help but feel the determination and courage that just ebbs from his very heart. I could not imagine that such determination and courage could exist in one that seems to have so much stacked against him. I thought and prayed of how much I want for Robert to know that he can curl up in the lap of the Lord and find comfort. I want him to hear us pray for his comfort and know that he can find comfort and strength from our Lord. Truly Robert is a very strong and courageous young man, and I believe that such courage and strength can only come from God. All day I felt so blessed to have seen glimpses of my Robert shining through. His demeanor comes through, even though his throat is so sore he cannot hardly speak. The way he uses his hand signals to let us know how he feels and what he wants. He is drinking lots of fluids, even though he has no desire to eat right now. We are grateful for this. The coughing seems to have gone for now. This is a real blessing, as the coughing hurts his abdomen which is very swollen...I tell you the truth, Robert must be miserable. I cannot imagine how sore he must be, and when I watch him move, it brings to mind how I felt after I had a baby. That pain in my gut that made me think I had muscles to do the things I could before...yet not once does he complain. He tells us when the pain is too much, but he does not get angry and such...he talks himself through and concentrates until it passes.
I shared with Dr. Gowda the words Robert himself said about continuing with his treatment. Dr. Gowda said that he was glad to know that Robert was still wanting to be treated...he respects that if the person's spirit is not in the fight, it makes it very hard to win. I know that my son fully expects to be cured...cured, and healed. He asked me tonight if he could have a "Go-ped". Robert is a boy who has every intention of being a boy, and does not for a minute consider any other choice but to have his life back.
I cannot believe his courage...tonight I listened as the other children on the floor were playing in the halls and enjoying getting to know each other. I am a bit sad that these boys do not know Robert. It is strange to be here like this. It is good to be here...our nurses and staff have rallied behind us. They have rallied behind Robert. They love him...I cannot honestly bear the thought that Robert will not have his miracle...I will not think of it. I believe that it will come, there will be a time that we will know it is here...the very moment, and the peace of God will show us.
Today, for me was a miracle. A blessed day that I got to share with Robert. To have some more precious moments of smiles and laughter, and I believe I even got him to roll his eyes with that look of "Mom!"
I am praying that we will get to have more moments with all the children together. To all be home again...we have been home a month now, and we have not even had a meal together as a family around our table. We will, this I believe.
Thank you for checking in, and all your encouraging words and support. It means so much to each of us...I am continued to be blessed and amazed at how many "strangers" are finding there way to read about Robert...to pray and lift him up to the Lord. God bless you, Kathy
Wednesday, November 06, 2002 at 09:52 PM (CST)
Hello dear friends...it is I, Kathy, I am back...
These days are long and very full of all sorts of ups and downs. Jeff and I have been needing to confront, or rather deal with some real realities as far as Robert is concerned. What can I say...we do not know what a day may bring...
Robert is continuing to amaze and astonish us. He is very weak, and is on oxygen. They are telling us that he might have a pnuemonia. Earlier today his breathing became difficult and his oxygen level was not good. He is still a bit "stopped" up in the bowel area. He is managing to get things moving a bit and that is good. Robert has been able to get some much needed rest with the assistance of an adult version of a diaper...he really needed that. The nurses are so amazed that to this very moment if nature calls, he kicks them all out of the room or at the very least makes them turn their backs for his privacy. Many of these nurses have bathed him many a time. The bladder problem is a bit better today. He is still bleeding and we have quite an issue with the fact that we do not feel they are keeping his platelet level where it should be to get this under control.
I feel very led to share with you all a conversation I had this evening with Robert. I was feeling very sad and it is so hard for me to see him struggling like he is. To see him in this weakened state...a couple of the nurses here are definitely making me feel like I am a mom who needs to let go and such...well, I know that any of you who know Jeff and I know that through all of this we have been able to make clear, wise, very definite choices about Robert's care. This time is no different. Only now, we are not at the beginning of treatment...just starting out, we are in a very different place. A place no one, not one doctor that knows Robert ever thought we would be...as I sat with his nurse tonight, I shared with her how hard it was for me to know that he would be getting chemo in this very precarious state that he is in...with such an uncertain outcome. We have spoken with Dr. Gowda about this at length...he has assured us that this chemo is one that gets in there quick, does its job and gets out...not harming other organs too much. Some of them are very hard on the kidneys, others the bladder, others the heart...Robert woke up while I was talking and crying a bit...I sat with him on his bed. I asked him how he was feeling and if he was scared. His throat is very sore and it is hard for him to talk. He said that he was not scared, just tired. I asked him if he was afraid of maybe having to go back to the PICU...he said, not really. Earlier today I asked him if he felt he could do this...he said, "no sweat Mom, I can handle it." So, this evening I share with him that he was very sick. That he may have pnuemonia and such. I asked him if he wanted us to continue with the chemo tonight...he said "yes, Mom, if I do not get chemo, I do not get to live!" I said okay Robert, you want us to do whatever is necessary to do as much as we can...he said yes.
To hear him say to me...if I do not get chemo, I do not get to live...I cannot express how it felt to hear him say that to me...it encouraged me in such a strange way. What a thing to have to have your 11yr old son tell you...what insight. He did not say he did not want to die, he did not speak of being afraid...he spoke of wanting to live. Robert is to the point where he does not even mind if he is in PICU, he just wants to be alive...he is so strong. Over and over he tells us he still wants to try to beat this...I shared this with the nurses who were here tonight. We told them to spread the word, this child is not giving up and they need to honor that!!!
Every moment I literally wait and watch and fully expect my son to be healed. I mean completely and literally healed...I see all that is here in front of me, I see all the reality. No one has to explain it to me...I see it, I see a fragile boy, who was once so strong. I see a weakened boy who is having trouble breathing, but still wants to be strong and is able to think clearly and wisely. I see it all...yet, I--we, Jeff and I--choose to believe. I said this before, all along Robert has taught us how to handle this, with grace, courage and a strength that is not easily explained. Do you think this is why our Lord tells us to come to him as little children...
Every day is new...and many of you cannot imagine this, but, the truth is, things can always get worse...we do not think of such things.
Our children at home are holding up as well as can be expected. Right now as many of you read this, our dear Jessica has already read this and is saying, not exactly Mom! Jess, I do not blame you for being angry...this disease deserves someone like you, like all of us to hate it...this disease is horrible. You are strong beyond belief as well...Robert loves you and misses you. You know that you two were the original Charlton "two peas in a pod"...as soon as your cold is gone you can see him...
"For the revelation awaits an appointed time; it speaks of the end and will not prove false. Though it linger, wait for it; it will certainly come and will not delay." Habakkuk 2:3
Peace to you all, and God bless you; thank you for checking in...Kathy
Tuesday, November 05, 2002 at 07:04 PM (CST)
Hello all, Its Jeff doing the honors tonight. I am sitting here at the hospital next to my sleeping beautiful boy, did I say sleeping? Yes, thank the Lord, Robert has been able to get some sleep. He has been sleeping for the last couple of hours and I'm hoping he has the chance to dream. I know it has been quite a while since he has slept long enough to dream. Maybe he will dream of fishing with his new friend, Jose Wejebe aboard the Spanish Fly. Thanks Jose for taking the time to brighten a little boys life.
Robert has had an interesting day, which around here is normal and it has been amazing to me how our "normal" has changed so much over the last two years. Our day started with Kathy calling me to come to the hospital to be with Robert and by her tone I knew they had experienced a difficult night. The lack of sleep for the past month, along with the many drugs in Robert's body, have left him in a precarious position. Robert is having a difficult time coping and when he has had problems in the past he will sleep walk and I guess last night was no different. Even at the hospital, he was at it again. Just what the night nurse needs, a kid on the run with an I.V. pole and an attitude. Well, luckily Robert did not venture into the hallway. He was content to stay in the room.
I was able to get to the hospital around 9:30am and everything seemed to be okay. The "okay" part never seems to last very long these days. Robert did get a visit today from his new nephrologist(hope I spelled that one correctly)and he seems to be a good one. Any doctor that can impress Kathy has my vote. He seemed to think Robert will recover from some of his problems within a week as it takes this long for some of the drugs to leave his body. We are so grateful for the people who share this journey with us and are able to find answers for us when we think we have run out of places to look (thanks Gail).
We continue to look for answers regarding Roberts treatment and so many are trying to help. I'd say many times it feels like we are grasping for straws not really knowing where to turn. Fortunately, for our family when we feel that way there is always one we can turn to for comfort. Lord, we thank you every day for how you have kept our boy alive and how you give him the desire to fight when we would have given up long ago. We also thank the Lord for the men and women from our church who came by today to pray over Robert. We thank you for the specific prayer of healing for Robert and your faithfullness to the Lord.
I am sorry for what seems like rambling. As I write there are so many different things running through my head I am having a difficult time concentrating. Please know that we are encouraged by the many responses we receive. I don't know what I would do without them.
Rest assured that Kathy will be back in charge of the computer tomorrow. My wife continues to amaze me in her strength and her ability to share with you all these moments in our life. Thank you for stopping by.
With much Love,
Jeff, Kathy and the Charlton clan
Monday, November 04, 2002 at 07:42 PM (CST)
Hello friends...we made it through another day. Not that any of you doubted that we would, right?
Actually, today started off a bit more complicated for Robert than yesterday. At about 6am his urine turned completely red from blood. After checking everything out, and doing an ultrasound, pretty much the evidence points to low platelets as the problem. It has not rectified the matter as of yet. I have faith though...I am grateful that the ultrasound determined that Robert's kidneys look "normal" from the preliminary reading. He has been pretty comfortable all day, and until about 4pm his pain seemed much more under control. His back is really causing him pain. I can see also a terrible decline in his strength. He has not really gotten out of bed for a few days. Granted he gets up out of bed probably 50 times to use the bathroom, but he is not exactly getting any exercise. I keep waiting for the time when he is rested enough to do some laps in the hall...
Robert's renal function continues to be at a very high level. Earlier today I sent out a mass email to alert as many as possible to the need that Robert's kidneys may be in serious trouble, and that they were trying to locate a nephrologist. Literally, as the phone was ringing and Dr. Gowda was in the room talking with me, God was providing. I chose to ignore the phone so that I could speak with Dr. G. It was Jeff's Mom...fortunately, she was persistant. She called the front desk and in came someone to say that she was on the phone saying something about a nephrologist. I said I would have to call her back...just as I thought Robert's kidneys were considered fine because of the ultrasound, Dr. G tells me that if we cannot find a nephrologist here to see Robert, he would have to go to Miami for a consult!!! I almost jumped out of my skin...all I could think of was traveling by ambulance to Miami to that place I hear is so awful...so, I called Mimi Jane. She gave me the name of a doctor a friend sees. I relayed the message to Dr. G...he said they already tried him and he said no...I said I was calling. He gave me that look doctors give you when they figure you are going to do what you want to anyway (I get this look alot). So, I called and within a few minutes the doctor said he would come see Robert! Dr. Vega came in this evening about 7pm; he was very nice, and ordered some changes to Robert's TPN, and bladder medicine. He told me that he felt that Robert's kidney levels were probably a reaction to medication and that he was running tests to check this. He felt like it could all be corrected and that within a few days it should be much better. He was not distressed about what he saw in Robert's condition. I was so grateful to him and thanked him for coming in...he said, of course, anytime! He will be back in the morning...God is good. Amen!
I had to head out to the local pharmacy to get his medicine because the hospital did not have the new bladder med on hand...the girl at Walgreen's told me it would be a couple of hours...I checked back just before I left the store and she said I cannot believe it, it is a miracle it is ready! I looked at her and said you have no idea!!!
Robert is doing well...I cannot stress enough how I can see that much of what is causing such distress for him is the fact that he simply has not had a good night's rest in weeks! I am praying that this new med for the bladder helps him like "magic"!!! I continue to be amazed at his demeanor considering all of this...today he was very agreeable and did not mind being examined by 3 different doctors...
God is continuing to teach me about trust...I was thinking this morning about how faithful all of you are. I found myself realizing that many of you are parents of children with diseases much like Robert. How you have chosen to join our plight and step into our world to help...to uplift Robert to the heavens and seek with us a triumph over this disease. It is not lost on me that in your lives (all of your lives, not the just the parents of children with cancer) there are many things that cause you pain, and need your attention. Yet, you faithfully come here to look in on a child you may have never even met. A family you may never know in person. Yet, you come here...you go to the Lord, you laugh and cry with us...and I thank and want you to know how much it means to me as a person the way you have encouraged me.
"Let us hold unswervingly to the hope we profess, for He who promised is faithful. And let us consider how we may spur one another on toward love and good deeds. Let us not give up meeting together, as some are in the habit of doing, but let us encourage one another-all the more as you see the Day approaching." Hebrews 10:23-25
Thank you for checking in...and may God give you peace...Love, Kathy
Sunday, November 03, 2002 at 06:03 PM (CST)
Good day dear friends. You all will be glad to know that I have nothing to report that is not considered an improvement from yesterday.
Robert's BUN and Creatine levels (the kidney levels) have gone down a bit. His potassium level, which was way high, has gone down a bit as well. His protein level is better and so is his billirubim level (the liver level, as I call it) is better-down a bit. We are praying and expecting that these levels-which are still too high-will continue to go in the right direction, DOWN to create a better scenario for his body to tolerate his chemo and fight the leukemia cells. Robert's belly looks very swollen. Dr. Gowda examined it today and said that it is not swollen due to the liver or spleen being enlarged...he feels it is from the steroids. This is usually how the kids on chemo and steroids look, skinny legs, and swollen bellies. So, it is a good thing that this is the cause. That should improve now that he is off the steroids with this new phase of treatment. He has his first dose of the Ara C and the VP-16 last night. He is a bit queasy today but not to bad.
We are still searching for some way to give him relief from the bladder thing. Apparently his bladder walls are very thick and this is why he needs to "go" so often. It must be miserable to not be able to sleep more than a few minutes at a time for days on end...I am continually amazed that the child has not simply and utterly lost it completely just from a lack of sleep!!! A catheter may be on his horizon...it may be the only solution to provide some relief ...me and one of the nurses literally are beating the bushes looking for something to help him...we will get there. We also made a decision about pain management. There is no reason that this child should have to be in pain constantly. We are trying a patch called "Fentonal" (spelling)- it is a time released pain med that can be worn for 72 hours at a time and can be increased or decreased as needed. It is not supposed to be as sedative as the morphine. If this does not work, we will go to the morphine pump thing...
Overall, my sweet boy was better today. He is having some strange sort of sinus congestion which we are watching like hawks to make sure it does not get into his chest. Robert is still taking his pills! Can you believe that one!!! It does require patience and just the right amount of chocolate pudding coupled with Mom's gentle persuasion and encouragement...but, it is getting done. He was more agreeable about being examined and such today as well. Pretty much, as far as I am concerned--it is pick your battles time and let the chips fall where they may. Robert needs rest-he is getting little of that-lots of love and patience. That he is getting lots of...
We are praying for his ability to tolerate the new chemo. For his overall well-being to improve, and for his strength from the IV food/TPN; he greatly needs some strength from food of any source. I pray that this new pain med gives him a handle on the pain and does not cause him to feel so groggy.
When I awoke this morning I felt good to know it was a new day...a Sunday...I am grateful that the staff that works so well with Robert was there for him this weekend. We are all so grateful for the continued outpouring of love and support and encouragement to not give up and be strong.
I came home tonight to be with the children...Matthew called me crying so hard that he missed me...we all miss each other, but are so grateful that we are all here. As I put things away in Robert's room and looked at his beautiful space I thought about how much we want him there...how it suits him so much that I can just envision him as a teenager and what a mess it will be then. The new fishing poles that are in the corner won't be so new anymore--they will smell of the ocean and fish guts! I will be hollering at him to put them in the garage...I won't mind so much if there is a spot of dust on the shelves and I will probably be afraid to go into his bathroom...I pray that all of this will seem so far away and long ago...My hands will shake because I am getting older and such, not because deep down I am really a nervous wreck...I will jump when the phone rings because I will be worried it is one of the kids friends that will keep them on the phone for hours...not because I cannot bear to hear any other bad news...These are the things I am hoping a praying for...the somedays...
Today, well, today, Robert had a better day--and hence, all the Charlton's did as well.
Much love and peace to you all...thank you for checking in on us...Kathy
Saturday, November 02, 2002 at 05:25 PM (CST)
Hello friends. I guess at this point I do not have any good lead into this page...things are definitely not any better for our Robert.
We looked at his lab work and spoke with Dr. Gowda about the plan. It appears that the evidence of blasts in his blood has gone up from 56% to 70%; this is not really that important, so much as the fact that it did not decrease. It is obvious that the treatment he is on is not effecting his disease. We talked with Dr. Gowda and called up to the head of the transplant program at St. Jude to discuss if he felt that we should proceed with more chemo. He felt that a regiment of a low dose Ara C with some VP-16 could be tolerated. Robert must be monitored very closely to do this. He has no evidence of wbc in his marrow at all. This of course does not help the situation. They are going to start to give him the nupegon shots to help boost his system.
Today the nurses talked with me at length about things like "quality" of life, and how to know when to do what and how to follow Robert's lead in all of this. We have explained to Robert that his treatment plan needs to change somewhat and a new phase started to help eliminate the disease. It is a bit difficult to know exactly how he feels. He has indicated to us without reserve that he is not ready to "give up". Yet, this evening I see how tired he is, and he looks so miserable. He has lost alot of weight, and he is not himself at all. They are "speculating" that the sudden increase in the levels of his BUN and Creatine are from his leukemia. These are the levels that indicate how is kidneys are functioning. They are pretty high. Not once did they reach these levels during his transplant. His liver is also a bit unsteady. They are putting him on a low protein TPN to make it easier on his kidneys. A level called the albunim level (which shows the amount of protein in the system) is very low. That is why he is spilling out billirubim from his liver. These are all toxicities to the body. They can be controlled, and if it is disease, the hope is that the chemo will kill off these cells.
I tried to talk with Robert earlier about what is going on...he said he did not want to hear it, he knew what I was trying to say. He also is very tired. The situation with his bladder is not giving him a moment of relief. Overall, at this point, it seems insurmountable quite honestly. We feel strongly that the need to try these other drugs is necessary. Right now, he is pretty uncomfortable. I keep praying hat he would have some relief from something to help him cope. They keep telling us to see what he wants, etc...well, the truth is, he is wiped out and not exactly having a clarity of mind. When he is not feeling so tired he is his old self and deals quite well with everything...
The doctors all agree that he needs to try the other therapies if he can tolerate it. We are praying that his kidney levels balance out and such...we have taken him off the meds that affect these levels to hopefully get them in order again...if it is out of balance because of disease, the chemo is the only thing to eliminate that. The nurses were explaining to me that the pains in Robert's back are probably from disease as well...it literally causes the bone to ache from the inside out...
So, there it is at this point. I do not really know what else to say. I still feel like I am just waiting for a miracle to happen. What can I say, I am a realist, who is an eternal optimist. I simply trust God. I have been praying that whatever it is that would bring Him the most honor and the glory, whatever that may be-will be. Many years ago while I was in college, a teacher taught us about prayer. One of the things I remember the most was how she taught us about how King David always prayed that whatever brought the most honor and the glory to God no matter what that is what he wanted...don't get me wrong...there is absolutely no way on this beautiful earth that I can begin to imagine that any of this could possibly be the most honoring thing to the Lord...I cannot believe that any of this is even remotely tolerable. I am a human trying to trust the Lord...Robert is his child and I know that He loves him more than I can begin to imagine. This I can accept.
Jeff and I both are sort of just doing things that are so normal...for me, anything sort of normal makes me feel like this is all just going to go away as fast as it came. We have always tried very hard to not let this horrible disease consume all of us...Robert gave us that strength. He has always shown us how to handle this. People just sort of look at us like how in the world are you functioning. Well, Robert taught us how to live in the midst of this turmoil. We watch him, and we listen to him...God gives us the strength, and we know that He has given Robert the strength and courage he has had all along.
Thank you for being so faithful to check in...to pray, to love, and to cry with us...we have needed you all along this path. The battle seems to have just begun-again. Lord, hear our prayer...Love, Kathy
Friday, November 01, 2002 at 09:05 PM (CST)
Hello friends...I promised to update you all if I received any word tonight from the doctor about the bone marrow...
Jeff called me just a few minutes ago; about 9:30pm. He is at the hospital with Robert. Robert came down with a temp of 102 today and had to be admitted to get antibiotics and such. His kidney levels are extremely high, and he has this fever. His lungs are clear, thank the Lord. We also finally got someone from St. Jude to tell us that his last MRI was normal. Our doctor here had not even gotten any specialist confirmation or reading of the films...so we told him what the doctor at St. Jude told us.
Apparently, when Dr. Gowda does not have good news, he does not have a sense of urgency in telling it...he told Jeff tonight, only after a nurse called him and told him he needed to speak with Jeff, that Robert's bone marrow was either the same, if not worse...what that means in terms of stronger chemo we do not know. What the next course of action is we do not know...
We do know that Robert is trying very hard. He told his Dad tonight after he had a fit about taking his pills in the hospital-that he was not ready to quit...that he still wanted to fight. He then looked at his Dad and said, "Are you gonna cry now?" His body is not near as strong as it was a few weeks back; his kidney levels are dangerously high, and he is not eating as he should. Putting him on the IV nutrition (TPN) would be hard on his kidneys...
These are very precarious times at best. I will head to the hospital first thing in the morning so that we can figure out the next step...I stayed home tonight after I went to the doctor and got on an antibiotic in case the fatigue and soreness in my throat was not just an allergy. Jeff and I are going to try to get some rest tonight...times like these call for clarity of mind and strength of body to go with the determination of the spirit!
May God grant us wisdom and courage to follow His will...Robert is in His hands we know this...Peace to you all, Love, Kathy
Friday, November 01, 2002 at 07:16 AM (CST)
Hi there...I wanted to put a few lines in this morning. I did not update last night as it was a little late after a long day at the hospital and Halloween. We have not received any results from the aspirate/biopsy yesterday. We expect to hear something today. I am certain that Dr. Gowda will call us as soon as he knows something so that the plan of action can be developed...
I will update tonight IF I have results...don't panic if I do not update later...but, please, check back.
Robert did well yesterday with the bone marrow test. I am certain that he will be pretty uncomfortable today, especially since his back was already sore. We have a new pain med in addition to the long lasting one he is on. I trust that he will be feeling better today--he is sleeping, and seems to have gotten a better night's sleep last night. I have taken to sleeping on the couch outside of his room in the family room. It is so much easier for me to be right near him if he calls for me to "tuck" him back in...of course, last night it seems a "truck" drove right over me while I slept! At least that it what it feels like this morning...I did manage to get everyone out the door, and I am sure that a little advil will cure it! Jeff is doing some work this morning...so it is very strange to be home like this. Like old times for sure.
Last night Robert was chilling on the couch when he put out the request for his best bud Ryan to come over...Ryan was at home waiting for Robert to call, because he did not want to go out trick or treating without his beloved candy-monger buddy! Ryan and his Mom, Martha, came over. The boys were so content to just chill. We sat out front passing out candy and dodging mosquitos. All of a sudden, the front door opened and Ryan appeared with the wheelchair. He informed us that Robert felt better and was ready to go trick or treating...needless to say, Martha and I shed a few tears as we watched our boys heading up the block...Ryan wheeling his best friend down the way. These boys touch my heart so much. I see such unconditional love from Ryan toward Robert. Robert knows this, and that is why he feels so good to be around him. Ryan pushed him up to the doors of the neighbors and was so proud to be out with his best friend...of course, when he lost control for a moment, Robert had me take over! We went only to a few houses and then Robert's back pain took over...we headed home. The boys were happy to have at least managed to get some candy!!! The little Charlton children went off with Mimi Bunny (my Mom) and Uncle Mike (my brother). They of course were exhausted and happy when they returned!
I will be back later with results...thank you for checking in! Peace to you all...Kathy
Wednesday, October 30, 2002 at 09:52 PM (CST)
Hello friends. Well, I actually do not know where to begin this page...I used to always start out with giving lab results and such...you know, remember back a couple of months ago when we all were hanging onto the edge of our seats for those new cells...these days, Jeff and I do not even want to know lab results...simple as that.
Jeff did draw Robert's labs and took them up to Dr. Gowda's office for him to check them. His platelets were low at 16,000; his hemoglobin was at 9.5-they think it was a bit high because Robert is slightly dehydrated. Dr. Gowda was swamped in his office. But, he had asked Jeff to stay while he ran the labs, and he spoke with Jeff about Robert's treatment. He expressed to Jeff that he felt that Robert would benefit from an anti-depressant. He said to Jeff, I know this boy, and he is depressed...he does not feel good, and it shows. He is right. Dr. Gowda also shared with Jeff about his conversation with the doctors at St. Jude. Dr. Gowda had thought that they might want Robert to go there for his next bone marrow test and get evaluated. Basically, they said it is not necessary until he is in remission. To put it bluntly, they were not impressed with the response against the disease...Dr. Gowda shared with Jeff that he felt that it would take at least 6 weeks to get Robert into remission. He is starting another chemo drug. VP-16 is an oral medicine that is known to be very effective against luekemia. He also wants to try a regiment of the drug Ara-C for 2 weeks. Robert would either get an IV drip for 2hrs every day for 2 weeks-all done in the hospital; or a shot in the leg every day for 2 weeks. It would be given in a lesser dose than is typical; but Robert would have to be monitored even more closely because he will be so unbelievably susceptible to other infection with no chance of re-bounding his counts. This of course is very risky.
Dr. Gowda will do another bone marrow aspiratation tomorrow. It is sooner than we anticipated. Jeff and I have both had this sinking feeling that he is doing it to decide if anything that has been attempted thus far is even working. Needless to say, we do not want to know this. We do not want to know if it is not working.
Robert is very tired. Sleeping on and off all the time. Every night I go to sleep hoping that when we all awake he will feel better and refreshed. So far, there is no relief for him. Today he hardly ate anything. The chemo is really taking a toll on him. Robert looks so tired and hardly even talks much. I can see that the steroids have really taken effect on his psyche and they seem to literally be making him feel like his skin is crawling...he is frustrated. I know this. I am concerned that some of the sleepiness is from the anti-seizure medicine he is on. Also, I wonder what effect the morphine pill he is taking has on his overall mindset. He is having alot of back pain. I hope to be able to talk with Dr. Gowda about giving him something to help ease some of his symptoms...I look at Robert and wonder how much more his body can take of this chemo. My heart keeps looking at him and knowing and expecting him to just get back to his old self. He is so strong, and it is so hard to see him like this. He is helpless right now. Even with all the hardship of transplant he has never been like this...
Robert was so looking forward to Halloween. I was remembering last year and how I painted his face to look like a basketball and he wore an old practice uniform from his favorite college team--PBA Sailfish! Robert loved going to the games and he loved all those guys so much...he did not care that they were their "old" practice uniforms, he just thought they were so cool. He and his best friend, Ryan, were quite a pair last year...I am sure that after tomorrows bone marrow aspirate his back will be very sore. It is the fourth one he has had in a month.
I have spent alot of time this evening reflecting on all of this...looking at it from so many angles. The realistic one, the desperate one, the one that knows in a moment-a twinkling of an eye-Robert could be healed and on his way. I started thinking of the stories of Jesus when he healed people. I think alot of the story about the family who sent for Jesus because their little girl was sick and dying...and how when he arrived at the house the family was weeping and saying "Lord, you are too late...". I can just imagine how Jesus felt as He saw their pain, and how He said to them, go be with your daughter for she is healed. I believe in these stories so much. I may be considered a bit naive by some standards, but I literally believe that Jesus had the power to heal with one touch. I do not however understand who, or how He chose to heal...I am certain this is a question that could be pondered by many a religious expert for days...I simply know that He can do this...I may not be the most faithful, the most devoted, or the most loving of God's children, I am a very human individual...yet, I know that in Him I have the faith that anything can happen.
I must say, I am pleading for some relief for Robert. I cannot accept that if he must face the inevitablitly of his disease, that he should have to suffer...I know that he would gladly endure the things he is now to beat this disease...I know this for certain. Please lay him at the feet of the Lord. Ask that His will be done and may God be glorified in all of this.
We love you all and are grateful that you are there for us...Peace to you--God bless you, Kathy
Tuesday, October 29, 2002 at 10:02 PM (CST)
Hello friends...Wow, what a day we have had...rather, what a cool night! Robert is sleeping soundly in his room and feeling a little run down. He has been resting all day for a big event tonight...we took him down to meet a special person.
Robert had been invited to be a special guest at the annual Hall of Fame induction at the IGFA (International Game and Fishing Association) headquarters in Hollywood, FL. For those of you fishing enthusiast you will love this...Jose Wejebe invited Robert to be his special guest for the evening. Jose is a great person. He has called Robert several times over the past week and really reached out to him to let him know what a special kid he is. Jose has a fishing show on ESPN called the Spanish Fly. He called last week as he finished shooting his show up at Martha's Vineyard. He really wanted to meet Robert. A friend of the family told Jose about Robert and got the ball rolling for the meeting. Robert loves to watch Jose's shows and you all know how much he loves fishing! This was like icing on the cake for Robert...originally back two years ago when Robert first considered a wish, it was to go fishing with Jose Wejebe...on his boat the Spanish Fly. What can I say, even unspoken wishes can come true. Robert may not have been in tip top shape for the event, but we could see and know that he had a great time, and appreciated getting to hang out with Jose. It was cool for me to hear Jose speak about how he was when he was Robert's age. He sounds so much like how Robert is about fishing...I know those two would be good buddies if they had a chance. The folks at the IGFA were amazing! They treated us so wonderfully and gave us the royal treatment. Jeff and I actually sort of had dinner together...we were eating our appetizer and I noted that we had not sat down to eat anything together in a very long time...The IGFA gave Robert some awesome gifts...and a very special-huge-large mouth bass to hang in his room. Jose was kind enough to autograph it. There were some other very well known fishermen in attendance for the event. Each of them came over to meet Robert and everyone was so kind and courteous. Robert stretched out on a couch upstairs in their offices while Jeff and I were at dinner...Uncle Mike was with us and he and Robert talked fish with Mike from the IGFA...it was a really great night. Thank you to Jose, and the wonderful folks at the IGFA! It was very special.
They were very curious about Robert's story...as we shared the scenario that Robert is facing with them. I shared with them that all along I knew that whatever happened would be something that caused people to recognize that the miracle of Robert's life was only something that God could do...I told them, that now, even with medicine, there is no doubt that God is doing all of this to keep Robert going. I wanted them to realize that cancer is a horrible thing, and that even the most treatable of them (ie, Robert's ALL) really must rely on God's intervention to get a child through it...and with this in mind, I want to close tonight with testimony to this...and may God be glorified in our lives and in Robert's continued recovery...
I will have some new photos of tonight on the page for you all tomorrow...thank you for stopping by and checking in on our family.
Peace to you all...Kathy
Monday, October 28, 2002 at 08:11 PM (CST)
Hello friends...Just a quick note to let you all know that Robert is sleeping in his OWN bed, and in his OWN room! That is the most awesome thing I have been a part of in a long time...I was standing in the kitchen cooking dinner, his favorite-of course, and I heard him call "Mom?" and to look up and see him in his bed was such a sight to behold...Robert may not be expressing much jubilation these days by way of laughter and smiling, but I know that he is happy.
Jeff took him to the doctor's office today for lab work and such. Then it was off to the hospital for his chemo shot in the leg. His labs are pretty much the same. His wbc .2; his hemoglobin is above 9; and his platelets are holding on a little better these days, today they were 39,000. He is not feeling well. The steroids are taking their toll on him I can tell. His skin is "itchy" and he is as I said a bit moody. I only wish the only positive part of the steroids-the desire to eat everything in sight-would kick in...the good news is, he did not lose any weight since Saturday. The back pain is still pretty evident. As is the constant need to "go"...we are praying, praying, praying...that this would subside and give him relief and let him get some long hours of sleep. They are closely watching his kidney and liver functions. They are a bit elevated right now.
I spoke with Dr. Hale from St. Jude this morning. I was inquiring about some meds Robert is on, and also if anyone looked at his MRI up there. They told us here that it looked better than the last one...what that exactly means I have no idea. I want to hear St. Jude's interpretation. We talked for a bit, and Dr. Hale shared with me that since Robert has relapsed twice now it would indeed be harder to get him back into remission, but he was glad to see he was responding to the therapy at all. I shared with him about is overall health, and he was pleased to know that he seems to have re-bounded from the setback of the lung issue and such when Robert first arrived home. Dr. Gowda would like Robert to have his next bone marrow aspirate next week, and he wants St. Jude to do the procedure and for them to evaluate him live and in person. They are making arrangements to get Robert flown up through the Angel Flights group, as he cannot fly on a commercial airline right now--too risky! I will let you know about the plans for this as we get more details. Dr. Hale told me that he was going to be meeting with all the doctors today and they would discuss Robert's MRI and such...I told him to share with everyone that Robert is now swallowing pills. He said that the pharmacists and everyone would be so glad to hear that...they are all following Robert's progress through his webpage. I find a sort of comfort knowing that they too are pulling so strongly for Robert and watching very closely everything that is going on.
I am very sleepy, so I am off to bed...Robert woke me up many times last night--to have me hold his hand, or rub his back...at 4:15am he told me that he wanted a cheese omelet with ham...I asked if he wanted right then, and he said no later, I am not hungry anymore...I was ready to jump up and start cooking! He dozed back off to sleep, I wonder if it wasn't just a dream. It was wonderful to watch him have his Christmas this morning...he may be a bit grumpy, but he is so tender-hearted these days...he needs lots of TLC...
Take good care, and God bless you all, Peace to you...Kathy
P.S. I cannot believe I did not tell you, we all got a sort of Christmas present yesterday...some dear friends brought us over a new bar-b-q grill! Can you imagine...how thoughtful was that...ours was pretty pitiful I must admit...Thank you sweet friends!
Monday, October 28, 2002 at 05:56 AM (CST)
Good Morning all! It is Christmas in October as Robert put it...he is busy going through all of his "stuff" from his shopping spree and getting ready to what he says is his favorite part...putting together his tackle boxes.
Yesterday was a very busy, long day. Robert was not feeling that great, but I know was so glad to see his cousins (major fishing buddies!) and his best fishing "buddy". The "guys" (Robert said only boys in the limo-the girls were not pleased!) climbed in the limo and the our caravan headed off to the store. We did get far, at the stop sign at the end of our street my cell phone rings, and it is Jeff calling saying they needed the urinal and some pain meds...I zoomed (I zoom alot in my minivan these days) back home raced in got the stuff and met them back on the road...hence, the reason wanted only boys in the limo--his need to use a urinal several times during the hour long trip. We get to the huge Outdoor World Place and it is not so packed (thank the Lord). Robert was sitting in a wheelchair inside waiting for whoever they had designated to "shop" with him...I sensed how impatient he was and he wanted to get looking around. I decided that just because it was a fishing store does not mean that I could not "shop" there...so I wheeled off my boy and said they would have to catch up when they got there act together. This place is so awesome. I can see why Robert has literally dreamt about going there and going hog wild...Believe me, he did not feel good at all. His back was in such pain. He managed to get through most of it, and did pick out the key things he wanted-some very cool fishing poles and reel; and the perfect fishing hat. He also got two really cool tackle boxes he had spotted in a catalog. His uncle, Dad, cousins, and best friend, helped him with getting all the tackle he needed. At that point his back pain was pretty severe so he and I were headed out to the van for him to lay down. He felt better outside of the store so I wheeled him around and we talked and I could see he was better. He made it back inside to watch them "check out" and I knew that this morning would be like Christmas for him...his dream Christmas rather!
His room looks amazing and I am planning on moving him in today! We walked him out to his room yesterday so he could see it in its finished state, and clean and with the big bonus suprise they put in there for him...a large mini fridge! Robert thought that was so cool, but I could tell he thought it was a joke...right before going to bed last night, he asked, is that a real fridge! Does it have a place for ice...I thought that was so cool! I know he will be so excited when he sees it all together. The view out from his windows is so nice...I know he will just love looking out into the yard and seeing the sky. His bathroom has this huge picture window so that he can gaze outback while he is in there as well.
What a day indeed. I hope that all who were here realize that though Robert may not be feeling well, and the sight of him in this weakened condition may seem discouraging, that he is happy. He is trying very hard, and this is hard for him. Today he is feeling better-Thank you Lord. I know that it may not have seemed like he was thrilled to have everyone here-girls included-I know what he likes best is when all of his family is around him. He tells me that all the time. The only part of his wish that did not happen was "all" of us sitting down to dinner together...we need to work on this one soon.
We are off to the doctors this morning for lab checks, and a shot in the leg...Robert knows it is coming and has already asked for the Emla(numbing cream) for his leg...so far, so good. I am praying that he has some sense of relief from the lack of sleep and pain in his back. He needs some restful nights. He literally gets up all night at least once an hour. This I think is taking the biggest toll on his body. He seems to be tolerating the chemo, but, the lack of sleep and appetite do have me concerned.
God bless you and may this week be a good one for you and yours...Peace, Kathy
Saturday, October 26, 2002 at 08:38 PM (CDT)
Hello friends...I am writing from the confines of St. Mary's...not too bad though, the plan is to head home around 1a.m...we got a very late start on the day...and it has thrown the entire schedule of meds off for the day. Robert could not deal with the thought of having to come in here today...no way, shape or form...I felt so bad for him, and gave up the whole "good cop, bad cop" routine around 11:00a.m. and just resigned myself to a LONG night on the floor at the hospital. What are you gonna do...he feels like his whole life is out of control...can you blame him.
He needed platelets today. They were down to 15,000. His hemoglobin was borderline, 8.5; so I went ahead and asked Dr. Gowda to transfuse red blood as well. I could see that Robert needed it, and was tired. I am hoping that boost helps him to feel a little better for his "wish day!" He has not been feeling to great today. The bone marrow aspirate caught up with him and he had major back pain all morning, hence his lack of desire to get out of bed...it seems better. I look at him and I can see this taking its toll on him. He is tired and feeling the full effects of chemo. He has those dark circles under his eyes, and his legs are so skinny. I imagine some of what I see is due to a lack of sleep from all the bladder problems...that is getting better, at least there is no more pain...just a "pain" having to go so frequently.
We have all been so spoiled with the way that Robert has always had this uncanny ability to endure such massive chemos and such. He is so strong and resilient. This time it is so different. Just as suspected. Can you imagine after what his body just endured only 4 months ago...and now all of this. He is a very strong young man. The stuff he endures I dare say would "cripple" the strongest of men. He always impresses me with his ability to cope. He has been pretty quiet lately, and he definitely has been down right mad. This I respect is so normal and understandable. No more Mr. Nice guy...if you know what I mean. He has plenty of reason to be mad, and he tries so hard not be. I know he does not like to get that way. This evening when we tried the first time to give him the shot in the leg of chemo, he literally took a swing at me and a nurse...he knocked my glasses across the room...I almost wished he would have knocked me out cold...just so I would not have to hear him so upset and see him hurting so much...he looked at me with such fright and shock like he knew he was gonna be in big trouble...no way. If his platelets were not so low I would let him punch away at a punching bag or something to ease his frustration...he can't risk the bruising.
Tonight is much better. We managed to get his leg shot in, and he ate something and is just chilling. It has been a long day. Tomorrow is another day...I pray that he enjoys his time tomorrow. I cannot figure what is more important to him...spending time with his best friend (he is coming with us) and his cousins, or the shopping spree itself. He will have to be so careful. He will need to wear his mask and probably some gloves. He has no ANC to speak of. It is a risk taking him like this...let us pray earnestly this trip does not cost him more time in the hospital. It is all a trade off. He is willing to trade off for this...
So, Jeff and my brother spent the day working around the house. Painting and cleaning up the yard. I did what I always do, cleaned the house. The constant sand and dirt from all the traffic in the back needs constant attention. Of course, I spent much of the morning attending to Robert and his meds. He stayed in bed until it was almost 2pm...of course, another key part of the day in the life of the Charltons is answering the phone...even Robert finally said, does that thing ever stop ringing! It can get a bit obnoxious...especially when it is those darn solicitation calls...it is election time in WPB so every politician is taking a poll...I hate to say it guys, but you are calling the wrong house...we have no clue about anything right now! Blah, blah, blah...there are times I simply hang up right in the middle of the speech. Oh well, it is better than hanging up on a Mimi or someone...:)
I would love to keep writing, but I dare say, I am rambling at this point. Thank you for flagging the map. That thing is so cool. Thank you especially to our dear friend Steven for having the coolest Dad ever...Lyle, thanks for being so faithful in keeping the map-thing in check...Steven keep up the good work! Cameron, you too...you are doing such a great job!
Much love to all of you, and keep the peace and faith and hope and love...Kathy
Friday, October 25, 2002 at 09:58 PM (CDT)
Hello friends...I know many of you have been faithfully waiting and checking for this posting to find out about Robert's latest bone marrow test.
It was not until this evening that we received word from Dr. Gowda about it...Robert is still showing alot of disease in his marrow. A significant amount...56%. Remember, it was at 95% when he was officially considered relapsed...Needless to say, this was a bit discouraging to Jeff and I to receive this news. It has taken me a couple of hours to process it...I am thankful to God for a phone call from a dear friend this evening that brought me right back from the "edge" and reminded me that we still must fight...
Robert is feeling better. I am so grateful for this. His bladder discomfort is easing up. He is not suffering from back pain so much even though he had the bone marrow aspirate yesterday. We are hoping and trusting that he will continue to heal and feel better to continue to enjoy being home. It is always such a wonderful thing to hear your child tell you he is hungry and request specific foods...we are having to encourage him to eat, and he is obliging. He has lost some weight, about 15pounds to be exact. This is something that he has not experienced before. The schedule with the meds at home is going smoothly and we are so grateful to be able to administer these to him at home. What a true blessing! He spent much of today sleeping--he says he is catching up from the loss of sleep from all the getting up to use the bathroom...I am glad he is comfortable enough to sleep. Amazingly enough is that all this chemo is not making him vomit. This too is a tremendous blessing...
Apparently, that miracle we are praying and waiting for--Robert to be disease free--is not going to come easily. Dr. Gowda has held back a bit with the really tough chemos to see how Robert responded with what he has gotten so far...so here we go, the big dogs are coming out! Robert is rather nutropenic(very low counts and immune defenses) so the added chemo will continue to keep his counts way down. He is isolated and not minding it at all to have to be confined to the house. We are being very cautious and he is watching after himself as well. Sunday will be tough though...he is going to do his "Wish" through the Children's Wish Foundation. They were unable to get permission to have Robert "shop" after hours, so we will have to watch him very closely when we are in the store. Please PRAY for extra protection for him on that day...we would hate for the granting of his "wish" to bring on a cold or such...as you can imagine he is very excited about this, and is looking forward to sharing it with his family and best friend!
The youngest Charlton's are feeling much better and the antibiotics are kicking the strep's butt before it got a chance to make either of them very sick. So far, Jessica shows no signs of the dreaded strep.
So, the battle continues and is in full swing...Praise God that Robert is doing as well as he is...Praise God that we are here together...we are so blessed in this to be able to be together and provide Robert with "good medicine" by being home. I guess it is time to "kick it up a notch..." and pray even harder for that miracle and remission for our boy!
"We know you hear us dear Lord...Robert needs you and he needs your touch of healing and strength and all that you can bring to get him through this...I pray." We look forward to a wonderful weekend together and are so thankful that Robert gets such a blessing as getting to have a "wish" granted on Sunday...this my dear friends is a good thing...
We are so grateful that you came by to check in on Robert...you faithful friends are lifting us up and encouraging us in so many ways. Much love and peace to you, Kathy and Jeff
Thursday, October 24, 2002 at 09:53 PM (CDT)
Hello friends...I am so pleased to say that Robert is home sleeping soundly.
Today was busy, but good. After getting the children off to school; actually, if you can believe it the only Charlton in school was Jessica...how's that for a change. After dropping her off at school Robert and I headed up to the hospital. He was in some pain from his back (not sure what is causing this...)so he got into bed and waited for some pain meds...
He was wondefully suprised to see his good friend Mary today. She was in for a spinal like Robert...she came in and visited for a while with us. Robert did not even kick her out of the room like he does most guests when he is tired and not feeling well. They have gone through much of their treatment together neck and neck...thankfully, Mary has not had any setbacks and is doing so well!!! Robert and her always try to out "count" each other before they are put under the anethesia. I can't remember the record of the highest number they have gotten to. I really enjoyed seeing her, and I know Robert did as well...thanks Mary for brightening up our day!
Robert's spinal and procedures went well. He was back home by this afternoon. We did not get any results from the bone marrow yet...I am sure that we will know something in the morning. I will be sure and let you know ASAP...Robert is feeling fine and not having much pain from the procedure. He received 3 different chemo drugs in his spinal fluid, and received a shot in his thigh from a drug known as L-aspariginase. He also got a dose of vincristine. He is getting full, no holding back chemo...sometimes I forget this if you can believe it, because he is weathering all of this so well.
This afternoon I took our other daughter Christina to the doctor's office. She was feverish yesterday, and in lieu of the fact that Matthew tested positive for Strep, I figured no time to waste with her...she has Strep also! Thank goodness Robert has been on a very full-coverage antibiotic for the past 14 days (Merepenum) and should be fine...we are keeping the kids away from them. I am just so grateful for the "rapid strep test" that they can do now. Neither of the children had the typical signs that go along with strep. We are praying that Jeff and I do not contract their germs!!! So far, Jessica is fine...
Well, dear friends, it is getting a bit late, and I am very sleepy...thank you so much for checking in on Robert...we are grateful that Robert came through his procedures so well, and that we are all here together for another day.
Take good care, and peace to you all...Kathy
Wednesday, October 23, 2002 at 07:31 PM (CDT)
Hello dear friends...well, the roller coaster has paused for the moment! Robert is back home--Praise God. He came home just in time to watch DragonBall Z...his best friend Ryan came over to watch it with him.
What ended up happening yesterday and caused the trip to the PICU was because of his heart rate. It basically shot through the roof. They did an EKG, and an Echocardiagram all yesterday. The cardiologist put him on a medicine that has leveled off both his heart rate, and his blood pressure...yes, indeed, Robert is swallowing pills. They kept him in the PICU so he could be hooked up to a monitor all night and so that-God forbid- his heart went nuts again, they were ready. The tests done on his heart showed no abnormalities, and all looked fine. The cardiologist was satisfied and said he could come home. We are waiting right now for the home health nurse to arrive to hook him up to his nightly meds...we are encouraged that we can do these meds at home. They are the same meds that Robert got in the medicine room at St. Jude. We are hoping and praying that all smooths out a bit so that Robert can enjoy a bit of a normal schedule.
Please pray for the other kids in the house...Matthew is on an antibiotic for strep (with no fever!) and now Christina is a bit feverish and in isolation. Thank the Lord our home is a split bedroom plan so that we can keep Robert away from the rest of the crew when necessary. His room looks wonderful and he actually has a toilet! HA! I could not believe when I heard the plumber flush it earlier today...I went running in there to savor the moment...we officially have 3 bathroooms...pretty nice! His room is so nice, and I know he will enjoy it so much. The windows, the color the size, all of it is amazing...it is pretty special to be here and watch it come together in its final stages...our yard is a disaster from all the digging for the sewer lines and such, thank goodness the dog is at Mimi's!
It almost seems normal around here. Jessica and Robert are sitting in the family room watching a movie. I know she is so happy to have her brother here. Matthew and Christina were discussing when exactly Robert would not have leukemia anymore. Matthew has said that he knows for sure that Robert will not have leukemia for Christmas! Sounds good to me...those two little children are so determined that their brother will be well--the faith of a child speaks volumes to me.
I spent the day cleaning and re-arranging the house. Everytime I sweep up a pile of dirt another worker comes in the house and brings more...they cannot help it the yard is simply a dirt pile. I do not mind. They are very good about trying to keep it to a minimum...all the people that have come here to work have been extra considerate. Even today I heard one of the guys on his radio telling a co-worker that he was at the "boy who is sick's house"...each of them has joined in the mission. They may be getting paid to work, but they are not getting paid to be considerate and thoughtful...I appreciate it so much.
I feel like there is something I am forgetting to mention...Robert had another MRI today. We will overnite the films to St. Jude again and we are hoping that there is an improvement in the areas of the brain from last week.
Tomorrow will be very telling for Robert. He is going to have a bone marrow aspiration. He will also get more chemo in his spinal fluid and another shot in the leg. All this will be done while he is under general anethesia. Please pray that if the spinal is what caused the seizure the last time that it would not happen again. Of course, you all know what we are hoping for when they look at the marrow--it needs to be greatly improved from the last time...there needs to be no signs of disease. We are also planning on sending a sample of marrow for analysis to St. Jude.
All things being what they are, I am so grateful for today. Today and tonight we are together as a family. My children are all under one roof...they are acting like kids, and are happy. Thank you for checking in, and being so faithful to our family.
Much love and peace to you, Kathy
P.S. Hey Jordan, Can you believe the first thing Robert said to me when he walked into the house...he said "Hey Mom, you owe me some DBZ cards!"(that is what he gets for swallowing pills) So, guess what he got in the mail today--your envelope--THANKS! Excellent timing!!! ;)
Tuesday, October 22, 2002 at 10:38 PM (CDT)
Hi there...I am glad to report that Robert is fine. It has been a very long day, and this is my third attempt at updating this page...I will be back in the morning with the details of this day.
It has been a very full, crazy day. Robert is in the PICU tonight, and he is fine. I will update right after I get the children off to school...sorry for the briefness, and lack of info...Peace, Kathy
Monday, October 21, 2002 at 08:23 PM (CDT)
Guess what...my boy-my sweet Robert is on his way home! What a wonderful thought...we shall all be home together. I know he is so happy to be coming home...
I have cleaned and dusted until I cannot clean anymore...Robert will set up "shop" in our room for the time being as some of the finishing touches to his room are completed. It looks amazing...He will be so proud of his room and beyond thrilled to call it is own...
Briefly, but ever so important...they did an ultrasound on Robert's kidneys and bladder today. They looked fine. This was something Dr. Gowda wanted to be certain of before he discharged Robert. I know that he is very tired, not getting much sleep at night--all the bathroom trips. So I can imagine he will sleep ever so soundly tonight. The children are so happy to have him coming home...We are so glad to know that his kidneys and bladder look good.
Our schedule will be sort of like our trips to the medicine room at St. Jude. That is until the home health nurses are all lined up and the meds arrive. Robert should not need any platelets tomorrow as he is holding onto them a bit better these days.
Well, I hear the roar of Jeff's diesel truck...they are home! Please no visitors without calling...Praise GOD!
Be back tomorrow with more news...Kathy
Monday, October 21, 2002 at 08:23 PM (CDT)
Guess what...my boy-my sweet Robert is on his way home! What a wonderful thought...we shall all be home together. I know he is so happy to be coming home...
I have cleaned and dusted until I cannot clean anymore...Robert will set up "shop" in our room for the time being as some of the finishing touches to his room are completed. It looks amazing...He will be so proud of his room and beyond thrilled to call it is own...
Briefly, but ever so important...they did an ultrasound on Robert's kidneys and bladder today. They looked fine. This was something Dr. Gowda wanted to be certain of before he discharged Robert. I know that he is very tired, not getting much sleep at night--all the bathroom trips. So I can imagine he will sleep ever so soundly tonight. The children are so happy to have him coming home...We are so glad to know that his kidneys and bladder look good.
Our schedule will be sort of like our trips to the medicine room at St. Jude. That is until the home health nurses are all lined up and the meds arrive. Robert should not need any platelets tomorrow as he is holding onto them a bit better these days.
Well, I hear the roar of Jeff's diesel truck...they are home! Please no visitors without calling...Praise GOD!
Be back tomorrow with more news...Kathy
Sunday, October 20, 2002 at 09:49 PM (CDT)
Hello there...another day under out belt. I am always so grateful when I put my head on my pillow at night, and know that all of my dear loved ones have been blessed with another day together. No small feat I might add.
Robert is feeling a bit better. He is taking his meds and looking forward to heading home very soon. He and Jeff spent the day together, while I attempted to create some semblance of order in our house...we had some wonderful visitors this morning--and the phone does not stop ringing with people checking in on us and all that is going on...I am always so grateful for those who just follow their need to come by and/or call to check on us...as well as those of you who faithfully sign in after checking in on Robert. I was very busy all day with working and cleaning. I am about half through. Robert ordered me not to stay up cleaning until "2 a.m."; he said I have all day tomorrow and get some rest. What a sweetie!
The two youngest Charlton's went to a Disney on Ice show today. Mimi Bunny took them. We were given tickets from Dr. Gowda's office, and I am so glad they were able to go. They had a wonderful time...not to mention I really enjoyed being home on a Sunday afternoon cleaning my house, listening to the Dolphins football game...it almost seemed normal! Jeff watched the game at the Quantum House while Robert napped in our room there.
The other big news here is that Jessica is going back to school in the morning. It is the start of a new nine weeks. Her ESE counselor got together with all of her teachers and the consensus is that they really want her back and they will do whatever it takes to help her with the transition and such. Even the school principal sent word through Jessica's best friend's Mom...please come back. She is a bit apprehensive, and concerned about the attention she might get...she is tough and I know she can brave this and tolerate it well. I know she really needs the support of her friends right now, and I am so proud that she is taking this on...it is not as easy as it may sound.
Jeff was speaking with Dr. Gowda this morning in regards to Robert's lab work and such...Dr. Gowda told Jeff that he was very pleased with how Robert was doing...he said that he felt Robert was doing better than he ever expected. He then told Jeff, "you have a great boy there...very strong." It is always good to hear these sorts of words of encouragement...sometimes we miss exactly how precarious of a situation that Robert is in because of his strength and courage. I told Robert yesterday that I was so proud of him--proud of everything that he is and the way he handles so much...he smiled at me and said "I already knew that Mom." He blessed my heart with that.
I pray and trust that everyday of your life you take at least a moment to be blessed, let someone bless you, and you in turn give blessings to those around you. As we reach out and love and encourage one another we win so many battles that may not even be seen by our human eyes...we can win battles for the very souls of people in our endeavoring to love one another. In your endeavor to love our family, not only our we blessed, but, I believe the battle of the unseen war raging against a boy is being won...every moment he is with us is a victory, it all is and may God be glorified in this.
Much love, and Peace to you all...have a great week wherever you are and smile and laugh--it is good medicine!
Kathy
Sunday, October 20, 2002 at 07:37 AM (CDT)
Hello dear friends...what a "bummer" this site had problems last night and we could not update...I hope this catches those going off to church this morning and hoping for a "latest" update!
Robert is feeling somewhat better. Saturday he was able to get unhooked from his IV's for a couple hours and he and I went for a walk and he took a nap at the lovely Quantum House next door. It is a newer improved version of a Ronald House, very lovely. He is still having the problem with the bladder-not as bad as before-but a bit uncomfortable. His tummy bothered him some as well, and he did not eat much. But, his spirits were pretty good and he was happy. He is looking forward to getting out of there...he has been inpatient over a week. His body seems to have adjusted to the steriods pretty well...he is not so anxious and biting his nails, and "wigging" out in general. This I am so grateful for. This whole situation is so scary, that if is state of mind was not one that could handle it then things would definitely be insurmountable. So pray that he continues to have peace and is calm about what is going on. Robert actually took some pills by mouth for me yesterday. Believe me, it is going in the history books of dealing with cancer kids the way this boy takes his meds...here and at St. Jude a child has not shown such an aversion to this as severe as Robert's. But, he is doing it, and we are doing "whatever" is necessary to make sure he does. Robert actually did not get platelets yesterday...they were at 31,000. His hemoglobin has been pretty good all week. Staying around 11.0; his kidney function is doing good; that is so important because the med he gets for the HHV6 virus (the probable cause of the seizure) is very toxic to the kidneys. Needless to say, this boy is amazing! I am continually so amazed at how he tolerates so much. I mean after all he has just been through he is on a full relapse protocol of chemos to get him back into remission! That is major serious stuff!
Jeff and I keep wondering if Robert was so tired and feeling this cruddy the last time...and then in my mind, I realize this is so different. This sweet boy still basically has no working immune system...and just came through an entire protocol of chemo and radiation for his transplant...and he is so brave and ready to do it all again if it means he gets to live...I cannot express the bravery and strength I see in him. I wish you all could see him with his favorite blanky...yes, it is one from when he was a baby. He has donned it the "lucky" blanket. It is full of holes, and has been well loved...everyday the doctor asks to borrow it...he is so touched to see Robert doing well, and responding.
I actually have "moments" (truly I have quite a few "moments" these days...) where I feel like we are just going through with a "normal" part of treatment for Robert-like he will weather this with no problem. I fully expect him to get through all of this and his transplant and be a happy healthy boy...I must admit many times those "moment" are jerked back into reality with a call or a cry for help from Robert. I am still stunned at all of this and the magnitude of it. Next Wednesday they will check his marrow again...I keep thinking about how not only does Robert need to get into remission, he must stay in remission...he was in remission the first time for a year; the second time (with all the big guns-chemo, radiation-kicking butt) 7months...so how long will this beast stay away this time...we need as much time as possible to get him a better chance with transplant...Being home does allow for us to live like somewhat normal people...I have found that it is most difficult for me to cope when I have had little sleep.
I cannot express to you all enough how real God is to us...how we can tell He is right here working, loving and giving us strength. I can "feel" it....prayer and intercession is truly a very powerful thing...and I pray, for all the families who must face such harsh realities that come with this stuff....it is most terrible. I pray and intercede for the many children I watch who are so brave...thank you for checking in.
Robert's room is almost ready...I will be working on getting the dust and dirt out the door all day. Many worked so unbelievably hard all weekend...the tiled has been put in, and it looks so lovely--they even managed to put a fish border of tile in his bathroom. Jeff and my brother Mike worked hard to get it all painted...friends, and of course a Mimi or two are on board to help take care of the kids (can't forget the other three) and feed people....we are truly a blessed family--what else can I say.
Much love, Kathy
**TAKE A MOMENT AND VISIT THE MAP-LINK AT THE BOTTOM TO LET US KNOW WHERE YOU ARE IN THE WORLD***
Friday, October 18, 2002 at 09:42 PM (CDT)
Good evening, or rather Good Morning! Man things are cooking at home! That is not a direct reference to our lack of air conditioning either! Bright and early at 6:30 am I could hear these men talking in the back room of the house...so, I figured it was time to get up! It is so strange to hear them back there. There was a thick piece of plastic up, but it is like they are right in the house...the children had the day off today from school and I thought we would get to sleep in a bit...we all got up and man were they cooking out back on Robert's room. They are there right now painting and getting that stuff finished because they are coming to tile in the morning! Can you believe it...it is so amazing. I cannot wait to put my house back in order and unpack our suitcases!
Most important is that Robert is feeling better today. His belly is not so miserable and he is eating again. This boy is so tough! Robert spent most of the day resting and sleeping. The infamous Dr. Bufo came in to check on him and poke around his belly and kidneys a bit to make sure they were not too tender. This doctor is so gentle and considerate. We are so thankful it is so obvious that he is going out of his way to make sure Robert is well--he has a soft spot for this boy--who can blame him! Every doctor and nurse that has helped Robert this past week-be it here or at St. Jude- has treated him with such care. It has become so many peoples mission to help Robert fight. He has been so sweet and is really ready to get out of here. But, he is not complaining...unfortunately, they did not get things ordered in time for the home health company to get staffed for the weekend to get Robert out of here...it is all for the best. This way he will get discharged directly to home! He cannot wait.
I keep drilling him about what he wants in his room. What color, what kind of pictures, if he wants fish...you know the usual boy stuff. His reply is, I do not care, I just can't wait to be in my OWN room! What an amazing blessing this whole thing with Robert's room has been. I do not think there has ever been such a "sacred" construction site ever! Every man who has worked there, has been there knowing it was a special project, for a special kid! I promise to have photos of our handsome boy in his new room for you soon!
It is getting late dear friends, and thank you for checking in and being so faithful to pray and sign in the guestbook! Your words encourage and strenghten us all! Peace to you, Kathy
Thursday, October 17, 2002 at 10:40 PM (CDT)
Hello friends. Another day...more good things for Robert. I hate to say it, but, I know at this moment Robert might disagree that today was a good day--poor guy is really feeling lousy!
They did an ultra sound on Robert's abdomen, specifically his gall bladder early this morning. The test showed that his gall bladder is fine. Thank goodness...one less thing to worry about. Dr. Bufo came in and was pleased. They are still being very cautious about the pain in his stomach. It could simply be a result of all the "stuff" that has been pumped into is body over the past week. Between chemo and 6 antibiotics and such...can you imagine. He is holding up well. Not eating much today, but not losing ground because he is vomitting. He slept most of the day. That is a good thing. I actually did not get a look at lab work today, however, his platelets dropped dramatically...down to 14,000. Of course, this caused the powers that be to speculate that the high count of yesterdays platelets was a lab error in the reading! What are you gonna do...as one friend wrote us today making reference to the "roller coaster ride" of having a child with cancer, we recognize there is not much we can do, except HANG ON! The good news is the boy is getting rid of fluid like crazy. That is so good for his body, flushing out all the stuff that is going in. We are so grateful for that. We were sitting out at a table outside of his room with the doctors, and all of a sudden the girls (his sister and guest) came out of the room, we knew he had to go to the bathroom. He kicks everyone out except Jeff or I and then I of course have to look the other way...so proud my boy still has his modesty. Just another one of his redeeming qualities he inherited from me!
Jeff spoke this morning with the infamous Dr. Horwitz (my personal favorite doctor from you know where). He had received the films from the MRI, and all the lab work we faxed up. He took them to their nuero guy and both examined them. He felt pretty confident the matter on the brain could be from the herpes virus Robert tested positive for some time back. This could have caused the seizure as well. He gave very specific instruction for treatment and was encouraged with how Robert is responding to his re-induction. It is so good to know Dr. Horwitz is so available and ready to help in any way to get Robert better. Between he and Dr. Gowda I know Robert is in very good hands. Both are doctors who respect medicine in a very unique way and recognize that there are not always the definite answers you may expect to get, but will do their very best to get their patients through. Basically, both really know their stuff and are not the least bit pious. This is a very redeeming quality. A cardiologist came by this afternoon to consult about Robert's blood pressure. He felt that it could easily be a result of the steroids and feels it should be easily managed.
So in summary--so far, so good...Amen, RIGHT! They are working hard to discharge Robert maybe tomorrow. They are holding a place for us at the Quantum House next to the hospital. It is a beautiful home set up for parents with sick children...we are grateful for this. The house is without air conditioning today and tomorrow. The final touches are being done to Robert's room. Talk about a miracle and a blessing! Those men absolutely refused to give up when they heard Robert's latest prognosis...if anything they put their FAITH where there "mouths are"-so to speak- and kicked it up a notch! They set their sights on raising the roof for our boy, and by golly, they have succeeded! Praise God for men of FAITH! May our sweet Robert grow to be able to work on a project such as this when he is a man...and what a testimony that WILL be.
Well dear friends, it is hot in here tonight...I am definitely a girl who likes her a.c...it is time to retire for the night. Tomorrow we pray will be another day that gets Robert closer to coming home.
God bless you with peace, joy, and love...Kathy
Wednesday, October 16, 2002 at 06:26 PM (CDT)
Okay Friends...Stop what you are doing right now, and get up and DANCE! Did you hear me, Dance and cheer! Robert is doing amazing! He is so ready to get out of here...and he continues to show no apparent signs of infections or other side effects from the seizure...but the most amazing thing is this...his bone marrow is working!
Today Robert's platelet count went up...it is up to 90,000! This is a miracle in itself. His wbc count went up to .6 from .4 and there is no sign of blasts anywhere in the new blood. The fact that the platelets went up is also indicative of no blasts. His hemoglobin went up as well, to 11.2. When Jeff told Dr. Horwitz at St. Jude this news today he was thrilled. He explained to Jeff that there had to have been a "few" undetectable blasts in his marrow all along and that is why his marrow never kicked in. The fact that he is making platelets is wonderful. Praise God...did I hear and AMEN! Dr. Horwitz instructed us to have the doctor here to follow his protocol the way he is, and save the big guns of chemo that Robert has not seen yet for later if needed! Remember he must stay in remission until at least Jan. 10th to attempt a second transplant...the longer they can maintain remission the better the chances are for his second transplant.
Robert continues to crack us all up! He is pretty miserable in his stomach, and not so cranky today. As far as I am concerned, this boy has earned the right to be cranky. His stomach has hurt enough to merit some morphine for the pain...remember this kid went through transplant without a morpine pump for pain. They have had every specialist in to look at every aspect of what is going on with our boy. Right now a doctor is in here to figure out why his stomach is so sore...we have sent all his MRI films and lab work to St. Jude...can you believe this, the doctor in here right now was at St. Jude for sometime. He is a trauma surgeon and pediatric surgeon...we are so grateful that they are taking such good care of Robert. God is so faithful to provide all that He needs. He is concerned about the pain he is experiencing and his bladder wall is a little thick. If the pain persists and does not improve they may have to do a scope thing to check it out. He has ordered an ultra sound for in the morning. We are praying that it is "nothing" and some sort of side effect from ALL the meds. A chemo he gets called Aspariginase can cause bladder problems. So they are checking it out to make sure. Dr. Bufo will be back tomorrow to double check everything.
We are hoping to get Robert out of here for a few days. He received word today that they have "granted" his wish...he is following the lead of a couple of his older buddies, he opted for the shopping spree. One of his friends had a shopping spree at a music shop, the other was at a skateboard shop. Thanks guys for the idea for Robert to make his wish...he is so excited! Oh big surprise, he is going on a shopping spree at the Bass Pro Fishing Shop! Very cool...Uncle Mike is going to give him some pointers on what he needs to build the optimum fishing supply! I guess we better clean out the garage.
The work on his new room is amazing. It should be ready by early next week. How wonderful is this?! He is excited about it...truly excited. We have been blessed to have nurse Karen with Robert these past couple of days. It has really helped him to cope and get into the "groove" of things.
Jeff went to church tonight with his good friend Scott. The young Charlton kids have been going to church and choir with Mimi Jane on Wednesdays, and loving it. Jessica went to the youth group meeting at church with Dad...it is all good. Blessed beyond measure, and all good.
We are blessed, even in the midst of such complete chaos. There is order to our lives, God creates order...and He gives peace. For this we are so grateful.
Thank you for checkig in and keeping Robert in your prayers...and keeping our entire family in your prayers. Now we watch and wait for final word from St. Jude regarding the MRI films, and for the ultrasound to tell us about the stomach pain...
We love you, and peace and grace to you all. Kathy
Wednesday, October 16, 2002 at 06:26 PM (CDT)
Okay Friends...Stop what you are doing right now, and get up and DANCE! Did you hear me, Dance and cheer! Robert is doing amazing! He is so ready to get out of here...and he continues to show no apparent signs of infections or other side effects from the seizure...but the most amazing thing is this...his bone marrow is working!
Today Robert's platelet count went up...it is up to 90,000! This is a miracle in itself. His wbc count went up to .6 from .4 and there is no sign of blasts anywhere in the new blood. The fact that the platelets went up is also indicative of no blasts. His hemoglobin went up as well, to 11.2. When Jeff told Dr. Horwitz at St. Jude this news today he was thrilled. He explained to Jeff that there had to have been a "few" undetectable blasts in his marrow all along and that is why his marrow never kicked in. The fact that he is making platelets is wonderful. Praise God...did I hear and AMEN! Dr. Horwitz instructed us to have the doctor here to follow his protocol the way he is, and save the big guns of chemo that Robert has not seen yet for later if needed! Remember he must stay in remission until at least Jan. 10th to attempt a second transplant...the longer they can maintain remission the better the chances are for his second transplant.
Robert continues to crack us all up! He is pretty miserable in his stomach, and not so cranky today. As far as I am concerned, this boy has earned the right to be cranky. His stomach has hurt enough to merit some morphine for the pain...remember this kid went through transplant without a morpine pump for pain. They have had every specialist in to look at every aspect of what is going on with our boy. Right now a doctor is in here to figure out why his stomach is so sore...we have sent all his MRI films and lab work to St. Jude...can you believe this, the doctor in here right now was at St. Jude for sometime. He is a trauma surgeon and pediatric surgeon...we are so grateful that they are taking such good care of Robert. God is so faithful to provide all that He needs. He is concerned about the pain he is experiencing and his bladder wall is a little thick. If the pain persists and does not improve they may have to do a scope thing to check it out. He has ordered an ultra sound for in the morning. We are praying that it is "nothing" and some sort of side effect from ALL the meds. A chemo he gets called Aspariginase can cause bladder problems. So they are checking it out to make sure. Dr. Bufo will be back tomorrow to double check everything.
We are hoping to get Robert out of here for a few days. He received word today that they have "granted" his wish...he is following the lead of a couple of his older buddies, he opted for the shopping spree. One of his friends had a shopping spree at a music shop, the other was at a skateboard shop. Thanks guys for the idea for Robert to make his wish...he is so excited! Oh big surprise, he is going on a shopping spree at the Bass Pro Fishing Shop! Very cool...Uncle Mike is going to give him some pointers on what he needs to build the optimum fishing supply! I guess we better clean out the garage.
The work on his new room is amazing. It should be ready by early next week. How wonderful is this?! He is excited about it...truly excited. We have been blessed to have nurse Karen with Robert these past couple of days. It has really helped him to cope and get into the "groove" of things.
Jeff went to church tonight with his good friend Scott. The young Charlton kids have been going to church and choir with Mimi Jane on Wednesdays, and loving it. Jessica went to the youth group meeting at church with Dad...it is all good. Blessed beyond measure, and all good.
We are blessed, even in the midst of such complete chaos. There is order to our lives, God creates order...and He gives peace. For this we are so grateful.
Thank you for checkig in and keeping Robert in your prayers...and keeping our entire family in your prayers. Now we watch and wait for final word from St. Jude regarding the MRI films, and for the ultrasound to tell us about the stomach pain...
We love you, and peace and grace to you all. Kathy
Tuesday, October 15, 2002 at 07:26 PM (CDT)
Dear dearest friends...I am so sorry and disappointed to see that the update to the page did not go through. I did one last evening as I faithfully do for all of you faithful friends...we were so busy today at the hospital that I did not even go online until this evening...
Take heart, it is all good news for Robert today. He of course is not so convinced, because he is still in the hospital! However, he has been moved down to the beloved "02 Peds" floor. He is still improving and first thing this morning he was up and out of his room and into his friends room to hang out. He is in good spirits pretty much all the time...he does get discouraged that he cannot simply pick up and leave!
The lab work all looks so amazingly good. The only thing that is not at the right level is his calcium. His kidneys, liver and such are all good. The results of the MRI were what I would call vague at best. They basically said that the "lesions" on his brain could be from infection, or from disease. The test for leukemia in his spinal fluid came back negative, meaning there is no evidence that it has gone into the brain...which means less need for added spinals. This is a good thing. It does not change the prognosis, it just alters treatment a bit. Less pain and toxicity for Robert in general. It could also be a good indicator that the "stuff" in his brain is not disease...they truly are just speculating as to what it is. They will do a repeat MRI next week to compare. We are overnighting all the films of the MRI to St. Jude to have their nuero people examine them. We are hoping that it is something that is there as a direct result from radiation. Nothing more...we shall see. The lab results are not back from the test that is for CMV...Robert has always tested negative for this, and they are waiting for one other culture to come back. They ran a slew of cultures for everything even West Nile virus...all the other tests are negative for things like mono and such...so this is all good.
Robert's wbc is down to .4; his hem is 10.6; and his platelet count is 32,000. He is feeling quite well, just having some shortness of breathe and gets easily tired. He could use some good physical therapy. That is something of a problem when you are in a PICU because you cannot exactly walk the halls for exercise. This will come back to him soon...he is up and around and that is good. Robert is looking forward to getting to do his Make A Wish soon. He is looking forward to coming home. They are working major overtime and his room is almost finished. This treatment course is a difficult one and Robert will need to muster up everything he has to stay strong. So far, so good...I am so proud of the way he is taking this on. They will check his bone marrow again on Day 15 to get a better picture of how the disease is responding...remember, he must stay in remission until the middle of January to be able to "attempt" transplant again...
Today was like Homecoming Day at St. Mary's. EVERYONE was there! Wow! It was a sight to behold. What an amazing thing to be with some of the most amazing people in the world all at once. It was such an experience of deja vu'...it touched my heart so much to see everyone. As I walked down the hall and saw Dr. Gowda and the nurses talking and laughing and such...I just could not believe we were here...there is such comfort in that...it almost makes me forget the reason we had to come home so soon. God has brought us to this place and is so faithful to provide for all of our needs. Each and every day He shows Himself to be so real and evident in our lives. Today I spent time talking with friends about so many aspects of the situation. Through it all, no matter what or how I may "feel" I constantly come back to the fact that I can say that I trust in God...as my sweet son said to God the other day..."I know that you did not mean for me to cursed with this cancer..." I can say Amen!
Thank you for checking in, and I pray that we who have come to rely so much on this cyber-link do not have to be "disconnected" again...God
Sunday, October 13, 2002 at 07:48 PM (CDT)
Dear friends...well, the sun has set on yet another day...I left the hospital this evening around 6:30 and Robert was sleeping and Jeff napping...I am trusting that since I have received no phone calls, all is well.
Robert is doing well today. He slept pretty good on and off last night. He was pretty "doped" up from the meds that they gave him to stop the seizure and calm him down. He had to get up frequently to use the bathroom, which is good because they are pumping him full of meds and fluids to keep his kidneys in check...so far so good. This is always a tricky thing, because too much fluid can cause his lungs to fill up and that would not be good. His x ray tis morning showed continued progress with his lungs. He also had and EEG done this morning. They have scheduled an MRI for in the morning. Pretty good for a Sunday! He had his bronchoscopy first thing at 8:30am; the doctor who did the procedure that he did not see any severe looking stuff in there...he felt like he got a good sample and should be able to get a clearer picture of exactly what Robert has. The consensus is that he probably does not have the pcp(pnuemosistis) because he does not have the typical symptoms. Also, we know he did not have a pulmonary hemmorage-again, not typical symptoms. They are really trying to isolate the type of infection so that they can get him off any unnecessary meds. After the bronch. the nuerologist came in and look at the EEG, CT scan and discussed everything with the PICU doctor. He examined Robert and asked me if I saw any particular change in him, like blurred vision, loss of balance and such. He was very nice, and will wait to make his best prognosis until seeing the MRI. This whole thing with the seizure could be a result of pressure. It may also turn out to be one of those things that is left unexplained. I was very pleased that all of this took place on a Sunday in such an efficient, professional manner...these doctors are working very hard and all want to see Robert well. They respect that this is a boy with a fight on his hands and they want to get him on is way.
Not long after the nuerologist examined Robert he became very emotional. They explained that this might happen after coming off the meds they had to give him to get calm and out from the seizure. He has no recollection of any of the events of last night...not even that Mimi Jane was there. They say that is good...he was very upset and begging us, ordering us to take him from there and get home! He flat out said "what is the point of being here if I cannot be at home?" He wanted to know what day it was and the date, and when Halloween was...I know he is hoping to be able to participate in that. Jeff explained to Robert the severity of the situation and had to explain further about the progression of his disease...he cried over and over, it is not fair...no it is not fair. Jeff encuraged him to pray, Robert wanted God to know how he felt and wanted to ask him to heal him....Robert prayed with such amazing frankness and love and trust...he prayed to God to heal him right now...he told the Lord " I know you did not mean for me to be cursed with this cancer", and I know that you have the "authority" to heal me...I want to be healed, NOW...he prayed that he wanted to be able to go home and be a normal kid again...he believes and trust that his Heavenly Father can do anything, this is so clear to me. He was so strong and brave as he spoke to the Lord, not timid, not begging--trusting and loving. He did calm down so much almost right away.
We can also see the effects of the steroids starting. He told me around 1pm to call Mimi Bunny to make him her mac n cheese, a certain way...she did it, and rushed it to the hospital. He ate 2 bowls...while he waited for that he sent me to the grocery store for turkey n cheese for sandwiches...and IBC rootbeer. Here we go...if you a dark blue van buzzing all over town in a hurry, it will be one of us feeding our boy...this is always such a good thing for us parents of cancer kids to get to do...it is crazy but, be gladly do it! He then was very tired and wanted to rest. Which he did...
This morning listening to him plead to go home, broke my heart, as it did Jeff's. It is so hard to do any of this, but much worse when your child is so sad, and feeling so helpless. I know that part of it was from the effects of the meds, and mostly just the stress of all of this...I am so grateful to see that he was much calmer and could cope as the day went on...
I came home for the night. A family friend had dropped over to help with laundry and cooked dinner and was feeding the kids...another neighbor had brought over a dessert...and then another dear friend dropped by just to hug on me and the kids...we get phone calls all day from people who know of Robert and are praying with him for that miracle...and you all read the guestbook, if you don't--well you are really missing something! God is here...He is everywhere...HE is taking good care of Robert's heart and soul.
The children all received a special "delivery" from Germany...our Marieke came for a visit, to help in any way that she could with the children or whatever...how sweet and almost normal it was to walk in my house and see her standing there...it reminded me of a time before all of this began. I thought on those times today...Well, I must sign off now, Matthew asked me if I would get a magazine and come and read it in my bed so he could curl up with me and go to sleep--"like we used to in the old days Mom, remember?" The heart of a child is more precious than anything...don't you think.
Good day to you all, thank you for checking in...Love, Kathy
PS--I to say it, but, I am too tired to proof my entries--forgive the typos, misspellings...I hope you can decipher without corrections...:)
Tuesday, October 15, 2002 at 06:57 PM (CDT)
Dear dearest friends...I am so sorry and disappointed to see that the update to the page did not go through. I did one last evening as I faithfully do for all of you faithful friends...we were so busy today at the hospital that I did not even go online until this evening...
Take heart, it is all good news for Robert today. He of course is not so convinced, because he is still in the hospital! However, he has been moved down to the beloved "02 Peds" floor. He is still improving and first thing this morning he was up and out of his room and into his friends room to hang out. He is in good spirits pretty much all the time...he does get discouraged that he cannot simply pick up and leave!
The lab work all looks so amazingly good. The only thing that is not at the right level is his calcium. His kidneys, liver and such are all good. The results of the MRI were what I would call vague at best. They basically said that the "lesions" on his brain could be from infection, or from disease. The test for leukemia in his spinal fluid came back negative, meaning there is no evidence that it has gone into the brain...which means less need for added spinals. This is a good thing. It does not change the prognosis, it just alters treatment a bit. Less pain and toxicity for Robert in general. It could also be a good indicator that the "stuff" in his brain is not disease...they truly are just speculating as to what it is. They will do a repeat MRI next week to compare. We are overnighting all the films of the MRI to St. Jude to have their nuero people examine them. We are hoping that it is something that is there as a direct result from radiation. Nothing more...we shall see. The lab results are not back from the test that is for CMV...Robert has always tested negative for this, and they are waiting for one other culture to come back. They ran a slew of cultures for everything even West Nile virus...all the other tests are negative for things like mono and such...so this is all good.
Robert's wbc is down to .4; his hem is 10.6; and his platelet count is 32,000. He is feeling quite well, just having some shortness of breathe and gets easily tired. He could use some good physical therapy. That is something of a problem when you are in a PICU because you cannot exactly walk the halls for exercise. This will come back to him soon...he is up and around and that is good. Robert is looking forward to getting to do his Make A Wish soon. He is looking forward to coming home. They are working major overtime and his room is almost finished. This treatment course is a difficult one and Robert will need to muster up everything he has to stay strong. So far, so good...I am so proud of the way he is taking this on. They will check his bone marrow again on Day 15 to get a better picture of how the disease is responding...remember, he must stay in remission until the middle of January to be able to "attempt" transplant again...
Today was like Homecoming Day at St. Mary's. EVERYONE was there! Wow! It was a sight to behold. What an amazing thing to be with some of the most amazing people in the world all at once. It was such an experience of deja vu'...it touched my heart so much to see everyone. As I walked down the hall and saw Dr. Gowda and the nurses talking and laughing and such...I just could not believe we were here...there is such comfort in that...it almost makes me forget the reason we had to come home so soon. God has brought us to this place and is so faithful to provide for all of our needs. Each and every day He shows Himself to be so real and evident in our lives. Today I spent time talking with friends about so many aspects of the situation. Through it all, no matter what or how I may "feel" I constantly come back to the fact that I can say that I trust in God...as my sweet son said to God the other day..."I know that you did not mean for me to cursed with this cancer..." I can say Amen!
Thank you for checking in, and I pray that we who have come to rely so much on this cyber-link do not have to be "disconnected" again...God bless you and keep you in peace. Kathy
Sunday, October 13, 2002 at 07:48 PM (CDT)
Dear friends...well, the sun has set on yet another day...I left the hospital this evening around 6:30 and Robert was sleeping and Jeff napping...I am trusting that since I have received no phone calls, all is well.
Robert is doing well today. He slept pretty good on and off last night. He was pretty "doped" up from the meds that they gave him to stop the seizure and calm him down. He had to get up frequently to use the bathroom, which is good because they are pumping him full of meds and fluids to keep his kidneys in check...so far so good. This is always a tricky thing, because too much fluid can cause his lungs to fill up and that would not be good. His x ray tis morning showed continued progress with his lungs. He also had and EEG done this morning. They have scheduled an MRI for in the morning. Pretty good for a Sunday! He had his bronchoscopy first thing at 8:30am; the doctor who did the procedure that he did not see any severe looking stuff in there...he felt like he got a good sample and should be able to get a clearer picture of exactly what Robert has. The consensus is that he probably does not have the pcp(pnuemosistis) because he does not have the typical symptoms. Also, we know he did not have a pulmonary hemmorage-again, not typical symptoms. They are really trying to isolate the type of infection so that they can get him off any unnecessary meds. After the bronch. the nuerologist came in and look at the EEG, CT scan and discussed everything with the PICU doctor. He examined Robert and asked me if I saw any particular change in him, like blurred vision, loss of balance and such. He was very nice, and will wait to make his best prognosis until seeing the MRI. This whole thing with the seizure could be a result of pressure. It may also turn out to be one of those things that is left unexplained. I was very pleased that all of this took place on a Sunday in such an efficient, professional manner...these doctors are working very hard and all want to see Robert well. They respect that this is a boy with a fight on his hands and they want to get him on is way.
Not long after the nuerologist examined Robert he became very emotional. They explained that this might happen after coming off the meds they had to give him to get calm and out from the seizure. He has no recollection of any of the events of last night...not even that Mimi Jane was there. They say that is good...he was very upset and begging us, ordering us to take him from there and get home! He flat out said "what is the point of being here if I cannot be at home?" He wanted to know what day it was and the date, and when Halloween was...I know he is hoping to be able to participate in that. Jeff explained to Robert the severity of the situation and had to explain further about the progression of his disease...he cried over and over, it is not fair...no it is not fair. Jeff encuraged him to pray, Robert wanted God to know how he felt and wanted to ask him to heal him....Robert prayed with such amazing frankness and love and trust...he prayed to God to heal him right now...he told the Lord " I know you did not mean for me to be cursed with this cancer", and I know that you have the "authority" to heal me...I want to be healed, NOW...he prayed that he wanted to be able to go home and be a normal kid again...he believes and trust that his Heavenly Father can do anything, this is so clear to me. He was so strong and brave as he spoke to the Lord, not timid, not begging--trusting and loving. He did calm down so much almost right away.
We can also see the effects of the steroids starting. He told me around 1pm to call Mimi Bunny to make him her mac n cheese, a certain way...she did it, and rushed it to the hospital. He ate 2 bowls...while he waited for that he sent me to the grocery store for turkey n cheese for sandwiches...and IBC rootbeer. Here we go...if you a dark blue van buzzing all over town in a hurry, it will be one of us feeding our boy...this is always such a good thing for us parents of cancer kids to get to do...it is crazy but, be gladly do it! He then was very tired and wanted to rest. Which he did...
This morning listening to him plead to go home, broke my heart, as it did Jeff's. It is so hard to do any of this, but much worse when your child is so sad, and feeling so helpless. I know that part of it was from the effects of the meds, and mostly just the stress of all of this...I am so grateful to see that he was much calmer and could cope as the day went on...
I came home for the night. A family friend had dropped over to help with laundry and cooked dinner and was feeding the kids...another neighbor had brought over a dessert...and then another dear friend dropped by just to hug on me and the kids...we get phone calls all day from people who know of Robert and are praying with him for that miracle...and you all read the guestbook, if you don't--well you are really missing something! God is here...He is everywhere...HE is taking good care of Robert's heart and soul.
The children all received a special "delivery" from Germany...our Marieke came for a visit, to help in any way that she could with the children or whatever...how sweet and almost normal it was to walk in my house and see her standing there...it reminded me of a time before all of this began. I thought on those times today...Well, I must sign off now, Matthew asked me if I would get a magazine and come and read it in my bed so he could curl up with me and go to sleep--"like we used to in the old days Mom, remember?" The heart of a child is more precious than anything...don't you think.
Good day to you all, thank you for checking in...Love, Kathy
PS--I to say it, but, I am too tired to proof my entries--forgive the typos, misspellings...I hope you can decipher without corrections...:)
Sunday, October 13, 2002 at 07:48 PM (CDT)
Dear friends...well, the sun has set on yet another day...I left the hospital this evening around 6:30 and Robert was sleeping and Jeff napping...I am trusting that since I have received no phone calls, all is well.
Robert is doing well today. He slept pretty good on and off last night. He was pretty "doped" up from the meds that they gave him to stop the seizure and calm him down. He had to get up frequently to use the bathroom, which is good because they are pumping him full of meds and fluids to keep his kidneys in check...so far so good. This is always a tricky thing, because too much fluid can cause his lungs to fill up and that would not be good. His x ray tis morning showed continued progress with his lungs. He also had and EEG done this morning. They have scheduled an MRI for in the morning. Pretty good for a Sunday! He had his bronchoscopy first thing at 8:30am; the doctor who did the procedure that he did not see any severe looking stuff in there...he felt like he got a good sample and should be able to get a clearer picture of exactly what Robert has. The consensus is that he probably does not have the pcp(pnuemosistis) because he does not have the typical symptoms. Also, we know he did not have a pulmonary hemmorage-again, not typical symptoms. They are really trying to isolate the type of infection so that they can get him off any unnecessary meds. After the bronch. the nuerologist came in and look at the EEG, CT scan and discussed everything with the PICU doctor. He examined Robert and asked me if I saw any particular change in him, like blurred vision, loss of balance and such. He was very nice, and will wait to make his best prognosis until seeing the MRI. This whole thing with the seizure could be a result of pressure. It may also turn out to be one of those things that is left unexplained. I was very pleased that all of this took place on a Sunday in such an efficient, professional manner...these doctors are working very hard and all want to see Robert well. They respect that this is a boy with a fight on his hands and they want to get him on is way.
Not long after the nuerologist examined Robert he became very emotional. They explained that this might happen after coming off the meds they had to give him to get calm and out from the seizure. He has no recollection of any of the events of last night...not even that Mimi Jane was there. They say that is good...he was very upset and begging us, ordering us to take him from there and get home! He flat out said "what is the point of being here if I cannot be at home?" He wanted to know what day it was and the date, and when Halloween was...I know he is hoping to be able to participate in that. Jeff explained to Robert the severity of the situation and had to explain further about the progression of his disease...he cried over and over, it is not fair...no it is not fair. Jeff encuraged him to pray, Robert wanted God to know how he felt and wanted to ask him to heal him....Robert prayed with such amazing frankness and love and trust...he prayed to God to heal him right now...he told the Lord " I know you did not mean for me to be cursed with this cancer", and I know that you have the "authority" to heal me...I want to be healed, NOW...he prayed that he wanted to be able to go home and be a normal kid again...he believes and trust that his Heavenly Father can do anything, this is so clear to me. He was so strong and brave as he spoke to the Lord, not timid, not begging--trusting and loving. He did calm down so much almost right away.
We can also see the effects of the steroids starting. He told me around 1pm to call Mimi Bunny to make him her mac n cheese, a certain way...she did it, and rushed it to the hospital. He ate 2 bowls...while he waited for that he sent me to the grocery store for turkey n cheese for sandwiches...and IBC rootbeer. Here we go...if you a dark blue van buzzing all over town in a hurry, it will be one of us feeding our boy...this is always such a good thing for us parents of cancer kids to get to do...it is crazy but, be gladly do it! He then was very tired and wanted to rest. Which he did...
This morning listening to him plead to go home, broke my heart, as it did Jeff's. It is so hard to do any of this, but much worse when your child is so sad, and feeling so helpless. I know that part of it was from the effects of the meds, and mostly just the stress of all of this...I am so grateful to see that he was much calmer and could cope as the day went on...
I came home for the night. A family friend had dropped over to help with laundry and cooked dinner and was feeding the kids...another neighbor had brought over a dessert...and then another dear friend dropped by just to hug on me and the kids...we get phone calls all day from people who know of Robert and are praying with him for that miracle...and you all read the guestbook, if you don't--well you are really missing something! God is here...He is everywhere...HE is taking good care of Robert's heart and soul.
The children all received a special "delivery" from Germany...our Marieke came for a visit, to help in any way that she could with the children or whatever...how sweet and almost normal it was to walk in my house and see her standing there...it reminded me of a time before all of this began. I thought on those times today...Well, I must sign off now, Matthew asked me if I would get a magazine and come and read it in my bed so he could curl up with me and go to sleep--"like we used to in the old days Mom, remember?" The heart of a child is more precious than anything...don't you think.
Good day to you all, thank you for checking in...Love, Kathy
PS--I to say it, but, I am too tired to proof my entries--forgive the typos, misspellings...I hope you can decipher without corrections...:)
Saturday, October 12, 2002 at 08:44 PM (CDT)
Hello dear friends,
I must admit these days I do not know where to start this page...so many thoughts run through my mind, and sometimes I wonder if you want all the details of the day...then I remember how you all wait and are keeping watch and praying for our precious boy.
This day has been so strange. Robert started out looking and feeling so much better. His lungs look much better on the x ray. Robert is not needing oxygen pretty much at all. They are so pleased with how he looks and were already discussing sending him down to the floor he is so accustomed to. We spoke with the infectious disease guy here today. He agrees that without proper diagnosis, even though his lungs look better, it is difficult to treat. They do not want to risk the side effects to Robert's kidneys and liver from too many meds. The consensus is that Robert will have a bronchoscopy in the morning--it is scheduled for 8:30 am. All agree from here to St. Jude that this needs to be done to properly diagnose and treat whatever is going on.
Robert was a little tired and not very agreeable about taking meds...no surprise there. His blood pressure has been a bit of a problem again. We have been working overtime to make sure he is getting all that he needs, and the staff here is working overtime BIG TIME. Robert was sleeping this afternoon, and his Mimi Jane came to sit with him so Jeff and I could go up to church. Our dear friends the Finestone's met us there...we did not get to stay. Mimi Jane called me and told us that Robert was having a seizure! We literally ran out of church and out to the car...we made it here in minutes. Robert's room was full of nurses working very hard to get a handle on things. Thank goodness the doctor was nearby, and he was right here. Robert responded well and calmed down. It was a full blown seizure...he had a CT scan a couple hours ago. The results initially showed no bleeding on the brain. Thank goodness. The preliminary reading from the radiologist showed that there is some type of lesions on the right and left lobes. Basically we have no idea at this point what it is. The doctor is waiting for the nuerologist to call him and advise him. They may not read the scans until the morning. Basically, the lesions could be from radiation treatment, they could be from disease. They could be something totally different. What happened tonight could be a result of the intrathecal chemo he got yesterday. Needless to say, we are in unchartered waters for Robert. I am so thankful to God that Dr. Pena has been on-call this weekend. His nurses have been great as well.
Basically, from here on out, it is impossible to know how any of this will effect Robert's health. His white blood cells have come down significantly! They are down to 1.8 today. It "appears" that the chemo is definitely knocking those cancer cells of the feet. Many of you who have been following Robert all along, know that he is an amazingly strong kid that "sails" through his treatments. Kids have been known to have seizures from spinals; kids have many complications all the time from chemo. I have known many kids who bleed out from the first dose of chemo and end up on a ventilator and in ICU...some of you reading this have either had kids who suffered horrendous side effects from chemo or a friends child has suffered...the truth is we have been so blessed in this area. Believe me we never took it for granted that Robert was always so strong. To look at this boy you would be amazed. One of his nurses from the oncology floor that treated him many a time had decided not to see him until he came back down there. She came up here right away when he seized to be with Grandma. She then accessed his port and it was a great comfort to see her in here when we came in. She commented on how she was waiting patiently to see him...and how good he looked.
This boy is a mystery. Everywhere he goes he stumps the docs!!! Personally, I am just waiting for the day when he is healed and has pulled off the ultimate STUMPING--leaving them speechless and praising God because they know they are looking at a miracle...Robert is a miracle, truly everyday is a miracle...and he is trying so hard.
Please Lord HEAR our prayer for Robert...we are coming together asking for your healing power to intercede and HEAL Robert!
Jessica is doing well. She has been a great source of strength and encouragement and it is evident that she is glad we are here. Christina is a bit confused, but beyond glad that we are here. She is scared. Matthew, he is so tender-hearted. He is a little sick right now, and our Dr. put him on an antibiotic. He has been asking alot of questions about my Dad who is in heaven and expressing how much he wished he got to know him. He talks alot about heaven...wondering if he could see me and talk with me if he were there.
This is such a very complicated and difficult situation. Every day, every moment I know that God is providing strength to get through. Rest when needed and chocolate when you cannot get rest! It is such a strange place to suddenly be a family consumed by a disease...you try so hard to not let it take over your life, but we have tried so hard to run from it, and it insists on chasing us down...it is after Robert...it cannot have him. His heart and his mind and his soul are so precious and brave.
Thank you for checking in, and praying TRUSTING for that miracle. Peace to you...Kathy
***I would like to say that even though the men working on Robert's room do not look for recognition...they have been working major overtime and very hard to complete that project...I know that every nail that is hammered is there way of "nailing" this disease...also, tomorrow Julie Bishop is running the Chicage Marathon for the Leukemia Foundation; she is running with Robert's name written on her legs and people will be cheering her along the way saying "RUN FOR ROBERT!" I want to cry everytime I think of this woman running every step for Robert for him to beat this...
MOVE THOSE MOUNTAINS FAITH!!!
Friday, October 11, 2002 at 10:28PM (EST)
Hello friends, what a very long exhausting day. Robert is stable, that is good. Unfortunately, we have no word as to what is in his lungs. He seems to go from feeling somewhat "fine" to being so exhausted he literally loses the ability to cope...this has always been the most difficult of things for Robert, he needs his sleep. He seems to labor less when he talks and breathes.
Lab work is pretty much not available in the PICU. We did know that Robert's hem was still in the 8.9 range after two transfusions; so he will get more this evening. I must say today was horrendous. If the doctor that was on call in the PICU would not have been the one there, I know I would have lost my mind, literally. Also, thank the Lord that Robert had a very competent, loving nurse today. I cannot stress enough about how very "unclean", and disgusting this unit is. Many of you remember all of Jeff and I's ways of reminding of washing hands, and cleanliness and such at St. Jude...we knew that place was a palace, but this PICU is literally filthy. Apparently, someone told someone to let the administration know that we were a bit unhappy (we actually have not complained to anyone-until now), because sure enough we got to meet and talk with the CEO and CNO of the hospital. Gee, Jeff and I must give the appearance of having nothing better to do with our time than to attempt to get big shots who seem to not really give a rip about patient care lectures! GIVE ME A BREAK! I just wish that somewhere someone who knows someone might just take up this cause...we simply do not have the energy. There was actually a cockroach in Robert's ICU room and a portable commode filled with urine from God knows when that Jeff finally had to clean out left in the room they moved Robert into. I was literally shaking from the frustration of explaining how things are done with certain meds and such...the nurses are not familiar with his lines, they do not alcohol things and I am sick to my stomach that this is the best patient care available here. This is not acceptable for any patient! Especially my son! So, we spent much of the day doing what we do best--be watch dogs. The lack of knowledge of when to give which meds with what is unbelievable, and dangerous.
Please pray that Robert gets out of the PICU soon. Please pray the we have the wisdom to know what to do when. Please pray for peace...I am so full of anxiety and pain that I cannot cope and literally have to remember to breathe. I have shared only part of this whole ordeal; there is much more...Robert does not want to leave...he wants to be close to home, and part of why Jeff and I made the decision to come home was so that if things did not go the way we expect, he would be home...
I am signing off now, many of you want to do things to help, thank you so much. I know it helps when you are able to have something to do...the Mimi's have been so busy everyday trying to keep our house safe, clean and tolerable knowing that we need it that way. Remember, it is under construction! Thank you so much you two! I will let you know as soon as I know anything about Robert's lungs...please PRAY they are better in the morning...Father in Heaven hear our prayer...this Mom is feeling it, and I am having a very difficult time. Thank you, Love and Peace-Kathy
P.S> Jeff is coping well...sorry I did not mention him. He is doing a great job and I am so grateful he is holding up, because I certainly am not!
Friday, October 11, 2002 at 08:05 AM (CDT)
***UPDATE: It is 1pm; Robert's lungs are not improved, they look to be about twice as full as yesterday. At 4pm they will take him down for his intrathecal procedure; administer methotrexate into the spinal fluid, check the spinal fluid for signs of disease; flush his port line,and give him a shot in the leg of Lasparinginase-a very commonly used effective drug. They are also going to stick a very small tube down into his lungs to get a sample for testing. They feel the risk involved in putting him under is much less than the risk of not knowing what is in his lungs...it could be: pcp(pnuemonia), fungus, or leukemia. Please pray for Robert, this procedure may cause him to be on a breathing tube for a time. ***
Don't you just love computers...this has been an invaluable tool for our family, however, at this moment I might just throw mine across the room! It lost my journal entry this morning...bummer.
Robert is doing fair. He had to be moved into the Pediatric Intensive Care Unit for monitoring. Yesterday's x ray showed some type of fluid in both lungs. They are "speculating" that it is blood due to his low platelets and the fact that he is spitting it up. It is not the usual old blood that he was vomitting up in the past...so, they are monitoring him closely, giving him lots of platelets, red blood and such. Of course this creates another very precarious problem in regards to the amount of fluid going in to the the body. Too much fluid too fast can be very bad for the lungs and create all sorts of other problems. Robert is mainly frustrated and very tired. To say that he "hates" the PICU is putting it lightly. It must be very hard for him to cope on such little sleep and the constant in and out of the place up there...I guess they are used to babies who sleep through everything, because they simply have no regard for privacy or rest. We have had to put a sign on his door about his lack of an immune system, we are constantly having to remind them to wash hands, wear gloves, use alcohol wipes on his lines...etc.! Makes for no such rest at all for any of us.
I came home last night to try to rest. I was so physically tired from the driving and such...I actually feel worse today...but, I have felt this fatigue before, and many of you parents out there know exactly that fatigue I speak of...Tylenol works wonders! Jeff is doing well. He seems to be holding up I am sure needs rest.
We are hoping that his lungs look better and are clearing up with the x ray this morning. They believe that giving him the platelets should stop the bleeding in the lungs. Sort of like when he had the bleeding from the bladder in the past. Dr. Gowda is planning on doing an intrathecal procedure this afternoon to administer chemo directly into the spinal fluid. Robert's wbc was at 18.0(very high!) on Tuesday, and they already have managed to get it down to 4.5 as of yesterday...who would have thought we would be praying for wbc to go down!
I must go, and thank you for checking in...I will be back later with more news of the situation...God bless you and thank you for being there...being on the computer and for the many people who are giving us the human touch we need to have right now...Peace to you all, Kathy and Jeff
Remember those "friends" who lowered the man through the roof and Jesus told the man "the faith of your friends has healed you..." in case you did not know, you are those "friends"...this page has become a sort of lifeline connecting all of us together...you all are so faithful to follow along and cry with us and pray and plead with us, the very least I can do is write to you everyday...I will be back later with more info. Kathy (pray this page updates!)
Wednesday, Oct. 9, 2002 2:53a.m. EST
Hello Friends...it is very late; almost 3a.m. EST, Jessica and I arrived home a few minutes ago. Jeff and Robert arrived early afternoon into the Ft.Lauderdale airport. Robert was delighted to have his best friend, Ryan, and his Mom, the infamous Mrs. Maloy there to pick him up.
I was so anxious the entire time as Jessica and I cruised along the highway. I wanted so much to see and hear everything that was going on as Robert made his way home for the first time in months. Jeff immediately called the doctor's office and the hospital floor to find out if everything was ready to get rolling with the treatment for Robert. We found out that they were "rocking and rolling" to get ready for Robert. The nurse that was going to care for Robert, one of his favorites :), hit the floor running when she arrived at work and got news that he was coming. Dr. Gowda had been on the phone with the docs from St. Jude and a very detailed protocol was designed and in place to begin treatment for Robert. Karen, the nurse, had the room they were holding for him, cleaned and cleaned again...they went more than the extra mile, recognizing that not only did they have a kid who relapsed on their hands, but one who just came out of a transplant, and is very compromissed. Robert's favorite night nurse, "Pocohontas", even agreed to come on from a night off when she heard about Robert. The floor was full, and they had their hands full to begin with...yet, they stood ready and waiting to fight this fight with Robert. Jeff and I are once again amazed at the tenacity, courage, wisdom and absolute love these nurses have for their kids...and Dr. Gowda, what an amazing heart this doctor has...his faith alone can help to heal so much.
The "Merry Maids" worked feverishly all night and day to get the house in order. Remember, this house has been under construction for Robert's room for a couple of months now. Thank goodness it is an area that is sealed off from the rest of the house, but, there is still an added bonus of lots of dirt. Mimi's, Aunts, cousins, close family friends...gathered here to work and pray and prepare for Robert to come home.
The doctor felt it was a good idea for Robert to have a few hours to be at home and see everything...they said he literally walked from room to room sitting in all sorts of places looking at everything...taking it all in, he was hungry, and thirsty, and so HAPPY to be here. He made lots of jokes and even a few wise remarks...He wanted to know who let is big sister take over his "old" room! Robert even got to spend a few minutes with his beloved Angel the dog...she was groomed and clean and so happy to see her boy! Jeff surprised the two younger children when he picked them up from school. They knew nothing of the plans at that time...they were thrilled to see their brother and to know we were all together again. Matthew's first question was "does this mean Robert is all better?" Jeff explained as best he could...it is hard for any of us to truly grasp. Robert is so happy.
He began his treatments tonight. By tomorrow afternoon he would have been given four different chemos to knock out as much luekemia as fast as they can...this is called induction. Robert is not scared at this point and ready to do what he can to get into remission.
I will write more later in the morning...Matthew just woke up and found me...how sweet to be home...Thank you for coming by to check on us...Peace to you, Kathy
"God is BEFORE Me,
He will be My Guide;
God is BEHIND Me,
No ill can Betide;
God is BESIDE Me,
To Comfort and Cheer;
God is AROUND Me,
So, why should I Fear?" Unknown
Peace to you all, Kathy and Jeff
Wednesday, Oct. 9, 2002 2:53a.m. EST
Hello Friends...it is very late; almost 3a.m. EST, Jessica and I arrived home a few minutes ago. Jeff and Robert arrived early afternoon into the Ft.Lauderdale airport. Robert was delighted to have his best friend, Ryan, and his Mom, the infamous Mrs. Maloy there to pick him up.
I was so anxious the entire time as Jessica and I cruised along the highway. I wanted so much to see and hear everything that was going on as Robert made his way home for the first time in months. Jeff immediately called the doctor's office and the hospital floor to find out if everything was ready to get rolling with the treatment for Robert. We found out that they were "rocking and rolling" to get ready for Robert. The nurse that was going to care for Robert, one of his favorites :), hit the floor running when she arrived at work and got news that he was coming. Dr. Gowda had been on the phone with the docs from St. Jude and a very detailed protocol was designed and in place to begin treatment for Robert. Karen, the nurse, had the room they were holding for him, cleaned and cleaned again...they went more than the extra mile, recognizing that not only did they have a kid who relapsed on their hands, but one who just came out of a transplant, and is very compromissed. Robert's favorite night nurse, "Pocohontas", even agreed to come on from a night off when she heard about Robert. The floor was full, and they had their hands full to begin with...yet, they stood ready and waiting to fight this fight with Robert. Jeff and I are once again amazed at the tenacity, courage, wisdom and absolute love these nurses have for their kids...and Dr. Gowda, what an amazing heart this doctor has...his faith alone can help to heal so much.
The "Merry Maids" worked feverishly all night and day to get the house in order. Remember, this house has been under construction for Robert's room for a couple of months now. Thank goodness it is an area that is sealed off from the rest of the house, but, there is still an added bonus of lots of dirt. Mimi's, Aunts, cousins, close family friends...gathered here to work and pray and prepare for Robert to come home.
The doctor felt it was a good idea for Robert to have a few hours to be at home and see everything...they said he literally walked from room to room sitting in all sorts of places looking at everything...taking it all in, he was hungry, and thirsty, and so HAPPY to be here. He made lots of jokes and even a few wise remarks...He wanted to know who let is big sister take over his "old" room! Robert even got to spend a few minutes with his beloved Angel the dog...she was groomed and clean and so happy to see her boy! Jeff surprised the two younger children when he picked them up from school. They knew nothing of the plans at that time...they were thrilled to see their brother and to know we were all together again. Matthew's first question was "does this mean Robert is all better?" Jeff explained as best he could...it is hard for any of us to truly grasp. Robert is so happy.
He began his treatments tonight. By tomorrow afternoon he would have been given four different chemos to knock out as much luekemia as fast as they can...this is called induction. Robert is not scared at this point and ready to do what he can to get into remission.
I will write more later in the morning...Matthew just woke up and found me...how sweet to be home...Thank you for coming by to check on us...Peace to you, Kathy
"God is BEFORE Me,
He will be My Guide;
God is BEHIND Me,
No ill can Betide;
God is BESIDE Me,
To Comfort and Cheer;
God is AROUND Me,
So, why should I Fear?" Unknown
Peace to you all, Kathy and Jeff
Saturday, October 05, 2002 at 01:22 AM (CDT)
Good day. Well, dear friends, I am writing to you from the confines of room 4017...yes, folks, you heard it here first...Robert has been admitted for fevers again. Earlier today his temp. went up while he was getting platelets and they decided not to admit him at that time...but, tonight right after we arrived back from the Med Room, I took his temp. and it was 102.2...so, here we are.
At the moment, it is of no concern to Robert where he is. The poor boy is so exhausted he just wants to sleep...the IV fluids he is having to take because of the med for his virus literally keep him up and going to the bathroom all night. After the day we had, he really needs some sleep. They are starting his antibiotics and he is trying very hard to sleep while the nurses (we have one that does not know how to whisper)try to set the pump.
The good part is that his wbc 2.1; platelets 11,000; his ANC was 1300. So, the continued rise in his wbc is good. We are hoping that trend continues to stay on the upswing.
This afternoon while the incident with fever and platelets was going on, the doctor on call in the clinic came to assess Robert. He is the doctor over the entire transplant program brought here from Germany. He is a very caring and very intelligent man. He made the decision to not admit Robert this afternoon. He also spoke with me a bit about his concern over Robert's lack of platelets, and the ability to make them. He must have said to me 3 times that by now--3 months out--his marrow should be making platelets. He also felt it necessary to express to me (rather make sure I understood) what this could be indicative of...he is very concerned about the recurrance of disease in Robert. I can barely even write that without literally cringing and wanting to barf! I cannot bare to think of it. This week has kept me on pins and needles, from having to remind nurses to wash their hands, to showing supervisors that they have mold growing in the sinks and telling them that my son does not need to lie in a bed next to an open garbage can all day! Then there was the sweet nurse who did not know what meds to run when or how...it has been busy. Oh, and get this...the nurse practioner even asked me if I thought he should stop the platelets from running today because of Robert's temp; because I thought the temp. was in correlation to the platetets. I could not believe he actually asked ME that question. I wanted to tell him that I wanted him to stop all of this MADNESS--ALL OF IT! Needless to say, I should be on the payroll around here--give me a break, do I think he should stop the platelets from running into my son...what kind of question is that--he was probably just being sarcastic to make a point or something. I was so grateful to see Dr. Handgrentingar come in to see Robert. What a concept an actual doctor examining my son instead of someone who wants my "opinion" on how to treat him. He felt that he looked good, and I think made the right decision. Who knows where these fevers are coming from.
Okay, here is the bottom line...they are hoping to get the results from the culture drawn LAST MONDAY on this Monday, or Tuesday, telling us whether this virus is responding or not. They are going to continue to watch his chemistry and lab work closely, and probably do another bone marrow aspirate by the end of next week. The next one is scheduled for DAY 100, but, they do not want to wait. This doctor is clearly concerned that this horrible, awful, GOD forsaken disease might be making its way back!!!! NO WAY! Tonight, they thought his spleen might be a little swollen...every little thing is SO BIG and it must be looked at that way. I met another new doctor tonight, the one who was on-call for the hospital to admit Robert...he of course informed as best he could, that there are too many "unknown" variables for him to even make a guess about Robert's condition...thanks for the info. I know this doctor must have thought me to be out of my mind as I smiled as he expressed his lack of ability to tell me anything. I felt like saying "Welcome to the Club!"
Anyway, it is VERY late...2a.m. my time. It is quiet here, for the moment, and my sweet, beautiful boy is sleeping. He is not crying or complaining or begging me to take him home, for the moment. He misses home--he told me so. We all do...it all does seem so far away, but we want to get there! This too shall pass...Peace to you all, and as always, thank you for checking in...Love, Kathy
Thursday, October 03, 2002 at 09:29 PM (CDT)
Hello there. Another day passes by...I think I have resolved myself to stop the counting of the days...Day 100 will come and go much like any other day...at the beginning of this plight, that day was the goal. It is generally set as the day that once a BMT patient gets there, certain milestones are considered to be less of a threat. In Robert's case, that day that is 17 days away...may not bring such milestones.
Robert is doing great. He is holding up and feeling well. As well as can be expected...he does tire easily and seems to not feel as good as he tries to convince me he feels. So, I watch him like a hawk. Of course...and the days are passing, with not much of a change. So far no dramatic changes...but they are not any worse, and that is a blessing indeed. This virus is a TOUGH one. It is serious business and as long as it is present his system will be suppressed and his marrow cannot flourish. They will not give him a boost of marrow because of the virus, it will only get infected...much like a computer! So, the Charlton family has another "vinegar" word to add to its list...the "V" word; lets see their is the "F" word-fungus; the "C" word-that which cannot be named, and now, the "V" word-virus! Yuck!
Today, Robert's counts were wbc:1.3 and holding; platelets, 20,000; hem:7.5; ANC 800. So we were in the Med Room all day getting medicine and blood. These days are getting long...the need to "chill" out is ever present. The hardest part of coming back in the night, besides dodging the druggies in the street, is getting up to come over. The evening staff is laid back and always ready with the medicine. We get in, and we get out. Nobody looks at us like what are you doing here...no one speculates about what med to start first...we just get in and out. Hopefully, to get home by 10:30. Such are the days of our lives...indeed a twisted soap opera. I definitely should be a script writer!
By the way, thank you for all the wonderful journal entries today...there were quite a few. It was a pleasant suprise. Sort of like getting a card in the mail. Robert does love that, and he received a terrific package today! He was so happy with that.
As you think of our family, I would like to share that there is someone very dear to my heart...closer than some can imagine, that is hurting very much right now. My heart is truly broken that I cannot help this person. Everything that is in me wants to fix their life, reach out to them and do whatever I can...I am trying, we all are...yet, still this dear one is seemingly suffering. I must admit that sometimes I feel a bit impatient when I hear of the everyday woes of people sometimes...part of me wants to say, "Snap out of it!" I want to shout out that if Robert can endure all of this, how can anyone not deal with the simple things of life...yet, the truth is, life is hard. Life is hard...for some, much harder than others. Just because Robert has been given the ability to fight and not give up this battle, does not mean others are equipped the same way...I am sorry if I ever show such insensitivity to someone I love and hold dear...I know I have and for this my heart aches, forgive me...and please pray for my dear one...Pray that as life is flourishing all around, that this person not be consumed by the harshness that it can bring.
Thank you for checking in...we appreciate it more than you know! Love to all of you, Kathy
Wednesday, October 02, 2002 at 11:44 PM (CDT)
Dear friends...I literally had given up on writing tonight, twice. I was so tired and a bit blue earlier that I decided not to bother...than, I realized that so many of you so faithfully come here to this place to check on Robert. I figured if you could be faithful to him, I could at least respond with words about our day. Thank you for encouraging me in this.
Robert and I were headed to the Med Room early, around eight a.m. He waited for his "favorite" nurse in Assesment Triage...then off we went to the Med Room to camp. He was tutored for a bit and I had a volunteer helping with my computer glitches. I am absolutely sick of this issue...I do need to say, that apparently somehow, somewhere a virus was sent to me, and it is the kind that automatically searches and attaches itself to my addresses in the email files and sends out the virus...even if I never email you...so, the bottom line, if you ever received an email from me...whether I sent it or not, you may have been given this virus. It is a very common well known virus; the Klez virus...please check your system. Ask someone who knows about this for help if you need to...sorry. I had no idea it was doing this. I will not be answering any emails from this account for a time and that is why some of you have not gotten responses to your emails...at this time there is no virus in my system.
Enough of that nonsense! Robert's counts were as follows: wbc 1.6 YES!; platelets down, way down, 8,000 from 23,000; hem 8.1 ANC 1000. So, he received platelets in addition to all his meds. Luckily for me, I noticed the nurse was running the platelets so slow and she had set the rate wrong...she is the one who unwittingly extended our stay one day by 2 hours because of this. I am so glad I am here to help educate the staff at St. Jude! I do have so many purposes in this life after all. I was blessed to see and speak with four of my friends today; acutally I probably spend at least one hour every day talking with other Moms helping with issues and just sharing our thoughts. I enjoy this so much. If I can help or be a friend to anyone going through this I am glad to do it. God gives wisdom freely, remember that!
This afternoon we went off with our Nebraska friends. The boys, Steven and Robert, played arcade games. I know what you are thinking...the place was empty and Robert had on his mask and gloves...Peg and I really had to chuckle as we looked at our "boys" trying to navigate their way in the arcade. Steven has a patch he wears on one eye to help the eye muscles, and Robert wears his big green mask and gloves...what a sight they were...they did not care at all! I look at these boys and think of how this cancer has crept in and is literally trying to steal their lives...and these guys are two perfect examples of how they will not let "it" succeed. I look at Steven, about 6 feet tall, he played football in high school last season, smart, funny, good-looking...and a kid like Robert, also, smart, funny, good-looking...both athletes--and I think of so much that they have been forced to give up to fight for their very existence. It was overwhelming for me tonight. It always hits me hardest when I change the dressing on Robert's lines and see the double lumen that comes right out of the middle of my son's chest...a new sort of umbilical cord that is a life line of sorts. I see this leading straight into his heart...every time it gets me. It is overwhelming. A young man like Steven should be playing football worried about sprained ankles and such...Robert, well, he should be worried about little league. By the time he takes the pitcher's mound again, little league will be long gone...I think about how Jeff and I lamented over where he should play baseball. So many moments of his childhood are not going to be...they have been replaced with different moments. Moments like today when he and his new friend played in an arcade for a short time before they both ran out of steam. Everything, I literally mean EVERYTHING, in their lives is different, changed...we are only two families with stories like this...there are far too many parents facing these things...and yes, today, tonight as I grew tired and needed sleep, I became overwhelmed with all of this.
I am grateful for a friend like my friend from Nebraska. I watch her and her wonderful son as they laugh together...it is so nice to have her to laugh with. We both realize that this has become our lot in life. We both know that though we would never had imagined our lives would take such a turn, nor would we ever have dreamed it possible, we know it is here, it is real, and our boys need us. We each have 4 children. Each of our 4 children need us...we are Moms. I am so grateful for the moments we can laugh together to keep from crying...She, like me, knows that at the days end, our Father in Heaven is in control. These are His boys, we simply have been blessed to be their mothers.
Finally, tonight I as I lay here I think of all the names of all of our "new" friends...all the children and families we have come to know and love who are fighting cancer...God give you strength and courage and wisdom to face another day. I KNOW He will. He has to, because WE REALLY NEED it! May you have laughter everday, tears not so often and may love abound in your homes and lives...God bless you all!
My dear friends, thank you for stopping by...if you are near some water, a beach or a lake...splash around a bit for our boy Robert...play in a sprinkler or toss a rock in the water...knee-board if you can...throw a baseball, ride a bike, or a skateboard...enjoy life! Love, Kathy
Tuesday, October 01, 2002 at 09:09 PM (CDT)
Hi guys...sorry but this will be brief. I am having a wonderful time trying to de-bug my computer from a virus that apparently has been started through this very website...one parent unknowingly got it and sent it sort of thing...who knows. However, I have literally spent the entire day trying to download, upload, delete and completely wipe out any such remnants of this...It has not worked.
Robert's counts were...wbc 1.3 YEAH!; hem 8.1; platelets 23,000 YEAH!; I was so please and pleasantly surprised at his platelets and wbc. All good...we are in the Med Room and hopefully will be turning in early for the night...praying the IV pump does not beep all night keeping us up with the Air In Line alarm...so...sorry.
Please update your anti-virus stuff! If you have received this, I have no idea where it came from and did not knowingly send it...it is the latest of computer worms to get out there...lovely huh? I will try to include better info about the virus tomorrow. Again, I hope this epidemic does not get you...
God bless you and take good care. Kathy
Monday, September 30, 2002 at 10:26 PM (CDT)
Hello dear friends. What a nice to feeling to know that we indeed do have so many friends. It is a definite added blessing the way we have discovered so many friends and made so many new ones.
Robert had a very good day today. We of course were in the Medicine Room early in the morning...Our days always begin with a trip to the Assesment Triage room; where blood is drawn for daily labs. Robert has lab work done daily because of his precarious blood levels and his requiring transfusions almost daily. This also gives them a good idea of how his kidneys and liver are functioning, something they must watch closely with the anti-viral medicine he is on. Every morning, Robert looks for his favorite triage nurses; he has become quite the charmer and is so animated with everyone. I wondered when this would happen and he would be so comfortable here that he would allow himself to connect. The same goes for me. I finally feel like I am connecting and have friends here as well. Our daily routine in the Med Room is not so bad, and is not a bad way to pass the time. We have lots of laughs and I have many talks with the nurses in there. You know me, solving the world's problems wherever I go...
Robert's lab work finally came back from last weeks test on the status of his HHV6 virus; he is still positive. This means another week of nightly trips back to the Med Room for at least another week. It also means IV fluids every night. I must admit the "air in line" beeping the pump makes is driving us crazy all night...Robert was a little disappointed, but it is not too bad; we have friends in the evening there as well. I enjoy greeting everyone every morning, sort of like I am coming into work or something...I did speak briefly with Dr. Horwitz today. He confirmed that it was indeed the virus that is suppressing Robert's immune system and not the meds or anything else. He is still tossing around the idea of the marrow boost. If they give him more marrow while the virus is present it would get infected as well and defeat the whole purpose. So, they will wait on that. Robert's platelets went down to 10,000 today. They did not have a perfect match for platelets, so they had to give him some that were acceptable, and he will probably need more tomorrow. His ANC was 600 today. That was better.
We took a drive and went out a bit this afternoon. We went to the grocery and Target. Nothing is too crowded around here in the afternoons and Robert wears his mask and touches nothing...I told Robert he is like my shadow. It is strange to be with him 24/7. Wonderful, but a bit strange. I am used to being with little ones for that time, not my big kids. Robert is wonderful to be with. Poor boy, does run out of energy, and needs to work on his strength in his legs. He does like to get out though. We always laugh together, and I like that he is so comfortable with me. I love the way he puts his head on my shoulder when I sit next to him, or the way he takes hold of my hand when we walk. My friend and I were watching our "boys" the other day, and I said how they look like they did when they were little. It is definitely a wonderful blessing to be able to have this time with Robert and connect with him like this. I am so grateful he lets me share this with him and he does not shut me out...he does not like to be alone at all. I can see how fragile he really is. Jeff said he sounded so much like a little boy the other night when they talked...sometimes he seems so strong and grown up when he goes through so much...but we know he is still so young.
So, tomorrow we go back to the Medicine Room for another day. Jeff says the progress at the house for Robert's room is going along great. Another dear friend and neighbor brought over some food for Jeff and the kids. I told Jeff he really knows how to play that whole Dad home alone with the kids, please feed me thing well...if he is smart he will look even more pitiful and someone may do the laundry for him. There is something about Jeff that makes women want to cook for him! I am sure the kids are loving it too. Thank you for taking care of them everyone!
It is late, and it is time for some sleep. Robert is already sleeping soundly. What a blessing...so many blessings. Thank you for coming by and checking in...much love to you all. Kathy
Sunday, September 29, 2002 at 10:40 PM (CDT)
Hello dear friends, and happy Monday to you. Robert and I have had a wonderful weekend. Very relaxed and we are really enjoying each others company. We were very slow moving this morning and thank goodness scheduling is much more relaxed on the weekends so we were able to be a little late for the med room appts.
Robert continues to keep the low counts...BUMMER! He is feeling great, looking great...full of energy (of course he does spend alot of time on the couch), and wants to start getting out more. Maybe this is the Lord's way of keeping him under wraps for a bit longer while his body continues to fight off this virus. It is working, with an ANC of 200 Robert knows this means he goes no where! Today is hem. was at 8.4; his platelets down to 12,000; and his wbc was .6. You sure would never know this is the state of affairs in Robert's body by looking at him. Even though his platelets were so low, they did not transfuse him. This was fine with me. They deducted that since he is not bleeding and not going to be skateboarding and such, he should be fine. They will probably be very low tomorrow and will get transfused.
I have many questions for Dr. Horwitz this week. I am so curious about all of this stuff with Robert's counts. Does the anti-viral medicine suppress his counts; does the low wbc mean the virus is still very strong; how long do we have to keep up the nightly doses of this medicine...it has been 2 weeks of day and night trips to the med room for Foscarnate...that is alot of anti-viral stuff. Many questions, probably not many answers, but, I will ask them anyway. It is my job after all! I do love that part of my job.
We had a lovely day today. We had our friends over, Peg and Steven. Peg and I visited (you know how I love to chat) and Robert and Steven watched football, racing and such...we then all went out to watch Robert fly the plane. It was a beautiful afternoon and the weather is positively dreamy! The grounds here at Target House are very nice and inviting. I feel like I am in a special place. I enjoy very much being outdoors here. The House itself is very nice as well. Much like everything here at St. Jude. We feel so blessed to be able to be here. One of the nurses and I were discussing how so many of the families that come here have had no other experience with another facility and do not realize how good they have it here. Robert is so happy here, and I can tell he is not afraid to be here. That is key to his overall well-being and will only help with his continued healing and recovery.
We look forward to a great week. The kids are off to school in the morning...Jeff has all sorts of things to keep him busy. He is doing a wonderful job of taking such good care of the three children at home. This is a special time for them all. I am glad he is there with them and there for them. We are all learning so much these days...much about ourselves and each other. Things that will make us better people together and apart.
We are so grateful that you all take the time to check in on us and to support us...thank you to our kind neighbor who brought over a meal for Jeff and the kids...God bless all of you and may peace be in your hearts. Kathy
Saturday, September 28, 2002 at 06:18 PM (CDT)
Hello friends...Robert and I have had a nice quiet, easy day...or as Robert would put it, "boring"! Such is life...he is napping right now. I am glad for that. He definitely is feeling like he should be "normal" right now. But, I can see how he tires easily and with his platelets and blood so low, he really will tire out easily.
Robert was glad to not get any transfusions and our visit to the Medicine Room was a record 3 hours. His platelets were at 21,000; his hem. was 8.6; his wbc .7...hopefully it is on its way back up.
The weather is amazing here...I am praying that Robert's ANC gets a bit higher so that he and I can hopefully enjoy doing more out of the apt. together...I told had to remind him that if he is bored, so am I! Actually I spent all day trying to download an updated virus detector for my computer. Someone thought it would be very clever to send us a virus...very clever; not NICE! After speaking with a customer service person at AOL, he pointed out that someone deliberately figured out a way to get this virus to us and disguised it in a photo...Jeff was able to intercept it on the computer at home, however, I am not having much luck here with the laptop. Oh well, life goes on...so that leaves me to say that I will not under any circumstance be opening any emails from any person I do not know...if you are sending us an email for the first time, please send it through the guestbook...actually, this one was sent from one of my own account names--cleverly disguised.
Jeff was pleasantly surprised to have men working at the house today on Robert's room. Check out the cool photo of Jeff in the guestbook...I hope they had a wonderful time at church tonight. Jessica went to a friends birthday.
Thank you for keeping us close in your thoughts; this is still so tough for us to be separated--truthfully, you cannot imagine how tough! Only God can get us through this, we are all feeling the strain...He is taking good care of us. We need to let Him. Have a blessed Sunday, Peace to you all, Kathy
Friday, September 27, 2002 at 08:18 PM (CDT)
Hello out there...another day on its way out. It was a good Friday. Our days in the Medicine Room have become a comfortable, welcome place to be. The nurses and staff here are becoming like old friends.
Robert's counts remain pretty much the same. His platelets were actually an amount they have not picked to be, 16,000; so he did get a transfusion. His hemoglobin held at 8.9; his wbc is still at .6. So his ANC(his level of ability to fight off infection) was at 400, again. So, we continue to be fairly isolated. We have ventured out to get a jacket for Robert...fortunately, there is a mall near our apt. that is uncrowded and has easy in-out access. Robert ALWAYS wears his mask. No question there...I am so glad that I do not have to battle with him about this. I think all those bouts with fever helped drive home the point that he is so susceptible to anything and everything. By the way, the particular strain of herpes virus that he has is HHV6. One of his chemistry levels that measure his liver function is doing so well. For some time it has been a bit elevated. However, it is now down and looking good. It was not alarmingly high, but they have to look at it all the time. Jeff speculates that his virus his getting under control and this might have something to do with his liver function; I will ask Dr. Horwitz next week.
Robert and I (actually Jeff as well) have grown to really get along well with a certain nurse practioner here. He has been with Robert almost everyday since he came here. We have tons of fun and laughs with Ken, and even though Robert won't admit it, he even likes Ken poking around to check on him.
We are looking forward to a nice weekend. Jeff is literally running around like a madman trying to get our life in order at home...we try not to think about the day to day of life in the normal world when we are here, but, it definitely catches up to you when you do that. He is really enjoying being home with the kids...I wonder, Jeff, when have you had that opportunity? I am so happy to know that you are there, and enjoying every minute...we miss you!
Thank you for checking in, and for those of you at church on Sat. night, look for Jeff and give him a hug for me!!! Take care, and have a wonderful weekend...Kathy
Thursday, September 26, 2002 at 08:14 PM (CDT)
Well, I dare say, I think we can almost relate to how you South Floridians must have felt last July with all the rain! Unfortunately, the streets here are not that well lit, and everything tends to flood...it should be interesting navigating home tonight and in the am to and from the hospital. As Robert would put it, "you are doing good Mom, you have not crashed yet!" It is the "yet" part that has me concerned...
Robert and I have definitely got into the routine. I am feeling like I am back in a very familiar good place...Robert continues to feel well and is so happy--he has even tried to get a bit "cocky" at times and I had to remind him his role in life!!! Today was a landmark day for him...he did not have ANY transfusions!!! Yes, you heard it hear first! He just got his standard 3 hours of meds and then off to the apt we headed. It was a record of getting out of here before 1pm...you see, I told you they are scared of me around here...they stay on top of stuff! Maybe when Jeff is here all the nurses like having him around longer so they slow things up a bit! :) For me, I do like it here, however, enough is enough...get this show on the road and keep things moving, that's what I say.
Robert has been really enjoying doing his schoolwork. He only started last week. Thank goodness when you are tutored one on one so much gets accomplished in a short amount of time. His tutor is a very nice, funny young man. Robert looks so forward to his coming in and actually likes doing his homework. Basically, he is working on your basic 6th grade stuff. His school back home just wants him to send grades down and they will do the rest. I am anticipating doing some school tutoring next summer, and art lessons for Robert to be up to speed next year for school. Lord willing, he will be able to go to school for 7th grade. That would be nice. I know he will like it there when he gets to his school. Today I asked him if he wanted to call his best bud, Ryan. He said he does not get out of school until 4pm(that was about the time he left after school care); then Robert said, "oh yeah, we are not in 5th grade anymore!" Sometimes I wonder what Robert thinks about the rest of the world. I wonder if life in his mind has stopped and is waiting for him to join back in the normalcy he remembers...I am sure it will be a bit of an adjustment when he returns. He is basically isolated from all that was so familiar to him all of his life...he has not seen his sisters in months...I am so grateful he tends to be so easy-going, matter of fact and happy go-lucky! He did not inherit my need to contemplate life and try to solve the world's problems...he is content to just be...that he inherited from his Dad. Good staying power he inherited from both of us!!! I need to get a photo of him on this page for you all; he looks so good to me. His hair is soft like a newborn's; and has that little swirl on the top of his head like when he was a baby. The nurses and staff here love the way he looks. They are so pleased to see him cutting up and happy. Blessings, blessings, blessings...all of it is good.
I guess I have a bit of charm left in me, or our friends were very hungry! I actually had Peg cooking in the kitchen for us tonight. I did help a bit...it was so wonderful to cook a "family" meal. The guys enjoyed everything and it was absolutely wonderful for me to share a meal with a friend and not be eating out of styro-foam containers while balancing it on my lap...Thanks Peg! Unfortunately, our dear friends received word today that the doctor tried to call them before they left home yesterday; he wanted to tell them to stay home for a week, because they had to postpone Steven's procedure for a week. Can you imagine..."oh sorry to have dragged you away from your family, but you could have stayed home another week, our bad!!!" I feel so bad that they could have had more time at home, but I told Peg, we are so blessed to have them here, and Robert really enjoys Steven being around to hang out with. So, unfortunately, their loss is our gain...Truly, can you imagine!!! It is all so insane...
I had to laugh tonight as Jeff expressed such exasperation with trying to piece things together at home; like which bills have been paid, and that sort of thing. He is definitely making the most of his time already. He told me when he saw Jessica, that he hugged her so tight that she said "Dad, you're squeezing me too tight..." He said they talked straight through the whole trip home...he was able to accomplish alot in just today and even got to get with the basketball team...he will be at practice at 6am in the morning...big surprise there!!! Hey Joe, I told you there was one thing that got him out of bed early!!! HA! I am glad that Jeff is having this time to reconnect with the friends at the college. I know he misses them and that part of his life.
Thank you for checking in on Robert and our family. Drop us a line, and keep in touch...many of you I have not heard from in a looonnnggg time...you know who you are...God bless you, Love, Kathy
Wednesday, September 25, 2002 at 08:16 PM (CDT)
Hello friends. Today is Day +77 for Robert. He is doing well...we had a good first day alone. Jeff and Matthew had a safe trip to West Palm. Matthew told me that I should not be afraid of flying because it is so much fun! I am so grateful that they arrived safely in spite of all the inclement weather going on. Thanks be to God for that.
Once again we were in the medicine room. Today was a full day, but not bad at all. We were here from 8am to 4pm; Robert was transfused for red blood and platelets. His hem was down to 7.4 (it showed from how tired he was last night); his platelets were again at 17,000; his wbc were down a bit to .7. It is all simply a waiting game. Wait, wait, wait...so we wait. I spoke with Dr. Horwitz today about the problem with Robert and his platelets. What he has is a pretty common occurance from to many transfusions. He apparently has developed antibodies to the platelets and is fighting them off. Go figure the human body Robert has platelets that can find the will to fight off other platelets, but wbc do not have this ability. It is a bit of a mystery as the doctor put it...so he said we just need to keep him at a sort of safe level and watch him very carefully. No skateboarding! Also, he told me that this problem could exist for a long time, months even. And if our hospital at home cannot provide "single donor" platelets than Robert would have to stay here to get platelets as needed...could be a very long time. Please add this very important aspect of his recovery to your specific prayers.
We had a very suprising and wonderful visit from our good friends from Nebraska! It is so good to have them back here. Steven came back to the apt. with Robert and I and ate with him and then "hung out" a while. Robertt is so glad to have him here...and I am so glad to have Peggy here as well. We have discovered that our girls have many of the same things going on in their lives right now and we hope they can become email buddies...that would be wonderful. Tomorrow, they will come over for dinner.
Well, we are back in the medicine room and will be leaving in about an hour. I am so sleepy! A long day, and it started so eary. I do not know who cried harder, Matthew or me at 5am this morning when they left...just so grateful they are home safe and sound...God be with you and give you peace...Kathy
Tuesday, September 24, 2002 at 09:04 PM (CDT)
Hi there...Today is Day +76 and counting! You say, well who is counting; we are, why, we do not know, because Robert is definitely on his own schedule. It is good to keep track.
Miracles never cease around here...we were actually out of the medicine room before 1:00pm. Believe me, that is a miracle, and Robert even had to get platelets today. It was truly a blessing. Robert does enjoy flying his plane outside in the beautiful weather. Jeff, Matthew and I made a quick trip to the grocery store, and then to drop Jeff off to pick up a friends van from the shop. As you may recall while I was in West Palm Beach, some dear friends who had left there van here, let Jeff use it while they were gone. Well, that kindness kept Jeff and Robert sane. It helped him move, and enabled the guys to have some sight-seeing time without having to wait on shuttles all day. Jeff had noticed the brakes were rubbing a bit; so he decided to put it in the shop. Good thing, the back brake pads were cracking. Thank the Lord Jeff was able to get this done for our friends; that is the last thing they would need to worry about when they arrive tomorrow. That is the other wonderful piece to the puzzle; Jeff will drive their van to the airport (at 5:30am) and leave it for them to drive over instead of waiting on the shuttle! Don't you just love it when a plan comes together! God is good to us, and Jeff was so grateful to have had the use of this vehicle...I know Robert will be so glad to see Steven (that is our friend from Nebraska), and I will be glad to see Peggy!! I hope to have them over to our apt. to enjoy their company...if I am really nice, maybe I can even talk Peg into cooking for us...she is such a wonderful Mom like that!
I am glad to report that we are so glad to be here in the Target House. Matthew had a blast tonight running around with some new friends, he has made about 50 in the week he has been here...everywhere he goes he is saying hello to children. Robert loves the outdoors here; and I think I may actually have some potential friends here! I saw another Mom that I sort of talked with while on the BMT floor. I say sort of talked with because she is from Lebanon as well, and we have a bit of a language barrier. When I asked her about her daughter, she hugged and kissed my cheek. She did this twice as we spoke about her daughter. I find this gesture so warm and kind. When I saw her again later she greeted me with the same warmth and so did her beautiful daughter. Her daughter is an older teen; she is precious...she has relapsed after her transplant, and has the dreaded GVHD so bad in her lungs that she cannot get another transplant yet. In spite of all of this, they are so happy to have any time together they can; no complaining and time to kiss a practical stranger on the cheek to share a bond...this blesses me so much I can hardly express it. The young woman's name is Joyce if you would like to uplift her to the Lord...
Robert continues to maintain his counts...wbc 1.0; hemoblobin 8.0; platelets were 17,000; same as yesterday...all of his chemistry look so good though; in spite of the strong anti-viral. We are so grateful for all of this. Today he was very tired by the afternoon, and he did start with a headache. I know his blood is much lower now and he will get some tomorrow.
We will miss our guys so much as they leave. By the time most of you read this Matthew and Jeff will be in the air. I pray they are safe and sound. Jeff is meeting up to get Jessica tomorrow evening...he absolutely cannot wait to see his girls! He misses them so much...hang on girls, Daddy's coming home!!!! Go easy on him girls :).
Thank you for dropping in...and do check in on our friends at the bottom of the page...the links now are working!!! Please send them a word of encouragement...I know you are all so good at that...Much love, Kathy
Monday, September 23, 2002 at 08:13 PM (CDT)
Good day friends. Well, it is official, Jeff managed to make a plane reservation to get home! He and Matthew will fly out of Memphis at 6:30am on Wed. the 25th. So, Robert and I will be up very early to get the guys to the airport! We are grateful for the pass that was provided to get them home; they are flying on stand-by, so please pray for a safe and uneventful flight home; we hope they do not get bumped! Matthew is very excited about going on his first plane trip. I know Jeff is excited about being home, and seeing the progress of Robert's room firsthand.
Today was a very LONG day in the medicine room; it ended up being 8hours~ I am still trying to figure out how 6.5 hours of meds turned into 8...believe me, I plan to stay on top of that, I am sorry to say, but, as much as we love the people there, we do not want to be there longer than we have to. Basically, it is our "job" 7 days a week. So, part of my "job" is to keep things in check and running smoothly, aren't you glad to have me on the clock...I promise to be good and not drive anyone too crazy! Now that Jeff is heading home, I have to drive someone crazy :).
Robert's wbc is still going UP! Praise God...today they were at 1.5. His platelets were down to 17,000. One of the nurses said that he must have "platelet refractory"; that is basically the term for him not holding onto his platelets or making his own. They keep saying to me, remember the platelets take the longest to come back; then I remind them that Robert is Day +75 post transplant...they simply reply "Oh..." and then sort of look confused...I rely on the doctors and what they say. Dr. Horwitz came by for a few minutes...he said Robert looks great in-person and on paper. He said for us to realistically plan on being home for Christmas! So what is a few more months of being here...basically, we have no choice, and obviously will do what we have to to see that Robert is well. Hindsight, you know that thing that is 20-20 in retrospect, well, we maybe should have simply re-located for the time we were here...but, who knew! We sort of wish we did know something for sure, that way we could actually get jobs here to help get by...we are definitely in a catch 22 situation...once again, no easy answer. Isn't life grand!
It is beautiful here. We were hoping so much for a not so long day in the med room; because Robert's ANC actually went above 1,000; first time in weeks. We had big plans of enjoying the day out in the beauty of the day. Robert does not even mind wearing his mask everywhere! We got him this cool remote control kind of plane thing...he loves it; we thought it would be so nice for him to be able to do something like that on the beautiful grounds here at the Target House. We may actually venture to the zoo tomorrow; if we have time, and the okay to head over there. As long as Robert wears his mask, does not touch anything, and is not in a situation with more than a couple of people, he is allowed to be out...we (and Robert) are VERY protective. He and I were tossing a frisbee this evening, and as soon as it hit the ground I thought "FUNGUS"!!! I told Robert not to touch anything on his face and we made sure he washed his hands right away...
I am amazed to see how Robert has come back to "life." He is happy go-lucky again. He is taking an active role in his health-care. He likes to flush his lines, and evens has the "nerve" to argue with me that his hands are clean before he touches them, the old I can't see any dirt on my hands line...PLEASE! Can you imagine!!! Not on my shift!! He does get worn out pretty easily, but, he does not want to slow down. He sleeps so good at night, and what a blessing that is. It is so nice to laugh and hear him happy and to know that above all else, Robert loves this place. I can tell. He is at home here. It does my heart good to know that. It is so hard to be so far from home...but, when I watch him at the hospital, he really is happy.
He has been fighting this beast for almost 2 years now...Two years of his life have been consumed by cancer, but not devoured...he refuses to let it overtake his spirit, his laughter, his joy, and his pure love of life and family and friends...What did you do when you were 9-11 years old...Jessica informed me that those were the best years for her, she feels so bad that Robert has had such strife during such a typical "happy" time. Who knew...I think, from my vantage point as a Mom, this consumes my thoughts the most. I look at my sweet Matthew and remember Robert when he was 5, and he had not a care in the world...and I pray, pray, pray, that Matthew does not have this in the path ahead of him...I find myself looking at every baby in such a different way now. I breathe a deep heart felt prayer for them as I see their Mother or Father cradling them...praying that they would never have to know such things in their young life. I look at the parents and want to tell them to cherish every single moment and breathe, because one day they may get a phone call telling them their child's life is about to change forever...Truly, I cannot believe that Robert was the absolute most healthy, care-free kid around. Not ever on an antibiotic, hardly ever even sick; I dare say, I do not think he ever he vomitted before his first dose of chemo...
Through all of this, I say to you friends, I am so grateful that I realized when I was expecting my third baby, Christina, that I did not trust God to take care of my children. I realized that at that time, I had been trying to do so much for them on my own...like I did not need His help. I can remember the moment when I chose to give them all back to Him, one more time, to put my complete trust in Him...it was hard for me to do...can you believe that. I am a very strong, determined woman, and Mom...and I am so grateful that I know Robert is in the right hand of God...for Him to take care of and love...
May you find peace in your hearts today...thank you for checking in on us, and for your constant faith that Robert will be healed. God bless you, Kathy
**Please check on the kids links at the bottom of Robert's page, they now work!**Send them a message let them know where you found out about them!!! ;)
Sunday, September 22, 2002 at 08:23 PM (CDT)
Hi guys! I think I have found something I really like about Memphis, besides this little french bakery up the road...the Fall weather. It is sort of a dream of mine to live in a place where there is actually a fall season...not exactly under the circumstances I had hoped, but, it definitely makes things more tolerable than all the steam and heat! I cannot wait for the leaves to change; I have only seen the colors of Autumn one time; they hung around late one year when I went to visit my Dad before he had his lung surgery many years back. Robert was just a little guy, and we had a delightful time together...I was telling Robert today, how he was so much like Matthew when he was little. How everywhere we went everyone looked at him and thought he was so cute. He still is. Even with his dark new look. I need to get a photo for all of you to see.
Now to the technicalities, that is what you are here for after all, isn't it? We were at the medicine room by 8:30 this morning...got things rolling, in anticipation of needing a blood transfusion. We were right, Robert's hemoglobin was down to 7.5. His platelet level was at 23,000, low, but acceptable. His wbc were up to 1.0; lets pray that this is the trend. These little guys really NEED to get moving!!! Hopefully the anti-viral will be able to knock that virus off its feet; also, the sooner they can see a good response to the medicine, the sooner we can cut out the nightly trips to the medicine room, and maybe the IV fluids at night. Remember, this stuff is so strong they have to give him extra fluids...I am sure Robert looks forward to the day when he does not have to go to the medicine room every day!!! Something to aspire to.
Jeff is planning on being home on Wed. A couple of friends have provided us with miles and a pass to fly home. Thank you...this is very kind. I guess I will have to get myself psyched up to fly home next time...I do not know when, maybe I will be able to be home for Halloween with the kids. That would be a treat! Strange in a way, we had hoped when this whole plan started that Robert would be heading home at that time...he's getting there, slow but sure! I am so glad to see him eating and happy. Last night as he prayed, he prayed for his best friend, that he would be safe with him gone; he prayed for his big sister, that she would be happier because he really misses her; he prayed to get better fast! It was the first time in a while I heard him make mention of going home. I think he does not think of the things he is missing, because he stays focused on being here and getting well. No one knows better than him, how he feels and he knows his body is healing. I am grateful to know that He is trusting God to take care of all these things...when I look at Robert, I know that all the things of my life that seem to occupy the space in my mind, are so un-important. What do I have to worry about? How can I...I am glad to have my days with Robert. He teaches me much patience and love.
Another late night awaits, only to rise early and get a start on the day...thank you Lord for today, for life, and love and for strength to get through all of this--surely, the Lord knows, this is not easy! Love and peace---Kathy
Sunday, September 22, 2002 at 07:10 AM (CDT)
Good day friends. Hopefully this will be updated for those of you who are early risers on Sunday morning and heading off to church...
The computer is actually giving me fits, so I will be very brief if it seems to end abruptly, I apologize, and will be back later...
Robert's platelets were very low, 10,000, and he was given some more...opefully, he can hold onto to these a bit more. His hemglobin was down also, 7.8; will probably get transfused today. Unfortunately, his wbc is still down, to .7 from 1.1; will speak with Dr. Horwitz about this hopefully Monday.
Robert's spirits are good, he definitely is loving having his little brother here...I know he would love to have his sisters here as well, at the rate we are going, we will have plenty of time to bring them up for a visit...that would be nice. It is the getting back and forth that takes much effort.
Sorry this is so brief, but the computer is not cooperating...Much love and warm regards, Kathy
Friday, September 20, 2002 at 10:10 PM (CDT)
Hello friends. Sounds like the Light the Night Walk was a success...so good to hear from Robert's friend Mary; thanks for taking the steps with Robert in mind Mary! We miss you too...
Robert is feeling well today. He seems to only suffer these days with a bit of stomach pain right after the infusion of the anti-viral med he gets twice a day. It is an hour long infusion--and it is said to be very toxic. It would stand to reason that is might cause some discomfort. Thank goodness he is not vomitting anymore. His wbc was down to 1.1; his hemoglobin was 8.1(will probably need blood tomorrow); and his platelets are exactly the same 22,000. They stayed the same even though he was transfused yesterday. They "believe" that he is becoming "desensitzed" to them and that his body recognizes they are not his own and attacks and destroys them; in other words it is a waste to keep giving him transfusions everyday if they are not going to hold! As the nurse practitioner put it, "there is another Robert somewhere who really needs them and will hold onto them..." This is a common occurrence and there is not really any way to make them "stick around". So, we watch him closely, and when they get super low...he will get them.
I must say as I walk around St. Jude, I count my blessing and thank God that He made a way for Robert to be here...I may miss home, it may be unbelievable hard on our family to be apart, we cannot "afford" to be so far away...but there is not a shadow of a doubt, or a fleeting moment, that would cause us to think that Robert is not in the best place for him! It is no small miracle that a dear friend of mine "ran" into another dear friend who made a call and got Robert here...God has a plan, and He is making a way for Robert to be a part of it!
Today, Robert and I enjoyed watching a video from his school. Robert's 5th grade teacher, sent a care package up with me, and we watched the awards presentation (I could even see me when I got all teary-eyed when Robert got his awards...) and then the special luncheon, and then the Dance! That was hilarious! Robert and I cracked up many times at some of the kids...yes, we even have footage of Robert chasing a certain girl he wanted to get a dance with...then just when we thought it was finished; Robert had gone into the other room, and a bonus appeared. Many of the kids in his class video recorded personal messages to Robert! His teacher and guidance counselor also sent messages...it was so wonderful to see! Robert loved it, and I know it is special to him. He looks so forward to going to school again! Thank you so much for the extra effort for Robert, once again, Mr. McMahon, you went the extra mile...
Well, I just said to Jeff wouldn't it be nice to have a "weekend"! I am so sure Robert cannot wait for the day when he does not have to get up so early for meds and not have to go to the medicine room...a bit of a bummer for now! He is a trooper! I know I will be missing church tomorrow night, sing for me Joe and Delores!!! Have a wonderful weekend, thank you for checking in...Peace to you, Kathy
Thursday, September 19, 2002 at 11:01 PM (CDT)
Good day dear friends! I trust this finds you all well and living life to the fullest...I believe it is Friday?? And I am sure many of you are so glad for that! I know Christina is, that means it is the weekend and time for a couple days of no school...
Robert was feeling much better today. This I am so glad for. I was so concerned that the fevers may be coming back and his stomach was really bothering him yesterday. He was eating and feeling much better today, and even though he received a platelet transfusion he kept "his cool" and suffered with no fever. I must say, I do sort of hold my breathe these nights when Jeff takes him back to the medicine room, afraid that I will get a call that he is being admitted for fevers...so far, so good. I honestly cannot imagine what dear Robert must be thinking about all the time. He simply goes through all of this as though it is just part of his life...no big deal. He does not complain, he does not try to act like it is inconveniencing his life...he simply is getting through it all, and is so well adjusted to it. I wish I was as accepting and adjusted to the whole thing...I do not think I will ever get used to what this has done to our family. But, I constantly bring myself back to the point that, if Robert can handle it so well, than surely, I can, we all can...that is Jeff and I and the kids...talk about inconveniencing a persons life...cancer just creeps right in and tries to take over. It actually does take over your life--it is all consuming, every moment of every day. Once it is there, there is no escaping it until maybe someday when a cure is declared. Can you tell I am feeling a bit overwhelmed by the enormity of the situation...and we have it so "good" compared to so many, and I do not mean this to be taken lightly, even though this is so hard on Robert and our family, we truly are so much more fortunate and blessed than so many...Robert is strong and is able to fight his disease, and we feel like there is a light in the end of the tunnel for him! We know that we can pick up the pieces of our life and someday we do hope to achieve a new "normal" and all be together again!
Robert's day was long in the medicine room. Jeff and Matthew packed up and moved us one last time...for the rest of our stay we will occupy room 208 of the Target House. (Don't ask :)...long story) It is lovely here, and we are glad to be here...I only hope and pray that Robert will get to sleep here alot and not have to go back on the floor again!!! Now that is something to look forward to! Robert's blood levels and all of his labs look very good. His wbc was at 1.4 today; his hemoglobin was at 8.7; platelets were low 22,000; his liver and kidneys are functioning at very acceptable, good levels! I also found out a bit more regarding Robert's viral herpes. I found out that in us with normal functioning immune systems this would lie dormant, however, in people like Robert with virtually no immune system, it attacks the brain, lungs and liver! Yikes! that is why they feel so fortunate to know that he has it to treat it aggresively until he has a more stable immune system. So, we are glad to endure the long medicine room stays...it means we have a way to combat something that is potentially so harmful to our boy. We are hoping to be able to stop one of the IV antibiotics in a couple of days; again, one that is better to be safe than sorry by administering it. I must say, I do hope Robert does not need any additional blood products tomorrow; and I am praying that these things become more stable so that he does not need so many transfusions.
Back home in West Palm Beach on Friday evening, is the Light the Night Walk; it is to help raise awareness about Leukemia. It is to take place along Flagler Drive. I do not have the particulars here with me...but, I am sure it will be a beautiful night for a lovely walk to show support to help combat this disease...many will be walking in honor of Robert. Join them if you are able, and willing.
Also, many of you always ask how to help, you want to do something...well, I have not really requested this before, but, Robert is using lots of blood all the time...people who have donated blood literally are helping to keep him going!!! Please consider being a blood donor...there are lots of "Roberts" in hospitals all over relying on blood to keep them going. Thank you.
Well, I gotta run...my #1 daughter is calling on my cell phone; I must take this call. God bless you all and keep the peace...Love, Kathy
Wednesday, September 18, 2002 at 07:50 PM (CDT)
Hello friends. I must say, in the two days that I have not written, there is much to write about. First of all, Matthew and I arrived in Memphis on Tuesday night...thank goodness! It was a long drive, and very nice to get to stop off and see my friend, Shari, in Birmingham, even for just a brief time.
Robert is holding up pretty well. He looks totally different than when I last saw him. He was so glad to see us, and told me that he missed me so much...I know he enjoys hearing the chatter of his little brother and watching him with all of his little antics. Matthew is such a sweetie, and very amusing! He keeps us all smiling, and his new philosophy about life is that the more you laugh, the longer you live. He is determined to out-live everyone, and laughs all the time!! Robert has grown so much hair back. It is very dark and thick already. The first thing I noticed was that he has eyebrows and eyelashes now! They are jet black! I told him that he looks almost like he would come from a middle eastern country--there are quite a few patients here from Lebanon and such. His skin is dark brown and sloughing off in spots. This makes it very splotchy and will continue to come off for some time. This is a result of the radiation he received back in June. Some of the extra hair growth is from the medicine he was on called cyclosporin. Some of the hair will also come off, mainly the fuzz on his ears and cheeks.
Robert is doing well. He continues to have low wbc, however, on Tuesday we seemed to get the word as to what is the cause of the immuno suppression. Robert tested positive for the herpes virus I mentioned earlier. We received this news on Tuesday. It takes several days to get the results from the specific test for this. The doctor was so thrilled to get this result. Mainly because it makes sense of all the things that were going wrong for Robert and answers alot of questions for them. He says that this is the best case scenario for Robert's lack of wbc. It is the easiest to specifically treat and can be taken care of. I guess the treatment is easy for them, and in the grand scheme of things we know it is a blessing that this is the cause of all the close calls of last week. What it does mean for Robert is lots more time in the medicine room. He must be there by 8am every day. So far he has been there for 6-7 hours each day...and than he must return in the evening for the nightly dose. This new anti-viral he must be on is infused over 1.5 hours and is so toxic that it can only be done in the medicine room, and requires him to be on extra IV fluids to protect his kidneys. So, after being in the medicine room all day for about 6 hours, he must return from 9-11pm every night. They anticipate this schedule to remain for at least two weeks. Robert is also now on an additional antibiotic that must be given 3 times a day and keeps us up until at least midnight to flush, administer, and flush and clamp his lines. So, Robert does not have to take the one medicine that we have gotten so good at hiding in stuff...but, he is still on a great deal of meds and it is quite complicated! Robert takes at this point the following meds: caspefungin(antifungal), vancomyacin(antibiotic), amlodipine(blood pressure), foscarnate(antiviral), flagyll(for c-diff), nystatin(antifungal for the mouth), protonics(serious antacid), every Monday he gets IVIG, and monthly he gets another antibiotic...many of these meds are at least 3 times a day...Needless to say, it keeps us busy!
Jeff and I are so grateful that they were able to find out that Robert has this virus. The type of herpes virus that Robert has is one that is commonly found everywhere...basically, there is no way to find out where or when or how he got it...we are so fortunate to know that it is that. Many viruses will test negative, when they are actually active in the body and undetected, so the doctor feels like we got " lucky" by finding out what it is. I cannot express to you all the huge collective sigh of relief that was let out by all the bone marrow transplant staff when they learned of this...truly, they were all so panicked last week when it looked to them like Robert was relapsing, or losing his graft. Our social worker acknowledged to me the power of prayer and prayers answered. We truly believe and know that is what happened...the doctors are still considering giving Robert a "boost" of marrow to help get him stronger, but they are not certain of when or if.
It is so strange for me to be back here in Memphis. I must confess, I have "informed" Jeff, my native Memphisian husband, that I do not ever plan to take up residency here...if I do, I must have a driver or something to get me around town! I felt like I was in a bit of a daze this morning and I was very slow to move and get going. Once I stepped foot back into St. Jude, it all came back to me. The feeling of being in a good place, a place that is special to my child and is filled with people committed to the healing and curing of cancer in children. It will be slightly more difficult to stay as focused on this place now that I have so much going on in my mind of home...but, I know this is the best place for Robert, and it is crucial to stay so focused and strong to get him well. Even now as he tries to get some rest before heading back for more meds, he is flirting with a fever and is feeling so sick to his stomach. Even now, he may be re-admitted to the floor...it is a vicious cycle for now...for now, we are focused on helping Robert. Our children find such comfort in having both Jeff and I with them. I love the fact that Jeff and I are able to handle things as individuals, but it is clear that our children function best when we are together with them as a team, a united front.
In lieu of this constant back and forth to the medicine room, Jeff and I are trying to figure out how in the world I will manage with Matthew here after he goes on home for a bit next week. It will be a challenge keeping him occupied while constantly in the medicine room...we shall see. Matthew is a very happy, go-lucky kind of child who is not one to complain about the situation.
I am happy to report that I saw my Lebanese friend today. I was so happy to hear that her young daughter (she was the one who was in transplant at the same time as Robert) is doing quite well. This young child suffered for weeks with the constant bleeding from hemmorragic cystitis--Robert was afflicted with this, but only for a week. The bleeding from her bladder has stopped and she is doing so well. She has not had to be re-admitted this whole time! I was so glad to hear that...unfortunately, my dear friend shared with us that they were robbed yesterday while she was here at the hospital! Can you imagine!!! Jeff and I were so shocked. My friend shared that when they returned home about 1:45 in the afternoon they saw the house had been broken into. They stole their TV, vcr, stereo, new clothes for the children, and some new toys her daughter had gotten as gifts! She told us that the intruders left two large knives in the house and that the police took them for evidence. I could not believe this. I told her they must watch the house and know that she leaves every day to come to the hospital with her daughter. Her other children were at school. She expressed to us how scared she was and did not care about the loss, all that mattered were her children were all well. They took some cash, and a watch of hers as well. I cannot imagine. They are so far from home, a home they were forced to flee not only because of their child's cancer, but for political stuff as well. She takes a shuttle everyday to and from the hospital to get her daughter well. And to come home to this...Jeff and I are going to figure out a way to try to help them, we have called another family in the area that knows them to see if there is something that can be done for them...
We are so blessed by all of you, by our church, our family and friends, by strangers, bikers, neighbors, teachers, and organizations...so many people that have reached out to our family in this time of crises...we feel like the least we can do is try to help this family during their time of crises...it was so good to see my friend's smile, to know her daughter is doing well--to see her standing strong welcoming me back!
I do hope I did not confuse with all the explanations of Robert's meds...I mean I am pretty confused at this point! It will take me a couple of days to sort it all out...thank you for praying for my safe trip. Thank you for checking in on Robert...Peace to you and God bless you! Kathy
Monday, September 16, 2002 at 08:05 PM (CDT)
Hello All, It's Jeff doing the honors tonight as Kathy has packed her bags, loaded up the van and after a terrible two hour wait at the local Ford dealership(with no results), started on her way back to Memphis.
It is amazing the resolve of a woman on a mission. Kathy's mission is to get back to see her boy. Please keep her in your prayers as she travels. Our son Matthew is along for the ride but from what I hear they don't let five year olds drive. Now, I'm not to sure about Mississippi but.......
Well, I know that Kathy is just glad to have someone to keep her company and Matthew is the perfect guy for the job. He simply adores his mother. I totally agree with his line of thinking.
Well, as for Robert and I, we have spent our first day of freedom back at the hospital. We usually spend anywhere from 2-5 hours in the clinic( Soooo much fun as many of you know who have kids surviving cancer). Today, we were lucky as Robert did not need any blood products, but we still managed to be in clinic from 8:30 to about 3:30. Unfortunately for Robert, there are too many things to take by I.V. and this requires time. But hey, we've got plenty of time. The last couple of weeks it is all Robert and I have wanted; that is, to be able to spend time in clinic and be able to go home at night. The long days in clinic are manageable as long as we get to go home.
I wanted to tell my girls that Robert and I are missing you terribly. I can't wait to get home and spend some time with Ms.Jessica and little Ms.Christina. They have been on my mind for awhile now. I hope they are as excited to see me as I am to see them. Just one more week girls.
Well, hope all is well with all of you that check up on us daily. I pray God continues to bless you and to look after your families as you look after mine.
Love to all,
Jeff
Sunday, September 15, 2002 at 09:46 PM (CDT)
Hello friends. I have been busy getting everything lined up for my departure...Good news--Robert is back to outpatient status!! Let's pray those fevers stay long gone, so he can enjoy a bit of freedom. The guys were all situated in the apartment tonight, and sounded quite happy to be there. Robert was hollering in the background while Jeff and I were talking on the phone...he wanted me to know that Jeff was baking him chicken for dinner! Very good to hear he is enjoying eating more and more.
Now the drill of daily trips to the medicine room start up again. Tomorrow will be a long day there for the guys. Probably at least 5 hours; Robert will need a transfusion of red blood by tomorrow. This is in addition to the other meds they are giving him daily by IV. Robert is anxiously awaiting mine and Matthew's arrival in Memphis. We are so excited to get there...it will be a long drive, I am sure Matthew will be very good company and keep me talking for the trip.
The girls are all situated and anxious for their Dad to be home soon. Jeff is planning on heading to West Palm next week sometime. It should be interesting , to say the least, to hear of the stories that the adventures of Dad and his 2 girls unwinds. This is a first for Jeff...to be just him and the girls for more than a few hours on an outing...it will a learning experience for all involved...I hope he is getting in touch with his feminine side as we speak!! :) We are definitely one of those families where the "boys will be boys", and the "girls will be girls!"
I am trying to get myself mentally ready for getting back into St. Jude mode. It is certainly a place that requires your undivided attention. When you are there, there is no other place in the world, you just stay so focused on your task at hand...
Yesterday, Jeff shared the news with me about 2 of the patients we had known while Robert has been there. Two young men who lost their battles with their disease. One lost his battle against leukemia...he had fought for so long, and endured 3 transplants. He started out there as a teen, and died there a young man, at 22. The other was a boy that was inpatient the same exact time as Robert. He was one of 8 children in his family. His battle was against a rare type of cancer called Burkett's. He was 9 yrs. old. Something Jeff shared with me, that I cannot shake from his account, and I know is permanently etched in his memory, was his last words to this family as they packed up there son's belongings and were leaving the unit. Jeff shared how he touched the baby's head as her big sister held her in the wagon, and how he hugged Mom goodbye; but what struck him most was what he felt as he shook the Dad's hand goodbye. This young boy's father is a man of strong stature, a man who makes a living working the land, much like Jeff. Though not a landscaper, a farmer. As Jeff shook this father's hand, he said he felt it quiver in his...he said he felt the pain in his handshake that he knew was a pain that this father would live his life sharing with no one...Jeff literally could feel his pain in his strong hand...Jeff said he had to look away, because he knew he might break down...
This family lost there son last week. On early Saturday morning...For us, last week proved to be one where we, Robert, received word that he is still fighting strong...that we, Robert, do not have to think of leaving there without him. These parents did not get such a reprieve...and yes, our hearts are broken for them and our prayers for their continued courage to go on endures...
God bless you and may peace and love dwell in your hearts and minds,
Kathy
Friday, September 13, 2002 at 07:39 PM (CDT)
Hello there. How strange to think that it is Friday the 13th today...I am so glad that I have never been one to follow superstitions. Actually, I am the type to sort of defy them...big surprise, right!
You all will be glad to know that Robert is doing well. He is feeling much less sore from the bone marrow aspiration the other day. It was actually quite painful for him, as they needed to actually pull out a piece of the bone for sample. Robert ended up with a bit of a temp. last night. So, the doctors have decided to keep him in for a couple more days. Just in case. Already he is recovering from the C-Diff virus that he is also being treated for. One of the two tests that must be negative, is already negative.
Dr. Horwitz came up to check on Robert and let Jeff know that everything still looks good, and that he is so pleased with the way things are going with Robert. Robert's wbc went UP from .7 to .9 today. Hey, at least they are moving in the right direction. Robert continues to feel good, and is eating and being in good spirits...he too is so relieved that things are fine with his marrow. Dr. Horwitz said that he had not heard about the contact with the donor. They have already drawn the blood for the T cell testing and we should know something in a couple of days...remember, it is crucial that the T cell amount of donor cells be at 100% like the other blood cells are. This would again re-affirm that everything is on track.
Just what we are expecting to hear!!!
I will be very busy getting ready to leave this weekend, and will keep you all posted with any news...
Thank you for checking in, we do love it!! Please, if you think of it, or have a chance...drop Robert a line in the mail, just send it to the hospital address on the bottom of the page...he does love mail, and he has been in the hospital now for about 3 weeks straight...after his initial 8 week stay!!!
God bless you, and Peace my friends, Kathy
Thursday, September 12, 2002 at 09:02 PM (CDT)
Dear faithful friends who have waited so patiently for the update...truth be told, I did 4 different entries from last night and today and none of them posted!!! OH Well!!
But, there is GOOD NEWS!! 1) the Bone Marrow test definitely shows NO SIGNS of leukemia!!! they did not expect to see any, since the preliminary from yesterday showed none 2) There is no evidence of any viral infection, of course there still may be one, these little suckers are very hard to track down. (For the record, there is also, no evidence at all of bacterial infection) 3) MOST IMPORTANT! Robert's graft is holding on!! He is NOT losing his graft at this point. After the initial analysis of the marrow yesterday, the doctor fully expected the marrow's evidence of "healthy making cells" to be less than the were at the Day 27 marrow check; they are either the SAME, or a little less. This is acceptable, and good. It does not mean the marrow is failing. Keep in mind that it is a less than 1% chance of graft failure...leave it to Robert to pick the least possible thing to have happen to make us all stand on our heads!!! With that in mind, we are fully expecting that marrow to jumpstart and get kicking butt!!! Enough messing around, get it in gear, he needs those WBC.
Considering all of this, the doctors are watching this child like a hawk even closer now. They will be doing a test specifically looking at his T cells in his blood. The periphial blood that they have been testing that is showing 97-100% donor cells may not be accurate. They are going to isolate about 2 million T cells to test them and see how much donor cells they register. If they do not jive with the other registering of blood cells, then they have to look at graft rejection....another wild beast in this picture!!! At that point they have to look into other options. They are definitely moving ahead with getting more marrow from the donor. They are anticipating needing to give Robert a boost if his marrow does not kick in, and stays at this point for much longer. This means they will not wait to do a bone marrow test too long. They are going to be aggressive in dealing with this so that Robert's graft stays stable.
As Dr. Horwitz would say, "Is Robert out of the woods?, No, not entirely..." He almost always anticipates my next question. That is why I like him so much. He is always a step ahead of me...that is not always easy to do, I may not be the sharpest tool in the shed, but, I definitely know how to ask questions.
So, email me if you have any questions for me, or would like me to clarify any of this...I am so exhausted, just from the strain of the past couple of days. I cannot wait to see my guys!!! I better start packing!
Your outpouring and faithfulness to stand in the gap with us never ceases to amaze me, and our family. Keep those messages coming, and I am so sorry for not being able to get word to you earlier...I did not realize the page did not update until a few phone calls into the morning...Thank you for calling to check on me and Jeff. We have for the moment let out a big sigh of relief...Robert has dodged yet another "bullet" so to speak...this whole flirting with disaster stuff must stop young man!!! Your gonna give me grey hair!!!
Oh, and I hear Robert is growing hair back!! I am off to get some rest after I do some laundry, clean up the kitchen and put the kids to bed.
I am so grateful to our Lord that He has chosen to continue to show us that He is completely in control of each and every moment of this whole thing...down to the very fibers of tiny hairs on the top of Robert's head!
Thank you dear friends, for checking in. I will be in touch, and keeping the Faith that we are on our way to bringing Robert home.
Peace to you and yours...Kathy
Thursday, September 12, 2002 at 07:50 PM (CDT)
This is a test and only a test...
Thursday, September 12, 2002 at 07:50 PM (CDT)
This is a test and only a test...
Thursday, September 12, 2002 at 06:42 PM (CDT)
Hi everybody,,,, Its Jeff. We seem to be having trouble with the page. Kathy has been trying to update since Tues. with no luck. Hopefully this will show up on the page and an actual update will follow.
Tuesday, September 10, 2002 at 07:18 PM (CDT)
Hello friends.
What a day! Robert is feeling great. Jeff reports to me that for the record Robert is eating very good these days. That is a very good thing. His spirits remain upbeat and is ready to get out of the hospital. Nothing like feeling great and having no fevers and being cooped up in the hospital. Poor kid. At this point, he must remain in the hospital until his ANC gets up to 1500. So far it is hovering around 1000. His lab work is all good. With the exception of his white blood cell count. It continues to be too low. They have been giving him the wbc booster, GCSF, and it continues to not respond at all. On Sunday it was at 1.4; and after two days of the boost, it is now at 1.3. Obviously, this is not going in the right direction at this time. So here is the game plan for our boy Robert: Wed., CT scan of sinuses and chest and lungs; on Friday, a bone marrow aspirate to look specifically for 3 things; 1. If the marrow is normal? A little vaque for me; 2. If there is an imbalance between what his blood levels show to be the amount of actual donor cells in the marrow, a clearer picture if he needs to get a boost from more marrow. 3. Any early indication of a possible relapse. The third thing they are looking for, they say, is highly unlikely and they absolutely do not feel that this is what is going on. But, they will look for it, because there is something they can do to fight any early signs of relapse. They sent the blood sample off for testing for the specific herpes virus. Jeff clarified to me today that the docs said that this is a "common" (as opposed to "uncommon" like I thought) problem for many kids. It is not the herpes simplex strain, sorry for the misinformation...we are not sure of which strain of the virus, herpes comes in many forms and lies dormant in almost everyone's body. The lab results will be back in 5 days. The lab results from Friday's bone marrow test will not come back until almost Tuesday...as a dear friend noted on his webpage, we just love waiting over the weekend for lab results...nothing like torturing us parents further!!! It is all a very cruel twist to an already cruel situation.
So, that is the status for our sweet Robert! He will be glad to know I am as we speak making plans to get back to him soon...We have come to a decision about the living arrangements for the other children. Our sweet Jessica will be going to stay with my Aunt...more like my sister, over in Bradenton. I hope to enroll her in sort of a hospital homebound type of program so that she does not have to withdraw from her school. After much discussion and heart wrenching days, we feel this is the best choice for her at this time...as she told me tonight, it is just too sad for her to be here right now...I have tried to express to Jeff how terribly our children miss Robert. They talk about him all the time. I know how much they want to have him home, and this whole nightmare to be over...I also have realized that we have definitely managed to raise some very intelligent, loving, very strong children. This is getting more and more difficult at this point for our family to be separated like this. But, for Jess, it is the hardest. No matter where she goes and what she does it overshadows everything for her...making school very difficult and coping with emotions even harder. Sometimes being the oldest is just the pits. She definitely takes matters to heart very deeply and her high intelligence does not create a bliss that sometimes being little exists when you do not fully comprehend the parameters of a situation...in plain words, besides the obvious pain in the rear that having to sweat the small stuff, like loss of income, paying bills, dealing with crazy people as you drive down the road, or crazy people in your driveway saying your dog bit them...this is tough stuff! Heart-wrenching, get your kleenex out, it is gonna be a long night kind of stuff...
As I quoted at the top of the page...I want my children to not be afraid, to have courage, to see their prayers answered and know that more than anything else in this world, God loves them and IS in control of all these things and more...Thank you for stopping in and checking up...there are some "bumps" in the road for Robert right now that God is going to have to smooth out...He hears all the prayers, and right now, Robert NEEDS those WBC more than ever...COME ON GUYS--get moving!!!!!
God bless you, and as we reflect on the many losses that the anniversary of Sept 11th reminds us of, may we look to God for strength, courage, and wisdom to live...Love to you all dear friends, Kathy
Thursday, September 12, 2002 at 02:37 PM (CDT)
Okay, guys you know what they say...fourth time is the charm, since the second and third time did not POST!!!!
Robert is fine, and feeling well. The bottom line is that his graft is failing. His wbc keep dropping. Good news is that there is NO evidence of cancer in his marrow at all!!! There is also no evidence of a viral infection going on...he is simply not producing enough of the cells he needs, and it is going down, fast...
They have already contacted the donor center to request more marrow for Robert. They will do a re-infusion as soon as they can, with the hopes of jump started the graft.
I will be back tonight with all the particulars and the final word from lab results that are coming back this afternoon.
Wanted a brief update for those who check their computer before they leave work, etc....
Hang tight, Kathy
Tuesday, September 10, 2002 at 07:18 PM (CDT)
Hello friends.
What a day! Robert is feeling great. Jeff reports to me that for the record Robert is eating very good these days. That is a very good thing. His spirits remain upbeat and is ready to get out of the hospital. Nothing like feeling great and having no fevers and being cooped up in the hospital. Poor kid. At this point, he must remain in the hospital until his ANC gets up to 1500. So far it is hovering around 1000. His lab work is all good. With the exception of his white blood cell count. It continues to be too low. They have been giving him the wbc booster, GCSF, and it continues to not respond at all. On Sunday it was at 1.4; and after two days of the boost, it is now at 1.3. Obviously, this is not going in the right direction at this time. So here is the game plan for our boy Robert: Wed., CT scan of sinuses and chest and lungs; on Friday, a bone marrow aspirate to look specifically for 3 things; 1. If the marrow is normal? A little vaque for me; 2. If there is an imbalance between what his blood levels show to be the amount of actual donor cells in the marrow, a clearer picture if he needs to get a boost from more marrow. 3. Any early indication of a possible relapse. The third thing they are looking for, they say, is highly unlikely and they absolutely do not feel that this is what is going on. But, they will look for it, because there is something they can do to fight any early signs of relapse. They sent the blood sample off for testing for the specific herpes virus. Jeff clarified to me today that the docs said that this is a "common" (as opposed to "uncommon" like I thought) problem for many kids. It is not the herpes simplex strain, sorry for the misinformation...we are not sure of which strain of the virus, herpes comes in many forms and lies dormant in almost everyone's body. The lab results will be back in 5 days. The lab results from Friday's bone marrow test will not come back until almost Tuesday...as a dear friend noted on his webpage, we just love waiting over the weekend for lab results...nothing like torturing us parents further!!! It is all a very cruel twist to an already cruel situation.
So, that is the status for our sweet Robert! He will be glad to know I am as we speak making plans to get back to him soon...We have come to a decision about the living arrangements for the other children. Our sweet Jessica will be going to stay with my Aunt...more like my sister, over in Bradenton. I hope to enroll her in sort of a hospital homebound type of program so that she does not have to withdraw from her school. After much discussion and heart wrenching days, we feel this is the best choice for her at this time...as she told me tonight, it is just too sad for her to be here right now...I have tried to express to Jeff how terribly our children miss Robert. They talk about him all the time. I know how much they want to have him home, and this whole nightmare to be over...I also have realized that we have definitely managed to raise some very intelligent, loving, very strong children. This is getting more and more difficult at this point for our family to be separated like this. But, for Jess, it is the hardest. No matter where she goes and what she does it overshadows everything for her...making school very difficult and coping with emotions even harder. Sometimes being the oldest is just the pits. She definitely takes matters to heart very deeply and her high intelligence does not create a bliss that sometimes being little exists when you do not fully comprehend the parameters of a situation...in plain words, besides the obvious pain in the rear that having to sweat the small stuff, like loss of income, paying bills, dealing with crazy people as you drive down the road, or crazy people in your driveway saying your dog bit them...this is tough stuff! Heart-wrenching, get your kleenex out, it is gonna be a long night kind of stuff...
As I quoted at the top of the page...I want my children to not be afraid, to have courage, to see their prayers answered and know that more than anything else in this world, God loves them and IS in control of all these things and more...Thank you for stopping in and checking up...there are some "bumps" in the road for Robert right now that God is going to have to smooth out...He hears all the prayers, and right now, Robert NEEDS those WBC more than ever...COME ON GUYS--get moving!!!!!
God bless you, and as we reflect on the many losses that the anniversary of Sept 11th reminds us of, may we look to God for strength, courage, and wisdom to live...Love to you all dear friends, Kathy
Tuesday, September 10, 2002 at 07:18 PM (CDT)
Hello friends.
What a day! Robert is feeling great. Jeff reports to me that for the record Robert is eating very good these days. That is a very good thing. His spirits remain upbeat and is ready to get out of the hospital. Nothing like feeling great and having no fevers and being cooped up in the hospital. Poor kid. At this point, he must remain in the hospital until his ANC gets up to 1500. So far it is hovering around 1000. His lab work is all good. With the exception of his white blood cell count. It continues to be too low. They have been giving him the wbc booster, GCSF, and it continues to not respond at all. On Sunday it was at 1.4; and after two days of the boost, it is now at 1.3. Obviously, this is not going in the right direction at this time. So here is the game plan for our boy Robert: Wed., CT scan of sinuses and chest and lungs; on Friday, a bone marrow aspirate to look specifically for 3 things; 1. If the marrow is normal? A little vaque for me; 2. If there is an imbalance between what his blood levels show to be the amount of actual donor cells in the marrow, a clearer picture if he needs to get a boost from more marrow. 3. Any early indication of a possible relapse. The third thing they are looking for, they say, is highly unlikely and they absolutely do not feel that this is what is going on. But, they will look for it, because there is something they can do to fight any early signs of relapse. They sent the blood sample off for testing for the specific herpes virus. Jeff clarified to me today that the docs said that this is a "common" (as opposed to "uncommon" like I thought) problem for many kids. It is not the herpes simplex strain, sorry for the misinformation...we are not sure of which strain of the virus, herpes comes in many forms and lies dormant in almost everyone's body. The lab results will be back in 5 days. The lab results from Friday's bone marrow test will not come back until almost Tuesday...as a dear friend noted on his webpage, we just love waiting over the weekend for lab results...nothing like torturing us parents further!!! It is all a very cruel twist to an already cruel situation.
So, that is the status for our sweet Robert! He will be glad to know I am as we speak making plans to get back to him soon...We have come to a decision about the living arrangements for the other children. Our sweet Jessica will be going to stay with my Aunt...more like my sister, over in Bradenton. I hope to enroll her in sort of a hospital homebound type of program so that she does not have to withdraw from her school. After much discussion and heart wrenching days, we feel this is the best choice for her at this time...as she told me tonight, it is just too sad for her to be here right now...I have tried to express to Jeff how terribly our children miss Robert. They talk about him all the time. I know how much they want to have him home, and this whole nightmare to be over...I also have realized that we have definitely managed to raise some very intelligent, loving, very strong children. This is getting more and more difficult at this point for our family to be separated like this. But, for Jess, it is the hardest. No matter where she goes and what she does it overshadows everything for her...making school very difficult and coping with emotions even harder. Sometimes being the oldest is just the pits. She definitely takes matters to heart very deeply and her high intelligence does not create a bliss that sometimes being little exists when you do not fully comprehend the parameters of a situation...in plain words, besides the obvious pain in the rear that having to sweat the small stuff, like loss of income, paying bills, dealing with crazy people as you drive down the road, or crazy people in your driveway saying your dog bit them...this is tough stuff! Heart-wrenching, get your kleenex out, it is gonna be a long night kind of stuff...
As I quoted at the top of the page...I want my children to not be afraid, to have courage, to see their prayers answered and know that more than anything else in this world, God loves them and IS in control of all these things and more...Thank you for stopping in and checking up...there are some "bumps" in the road for Robert right now that God is going to have to smooth out...He hears all the prayers, and right now, Robert NEEDS those WBC more than ever...COME ON GUYS--get moving!!!!!
God bless you, and as we reflect on the many losses that the anniversary of Sept 11th reminds us of, may we look to God for strength, courage, and wisdom to live...Love to you all dear friends, Kathy
Tuesday, September 10, 2002 at 07:18 PM (CDT)
Hello friends.
What a day! Robert is feeling great. Jeff reports to me that for the record Robert is eating very good these days. That is a very good thing. His spirits remain upbeat and is ready to get out of the hospital. Nothing like feeling great and having no fevers and being cooped up in the hospital. Poor kid. At this point, he must remain in the hospital until his ANC gets up to 1500. So far it is hovering around 1000. His lab work is all good. With the exception of his white blood cell count. It continues to be too low. They have been giving him the wbc booster, GCSF, and it continues to not respond at all. On Sunday it was at 1.4; and after two days of the boost, it is now at 1.3. Obviously, this is not going in the right direction at this time. So here is the game plan for our boy Robert: Wed., CT scan of sinuses and chest and lungs; on Friday, a bone marrow aspirate to look specifically for 3 things; 1. If the marrow is normal? A little vaque for me; 2. If there is an imbalance between what his blood levels show to be the amount of actual donor cells in the marrow, a clearer picture if he needs to get a boost from more marrow. 3. Any early indication of a possible relapse. The third thing they are looking for, they say, is highly unlikely and they absolutely do not feel that this is what is going on. But, they will look for it, because there is something they can do to fight any early signs of relapse. They sent the blood sample off for testing for the specific herpes virus. Jeff clarified to me today that the docs said that this is a "common" (as opposed to "uncommon" like I thought) problem for many kids. It is not the herpes simplex strain, sorry for the misinformation...we are not sure of which strain of the virus, herpes comes in many forms and lies dormant in almost everyone's body. The lab results will be back in 5 days. The lab results from Friday's bone marrow test will not come back until almost Tuesday...as a dear friend noted on his webpage, we just love waiting over the weekend for lab results...nothing like torturing us parents further!!! It is all a very cruel twist to an already cruel situation.
So, that is the status for our sweet Robert! He will be glad to know I am as we speak making plans to get back to him soon...We have come to a decision about the living arrangements for the other children. Our sweet Jessica will be going to stay with my Aunt...more like my sister, over in Bradenton. I hope to enroll her in sort of a hospital homebound type of program so that she does not have to withdraw from her school. After much discussion and heart wrenching days, we feel this is the best choice for her at this time...as she told me tonight, it is just too sad for her to be here right now...I have tried to express to Jeff how terribly our children miss Robert. They talk about him all the time. I know how much they want to have him home, and this whole nightmare to be over...I also have realized that we have definitely managed to raise some very intelligent, loving, very strong children. This is getting more and more difficult at this point for our family to be separated like this. But, for Jess, it is the hardest. No matter where she goes and what she does it overshadows everything for her...making school very difficult and coping with emotions even harder. Sometimes being the oldest is just the pits. She definitely takes matters to heart very deeply and her high intelligence does not create a bliss that sometimes being little exists when you do not fully comprehend the parameters of a situation...in plain words, besides the obvious pain in the rear that having to sweat the small stuff, like loss of income, paying bills, dealing with crazy people as you drive down the road, or crazy people in your driveway saying your dog bit them...this is tough stuff! Heart-wrenching, get your kleenex out, it is gonna be a long night kind of stuff...
As I quoted at the top of the page...I want my children to not be afraid, to have courage, to see their prayers answered and know that more than anything else in this world, God loves them and IS in control of all these things and more...Thank you for stopping in and checking up...there are some "bumps" in the road for Robert right now that God is going to have to smooth out...He hears all the prayers, and right now, Robert NEEDS those WBC more than ever...COME ON GUYS--get moving!!!!!
God bless you, and as we reflect on the many losses that the anniversary of Sept 11th reminds us of, may we look to God for strength, courage, and wisdom to live...Love to you all dear friends, Kathy
Monday, September 09, 2002 at 07:34 PM (CDT)
Hi friends. Well, we I managed to get the kids up and out the door for school. Nothing short of a miracle around here!
I did not get an update from Jeff until almost 2:30pm today...I had tried to call him, but got no answer, and I did not want to keep calling in case Robert was sleeping. He finally called me back and said, everything is fine with Robert. I said, well, please do not leave me in suspensse and just let me know!! He said he would...it seems like even when a day appears that it should go along rather smoothly without any glitches, the strangest things can crop up. So for me, "no news is good news," does NOT apply...I like any news. Jeff reported that Robert has held onto his platelets and red blood that he received on Friday, and Saturday. This is all good. The doctors are pleased to know this, and that all of his lab work looks very good...the kicker is, that for some "odd" reason, don't you love the technical terms doctors use, Robert's white blood cells, are not rebounding as they should. Robert has been receiving a boost for this daily, it is called GCSF. It is what I have told you about that is supposed to boost his ANC, nutrophil count. Well, for some completely unknown reason it is not. His wbc count went from 1.7; to 1.6 since Sunday. The doctors have ordered a CT scan of his sinuses on Wed. to look for any sign of infection, or fungus. However, now they want to do an entire body scan. Also, they are planning on doing a bone marrow aspiration on Thursday, and actually culturing the marrow to see if it is the source of a virus or other infection. There is a possibility that this situation is a result of a type of herpes simplex in his system. It is, so they say, "uncommon", to see, but a real possibility. It could be a result of a transfusion, it is the type of herpes that lies dormant in most of us at any given time. Due to the abnormality of a lack of wbc, the doctors have decided to keep Robert as an inpatient until his ANC is at 1500. It is not there at this point. They have agreed to raise the standard of a fever for admittance, but, will not release him without the ANC, too risky! So, what does all this mean exactly...apparently no one really knows...for all you nurses who read this about our boy Robert, I am sure you know how he never has responded to treatment in the "normal" fashion. We are so grateful that he is in a place that has many "experts" who can come together and search out a resolution. There may not be a solid conclusion for this ever...it may just be the way Robert's body works. I know for Jeff and I, having to have Robert receive an unscheduled bone marrow aspirate is a bit unsettling. Any parent who has to face those knows that putting your child under general anethesia for this is a bit of a risk in itself. I am sure Robert will beat his last record of counting, and do something ridiculous to put us all at ease.
So, for now, Robert remains in the hospital. He may get a day out tomorrow, and then do the scans outpatient, and bone marrow outpatient...if he gets a boost from the GCSF. We, really Jeff, have stopped counting the days Robert has been inpatient. I know it is not a record compared to many children, but, for Robert it is. He was so blessed to have hardly any "extra" hospital stays while on treatment. Robert is keeping his spirits up, and does not sound the least bit anxious. Today, while I spoke with Jeff on the phone, I could hear this loud moan kind of sound over the intercom from Robert's room. Jeff was startled and said hang on, Robert is making some strange noises...Jeff buzzed in the room and said " hey bud, what's going on, are you alright?" Robert said, I was just yawning Dad! Okay, so we are getting a bit edgy...needless to say, Jeff was on his way to get a massage for his very achey back and neck tonight at the apt. complex. I hope he was successful. I think the main reason the guys want me back up there is for back scratches.
We are praying for some sort of resolution. Jeff and I are fully able to be resolved to have no true resolution as long as nothing serious is wrong. Obviously, Robert needs those wbc to get their act together! They will decide about infusing more marrow after they see it up close and personal.
We had a very busy afternoon around here...grand central style. I had a visit from some dear friends from the Kravis Center with bags of goodies from the bakery where the wife works...(yes, Jeff, there was chocolate in there and I am getting FAT). Then another neighbor, who just returned from a trip home to Europe, came over to get all the info about Robert to make a blood donation for him. I was very touched to receive these warm greetings, so unexpected and wonderful to receive. Thank you. Unfortuanately, I also receive a call from our local animal care and control...about our beloved Angel, the dog (not my beloved at the moment). She "supposedly" bit a young man who was riding his bike in front of our house the other day. Needless to say, she is going to be put under quarantine somewhere for 10 days. Even Jeff begged me not to ship the dog out...he even said she is not like the cats to just give away...I keep reminding her that she is at the bottom of the totem pole, and that she could be replaced...fun all around to be had by all at the Charlton household. Poor Robert, Angel is his baby, and I need to keep her in check until he returns. Anyone know any vets that will quarantine a dog for 10 days for cheap? Shari, I think Domino needs a little sister!
Thank you for checking in, and remembering us in your prayers and thoughts.
Lord bless you and bring you peace in your hearts and minds. Kathy
Sunday, September 08, 2002 at 07:20 PM (CDT)
Hello friends. Heading off to another good week ahead.
We are feeling much more assured at this point about the situation with Robert's marrow and engrafment. Jeff informed me today the last test they did on his periphial blood which measures the amount of donor cells in his body, showed them to be at 100%. This is the first time they measured with certainty at this level. They may not stay at this level, they can go down a bit, but, at least they got there!! Robert is still in the hospital. Jeff put the question to the doctor today about this going back and forth from the fevers. Robert's fevers are pretty much considered low, but not normal. They have not spiked past 103 since the first instance two weeks ago. Dr. Hale said that they were discussing raising the degree level for needing to admit him considering they know what is going on, and not going on. When Robert steps foot into the medicine room in the mornings, if he registers a temp of 100.5 or greater, even if it goes down immediately, he is being admitted. It is an obvious side effect at this point in the game, because of the low ANC level and such. I do hope for Jeff's sake, and Robert's anxiety level, they do raise the mark. Robert's wbc is not as low, he is getting the gcsf, and it is helping. They are planning to do another CT scan of his sinuses this Wed. Just to make sure there is nothing in there, ie., a spot of fungus. I hope that Jeff is able to work out a schedule of taking Tylenol to help keep the slight fevers at bay. Also, when Robert gets blood products his temp goes up a bit, another common problem.
I will say this, I am so glad to hear that Robert is easing into the course of treatment for him. I can tell by his voice that the anxiety of having to go "back"-in is lessening. He seems so afraid, he is very afraid of having to go to the ICU, even though this is also very common. It is all part of the transplant world. It is a strange version of "Bizzaro World" as I have come to call it. Also, Robert is finally feeling comfortable and letting himself get close to his nurses and have some fun.
I have informed our oldest that she must keep trucking on with school, and go to school. This weekend at church some girls who work with the Youth reached out to her, and I can already see it will be a wonderful help for her at this time. The little ones, well, as long as they have plenty of hugs and are in a safe place, they seem to be coping. I still have not decided about who will be returning with me. Jeff and I need to work out the particulars of him flying home after I return...I received word from my oldest boy that he is definitely ready for me to return! He has sent word that the other kids just have to deal with it, because he wants his Mom too! Good for you Robert, tell them like it is...I will stay here this week, and plan to head up sometime next week. I do not plan to return home until I get to bring my son home...
Thanks for checking in, and take care--have a great week!
Peace friends, Kathy
Saturday, September 07, 2002 at 08:56 PM (CDT)
Hello friends...I have come to appreciate so much days like Saturday, and Sunday. I think Saturday is my new favorite day, with Sunday running a close second...I have finally come back to the place in my life when I cannot wait to get to church on Saturday night. My children enjoy it, and I am so happy to be getting taught again from God's Word. Sunday is my second favorite day because it is usually the only day of the week that we all have a chance to chill out and wake up slowly and enjoy time doing nothing...a real day of rest (until about noon that is). These are two of the finer things in life that I look so forward to enjoying when we are all back home safe and sound...
Jeff called me first thing this morning...from the sound of is very tired voice I could have guessed that Robert had another long night of fevers and ended up back in the hospital...indeed, they are back there for round 3, or 4! Since I left them two weeks ago...Robert has been out of the hospital only about 3 nights, I would say days, but his days are spent there anyway. Jeff did not say that Robert flipped out this time. Jeff is pretty tired of the back and forth. He feels it is a bit ridiculous at this point. He is like either keep the child inpatient, or realize this is just a side effect of everything else and let it ride...we are grateful that they are being very conscientious, however, the going back and forth is wearing Jeff out, he would rather stay put. The wonderful news is that Robert's platelets only dropped to 8,000 and they had received some during the night for him. So they pumped him up full of platelets before they expired this evening...thank you Lord. Also, Jeff says that Robert is now eating while in the hospital. I guess his moratorium on eating while inpatient got the best of him, and he finally found something he could hold down while he is there. The ladies who try to find things the children will eat are amazing--Thank you ladies! They go the extra mile searching, cooking, grocery shopping to get whatever they request. The guys spirits sounded pretty good and I am confident they will hang on...
One of my favorite Bible stories came to life for me tonight in a new way. It is a story from the New Testament. It is a story of one of the miracles of healing Jesus did. It is the story of the paralytic whose friends ripped the roof off of the house where Jesus was to lower him down to receive a healing from Jesus. The story goes that Jesus saw the faith of these friends and healed the man. This has always been precious to me when I prayed for friends and others needs...the power of the prayers and faith of others. Tonight the guest speaker at our church pointed this out...he said he always wondered what the guy whose house with the roof ripped off, thought of having his roofed ripped off! When I heard this, I thought of some dear friends who asked me if I was "okay" with the work on my house when this project for Robert first took shape. I remember telling them, that I had no problem allowing this to go on...and then tonight I realized that what is going on here in our backyard is a testament to the faith of "friends", our church family. They are not cutting a whole in our roof to lower Robert down to the feet of Jesus to be healed, instead they are building up a room for Robert in FAITH believing he will come home to live there. I was so touched as I realized that this step of faith on their part on behalf of Robert is amazing, I believe it must touch the heart of God very much to know that so many have come together on behalf of this boy...every penny received, every prayer, card, every good "well-wishes", every meal, smile, hug...all are acts of faith to help raise the "roof" for Robert to be healed. You all, friends, some of you who do not even know us or our sweet Robert, are willing to stand in the gap for us...to lift us up when we sometimes cannot do it for ourselves.
I pray that as your life continues on, you will be blessed by friends who are willing to go out on a ledge and take you to the place where your heart can be healed, loved, and blessed...For our friends who are continuing in their fight against cancer--Zach, Steven, Cam, Ryan, Mitch, Jessica, Kyle, Israh, Gooch, to name a few--may we as a family help stand in the gap and raise your children up to God, to Jesus for a healing.
"When Jesus saw THIER FAITH, he said to the paralytic, 'Son, your sins are forgiven'" Mark 2:5 Jesus not only healed his sickness, he forgave all his sins...this story is in 3 books in the New Testament, Matthew, Mark, and Luke, I guess it was pretty important.
Much love, and warm regards, Kathy
Friday, September 06, 2002 at 08:55 PM (CDT)
Hello. TGIF! That is for sure...I am hoping to not have to get out of bed before at least 8a.m., that is quite an ambitious goal around here.
With this message I need to give a bit of extra info to fill in some blanks...As you read yesterday, I reported that Robert had held on to his blood levels quite well. It turns out that was a fleeting moment in time. Unfortunately, Robert's lab results were not near as positive today. First thing is that Robert has developed a rather common problem known as C-Diff; this is an intestinal problem from a bacteria which causes diarrhea. Robert will be on an additional medicine for this until it clears up. He has lost about 10 pounds in the last 2 weeks. This is not going to help having this bacteria. Fortunately, it does not effect his appetite...not that there is much there, but it is coming along. Yesterday Robert's hemoglobin level was at 8.6, and dropped to 7.1 today; his platelets were at 27,000 and dropped to 10,000 today. Normal range for his platelets is 140,000-450,000--as you can imagine he was desperately low. They could not even transfuse him today because there were no platelets available that were the right match for him! He will have to get them tomorrow, I guess they expect to have them available at that time...by tomorrow, they will probably drop to around 4,000...very low. At this point a nose bleed could cause serious problems, and is actually a common side effect when you have low platelets. I am sure Jeff will be watching him like a hawk tonight to make sure that Robert does not bite his nails or anything like that! Normal range for hemoglobin is 12.0-18.0; he did get that transfusion today. The kicker in all of this, as if this was not enough, is that his wbc from yesterday dropped from 1.7 to .7 in just 24 hours. Normal range for this is 4.1-10.9. As you can imagine, this means that his ability to fight infection is very low, if simply non-existant; all of these things factor into make for a very low ANC (that is the measure of his nutrophils and ability to fight off infection). The dramatic drop in his wbc actually has the doctor a bit concerned. Jeff said Dr. Horwitz came in to talk with Jeff about these lab results himself...he said that they will put Robert back on the GCSF to help boost his wbc and his ANC, but that he thinks they will need to check his bone marrow again next week. This is not the typical time in transplant for doing this. It will be done because they are concerned about the graft and how well it is actually taking. The plan is, depending on how his marrow looks under the microscope, is that they may need to get more marrow from the donor to give to Robert. If that is the case, Robert will NOT have to go through the same horrific regimen of chemo/radiation again, just get more marrow...Robert's body could not withstand chemo or any other harsh treatment this soon after transplant. His liver and kidney function continues to do well, it is just a bit disconcerting to see that for some reason his wbc is not where it should be at this time, and that his engrafment is not 100%.
Dr. Horwitz has always told us not too worry with the things that have cropped up...he says, that we should not worry that is his job...he has always told us exactly what is going on to the best of his ability, unfortunately, so much of this is absolutely, totally unpredictable by science or anything else. We have never been parents who want to base their hopes on "predictions" anyway. We live by faith, and the facts...Jeff said that Dr. Horwitz is "concerned". Now, guess what, I am concerned...
Thus far I have failed to make a plea for the need for us, people, to make a donation of blood and platelets. I cannot imagine what would happen if Robert was not able to get platelets tomorrow. Platelets take longer to donate, but they are so crucial to a person who needs! We have been asked not to donate specifically to Robert, because we are his parents, and there is something about that issue that might cause a reaction for Robert...but, so many kids in these situations need them. If Robert were to lose a tooth or stub a toe, he might not be able to stop bleeding it is that serious for him at this point. He lost a tooth last Spring and it landed him in the ICU because of low platelets...if he goes into respiratory distress from something while he has low platelets they could not even put a breathing tube in him because he could bleed out...
So, here we have it, white blood cells that won't bounce back; very low platelets that his body will not hold on to; an intestinal bacteria; fevers with an unknown source; major lack of sleep; a very tired Dad, who is doing an amazing job, by the way...what more could you ask for in a day...what a difference a day makes.
Still, I must profess that we are blessed. This week we have experienced generosity from many sources. This week we do not have to worry about those horrible things in life like our bills. Jeff gained a bit of peace about his business life...he has been so concerned about this, but in his heart he has known that no matter what he would not have made a different choice to not be with Robert. We are still trying to sort out the juggling of the other children. Jeff wants me to stay a bit longer and then he will come home for a time...
I am sorry to put all of our issues out there for you to have to absorb...my hope is that in reading my words you will not feel pity or sadness for our family...but, please keep hope alive in your hearts, and faith that it will all work out. Every little tiny part of this horrible mess that has come from Robert being thrown into a world that he did not choose,none of us chose, will be used by God. No family would choose this, yet so many must be forced to face...with unrelentless diligence and courage that surpasses so much. Thank you for dropping in...and joining with us in the power of prayer and faith in healing and love...we need every bit of it! As I write these last lines, I cannot help but think of some very dear ones who are fighting as well, Cameron, Zach, Maria, Aaron, Israh, Kyle, Genna, Jessica,...some who have lost this fight but change my life...Matt, Veronica, Warren, Lacy, my Dad, Logan...to name a few--may you shine bright in heaven.
God bless you, Kathy
Thursday, September 05, 2002 at 07:43 PM (CDT)
Dear friends...I cannot believe it is Thursday, actually as I tried to wake the kids this morning, I was telling them to get up it was Friday, last day before the weekend...they quickly enlightened me! I have been home for almost 2 weeks...
I received the most wonderful phone call today. It was from my sweet Robert!! What a joy to hear his voice, he is not a fan of the telephone while he is in the hospital. He was calling to tell me that he was "out" of the hospital!! I was pretty surprised because just that morning Jeff had said that Dr. Hale had told him that Robert could go home on Friday morning. Pleasantly surprised! Robert was so excited, and Jeff had promised to make him sloppy joes for dinner. Robert has lost about 10 pounds since the fevers started, and when he is inpatient, he will not eat, even his favorite foods! Jeff cannot believe how he will not eat, and the minute he gets out of the hospital, he wants all kinds of food. Fortunately, his stomach is settling down. The extra antibiotics are giving him some tummy trouble, but apparently it is not too bad if he can handle a sloppy joe! I know he was so excited to be able to be at "home" with Jeff. They will continue the daily ritual of going to the medicine room for lab checks, and Robert's daily dose of an anti-fungal medicine. Jeff gave me a blood lab update today. He said that Robert's wbc was at 1.7(1700); his hemoglobin went up from 8.5 to 8.6 on its own; and his platelets were holding at 27,000. The really wonderful part of this is that Robert has not had any transfusions since Monday!!! That means his body, in spite of the fevers, is holding onto its blood and platelets, and still keeping the wbc up at a decent level. He has not had the the nutrophil booster,(GCSF) in two days. I was so glad to hear that. It is always so wonderful to know his body is working so hard and fighting to get back to normal...What blessings to have! I am so happy for Robert, I know this encourages him...I know he worries about all of these things, they do indeed weigh heavy on his heart.
Last night, Robert was giving Jeff one of his attitudes about taking his meds...Jeff told Robert, that was enough, and that he was leaving! Jeff told Robert that he was tired and worn out from having to fight with him about his meds, and simply could not go that round at that time...and he left the room. Well, Jeff was gone only about 10 minutes, and he marched back in there, and put his foot down and told Robert enough is enough...take your medicine kid!! Jeff said Robert sort of looked at him with this odd, but familiar grin, and said, "I'm sorry Dad, but it's my job to give you a hard time!" Jeff said, "I know you are an 11 year old boy, and it is your job to give your parents a hard time..." As Jeff and I talked about this, we figured Robert has to find something to keep us on our toes, to make it seem somewhat normal to be a kid...After all, that is what our goal is, to bring home a normal, healthy kid!
Things around here are cruising along at warp speed in their usual bizarre fashion...I read something recently, a story about God and an angel discussing the type of mother to pick to give a child with cancer to. It was a wonderful story, and one of "God's" prerequisites for this mom was a sense of humor...He said, she must have the ability to have laughter in her life! I think of this, and some of the last words a dear friend said to her daughter the day she left our world...she told her to "laugh everyday, smile alot and remember to be happy!" This was a woman with a wonderful smile and a great laugh...sometimes, all I can do is laugh!
Rejoice with us and the good news that Robert is doing so well! WE are so grateful to our Lord for His abundant blessings and goodness to us...God bless you all, Peace to you and yours...
We want to give a special shout to those "Team in Training" folks who are running marathons in Robert's honor...all to benefit the Leukemia Lymphoma Society. God be with you in a special way, and thanks for honoring our family in such a way! We are cheering you on too...and to Zach who faithfully rides with his Mom, thanks for keeping up the good work and thinking so much of Robert...he loves to ride his bike too! God bless you all!
Thanks for checking in, Kathy
Wednesday, September 04, 2002 at 10:12 PM (CDT)
Hello friends. Another day in the life...for me this day started out absolutely out of control! It was garbage day, right now as Jeff reads this he is laughing, he knows how I hate garbage day...it is definitely a "man's" job around here. Needless to say, a dog got into the garbage out front, and the bag that was full from all the kitty litter, got full of rain water and made the most disgusting mess. My wonderful almost teenage daughter decided she was not going to school...homework and life issues for sure...I decided she was too big to cram into her clothes and dealt with it...I borrowed a truck from a friend to pick up some furniture for the house, anyway, long end of it was, his nice new truck comes fully equipped with self locking doors and alarm...can you dial Pop A Lock, I can! So then me and my lovely almost teenage daughter headed off to get the stuff, only to find out that it would not fit, and have a man look at me and say, "well, I guess you are in a bad mood!" My lovely almost teenage daughter stepped back and held her breathe as the vision of her totally insane mother knocking this man's block off took form...she was very impressed with my restraint, and I told her that the morning may have been a bit stressed, but that at least I got to spend time with her! She told me that she knew today was going to be "bad" last night. I told her that I never think a day is going to be "bad", there is too much good stuff and bad stuff in one day to ever want to predict them! Fortunately, the afternoon mellowed out, and everyone is sound asleep and ready to face a "NEW" day in the morning. Needless to say, I was so glad to see my empty trash cans and all the garbage gone...I left the can in the drive for you Jeff, you can bring it up when you come home!
Enough of my nonsense, sorry, I diverted a bit...the very good part of the day, was also to hear that Robert is holding the fevers at bay. The doctors are hoping to send him out again tomorrow. They have decided to keep him on one additional antibiotic for a bit, since it seems to be working to counteract his fevers. Jeff will administer this in his IV line with a device known as a sidekick. Fortunately, it will not add time onto the long visits to the medicine room and it will not add on to the very elusive pill list. HOORAY! More good news is that all the new cultures they took again with these new fevers are all NEGATIVE...this is good, but I am sure it is a bit of a pain not being able to pinpoint the source of the fevers. I am hoping the guys are sleeping soundly...Robert slept most of the day, and Jeff said he really needed it. His stomach is rather sore, I believe it is from all the antibiotics and lack of food. I apologize for not having the lab counts of his blood. I will remember to get them from Jeff in the morning for the next update. All looks good, that is what Jeff tells me..."he looks good on paper!" I am sure my sweet, handsome boy looks good in person as well!
I decided to run a little experiment tonight. I ventured out for a couple of hours in the early evening without the children. I did this on purpose. I wanted to see how many phone calls I would get, etc. Well, I had not even made it out the door when the waterworks started. Matthew can barely think of me not here...when I told him I was heading to the store, he ran down the hall and told the girls I was leaving for Memphis! The sweet little neighbor, dear Jordan, came bolting down the hall..."Miss Kathy, Miss Kathy..." "Matthew says you are leaving for Memphis now!" I told her I was just going out for a bit, and not leaving for Memphis, she said, that they were all very "scared" that I was going and they were all crying! Man, do I have my hands full around here...I adore these children, they are my life...what can I say, all of them. I am working very hard on trying to prepare them for my departure, calming them, talking with them. I told Jeff I think I am going to have to toss a coin to decide who is coming back with me, do any of you know where I can find a three sided coin? Jess, just is flat out refusing to live here if I am not here...and you know the other two's stories...ain't life grand. (Even Mom chimed in tonight, telling me she already is missing me and I have not left yet!) Who knew I was so popular around here...I think they like a clean house! :)
I want to share a poem with you that I read in a very special book that a Mom from the kids school left on my doorstep (literally, it was in a bag on the door handle), the book is called, "Get Well Wishes", exactly what we need around here, lots of that...
Believe
When you have come to the edge
Of all the light you know,
And are about to step off
Into the darkness of the unknown,
Faith is knowing
One of two things will happen:
There will be something solid to stand on,
Or you will be taught how to fly.
Author unknown
So, dear ones I leave you with this...been flying lately?
My dear friend put it like this, having wind in your sails...I am so glad that my lovely almost teenage daughter who cannot bear to do much of anything these days, got to see firsthand how life is full of all sorts of nonsense that will try to take the wind out of your sail...I hope she felt like I did not fall, that I was able to stand on faith...
Finally, for the dear family up the street, facing such uncertain times in the fight against cancer...I pray that you would feel the wind in your sail, and know that your Heavenly Father is with you, and will carry you...we are thinking of each of you today--God bless you, Love, Kathy
Tuesday, September 03, 2002 at 09:21 PM (CDT)
Hello dear friends...thanks for dropping in!
Robert continued his dilemna with the fevers for another day...his fevers were a little higher last night and he is rather uncomfortable and unsettled from them. Today, he says they were better. I spoke with him tonight and he sounded so good. He was tired and sounded a bit lonely. I felt so bad. He said the day with Jeff gone was not so bad. He was looking forward to Jeff getting back from the funeral though. One of his favorite nurses was on with him today and she took very good care of him, and even tried to get him to "chat" a bit. She and I have been known to drive him a bit crazy with our chatting during some of the crucial moments during his favorite shows. Robert does enjoy enlightening his nurses as to the latest on tv for kids today...some of them will even sit and watch a bit with him while he explains the antics of whatever he is watching. I had called up there earlier in the day, knowing Jeff would be gone all day, and spoke with his nurse. She assured me that he was doing well, and that he was still taking all the meds without any knowledge of it...they definitely appreciate the ignorance is bliss thing with Robert. We are so grateful that everyone takes such care to help get his meds into him whatever way works! Thank goodness something works.
Robert asked me when I was coming back...he says I have already been gone too long. It was so good to talk with him tonight. He sounded so young, and like a boy on the phone. It made my heart hurt to know he is missing me. Sometimes, I think that he doesn't even notice I am gone when Dad is there...I can feel such a new and special bond between us so much through all of this. Of course upon hearing this, the two little ones began to talk about how much they are going to miss me when I go back. Matthew wants to come with me; and Christina quickly reminded us that she was the one who could not sleep and suffered with a nervous, upset stomach all the time when we were gone...all this is true. I began to remind them that now that I have come home this time, they need to remember that I will always be home again, and that as long as some of us are together in part, we are all together. That we must be strong while we are apart for this time and know that it will pass. I reminded them that they surely could imagine how hard it was for Robert to be without me, and our family, and that we are working very hard to be together again. I told them to come home from school and put the TV on in my room to one of the shows I might have on in the afternoon, and pretend I am in there...I am going to work hard to help them focus and remember that this will pass soon, and that we will be together again soon. Of course, they both started crying because they really miss Robert, and want him home again. Matthew cannot wait for his birthday, he knows it is November 24th and he is hoping to have a big surprise party for Robert's return and to make it a birthday party for him as well. I said won't that be the best thing for Robert to be home for his birthday! These kids are really worried about their brother, each of them in their own way. Jessica struggles with so many things she does not know where to begin, Christina gets physically sick, and Matthew, he just gets very clingy and loving...they know that these are very precarious times for him, and each of them has made it very clear to me these past couple of days that they are very worried about their brother. Man this weighs heavy on a heart...sometimes I do not even know where to begin myself...everything is so complicated, not any of it is easy.
I dare say the easiest part of it all for me is the part that requires me to have faith, to trust in my Lord and know that He is in control seeing all of our pain and hurting for us and so many families who are suffering...at this time of year, so many are reflecting, taking stock of their lives; counting their blessings. I try my best to impart this to my children. Jeff and I know we are blessed and we are grateful for every day...
Jeff was grateful for the time with his family today. Eight grandsons carried his Grandmother's casket. He was the eldest. He was so grateful to get to kiss her goodbye, and he felt such love from his family. They all gathered and packed the small country church his Grandma had been devoted to her whole life. He was proud to wear his suit and show his Grandmother that he was a strong man of faith, she taught him so much with her life. He is grateful for a mother who loves him so much, and is there for him always.
All of these things, in one day...a day like any other. Full, full of blessings...we are praying that the fevers subsibe, and that Robert can once again enjoy a little more freedom from the hospital, Jeff is getting tired and really needs a good nights sleep. It will come soon.
God bless you all, and we look forward to tomorrow. Peace to you, friends, Kathy
Monday, September 02, 2002 at 07:26 PM (CDT)
Good day! Hello dear friends...it is Monday, Labor Day. Day +53 for Robert. He is holding up...unfortunately, his dismissal from the BMT floor this weekend ended too soon for him. He had to be re-admitted to the floor today for fevers. I got a call from Jeff this afternoon asking me to talk with Robert. Robert was very upset when he got on the phone. He was so scared and frustrated that his fever came back and knew that meant he had to be re-admitted to the floor. It broke my heart to hear him crying and knowing he was so scared. He knows so many of the potential dangers for him at this point and knows that a fever good be indicative of something far worse than a simple virus...I calmed him as best as I could, reminding him that it is just part of the big picture to getting him well again. I asked him not to be afraid and reminded him that we are right there with him and that the Lord is with him and that many are praying for him...to find strength and courage in that. It really drives it home that he is still just a boy facing such a BIG challenge...as my friend in church pointed out to me again, just fighting to live...
It is so strange to be here, so far removed from the life at St. Jude. This weekend has been so full of blessings and good things here for our family. We were all so excited when Robert left the hospital on Saturday, and was happy eating dinner with his Dad. He joked with me about how I needed to come up there because Jeff was trying to poison him by cooking for him! I told them to behave in their "bachelor" pad...Robert said it was only a bachelor pad until I came back. I cannot wait for Robert to meet the men who all have given so much to this project for him. For the past three days there have been 6-8 men working from early in the morning till late afternoon through hot sun, and rain to donate time for this room. They started each day with prayer, and finished each day with prayer. It was such an honor to be here and watch them work. Listening to their stories and talk of their faith in God and knowing how He has blessed them in their lives. These are men from our church Christ Fellowship of Palm Beach Gardens that have been on many a mission trip building for the Lord in places where so many have so little. We are blessed that they chose to take on this project and know they honored the Lord this weekend as they worked. Christina became the honorary "foreman" on the job, as she worked very hard to help in any she could. They gave her her own hammer and safety glasses...that way she would not have to borrow theirs! The room looks amazing and I cannot tell you what it does for me to look out my kitchen window and see the space that Robert will occupy when he comes home. As one of the men put it, they are building this with faith knowing that Robert will return to his new room whole and healthy again...in FAITH we are trusting for this.
Today one of the local networks came out to take some footage and interview us about the project. The camera man spent a while here talking with me, and Joe Rommel, and the man in charge today, "Moe". The footage that they aired tonight on the news was not quite what we had hoped for...we had hoped they would include our churches name and the fact that the project needed a Roofer to help finish the job...but, I am grateful for everything and anything that comes from all of this...it is all good, and God uses it the way He sees fit. It is after all, all in His hands...we are just part of the big picture.
Tomorrow Jeff will travel to Arkansas to be a pallbearer at his Grandmother Bullington's funeral. Jeff was so close with her growing up and spent many, many days on her farm in Arkansas. I know he has such fond memories of her, and we all have enjoyed all the stories about his life in the country with Grandma. Jeff's Mom will miss her very much as will all of her children. Grandma was a delightful, hard-working, God fearing woman...she loved her family and her Lord. We have enjoyed thinking of how happy she must be to be in heaven. Her husband and one of her sons had passed on sometime ago...I know she feels right at home.
Thank you for checking in, and we hope that you all had nice weekends. We hope that it was filled with some time with your family. The men who worked here all weekend said that there families were getting a little disappointed that they were not home for the holiday...I understand, and want to thank all of them for giving of there time and energy! We are all very tired around the Charton household this weekend, but it is a good tired...one that comes from hard work and lots of sweat in preparation for a wonderful homecoming next Fall!
God bless you much, peace to all of you, and thanks for dropping in...please take a moment to send a note to Robert and Jeff (actually any of us), we do love to hear from you, and I am sure the guys could use a note to lift their spirits! Robert does have quite the sense of humor so send him a clean joke or two...
Love, Kathy and the Charlton construction crew!
CHECK OUT THE PHOTOS ON THE LINK FOR THE CONSTRUCTION SITE BY CLICKING ON THE LINK BELOW...WE ARE HOPING TO HAVE NO PROBLEMS ACCESSING THE SITE
Sunday, September 01, 2002 at 06:50 PM (CDT)
Hey everyone.. This is Jessica. My mom is eating dinner right now so I decided I would update the page.. The new room is coming along great.. In the past 2 days the workers have put up 3 woodframe walls and the trusses. They get here so early in the mornig and Christina gets right out there with them. It is sooo cute! She says she wants to be a construction worker now. Robert is out of the hospital now. And him and my dad are now in a apartment , which they have turned into the " Bachelor Pad" , or aleast Robert thinks so.. My mom says it won't stay that way for long. Or atleast it won't be when she gets there. Roberts white blood count was a all time high yesterday 5.0 which is 5,000 and today it is 2.5, 2,500. Okay well I am not good with all the technical medical stuff so your just gonna have to wait for my mom to reupdate it and then you can know all that!! And I gotta go so Bye!
Friday, August 30, 2002 at 06:38 AM (CDT)
Good Day!
Well, things are moving right along for Robert's room. How cool to see the concrete slab and to be able to envision it even better. By Sunday, the walls will be up and the roof on. That is awesome. It is very overwhelming to realize the effort, energy, time, expense, all out devotion this project requires. I (yes, me, Kathy Charlton) am pretty much speechless at this point. The man who was here working yesterday with the concrete looked at me and said "are you the owner?" I said yes, I am the Mom of the child you are doing this for...he was overwhelmed to think about Robert's whole ordeal. It amazes me to see hard core generosity and genuine giving at it's best...and it is not in some jungle somewhere, or some poor country in South America, it is in my back yard...where my kids play, and my dog runs around. It is my home and family that are on the receiving end of such generosity. We are at this time someone's mission...and did I say "we", truly it is done for the love of a child--for the love of the Lord, in hopes to bless a child! I am sure it may not even hit Robert the hugeness of this blessing until he is an adult. I see Robert as a young man working alongside another man one day, remembering and realizing how he was blessed beyond measure when he fought to beat cancer. Many children are blessed by knowing a celebrity that is there to inspire them...Robert (and our family) are being blessed like we are the celebrities by wonderful, loving, God-fearing, common people like us! Thank you will never be quite enough.
Robert is still fighting the temps. The very good news is that his CT scans to look for possible fungus spots all are negative. Did I hear someone say AMEN! Thank goodness they did not prove the docs wrong this time. Jeff says it is amazing this time in the hospital as well, because they have not had the same nurse not even once...they have had 8 different nurses thus far...he said everyone has been so wonderful. Sort of like a welcome home kind of feeling. Robert is hoping to bid them farewell once again very soon.
I need to go for now...I must shake the bushes and get these kids out the door to school! There is much to do in preparation for tomorrows work and arrival of men to work...do you think they will notice if I clean the bathroom they will be using? :)
God bless you...much! Thank you for checking in, and Lord willing, "I'll be back!" Peace to you, Kathy
Thursday, August 29, 2002 at 07:05 AM (CDT)
Good Morning!
I am sorry if you checked earlier and the page was not updated. I think it was one to many things for Jeff last night...they chose to get some rest instead of getting online...smart choice!
Robert continues to have fevers. Fortunately, they are not too high, staying in the 101. range, and I am sure they are just high enough to make Robert miserable. I also understand the stomach thing is still going on. Jeff has told me that "my Boy is doing just fine", and not too worry. The biggest obstacle for Robert is the feelings of frustration and just plain anger at the situation. He has been pretty crabby Jeff reports. I am sure this is too be expected, and probably for Robert the only thing he can control, his emotions. He has definitely made a decision that he is ticked, and gonna be crabby. I cannot blame him, I supposse. I think what it boils down to is 2 things; 1. A major reality check!; 2. Discouragement. Jeff is working overtime to help Robert cope, and at the same time reminding him that we can GROUND him for the rest of his life if necessary!! We are holding fast to that idea that when all is said and done and Robert is healthy again, he does not need to be a "spoiled brat" kind of kid.
I asked Jeff if he is able to handle this all on his own. I am the one of the group that usually handles all the emotional issues of our family, and helps to keep things a bit organized...Jeff assures me he is not overwhelmed, and I am sure not having to worry about the Homebase makes taking care of Robert easier. It is for me...
Today they will do a CT scan and check for anything on the radar of Robert's brain, and head and chest. The doctors, both Robert's primary doctor and the attending doctor, are coming in to see him every day. They both assure Jeff that they do not think it is anything other than a virus. Robert lungs are clear at this point, alway a BIG factor with these kids, and all his lab work is normal for this time. I do not have the counts of his blood work, sorry. Thankfully as well, his bladder is not affected either.
Jeff is hoping to get over to Arkansas to see his Grandmother. She is in the hospital over there, and they tell the family she is not long for this world. He really wants to see her. Jeff's Dad has offered to come and be with Robert while he heads over, it is a 2-2.5 hr drive to where she is. He is not sure when he will go. It is a bit of logistical problem in that if Robert is outpatient, then he will need to be in the Medicine Room for some time, and then he has meds that must be given at certain times. I am concerned that it would be difficult for someone else to get Robert's medicines just right(ie, pills disguised) and administered at the right times...it can be confusing at best. Jeff is also going to check with one of the nurses that lives in the same area where we are moving who has offered to help us while I am gone. I know Robert would not give her a hard time if she were there, and I also would feel much better in case something happened. Jeff was always very close to his Grandma growing up, and I know it is heavy on his heart to say goodbye to her...it will work out.
Today is concrete pouring day!!! Very Cool! Robert don't worry I will stake your claim on your room while I am here. Your younger brother seems to think it is too big for you and you should have to share it!! HA--he is cool with it, do not worry. Angel(the dog) is quite annoyed that she has been banished from her back yard...Robert we are making a wonderful place for you to come to. I will take pictures and get them to you by email this week. The crew of men from our church will be here Saturday to do the framing. I am hoping to get some lunch lined up for the guys, so I will be busy for the next couple of days in preparation for all the construction and removing of existing walls...it is so nice to have something new to focus on!!!
God bless you all this day, this is the day that He has made for us...Love, Kathy
Tuesday, August 27, 2002 at 09:13 PM (CDT)
Hello Dear Friends. Today is Day +48 for Robert...almost to the half way mark of when he can begin to plan for coming home...Wow, this day seemed so far off back when this journey began...and he still has far to go.
Robert continues with the fevers, 102.0 at times, they have not received any confirmation of lab work explaining these fevers as of yet. The initial cultures that have come back so far are negative for infection. They have cultures that come back at 24 and 48 hours. The doctor explained to Jeff that if Robert continues to have the higher temp. tomorrow they will do a CAT scan and scan of his sinus's. They at this point are speculating that it is a stomach virus of sorts. Poor Robert is very sick to his stomach. About a dozen times today...one of the nurses attempted to crush and hide a pill in the beloved Carafate, a tylenol, and Robert detected it! I cannot believe I might have to go up there and teach them my technique...after they taught it to me...I coached Jeff in the science of proper pill hiding and he took very good notes for future reference. I also reminded him that one of the drugs that helped Robert's stomach before could be easily given IV as it was before, and he said thanks for the idea and he was headed off to tell the nurse ASAP! I of course wanted to say DUH! It amazes me that someone did not already come up with this...I do not fault Jeff, nor am I picking on him, he has enough going on to not have to worry about figuring out ways to medicate Robert and get the meds into him...I think that one of the many docs, or nurses could help a little, don't you?
Jeff is working feverishly on our housing situation. The Dr. who is the Director of the transplant unit shared his dismay once again over the housing point of view...everyone is up in arms over this and WE are the ONLY parents who have taken a stand and voiced our concern! I have one more outlet I am going to discuss this issue with, a gentleman who is here in West Palm that knows much of St. Jude, and is a patient advocate. Another young boy who was discharged not to long after Robert, has been re admitted to the floor with the same symptoms as Robert. Now, realize all of this is to be expected, and very commonplace. However, if in any, way, shape or form does the fact that our living conditions has affected these things I do not think I can sit by quietly and let it continue. I will keep you all posted as to the continuing saga of this plight. We are praying that WISDOM will prevail. The wisdom that says these children are at a very crucial point in their healing and require one on one care at all times...imagine if your child was a young one and you went to kitchen on the other side of this huge house to get his medicine, and while you were gone the child got up out of bed for some odd reason (like you forgot to put his seatbelt on while you left the room) and fell, or tripped on something and pulled out his line attached to his chest...is that graphic enough! That is one of points the doctors have been trying to make about a child who is to be isolated that requires such care being in a communal living arrangement!
Life here in West Palm is so normal. Very strange for me. I do walk around in a bit of a fog...very detached, yet so happy to be with my children. In a way, for me, when one of us is with the other children, we are still connected...Jeff and I sort of bridge the gap for the bunch of us. I read a story today in a book of mine that illustrated how I felt as I drove home the other night...the story talks about this Mom and son walking along and the little one was carefully collecting rocks on his way home...he precariously carried them in his hands, being ever so careful not to drop any. As they approached the steps to the house, the boy dropped the rocks. He bent down to begin to gather them up, and as he looked up he got a glimpse of something...and his face lit up and he darted off to run full force into his Daddy's arms...he gave not a second thought to his precious collection. All that mattered was getting to his father. The author then goes on to say how this picture brought to mind how she holds on to her things so tight, like a precious collection of sorts...her house, her car, etc. She thought about how at times in her life she just had to let them all go and run to her Heavenly Father for comfort, for that Hug. I thought of my own life and my collections...okay, we all know it is my shoes, and purses! And how the other night, all day as I drove those 1,000 miles all I could do was think of holding my children. As I drove I could feel how God carried me, and how I know He holds onto me even when I forget He is there, in spite of my "collections" and things I tend to hold to close...There is a song that came out this summer, I know you all have probably heard it, by Vanessa Carlton, it talks about travelling a 1,000 miles, just to see you, to hold you...this has become "our" song this summer. Robert was so thrilled to hear it on the radio for the first time when we drove around the other day. He said, I love that song. I told him how the children and I sung it as we drove those thousand miles to get to Memphis...just to get to him and his Dad. Again, on Saturday night, those thousand miles became long and a bit dreary...but, they go so fast when I knew I could be with my children.
These are a very long "thousand" miles for Robert...our family...so many children and their families. I think of many dear friends who face such long journeys...I pray that as their journeys unfold, they will be able to run with open abandonment into the Lord's open arms...just to be held and loved. "Do not store up for yourselves treasures on earth, where moth and rust destroy, and where thieves break in and steal. But store up for yourselves treasures in heaven, ...for where your treasure is, there your heart will be also." Matthew 6:19-21
Peace and blessings, Kathy
Monday, August 26, 2002 at 05:43 PM (CDT)
Hey guys,just wanted to give a little side note to the entry om this morning. Robert and I were glad to know that Kathy got home safely. It seems that when she leaves or its my turn to update the page, something inevitably goes wrong with the AOL connection(as is the case right now, it won't let me type without interruption).
Anyway, as of right now, Robert and I are sitting in a room on the BMT floor. This morning when we arrived at the hospital, we proceeded as normal to assessment/triage to do blood work. As they recorded vitals, Robert showed a slight fever. Needless to say it did not go away and here we are for at least 48 hours until the blood cultures come back. Pray they come back negative or we may be stuck here for a while. Robert was not the least bit happy about coming back to the floor. He swore to never walk these halls again, who could blame him for these feelings.
As we have been here since 11:00am, He has resolved himself to make the most of the situation. That and the luck he received a package from some dear friends, the Sturgeons of nearby Cleveland, Tn. and a DVD from some friends in West Palm(thank you Carla and Pam). These gifts could not have come at a more perfect time. It really took Roberts mind off the situation. Hopefully, the time will fly by and we will get some rest.
I have also just spoken with Kathy and she told me that our dear friend, Joe Rommel, is out in the back yard working to remove an old swingset while it is pouring rain. He is doing this in preparation for the arrival of the roof trusses for Robert's new room. Joe,you are a living testament to me and all those who see this as to how a man can be used to impact the world with the love and message of Jesus. Thank you for being faithful.
Well, I will go for now as AOL is getting me so irritated. We love you all. Till tomorrow.......
Monday, August 26, 2002 at 09:05 AM (CDT)
HELLO DEAR FRIENDS, SORRY FOR THE LACK OF AN UPDATE...JEFF AND ROBERT HAVE BEEN VERY BUSY ADJUSTING TO LIFE WITHOUT ME!!! :) ACTUALLY, ROBERT IS DOING GOOD. HIS WEEKEND WAS NOT TOO BUSY WITH LONG MEDICINE ROOM VISITS, THEY ARE RELAXING AND ENJOYING EACH OTHER'S COMPANY.
I arrived home at midnight on Saturday night. I must admit I was feeling a little achey after the 17 hours in the car for my drive home. I have the same genetic disorder my Dad had in that he just liked getting in the car and driving...I actually consider it a good genetic inheritance. What a joy to see the children's faces as they awoke sleepily and were pleasantly surprised to see me! It is good to be home.
I do miss the guys very much. Robert's body is holding up well. He continues to maintain and is taking good care to be healthy. He ate a hamburger last night. He was so pleased. It did not even come back up for an encore. He still receives the daily IV nutrition in the evenings. They have lowered his calorie intake and we are hoping this continues to give him more of an appetite.
I am hoping that Jeff will be back online for tonight with an update. We are going to be moving from the Ronald House sometime this week. If Jeff gets the word, he will move today. Fortunately for him, I packed up all of my STUFF and brought it with me, as to minimize what he had to move in to the apt. I will give you all the info about where that will be as soon as we get it. As far as mail goes, please continue to use the address for the hospital, as we are there almost everyday, and can pick it up. We will update the info for address and phone when we get it. Until then, you can call the guys at the Ronald House phone number at the bottom if needed.
As for me, I am still kind of in hiding, trying to be low key, and get some things organized around here...
As always, we are blessed by you, and your faithfulness to follow with us on this journey. Warm Regards from FL, Kathy
Friday, August 23, 2002 at 09:48 PM (CDT)
Hello friends, TGIF! It was a long busy day for Robert. He spent 9hours in the medicine room getting blood and platelets. Tomorrow will be a short stay and the guys will not have to be there until 11:00! They will get to sleep in. I will get up very early and head home.
Robert is feeling well, and after a night of almost fevers, he is well. Thank the Lord. He got very scared last night when he thought that he was getting a fever, he did not want to have to go back into the hospital. We are grateful that the Lord kept this from him. I tried to calm him down and assured him that all was well. It was the first time I felt a bit scared, and was reminded of the uncertainty that
Robert still faces. I kept repeating the scripture that I placed at the top of Robert's page...the I knew that God had his hand on him, and is right here with him.
I know you will keep Robert close in your hearts and prayers and I know the Lord will continue to take good care of him while I am not here...and Jeff will have that extra bit of strength needed to handle all of the details of the day.
Robert was so happy to read the guestbook entry from one of his favorite fishermen...Bill Dance. He is located very near to us in Tennesee, who knows maybe Robert will be able to meet him while we are here. All of you fishermen check out his guestbook! WE love to read all of the guestbook entries, they touch our hearts and make us laugh...thank you for taking the time to sign in.
God bless you, and keep you near His side...Peace, Kathy
Thursday, August 22, 2002 at 09:51 PM (CDT)
Hi there. Robert is doing well today...Day +43. Our day at the hospital was pretty short. That was a nice change...tomorrow will be very long. While Robert received his IV meds, his doctor, Dr. Horwitz, came to go over some of the lab reports they had done earlier in the week. Robert is still showing evidence of some of his own cells. So he is not considered to be 100% donor cells, yet. It is coming, a little slow, but still okay. Robert continues to receive the cyclosporin and will continue to receive it until Day +50, at which point they will wean him off the medicine. At this point we will watch more closely for the Graft vs Host Disease. So far, no evidence of this at all. There are two points of view that go with the feeling that a little graft vs host disease is a good thing...it all goes back to the possibility of there being any leukemia left in Robert's body and if his new graft would fight it off if it came back. For now, we are grateful that everything continues to look good...Robert is still CMV negative, this is another virus that affects many BMT kids after transplant, another one they watch very closely for is Epstein Barre, he is also negative for that at tis time. His liver and kidney functions continue to be at acceptable levels and are getting better.
Robert continues to receive the IV nutrition every night for 12 hours. It works out that he gets this while he is sleeping and does not have to carry it around with him during the day. He has started to want to eat, but fills up fast and often does not keep it down for very long. Today, he was very tired this afternoon and has slept for quite a while. We know we have been so fortunate that Robert has not suffered with having his days and nights mixed up, that happens alot to kids in the hospital.
The maintenance man here at Ronald House, brought the ac guy in to check why our room seemed so damp. They checked all the ac; removed a dirty air filter, and re-set the thermostat...poor Robert had to sit in the room with his mask on the whole afternoon until we were satisfied all was clean again. Jeff took my van to get the cruise control fixed on it for the long trip home I will make this weekend...this we decided would be the most economical way of going back and forth. Thank goodness for our dear friends from Nebraska, they headed home this morning and will let Jeff have the use of their vehicle while I am away. Thank you guys!
The children are positively giddy with thought of my coming home...so am I. I have not allowed myself to think of home too much, but now I am looking forward to being home for a time.
Thank you for checking in...Peace to you all, and God bless you, Kathy
Wednesday, August 21, 2002 at 09:51 PM (CDT)
Hello, Robert has completed yet another day...another very good day; Day +42
We headed off rather early to the hospital. Jeff and I had a meeting with Joe Mirro, the Chief of Staff this morning. We had been asked to meet with him after I emailed him with some of the concerns we as parents had regarding the way the hospital places transplant children in housing. The meeting was pretty short. Dr. Mirro did most of the talking. I managed to make a few of the points that I wanted and who knows, maybe he will follow up with some of the things he said he would as far as needs we as parents felt needed to be addressed. One of which that concerns Jeff and I the most is the dampness in our room. We truly just want to know that our room is effectively being protected by it's hepa filter. We only voiced concerns that were reasonable and easily attainable. I really wanted to get into some issues, but, the bottom line is Robert is doing great and we are ultimately very grateful for that. We pointed out that we do not want a child to become a negative statistic to get some attention to some very valid concerns before issues are really dealt with. He basically left us with his word to "re-visit" certain things. I do not interact well with individuals who try to make a person feel like they do not know what they are talking about or try to shut me down before I can make my point. I generally am well versed in a subject before I take it on, and very succinct in making my point...Jeff was impressed that I managed to get a few words in edge-wise, and at the same time did not lose my cool! He tried his best as well, he showed great restraint and pointed out that while Dr. Mirro was very pleasant and courteous, he definitely is used to doing all the talking. On to the next point...I am considering forming a parent advocacy group or something...that would definitely give me something to do, HA!
Actually, it has become very clear that I need to go home for a time. I am getting the guys geared up to handle all the meds and stuff without me...I know that Jeff is more than capable to administer all of Robert's medicines and get to all the appts. It is definitely advantageous to have us both here because what one parent may miss, or forget to ask, the other remembers...Jeff will have to be on his toes at all times, and as a parent you have to be a force to be reckoned with when it comes to your child's health care! I know that he can do it...and I trust that Robert will continue on his upward path to getting 100%.
Today it was so good to hear that Robert's wbc was up without the help of GCSF(nupogen, the white blood cell booster); His wbc was 1.9; his hemoglobin was 9.2;Platelets were low, 15,000; he did receive a transfusion for that. We are hoping to not need any blood transfusions or platelets tomorrow to make the med room visit only a couple of hours...that would be very nice. Robert and Jeff enjoy playing pool in the Teen Room. It is pretty empty around here during the day, it seems that most kids are in school or at the hospital. So when it is empty, Jeff and Robert are able to enjoy some time like that. We are keeping Robert as isolated as possible. We sit away from the groups while waiting in the waiting rooms, and do not allow Robert in any situation that might bring more than a couple of people around that we cannot monitor their healthful appearance. Even during our meeting this morning, Robert kept his mask on in the office, it was not hepa filtered, and Dr. Mirro told us that one of his daugthers had a cold and wanted him to keep his mask on...no problem! It is all about doing absolutely everything we can to keep our boy as healthy as possible...
We enjoyed receiving messages about your blessed lives in our guestbook...I dare say, there were not that many!!! Robert usually reads them with me, and he cracks up and does enjoy to hear from you all. I am going to try to get home very soon. I guess that will leave Jeff to update the page...could get interesting!
Thank you for being so faithful and checking in...God be with you, Kathy
Tuesday, August 20, 2002 at 09:19 PM (CDT)
Hello friends. Robert is still kicking BUTT! He continues to keep his spirits up and is tolerating all the going back and forth for meds much better than I...as many of you know I can get a little impatient at times. One of my few flaws! :) His WBC count for the day was 3.2; his hemoglobin was 7.5 so he did get red blood today. We ended up leaving for a couple of hours because the orders for the blood did not get put in (duh) so it was delayed for a few hours. Nothing like sitting around waiting for blood when you have no energy because it is so low. I tend to get frustrated when I know the delays are because of human error that should not have happened...sort of like losing medicine in the tubing system from the pharmacy. My biggest problem is that I get frustrated with the system, and for all the parents and kids I see sitting around waiting.
I tell them that just because I have no place else to be, does not mean they should not respect our time! There is a paper on this table in a waiting room for the teens to write on what they hate the most about coming to the hospital; almost all of them wrote the waiting part! Oh well, such is life. Truth of the matter, we are so thrilled that Robert is doing so well so far...I am not complaining, it just is sort of a pet peave when I feel like something could be done more efficiently...do you know what I mean. We have all had to sit and wait at the mercy of others for one reason or another...one of the nurses actually said to me the other day that "our children at St. Jude teach us patience..." I said I have learned plenty of patience from my 4 children, I am not impatient with my son, it is the system that is teaching me patience! He said, good point.
I continue to be amazed at how many people have had their lives turned upside down by cancer. I met a very nice Mom last night that has 7 children...2 of which have cancer, one has colon cancer, the other an inoperable brain tumor on her brain stem. Can you imagine! We get our time with the Chief of Staff in the morning...Jeff and I plan to first and foremost thank him for letting Robert be here...and I hate to break the news to the world, but every child does not automatically get to be treated here...so yes, we are thankful, and appreciative. We then hope to be able to be very specific and articulate in speaking about some of the issues families like us are facing post transplant...I promise to behave myself. Robert will be with us to keep us in check...should be interesting to say the least. It may not make a hill of beans difference for us, but who knows maybe some other family will have the benefit of us trying to help change things. Our doctors sure hope so.
Poor Mom is home sick with a cold. All of you parents out there know how Not Fun it is to be in charge of the kids when all you want to do is hide under the covers...and the dog is acting like a freak of nature! Trials and such are everywhere...the plumber came and worked very hard to get the plumbing in place for Robert's room. A busy day was had by all!
We hope that all is well with your lives...all is well with ours. We are blessed...are you? I know you are. God is good. Drop us a line and share about some of your life's blessings. We would love to hear them...we miss all of our dear friends near home and far away.
God bless you all! Much love, the Charltons
P.S. Apparently the webpage for Robert's site about his room is not cooperating...sorry for the inconvenience, something else to try our patience! ;)
Monday, August 19, 2002 at 09:12 PM (CDT)
Hello friends. It is Day+40...Robert is cruising right along. Our day in the Medicine Room turned out to not be near as long as anticipated! That is always a welcome suprise. Robert did not require a blood transfusion today, as that alone takes 3 hours, he only received platelets, along with other meds due on Mondays. One of the meds he receives on Mondays is called IVIG; it is a medicine that can be given by IV only and infused over two hours. It is given to help boost his immune system so that he has some protection. Sort of like a nursing baby gets from Mom until he develops his own immune system. So far, all of Robert's body systems, ie, his kidney functions, and liver functions continue to remain in stable condition. His body is maintaining and continuing to filter all the meds and the TPN rather well. We are so grateful for this. Tomorrow, Robert will get transfused for his hemoglobin, and probably will not require platelets. He will also get a med called Caspefungin. It is a prophylaxis given to ward off fungus. So far so good...no fever, no virus, no fungus...very blessed indeed!
By the end of the day, we are all exhausted. We are able to get sleep at night, and it is so good to know that Robert is sleeping well. I believe in a good night's sleep, and one of my most comforting Bible verses refers to "weeping may endure for a night, but a shout of Joy cometh in the morning..." I often recall this when I awake in the a.m. I may not be weeping all night, but it sure is nice to be able to let the day go and sleep soundly whenever I can...and I am always grateful for a new day! Especially a new day, that was not hindered by a sleepless night due to fever and or other such complications!!!
School is back in full swing at the Charlton household...I asked Matthew about his teacher, and I said "Isn't Ms. Becky pretty?", he replied, "Yes she is Mommy, and she wears lipstick, too!" A man after my heart, a keen observer of the obvious...way to pay attention to detail in school, little Man!! Jessica just IM'd me and it is late...I will go to chat with her a bit and try to help her make sense of school stuff...Middle School can sure be the pits! Take good care, and of course thank you for checking in!
Check out the new link on the bottom of the page...it is for the website about the project for Robert's room!!! We have new info we need to add, but we are so excited about this page our friend Joe created, that we wanted to share about it right away!!!!! Thanks Joe! Actually, there is an amazingly long list of AMAZING people we will be thanking...and Thanks be to God!
Peace to you, Kathy
Sunday, August 18, 2002 at 09:17 PM (CDT)
Hello. Today is Day+39. Robert had a very good day today. After about 2 hours of waiting in the Medicine Room, Robert was given in his IV meds and about 1 and half hours later we were on our way. Robert got so excited today when the nurse told him that he had 2.9 wbc; and his ANC was 2300. We all had to quickly remind him that in no way was an indication of how his immune system really was...his ANC was high from the dose of GCSF(Nupegen) he had gotten the day before. All the same, it was exciting to know that his new marrow is still kicking in and revving up!
Robert is doing a great job taking his medicines and even swallowed a blood pressure pill today! He is trying to eat, and drink. He ate a can of soup today, and drank some juice and soda. He is beginning to get an appetite and in spite of the fact that he knows right now that everything he puts in will be coming back up...his stomach has healed so much. It is not painful any more and I can tell he is ready to try to eat. We are taking it slow though. The doctors held off doing an upper GI when they knew his stomach was tore up, only because they pretty much knew what they would see, and the vomitting of blood had stopped. So, as we count our blessings today, we count that can of soup that stayed down a big one.
The children back home are struggling right now. Jessica is feeling the pressures of school, that is nothing new, however, it can drive her crazy in the best of circumstances and now, with us gone, it is really wearing on her. Christina seems to miss me so much. She has been asking certain family members if they remember being without their Mom when they were little...I know in the long term of life, these months will be nothing but a blip on the radar for us. I also remember when I was little and how much time I spent missing my Dad after my parents divorced and he seemed so far away. In reality, he was always a phone call away, and never more than about an hour in distance...so I know all to well the feelings that go with missing a parent. We are trying very hard to convey to the children the temporary situation at hand, and are trying to find the best way to resolve this. Many of the families here are all together, many families are still together. There are so many pros and cons of every angle. We are focused on trying to keep Robert healthy. We are looking into finding a place with a kitchen to rent for a few months.
We trust these things are all going to work out. We know that as long as we get Robert through this everything else will work itself out. Well, it is getting late, and we are off for a very long day tomorrow of meds in the Medicine room...just another day in the life...God bless you all, and again, thanks for checking in.
Love, Kathy, Jeff and Robert
Saturday, August 17, 2002 at 09:11 PM (CDT)
Hello. Today is Day +38. It was a good day. We headed off to the Medicine room to be there by 9:15. I was very relieved that they have "tweaked" the schedule for Robert so that it is not filled with too much unnecessary waiting in the clinic areas. This would stand to reason as he is not allowed to be in any environment that we have no control over who he is around. The clinic waiting areas can get pretty packed. As you can imagine...many are patients,(of course), but many are siblings, and guests and all sorts of people taking tours and coming to visit to cheer up the kids. It is much like what I refer to as a "Macy's One Day Sale!" Get the picture. As Robert's doctor reminded us today, basically Robert is in a worse position than that of a newborn baby. It is much easier to protect a newborn, than an 11yr. old. We are so grateful that Robert understands this concept and does not give us a hard time about not being in "crowded" places. He is diligent about wearing his mask and washing his hands. Many times when a person approaches him for the first time, they attempt to shake his hand, and he will put his hand in his pocket, and I explain why he does this...nobody ever seems to mind him doing this...please do not take offense if you should ever meet a child in this state and they do this sort of thing--it is self preservation at its best.
His platelet level was low today so they gave him platelets. Hopefully, tomorrow will not require any transfusions so our stay at the Med Room should not be longer than a couple of hours. I spoke at length with Dr. Horwitz about our ordeal the day before. Robert's blood pressure had gotten pretty high during the transfusion and it was not monitored the way it is supposed to be when transfusing blood products. (Every 15 minutes for the 1st hour) The end result is that we decided to try a bit of blood pressure medicine to see if it helps. That brings the total of pills hidden in Carafate to 10 a day! He continues to take the cyclosporin by liquid twice a day. He will take this up until day 50 or so...all this depends on if any GVHD shows up, and how well his graft stays up. Robert continues to look so good and enjoy as much of his day as he can. In spite of the constant nausea and bouts of vomitting he still has a sense of humor and is the same old Robert we know and love. He often loves to talk about home now and his friend Ryan and his family. He informed us that he has to have a place for Ryan to sleep when he comes over to spend the night when we return. Ryan, Can you say "Aero Bed!"? Even though Robert often talks of his friends back home, and I know he misses so many things about it, he does not want to call anyone yet. I am hoping he will want to start writing some letters soon...
Tonight our good friends from Nebraska came over to play some cards. Steven and Peg taught the guys a new game and everyone had a good time. It is nice to have them here, because they understand and are in the same boat as we are in that neither guy can risk infection of any type. Steven will be getting his transplant next Fall. So he has an immune system, but he definitely respects the lack of one that Robert has. It is also such a nice thing to have friends that understand when your child gets sick to his stomach at the drop of a hat and do not mind pausing the game for a pit stop or two :). We will miss them so much when they head home next week. But, as Robert said, he knows he would much rather go home than stay here for the next 4 weeks.
It will probably be Sunday when most of you read this. Some of you will be at church. Enjoy your time together and the day off wherever you are, whatever you are doing. Thank you for taking the time to check in on us...If you would, please take the time to check in on another dear friend of ours, a young man named Ryon Rommel. He received a bone marrow transplant this time last year...he continues to battle with Graft vs Host Disease. He is such an encouragement for Robert and we ask that you take a few moments to check in on him and maybe sign his guestbook.
www.caringbridge.org/fl/ryonspage
Much love and blessings, Kathy, Jeff and Robert
Friday, August 16, 2002 at 10:53 PM (CDT)
Hi there. Today is day +36. It was a long Friday! Our days for now, as I told you before, involve lengthy visits for medicine in the medicine room. Today Robert was there from 9am to 7pm. He only needed two different meds; actually one med and a blood transfusion. What can I say, nothing is perfect, right? The rooms are comfortable and it just takes some getting used to the fact that Robert may be out of the hospital, but spends all day there anyway. Hopefully, in time this will become less necessary, or maybe we can work the scheduling and stuff to keep the length of stay less.
We had the pleasure of a visit today from two very dear friends. Two of the nurses from home came up to check out their "Boy"! Karen's, #1 Nurse (she was the one I called to help Jeff out in the ER the other day), husband works for Delta so she and a friend flew up for a visit. She brought with her Nurse Tracey. It was so great to see them both. Robert really enjoyed their company. In between his bouts of vomitting he actually was is old self...joking and goofing off with them. Karen is the original trouble maker from the word GO! When she is in the room with Robert and Jeff you just have to take a step back and watch out. They are flying out early in the morning and heading to NC to visit another family from WPB that is at Duke. How cool is that. It is people like this that have come into our life that really reflect love and encouragement. Thank you ladies...you are the best!
Robert's blood levels are moving right along. They told us that the last test of his blood to see how engrafted he is(it was drawn last Monday) showed that he is 97-100% donor cells. They figure by now that he is 100% donor cells. His engraftment is slow...but sure. They are watching every thing very closely. They watch his liver levels, and his kidney levels. So far so good...no small feat, I dare say--thank you Lord. Still no signs of the very wicked Graft vs Host Disease(GVHD). This will be watched for signs of for a long time...
I am going to try to get some sleep; I need to wake Robert shortly to re-take a medicine that did not stay down earlier. It is the first time we have had to that...you should see how hard Robert concentrates on not getting sick after he takes his medicine. Earlier today, he got sick, and his first words to me were, "Mom, was it enough time?" The nurse in the room looked at me, and I said "Yes Robert, it was enough time, you did good, no re-taking that medicine..." Count your many blessings name than one by one...the other day, a friend of ours, another patient that is facing many rounds of chemo in a month...said to me, I hope I can tolerate my chemo as good as Robert! This from a 17 yr. old guy who has undergone brain surgery spoke so much to me...these kids are so brave, and truly, truly amazing! Each and every one of them.
God bless you, and keep you safe. Love, Kathy
Thursday, August 15, 2002 at 08:12 PM (CDT)
Today is Day+35. It is indeed a good thing to not sleep with all the sounds of a hospital! It does a body good! Robert had a very restful night. He is doing so well. He is blessed and we all know we are doubly blessed. I did manage to get lab results today. His wbc is: 1.5; Hem:8.2; Platelets:26,000;his ANC is at 900. He received a transfusion of platelets as well as some other meds that he is not taking orally, YET! Until such a time that he can take all of his meds orally, he will have a trip to the medicine room for IV meds everyday. He is doing so good. I am so grateful that he is managing his nausea. So far he has not had to re-take a medicine that he has thrown up...this is truly a blessing. Tomorrow he will more than likely require a blood transfusion.
Jeff arrived safely and we were so happy to be finished at the hospital in time to pick him up ourselves!!! Robert is so glad that he is back here. I am planning on going home some time soon to visit the other children. It has been several weeks since I have seen them; and even longer since I have spent any length of time with them. We are all settled into the Ronald House. Tonight some fireman came by with their trucks and Robert enjoyed going out to see them. He even made it upstairs to check out the house. He is not complaining at all about the snug mask that he must wear at all times. In the hospital that was such a big deal to him, and he did not like going in the hall because of it. I know he is beyond happy to be out of there.
The project at our house for Robert's room is well under way. Jeff is going to create another web page at this site to give you all the info and updates with photos about the project. Maybe if we are all really lucky, Joe Rommel, our dear friend who is heading up the project, will write on the page as well! I look forward to sharing the computer with Jeff and reading his updates about this amazing project. There is so much to tell--God has provided some rather miraculous things. INDEED!
A friend shared with me about Defiant Joy, in the face of adversity...it made me think of another favorite verse from the book of James. James 1:2-3" Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perserverance." Pure joy can exist when nothing seems to make you happy. I believe pure joy comes from God, knowing that He loves you and is right there with you.
God bless you--Peace my friends! Kathy
Wednesday, August 14, 2002 at 10:44 PM (CDT)
Hello dear friends...it is Day +34, August, 14, 2002. Robert is sound asleep in his bed at the Ronald House!!! FINALLY! Oh happy day...and what a day we have had. I was so busy getting everything coordinated to go out today, actually, the wonderful, very efficient staff did all the coordinating, I just had to pack it up and move it and learn how to do all sorts of cool things. Praise God...Robert continues to get in the most important medicines by mouth. I am so thankful this is working and that he is adjusting so well to the switch over. He was so happy to feel the HOT sun...he said he was getting burned as we wheeled out to the van! We drove around and took in some of the view of the River and headed to our temporary home. I managed to get things all put away, and get a nice area to keep all the meds organized and very clean. Robert had a visit from Steven and Peggy...our dear friends from Nebraska. They brought him a welcome-here gift...a t-shirt that says "With a body like this, who needs Hair!" Steven and another older teenager and Robert all have matching shirts! I cannot wait to see these guys in there shirts!!! They are such a good looking bunch.
I do not have any blood levels to report, can you believe in the chaos of the day I did not even once look at his lab work!!! That is unheard of.
I actually had a good excuse for getting a little overwhelmed...Poor Jeff came home last night feeling beyond horrible! He managed to get up this morning and seemed to feel better. He did such a great job getting the children organized and off to school. Thanks Mom for coming over and helping. Joe, thanks for waking Jeff up :), and taking the photos for me. I hope to post one of the kids on their way to school later. Right after Jeff took the kids to school and headed off to finish his job is when things got real interesting for him...My Mom called me a few minutes after 8:00am to tell me that she just took Jeff to the emergency room at St Mary's because he was in such pain he was passing out! She was absolutely stunned to see Jeff suffering from such a pain that he could barely breathe. Mom said it was just like a scene from a movie, she ran into the ER yelling for a stretcher!!! I immediately called a friend who is a nurse at the hospital and she rushed down to see if she could help. Poor Jeff, managed to get kidney stones. I tried not to panic as this unfolded this morning and was praying that it was not serious and that God would just take it all....Jeff finally was able to call me, he called to declare his love for Morphine! After going to x-ray they confirmed that it was kidney stones and that one was on its way out, hopefully. Jeff managed to pass two kidney stones today all by about 5:30pm. He quickly felt better and spent the evening getting some final things in order before he gets on the plane to head here tomorrow. He misses Robert terribly and maybe that love willed those little critters out of there!!!! I must say, I believe we received another miracle today!! Can you believe it. A day in the life of the Charltons'. What a day, a day to remember. Filled with anguish and pain for one, and for one a day filled with hope and a promise of things to come. We are blessed. I am so grateful to God that this happened while Jeff was home and able to get such immediate care and relief. God is good, great things He has done;
and I dare say, Can you imagine?
I look back on this day and reflect as I think how each one of us in our little family began and experienced such new things...first day of school; major pain; a new beginning; and for me--peace that passes understanding. Peace as the first day of school started, peace as I did not know what Jeff was facing, peace in bringing Robert from the hospital after 44 days inpatient. Yes, friends, God is good. May His light shine upon you, and may you know that He is good. It is very late, and we have an early day tomorrow...for now, Robert sleeps so soundly...yes, it is good.
Have a blessed day, Love, Kathy
Tuesday, August 13, 2002 at 08:52 PM (CDT)
HELLO ALL. WE ARE DAY +33, TUESDAY, AUGUST 13, 2002. ROBERT HAS BEEN IN HERE FOR 43 DAYS...TOMORROW IS THE DAY HE GETS TO LEAVE. I CANNOT HELP THINKING OF THE DAY HE WAS BORN...SEEMINGLY SMALL COMPARED TO HIS SISTER BORN THE YEAR EARLIER...I REMEMBER THEM PULLING THE CORD FROM AROUND HIS TINY NECK AND FEELING SO SCARED AND SHOCKED TO SEE THIS. HE WAS FINE. SO NOW I GET TO TAKE HOME A NEW KIND OF NEW BORN...ONE THAT COMES WITH ALL SORTS OF INSTRUCTIONS...
I MOVED OVER MOST OF OUR STUFF TO THE ROOM TONIGHT. I AM TRYING SO HARD TO NOT BE NERVOUS ABOUT TAKING ROBERT FROM SUCH A STERILE ENVIRONMENT, TO ONE THAT SEEMS(PROBABLY IS) UNSTERILE. I CHECKED OUT THE KITCHEN AREA FOR OUR PART OF THE HOUSE TONIGHT...I WILL NOT BE COOKING IN THERE IF I CAN HELP IT...AND I DO NOT PLAN ON GOING IN THERE MUCH. WE WILL FIND A WAY AROUND THIS. IT IS UNFORTUNATE THAT A FEW OF US FAMILIES HERE AT ST. JUDE IN THE POSITION OF TRANSPLANT (ALLOGENIC) CANNOT GET INTO THE TARGET HOUSE UPON RELEASE. THIS HOUSE HAS 2 BEDROOM APTS., WITH ALL THE AMENITIES, KITCHEN, REFRIGERATOR...AFTER A FAMILY CHECKS OUT OF A ROOM THERE, IT IS REPAINTED, AND "DEEP CLEANED"; CARPET REPLACED IF NEEDED. FOR SOME REASON THIS IS NOT THE STANDARD AT THE RONALD HOUSE...I DO NOT EVEN THINK THEY CHECK TO SEE IF A ROOM IS CLEANED WHEN YOU CHECK OUT. I SING THE CHORUS, COUNT YOUR MANY BLESSINGS NAME THEM ONE BY ONE ALOT...I KNOW THAT WE ARE BLESSED. WE WILL DEAL WITH THIS AS WELL. ST. JUDE DOES NOT REALLY EVEN HAVE A RELATIONSHIP WITH A PRIVATE APT. COMPLEX TO HELP WITH FAMILIES. IF WE TRIED TO DO THIS ON OUR OWN IT WOULD BE A HUGE EXPENSE. AT OTHER FACILITIES THEY HAVE "TRANSPLANT" ROOMS AT THE RONALD HOUSE. THESE ARE USUALLY FULL, SO FAMILIES GET FINANCIAL ASSISTANCE TO HELP PAY FOR A PLACE TO LIVE. WE ARE CAUGHT IN THE GAP; TARGET HOUSE IS UNDER CONSTRUCTION TO MAKE IT MUCH BIGGER; AND WE DO NOT REALLY QUALIFY FOR "ASSISTANCE" BECAUSE THEY THINK ST. JUDE TAKES CARE OF IT...SO OFF TO RONALD'S HOUSE WE GO...
SORRY, ENOUGH OF THAT. ROBERT IS WORKING SO HARD TO FEEL GOOD, AND BE STRONG. I CAN TELL HE IS READY TO GET OUT OF HERE. HE IS NOT COMPLAINING, BUT HIS PATIENCE IS THINNING OUT. I HAVE MANAGED TO WORK THE PILL THING OUT TO A POINT WHERE HE WILL NOT BE IN THE MEDICINE ROOM HOOKED TO IV ALL DAY...I AM SNEAKY REMEMBER...I PLAN TO TELL HIM WHAT I HAD TO DO TO HELP WITH HIS MEDS WHEN THE TIME IS RIGHT. RIGHT NOW WE JUST PRAY THAT WHAT GOES IN DOES NOT COME OUT!!!
THE KIDS ARE OFF TO SCHOOL TOMORROW. THEY WERE STILL UP WHEN I CALLED AT 9:30. JESSICA WAS FREAKING OUT SHE HAD SO MANY PROJECTS TO DO FOR SCHOOL THIS SUMMER. CHRISTINA CANNOT FIND ANY OF HER NEW CLOTHES. MATTHEW, WELL, HE IS MATTHEW--GOD BLESS THIS CHILD, HE IS SO COOL. JEFF, WELL, JEFF IS SICK IN BED WITH THE STOMACH FLU THAT EVERYONE HAD LAST WEEK. I MAY BE GETTING HIM A HOTEL ROOM FOR THE NIGHT WHEN HE GETS BACK JUST TO BE SAFE. I HAVE NO IDEA WHAT TO DO ABOUT THIS. COULD HE BE CONTAGIOUS IF HE HAS NO FEVER? HE HAS TO FINISH UP HIS JOB IN THE MORNING...MY MOM WILL COME OVER AND HELP GET THE KIDS OFF TO SCHOOL. I HOPE HE FEELS BETTER IN THE MORNING. THANK GOODNESS MOM'S DON'T GET SICK...RIGHT?
I MUST GO FOR NOW, IT IS GETTING LATE, I NEED TO GO MAKE SURE THE NEXT PLAN OF ATTACK ON THE MEDS IS IN LINE AND READY TO GO! I HAVE TO MAKE SURE THE NURSE WITH ROBERT TONIGHT DOES NOT BLOW MY COVER!!!
GOD BLESS YOU, AND HAPPY NEW SCHOOL YEAR! KATHY AND ROBERT
Monday, August 12, 2002 at 09:25 PM (CDT)
Hello friends. Today is Day +32. Monday, August 12,2002. It certainly was a Monday around here! Robert's blood levels are holding: wbc:1.1; hemoglobin:10.0; Platelets(very low)12,000/got transfused; his ANC was still around 700. Robert started out his day pretty normal. He took his very yucky cyclosporine in his usual cocktail form: a mixture of cyclosporine with a dab of cherry pepsi; then a wash of cherry pepsi that is spit out into the new variation of the spattoon; then he chews some gum...after being weighed I told Robert he could sleep in. So he did!
Robert's afternoon got a little interesting to say the least. They are planning on discharging Robert on Wednesday; this according to the doctors is hinging on his ability to take his medicines...if Robert was taking all the pills he would need to at this point (all meds he was getting IV up until Sunday) he would be ingesting I think at last count 21 pills! Try that on an empty stomach that has not had anything in it, other than thick spit that makes you barf, for the last month and a half!! Get the picture. Well, so far I have managed to get 3 of the pills hidden away in a medicine he swallows to help his stomach heal from the gut rot; and then 7 of them we have managed to divert to liquid(cyclosporin); and then the new 12 that we just found out about this morning, well he threw up the one dose of liquid he tried to take...they then informed me that that particular pill should not be taken on an empty stomach!!! Thanks for the tip; I will get back to you on that when he starts eating. Of course he does not want to eat because he has been hooked up to IV food for the past month 24/7 and has no appetite; as you can see, frustration and mucho nausea has set in. Oh, did I mention that he no longer gets any anti nausea meds through his IV; they want him to swallow those pills as well...therefore, he is quite ill; Thank the Lord his bladder is better!!! So, then starts the guilt tactics by some of the staff...the comments like well if you want to get out of here you will take your medicines...and blah blah blah!!! Did you figure out that I am the one who is frustrated! Needless to say the next person who tells me they need a vacation I may just knock their block off!!! :) Sorry--that is my first thing on my new list of things not to say to your friend who has a child with cancer, how about anyone(even if they are not your friend) who is dealing with cancer...
Sorry if I am ranting and raving...I am trying to be so good. Robert was a bit blue as he bid his guitar buddy farewell today; they headed back to Nebraska. It was wonderful of our new friends to come and say goodbye, and pray over Robert before they left. God bless you, dear friends...have a safe trip home. Mimi Jane headed home to West Palm today. Jeff tried to finish up some work for his job that he is finishing up before he heads up here. He and the children went to their school to meet the teachers and the children are looking forward to school. It will be so good for them to be back there. We are blessed with a special school full of lots of loving teachers and staff! I saw a bus load of children heading off to school...it made me so blue when I realize how hard Robert worked to be in school this Fall; auditioning and getting into the Middle School of the Arts...it reminded me of so many things that change as a result of all of this...we go on; we have lots to conquer...all those pills, liquids...
To all of those amazing people near and far that are willing Robert on to get out of here, know that he is trying so hard! He is trying...he is so strong. Thank you for checking in...much love and peace to you all. Kathy
Sunday, August 11, 2002 at 11:02 AM (CDT)
Good day...Sorry for the lack of an update for Saturday, Day +30...the server was down again...gave up around 10pm and decided to get some sleep. Saturday was a great day for Robert. He felt very good most of the day. He finished his giant lego plane and had three visitors. Justin and his brother Steven came over to give Robert another guitar lesson. Robert had asked me the night before to tell Justin that he was asking when he would be back! Robert really enjoyed the lesson and the company. The guys father, Lyle, tagged along I am sure to make sure they actually got a lesson in and it was not all goofing off!!! Just kidding...Robert loved it. And we all know around here that any amount of goofing off is welcome and appreciated. Justin and Lyle will be heading back to Nebraska, but Steven promised another visit and a lesson...
Good news Steven, we may be at the Ronald House and you could do the lesson there!!!
That's right folks. You heard it here first. Big man Robert (otherwise known fondly to me as "Roberito-Burrito Boy"), may be heading to our room at Ronald's house...I must say it pains my heart every time they say you are going "home" soon...I remind them that Ronald's is not home! I also do not interchange the two when I make reference to either place with Robert or the other children. If I told Matthew that Robert gets to go "home" on Tuesday, that child would be camped out planning to skip his first day of Kindergarten!!! We are grateful to have a place to go. It is very strange how Robert sleeps and lives in such a monitored environment, and then all of a sudden he is in a room at the Ronald McDonald house...at least he gets to go out with an instruction manual, unlike the day he came home when he was born.
Robert's blood counts continue to look good. His wbc is 1.1(1100) and his hemoglobin is holding at 10.2; his platelets are low 17,000(he just got transfused so it should be higher); and his ANC is 700 today. Once again, the doctor is so pleased. Robert told me last night that he is ready to get out of here; today is 7 weeks since we checked into room 4020. It is amazing to me how fast this time has flown by for us; and I am amazed that neither Robert or I have lost our minds! That is a testament to the environment here...yesterday, my friends from Lebanon got to go home. It was so precious to see Israa, a beautiful little 6 yr. old, dressed in her favorite outfit, with her TPN bag, and her mask on...ready to go home. I hugged my new friends goodbye and am so pleased they get to go "home". They have a home hear in Memphis, so no Ronald House for them. I am amazed at how many people live near here. I always thought there would be so many more from far away like us. I have met several who are far from home. But, I find such comfort when I realize a child leaving here actually is going to there own home...I also cannot believe that so much time has passed and I finally do not cringe when I walk in the door...this place is not scary anymore...I think Robert has been so happy to be here. I know this because his complaints are few and far between. He has compiled a list of his nurses and rated them...that I will save for posterity. He is now wanting to draw and write a bit. Good thing, because at some point he must begin to focus on school.
Jeff will be heading home today with the children. I thought what a twist of fate...Jeff decided to stay on a bit longer to see the kids off to the first day of school; and he will not be here for Robert's day of discharge. Life is all about trade off's. I know he will be a little disappointed he will not be here as Robert gets his first glimpse of the sunlight in so long, but I am so glad he is there with the kids for their day! Both my boys achieving milestones...thank you God that we are on our way...Have a wonderful Sunday. I may be back this evening, Mimi Jane is headed back for the night tonight and then back home in the morning.
Thanks for checking in, and keep in touch. Also, you may continue to send mail to Robert and family at the St. Jude address at the bottom. We are now in room 30 at the Ronald House. Peace, Kathy
Friday, August 09, 2002 at 09:18 PM (CDT)
Good Day friends. A very good day...I believe this day turned out to be the best one yet! Praise God...Robert seems well on his way. He slept in until about 11:00, I sort of decided not to let him catch up on his sleep as I had arranged for a visit from one of the doctors here to come and talk with him a bit about things...Robert to me he would not talk with the psychologist...I told him that was his choice, and that he could tell him that when he came, but that he was not to be disrespectful or rude. Turned out alright, and they actually talked for quite a while. Robert worked on a new lego that his buddy from home sent him. Dylan, Robert was so pleased to get your box! Thank you, he plans to finish it tomorrow. After his time with Dr. Phipps, Robert had another visitor. A young man named Justin, his brother is a patient here, came in to work with Robert on the guitar! He taught Robert two chords, and Robert was so pleased to have this lesson and to meet Justin. I told him that he would like Justin, looks like he is a surfer from Nebraska! Justin is studying to go into Youth Ministry at a college in California; he had told his Dad, Jeff's new friend that he met here, that he wanted to come up and meet Robert and teach him a bit. I was all for it, and very impressed that this young man would take the time to do such a thing...His younger brother Steven is the patient here, his webpage is on a link at the bottom of the page. Pay him a visit and send him a hello; rumor has it Steven plays the guitar as well, and may want to teach Robert also! How Cool is that! Robert spent the day being as normal as I have seen him in so long...normal for him. It was so nice to have fun, and see him enjoy himself.
The good news keeps coming about Robert's recovery. His wbc are up to .7(700); his hemoglobin was at an all time high of 11.2. His bladder looks completely normal from the ultrasound; the bleeding has stopped! They have taken him off two of his antibiotics; and are lowering the amounts of fluid and platelets they are giving him. Today was the first day that he had bands; and his segs are up to 70. He had an ANC of 400. All of these are good signs of the engrafment and that his body is working hard. They also made the decision to lower his cyclosporin(the drug that keeps his body from rejecting the new stuff); this will help his body engraft. The doctor informed me that Robert would need to start taking this by mouth this weekend. That he would have to swallow a pill in order to get out of this place anytime soon...well folks for those of you who have been following this amazing kid for any time, know how he loves to take pills--NOT! So I began to "prime the pump" so to speak...I even had to choke down a handful of mini M&M's in one swoop to try to get the kid to try to swallow one mini...he did not hold up his end of the bargain! So I thought, here we go; gonna be forever before this kid swallows a pill. Come to find out, that the "weekend" meant tonight; and the "pill" turned out to be seven! I was like you have to be kidding. I asked the doctor what he was doing on a Friday, going out to dinner, because I was spending mine getting my child who has not eaten or drank anything in four weeks to choke down 7 of the nastiest pills ever! I was like thanks for the heads up!!! So, we (me and the nurses) started to figure out a plan...I am quite the schemer when necessary. So the options came down to this; 7 sort of small gelcaps; or 2 giant gel caps; or a small syringe of this thick liquid. Robert chose the latter (big suprise) Well, we "primed the pump" and the boy managed to get through the whole ordeal without throwing it up! The nurses were shocked that he chose the liquid; we suirted this thick liquid into the cup and Robert poured a tiny amount of Dr. Pepper into it, laughed at how it fizzed and took a whiff of the stuff. He then of course told me to smell it--well by this point I thought I would barf up the handful of mini M&M's I had choked down earlier...yep, the stuff STINKS, smells like yeast or wheat...we had a method; a shot of the stuff in one cup; followed immediately by a shot of Dr. Pepper to swish about and spit out to kill the taste!!!! Voila, Success!! Robert was so proud of himself, and he should be; he accomplished a big hurdle in his life; I guess he really does want to get out of here. The nurses were so impressed. So was I! Well, lets hope he is good to go in the morning...
I am exhausted today. I woke up this morning feeling quite fatigued for the first time through this whole ordeal. Robert rejuvenated me. I found out that we will not be moving to the Target House anytime soon; so Robert will be heading to Ronald's house for the time being when we get out. So, me being the genius that I am, decided there might be a better room available in Ronald's house. So, I introduced myself to the director of the house, and asked her about relocating...and voila, I spent the night washing, cleaning and packing up my room to relocate to a much nicer room in the new part of the house with an entrance right near it. I am headed back to finish up there in a few minutes.
I had the pleasure of spending some time with my new friend from Lebanon, the Mom of the little girl next door, her daughter. Well, I had gotten a notice in my box at the Ronald House that at Target House they were giving out school supplies. I have felt so compelled to help this family. So overwhelmed by the generosity that my family has been so blessed by; that I want to help them in any I can...so the pleasure came from getting to spend some time with her 11yr old daughter and take her to pick out backpacks and school supplies for her brothers and sister. She chatted so much to me; it was so nice. She is so soft spoken and told me of her love of the beach, she goes to the beach in long sleeves and long pants...Jessica take note! She told me about the differences of things at her home in Lebanon...it was nice to be able to be trusted by her Mom to take her with me; and to have the time to get to know someone so different than me. It was also so sweet to realize that a child no matter where they come from loves getting new school supplies! It was a very good shopping spree that did not cost us a dime! Thank you Lord, and thanks to Target, they do so much for St. Jude.
Well, I must head off to finish my chores...and get some sleep. Mimi Jane heads off early in the morning. Thanks for checking in. Take care, and God bless you, Kathy
Thursday, August 08, 2002 at 11:02 PM (CDT)
Good evening...Today is Day +28. There is so much to be thankful for on this day, it is a good thing. Robert's blood levels are holding up. The decision to keep his platelet level at 75,000 seems to be very beneficial. The amounts of blood in his urine were down to 0-1 this morning. AMEN! Remember this time last week those guys were the ones that were too numerous to count...see ya! Robert worked very hard and was diligent about following instruction every night and getting up every 2 hours! The aggressive attack on getting the situation under control worked. The aggressive prayer is also working, these things go hand in hand I believe. Robert actually had and ANC level of 500 today. He has .5(500) wbc...and the word is that he is 90-95% donor cells in his marrow!!! This is where they want him to be at this time...it is all good. Praise be to God...I cannot begin to give Him thanks enough...we will continue to be diligent with Robert's awarenes of his need to not let his bladder sit idle for too long...he knows how to take a pro-active part in his health care. He is a sharp boy! He is engrafting and so far so good; no signs of that ugly GVHD; no signs of VOD(a problem with the liver that is very common at this stage). We watch with eagle eyes and wait with the patience that only God can give...and through it all God has been very faithful to provide wisdom to know what in the world is going on around here...I love wisdom...it is a good thing; check out the book of James in the New Testament; God says if any of you lacks wisdom just ask...He gives it out to everyone, no stipulation attached. He knows how badly we need it to survive in this world!!!
Mimi Jane arrived today. It was so good to see her...she has such a sweet spirit and I know Robert was glad to see her. He has been waiting all week to watch the Fellowship of the Ring, Lord of the Rings movie with her. I let them watch it, and headed off for a bit by myself...It was strange to leave, but the timing was good, because I had a lot to think about outside of these walls. When I am here, I can really shut the world out...they enjoyed the movie, and Robert even missed me! I was so happy to come back here to be with him so he could fall asleep. He finds such comfort knowing that one of us his here at all times.
Jeff will heading over to see the children in the morning. He is planning on spending a couple days with them at the beach, and then bringing them home on Sunday. I know they will be positively beside themselves at the sight of their Dad! The truth of the matter is, everyone is working so hard to keep our family going...but, until we are back together as a unit, it is very hard. It hurts my heart so much to be apart. I have promised the children that it will be over as soon as it can be, and that we are working very hard to be together again...I am hoping with school starting that it brings some continuity to things for the children, some sort of normalcy that reminds them of the good things...they are home, safe and well taken care of. I know their hearts are hurting, my is too...it is such a strange thing to be separated from someone you love, left feeling so helpless, but we know we are doing the best that we can, and doing that which we must do to keep our family whole...I pray that as you go through your days, you will cherish being together with the people in your life. If anything, this type of situation that comes out of nowhere, and changes our lives so permanently, can teach us...it is teaching me...changing me...be strong and courageous out there.
To our dear friends who are at home in the hospital fighting their battles and our dear friends at Duke, we are with you in spirit and praying for you constantly...
Goodnight, and Peace be with you...Kathy
Wednesday, August 07, 2002 at 08:53 PM (CDT)
Hello friends. Today is Day +27 for Robert! It is a good day indeed. Robert has been feeling great today and his spirits have been up...we have had a nice day today. I am so proud that he can have a good day even if a good day includes a little vomitting and other nuisances! He is such a trooper. Word has it around here, that everyone is getting sort of anxious for his engraftment...some of them do not remember the last time they had a child take so long to engraft! I said they had never met Robert...I believe his Robert's motto should be "Why be normal?". His doctor assured me that as he said before, half of the kids engraft earlier, half later...Robert must like keeping us all in suspense. The important thing is that his marrow looks just as it should for the timing of everything...
He continues with blood in his urine. They have started him on a medication to help his kidneys push the fluid out; using the blood supply. Robert's body seems to have adjusted once again to this new routine. He has started retaining fluid, too much, so they have to get it off him and continue to watch it closely. His kidneys are functioning at an okay level; but the levels are slightly higher than they were; so we watch all of this. His billirubin level went down. Down form 3 to 1.3. This is good. His doctor made a special trip up here to deliver good news...he says he almost never gets to deliver only good news, Dr. Horwitz, said there is almost always a "but," attached...not today; he wanted to say that everything looked great. That his marrow was right on target and that his wbc was .5(500). It made me feel so good that he made a special trip up to deliver that news, and to assure us that all is well. When you get so much information put on you at once it can get a bit overwhelming. I found myself wondering if I would not benefit from less knowledge in some regard; that whole ignorance is bliss thing...I also wonder if the medical personnel gets frustrated trying to make sense of so many different things to us as parents, when the bottom line is they are doing all they can and it will just take time...Thank you to Dr. Horwitz for coming up and checking in with us...I must say, this is a place full of wonderful people who love children...I dare say a few of the folks around here have developed a soft spot for our boy...
Thank you for stopping by, and we look forward to a visit from Mimi Jane (Jeff's Mom) tomorrow! Grandma is doing better, and yes, we are blessed...Love, Kathy
P.S. I wanted to make mention of a special delivery Robert received today...the sweet lady who had the guitar sent over, spoke with someone about Robert needing a video for instruction because reading is bothering his eyes a bit...well, this afternoon a very nice man from Amro Music Shop brought one by...thank you John for making the special trip, and thank Ms. Pardue for your thoughtfulness! Robert was very impressed! We will get working on it! All of your thoughtful cards and notes and packages, do so brighten his day...like Christmas all year round, a note is just as special to him as his packages...he has quite a collection and is proud of his display...it warms the heart.
Tuesday, August 06, 2002 at 07:43 PM (CDT)
Hello dear friends. Today is Day +26 and counting--we are counting the days. Robert is getting there. Today was a busy day. Robert's wbc count remains about the same at .2; his cell activity is up; cells counted are at 50; and his monocytes are a little higher as well. Robert's day started out with a bit of vomitting with blood in it. They watch this very closely; it is old blood and it is acceptable. Also, the urinary bleeding is about the same. No worse, so that is good. Robert went down and had his bone marrow aspiration around 10 a.m. and all went well. He managed to beat his record for counting here at St. Jude--he made it to 59. They were all impressed with his fervor as he counted as fast as he could until he fell asleep for the procedure. They say some children like to count, but not as fast as Robert! He was so sleepy after his procedure due to the sedation, but also from some meds he received prior to that for the nausea. He got a little sick after he awoke, but other than that, the nausea is better.
We will not have any definite results about the amount of donor cells in the marrow for a few days. What we do know at this point from the aspiration is that there is no evidence of cancer cells there...did I hear an AMEN! Also, that he is not producing platelets on his own quite yet, they take the longest to start producing. Also, they saw evidence of the GCSF/nupogen, working in his marrow and that lets them know that news cells are coming. So, the good news is that there is no bad news, or anything out of the ordinary to cause worry at this time...so as Dr. Benaim put it, by Friday we expect to hear that he is at 100% donor cells...maybe as late as Monday. We trust and hope...as always. They have also decided to keep his platelet level above 75,000 due to the lack of activity of platelets in his marrow. This should help the bleeding in the bladder as well. They normally do not transfuse platelets at this point until they are below 20,000, but because he has excessive bleeding they want to up the amount...platelets are priceless around here, and hard to come by and given out only as needed...every single platelet must be accounted for and very necessary to give. Thank the Lord that people are here every day donating platelets for these kids!!!!
Robert managed to get some much needed sleep today. He did get up every 2 hrs. and did not complain once! He slept the whole day with a t-shirt his best friend made him covering his head! One time when he got up to go to the bathroom when he got back in bed and I covered him up he asked me to put the shirt back on his head...I put the side up that said best friend...it was precious to see this. It was like his blanket when he was little...I know he misses his buddy even though he does not call or really want to talk about him...the other night when he was really down, he said, "Mom I just want to go home, and sleep in my own bed, and have Ryan sleeping over". Something to look forward to...
I am really enjoying my time here with Robert. He is missing his Dad, I know, and the rest of the week will make it a little harder. We will get through it. My Mom emailed me...she got the stomach flu the kids had the other day...not much fun to be sick on vacation at the beach. I hope she is feeling better. Jeff feels so good to be home working...good to get his hands dirty and feel the joy of accomplishing a good job! I just sort of imagine that we are not far from home and that we will all be together soon enough. Truth be told, for me, I amazed that the time has gone so quickly so far. God is good to us; we are not stir crazy yet...the big debate about where we will live when Robert is discharged continues...all the doctors agree the community living at Ronald's house is not ideal for an allogenous transplant patient. We may end up back at the Marriott Hotel if we do not make it to the Target House. There are 11 families on the list ahead of us...it is a bit complicated and they are trying to fix the policy for these types of situations. We are looking into a renting an apt. That would be costly, but we shall see.
God bless each of you and thank you for checking in...I read this the other day..."Courage is fear that has said it's prayers". Turn your fears into courage!
Much love, Kathy
Monday, August 05, 2002 at 08:55 PM (CDT)
Hello friends. Today is Day +25 for Robert. He is holding up well. He is certainly holding up much better than I could imagine, especially since he is very sleep deprived. His blood counts remain the same. His wbc are at .3(300) his ANC is still at 100; but they assure me that they are coming, and on there way. Robert continues to have the bleeding in the bladder. This is what is causing the lack of sleep and constant need to get up to urinate. They cannot stop pushing the fluids until it is cleared up; the amount of blood in the urine has actually increased since yesterday, and from the looks of the urine, it is not any better, maybe even worse...I pray this will pass soon. He is not near as serious as the other patients with this complication and they are continuing to speculate as to the source of the problem. The reason they are trying to figure out the problem mainly is for future reference. All the cultures for a virus take about 30 days to show any results. We are trusting that we will be well over it by then. I am grateful that at least Robert is holding up and not getting worse to the point of being considered serious. Amazingly enough, Robert has not had a fever really at all to speak of. Every night it seems he teters on the edge of having a fever, and then, it goes down. What a blessing. He is on very strong, multi-coverage antibiotics for any sort of bacterias, however, fevers may be indicative of bigger problems as you can imagine. So, that is something to be grateful for...no fevers.
I find it rather amusing to see how the nurses have figured him out, and how he manages to amuse them with his mannerisms. His nurse today said he is quite the deal maker...he always tries to barter a few more minutes to do something. By the end of the day I could see how tired he was feeling and how difficult this schedule is becoming for him. Pray that when he is sleeping it will multiply for his body and give him strength. I do not want the lack of sleep to discourage him...or get his spirits down. He actually got so frustrated with me tonight he was raising his voice and telling me how miserable he was, and that I was not the one with cancer! I am very sympathetic...I cannot be empathetic, because I have not ever had to be any where near in his shoes...but I did remind him, that he does not have to live with his cancer anymore...it is just up to his body to rejuvenate itself. He is hanging on...I see how hard it is getting for him right now.
God is so faithful to continue to show Himself and bless us in the midst of all of this. Tonight I thought of how pathetic we could be...the kids somewhere missing us; Jeff home missing them and us; Robert and I here missing everyone...and then throw in the reality of our life right now, and you got a pathetic picture...not true! I refuse to get pathetic, okay, I have gone there on occasion, but, not for long, and I try not to go there out loud...now is not the time...I guess if now is not the time, then there never will be. I figure, why go there...so there you have it. Robert is 25 days out of his Bone Marrow Transplant. He has been in the hospital for 5 weeks straight...and God is good, I remind him of all the things we have to be thankful for, he agrees. Tonight he even admitted he misses his sisters...I must have caught him in a week moment, those darn Hallmark commercials :)...I know the children are realizing how much they really love each other in a very special way. This too is a blessing...
So many blessings, I am thankful. Thankful that Jeff got his 52 holes dug for his trees, and the landscape moved around in the yard for Robert's new room, thankful that he got the concrete poured for the a.c....Thankful that Robert walked down the hall even though he could barely stand up and catch his breath...lots to be thankful for...we are blessed...God bless each of you, and praise to Him for this day. Grandma is doing much better, Amen! Love, Kathy
P.S. we also wanted to let you all know that Robert will be having a Bone Marrow aspirate tomorrow at 9:30AM. Please pray that the results show clean Marrow and 100% donor cells. This is what we are praying for tonight. Thank you Lord for healing Robert's body.
Monday, August 05, 2002 at 12:27 AM (CDT)
Hello friends. I wanted to do a brief evening update to get back on the regular schedule of updates. We had a very relaxing day. He continues his battle of the bladder. We are watching him closely. He is still on the rigid schedule of urinating every 2 hours. Robert has managed to keep his spirits up through all of this. They have been keeping his platelet level above 50,000 because of the bladder bleeding. This means transfusions every day; sometimes twice a day, depending on how much they give at a time. I am grateful they are not suffering a shortage of platelets. Very grateful...donate those blood products! Robert is getting platelets even now...his blood pressure has been controlled daily. He has headaches daily and is still having some pain from his stomach and other things. Robert continues to realize that he is doing so well; he is focused and encouraged by all the wonderful words of prayer and encouragement. It all helps all of us!
Jeff made it home safe and sound. He headed straight to Home Depot. He is hoping that everything falls into place so that he can get this job finished this week. I could tell Robert was missing his Dad tonight. It is so quiet around here on the weekends it gets kind of lonely, even for Robert. I think the normal hustle and bustle really helps the time pass faster. I reminded Robert how quickly that time passes during the week and that before he knows it Dad will be back! The doctor told us this morning that Robert will probably be in the hospital for at least this next week. He is expecting that we will be moved into the Target House before he is discharged. He is very adamant about this. Community living is not a good environment for someone who just had an allogenous transplant like Robert. That type of transplant is the most compromising to the immune system. I am praying this works out before we leave here. I do not feel comfortable with taking Robert to live at the Ronald House even if for a couple of days...I won't go into that whole thing...we shall see. God already sees it, I know this, and He is in control.
I do not want to forget, Robert's vomitting is much better, Praise God...no small accomplishment. The nurses tell me they have to remind themselves that he is only 11; they say he seems so mature to them. They have also figured out that he has a high tolerance for pain! No kidding, I call him the Horse!!! He gets that from Me of course...HA!
Thank you for checking in, and as always for your support...peace to you all. Monday is on the way, I wonder what that day will hold. I am grateful to know that whatever it may hold, God has a hold of me and my family, Amen! Kathy
Sunday, August 04, 2002 at 08:10 AM (CDT)
Good Morning! I am praying this webpage cooperates...Jeff is headed to West Palm Beach, after he drives 230 miles to Nashville in a rented car and lands in Atlanta to change planes and then finally home around 4ish...that should be quite an adventure...he realized his first stop when he gets home is to Home Depot! God bless him and keep him as he travels. I know it will be hard for him to be away from Robert.
I am so pleased to report that Robert continues today to be on that upward track toward engrafment. His white blood cells are the same .2(which means 200); but more importantly he has segs:7; and monocytes:4. These are good evidence of the new cell growth that is on its way. Yesterday they counted 2 cells. Today they counted 14! That is pretty good--of course I need to find out exactly how many he really needs! Matthew's reply to the news of new cells was "good, does that mean Robert can come home now? He has his new cells!" Than Matthew said to me that he knows Robert only has 200, and what does he need like 5,000 million? I said, you got it little buddy! Also, very important is that Robert's urinalysis continues to improve--PRAISE GOD! The amount of blood in his urine is down today from 20-25 yesterday, to 6-10 today...excellent. Keep up the good work Robert! Jeff had told him that he could punch him when he got so frustrated being woke up every 2 hours, but that he must do it...so last night around 2am when Jeff coaxed Robert out of bed, BAM-he socked Jeff right in the gut! I think it was Jeff's proudest moment! :) He was glad to see is boy has some spunk!
I know Robert will miss Jeff tremendously this week. He shared with his Dad that he was afraid I was going to torture him with "chick flicks" from Blockbuster! Don't tell him that I do not know where the one they go to is...I am sure I can find something mushy to do with the boy this week. He makes me sit through all those cooking shows! Actually, I have become so grateful for networks like the Food Network, and TLC, and Discovery...they are Robert's favorites. We have been learning all sorts of amazing things to do with sugar! I guess the guys are trying to give me a hint--they must expect me to cook again someday! That could be interesting...my culinary skills are a lost art for certain. Mimi and the other children managed to get better (thank you Lord) and they are on their way to the West Coast -Boca Grande- for the annual family week at the beach...it will the first year in 10 that Robert will not be there...should be bittersweet without him. I told Robert we will just have to watch Shark Week on the Discovery Channel from our hospital room...much safer than at the beach, anyway.
Robert is trying to catch some sleep before the day really begins. I am hoping to see the doctor this a.m. and find out the very urgent question burning on Robert's mind...how much longer must he get up every 2 hours to pee!!! We may not know why we have been so blessed to be getting through so much of this without major issues...the major issues keep getting under control rather quickly...we are grateful to our Lord beyond measure...so grateful that He has seen fit to bring things about as he has...his grace abounds here! It hurts my heart to see the little one still suffering much with the blood in the urine problem when Robert was able to get through it...we continue to pray for her. I am so grateful it is Sunday. I can already feel the praise and worship being uplifted to God this morning. May every day be filled with praise and worship--He is with us always, and loves us always...thanks be to God, great things he has done and is going to do!
I have not shared this, but Jeff's grandmother is very ill. She is not doing well at all. It was very hard for Jeff to not be able to see her before he headed home for the week. He had hoped to get to see her last week, but could not leave Robert. Please remember his family in this very difficult time.
Peace be with you...be strong! Love to you all, Kathy
Saturday, August 03, 2002 at 06:25 PM (CDT)
Good Day...a good day indeed! The server for this website was down for a day and I am sorry for missing a posting. The best news is that this morning when Jeff emerged from sleep that the doctor was there bright and early with a paper for him...it was Robert's lab work for the morning. It showed evidence of NEW CELLS! They had highlighted the sheet where the new wbc was...they also highlighted the part of the sheet that was the urinalysis; it showed the amount of blood in the urine was down significantly! Yesterday, it indicated "TNTC"(too numerouse to count); today, it showed 20-25; that is much less! We are so grateful for this...Robert is so proud. He really feels like he accomplished something by his hard work in making sure he went to bathroom on command...he is also taking his medicine for his stomach very good now. Hopefully, that is on the mend as well.
We give God the praise and glory for his faithfulness....Love, Jeff and Kathy and Robert
Thursday, August 01, 2002 at 10:38 PM (CDT)
Good Day! Today is Day +22 for Robert. He is strong still in spite of it all. Today started out as any other, except that after a night of vomitting every hour on the hour and constant nausea he and Jeff were exhausted! I stayed at the Ronald House. Jeff came back to the room to get some sleep this morning and I headed to the hospital. The good news of the day was to see how delighted Robert was when I got to the room. It was not delight because I was there--it was delight because his guitar had been delivered! No he does not play, YET! He is eager to learn. It was so neat to see him so pleased. It should prove to be a nice distraction and excellent skill for him to learn. He sat up awhile attempting to pick at it a bit, or strum...according to a visitor later in the day, it needs to be tuned. I think I will get him an instructional video to help him along as I think it would be easier than trying to follow a manual.
The day progressed with Robert's spirits very good. He is managing to keep his very positive attitude and courage as he waits for counts. Still no sign of the new cells. It became very apparent later in the day that he really needs those new cells now more than ever. We received news today that there is more than a trace of blood in Robert's urine at this time. It is "TMTC"--too many to count on his urinalysis. That is not good at all. They had to give him more platelets today to help counteract the blood loss from the vomitting and from the loss of blood in his urine. Dr. Horwitz came to see us and sat us down to explain that he feels Robert now has a type of virus that is causing this hemorragic cystitis. Last week when they saw trace amount of blood they were speculating that this might be the cause. That cleared right up, but apparently, this is a whole different issue. This is an issue, the other was just something that passed. The two are not related. Last week's condition, according to the docs, has nothing to do with what he has now. They are not sure if it is coming from something known as "adno virus" or not. Testing for the virus almost always comes back negative. Robert is the fourth patient in a matter of about a week that has come down with the same condition. It is the same thing that I shared about the little girl in the next room is suffering with. It is a high number for this floor to see the same exact condition in four of its patients. We are hoping it passes as quickly as it came...the doctor did not tell us this time it was nothing to worry about. His expression said it all. He is worried. I am, I must admit, a bit overwhelmed at this time. Jeff and I will buckle up and get Robert through this...he needs those cells! They would only help to heal his body. At this point we must make sure that Robert is up and urinating at least every 2hrs. This of course is awful because he is beyond tired from lack of sleep from the vomitting. He is also vomitting blood, some red clots. These are better than dark ones, this means it is not the deep lining of the stomach...of course all the blood products and fluids mean that he must be constantly checked for his blood pressure. That is an issue as well. We explained to Robert the urgency of the need for him to urinate when we tell him...he is being a very good patient. He even started to swallow the carafate for his stomach today--in spite of throwing it up. That is no small task for Robert.
I realize this is a bit much to read here, but it is the best way to communicate the reality and urgency of the day that Robert is facing. As I said, I am overwhelmed to say the least. Not so overwhelmed that I cannot cope for Robert, but my heart just seems to be in pieces--so many tears that I cannot stand to see the suffering of these kids. I hurt not just for Robert but the horrific reality of the this entire situation. I have a tendency to let the whole big picture overwhelm me...ulitmately, I know and believe, and trust that my son will get through this...but what a path for a life to have to endure. Such a strange world to be living in, one filled with the reality of disease. For those of you who have read books that take you into a world that you never thought existed or created an environment that seems so unreal--that is what this is like, only it is real. There are no fairy tales, and no one can skip to the ending to see what happens...but as I said to a Mom tonight as we talked--ours is a world full of Light, the Light of God shining at the end of the tunnel helping us find our way, it is the only way. This comforts me...and I know it comforts Jeff...and it is our hope that we can convey this comfort to Robert.
Thank you for being faithful and praying--spread the word folks...it's getting a little hairy up here! Robert is a strong kid! Believe me...Peace to you all--Love, Kathy and Jeff
Thursday, August 01, 2002 at 08:10 AM (CDT)
Good day. I am going to do the journal entry for Wed. July 31st today; the server was down and would not let me access Robert's page for any sort of entry. So here it is...Day +21. Robert still is waiting on some evidence of new cells. His platelets were getting low so in the afternoon he received a unit. Whenever he receives his platelets we definitely see a pattern of not feeling well. He tends to get high blood pressure, which causes a headache and requires some blood pressure medicine to get it back down. This seems to happen only when he receives the platelets and I asked the doctor about this, and he said it is because the platelets are in a serum that contains "stuff" from the donor. Red blood cells are kept cold with a preservative only, not any other "stuff" from the donor. So keep this in mind when you donate platelets...keep those bodies clean! The doctor told Jeff not to donate blood products specifically for Robert at this time, to just donate them for the general poplulation.
Robert seems to be really having more discomfort from the "gut rot" than is obvious. It cannot be seen, but they know it is there. We spoke with the doctor about Robert's lack of desire to swallow anything. He will not even swallow liquid tylenol at this point because he thinks he will throw it up. Yesterday we tried to get him to take a medicine called karafate(I am not sure of the spelling), it is intended to coat the stomach and help it heal. Robert was afraid he would throw it up. Poor boy, he vomits and feels nauseaus pretty much all day. He has not eaten in weeks...the docs say this is common. We are grateful he has not lost really any weight at all, he started out with a little extra pounds so that has helped. Though I realize that psychologically Robert has problems with pills and now swallowing in general, the doctor told me that is only part of the problem. Physiologically, Robert's stomach is a mess. It will take time to heal. So, that is the biggest battle of the moment...we are so grateful Robert remains well otherwise. We are so grateful that things that crop up are things that get under control right away--pretty much. We work very hard to keep Robert's spirits up and remind him of how the Lord is in control and is with him all the time.
The little girl in the room next door was not any better when I left last night. I am anxious to see if she has turned around. She was doing well enough with her transplant that they were planning on sending her home on Friday. Now they must get this under control before they could send her home. Her family lives here in Memphis. The father works nights so the other children are usually here with Mom all day. I know that would be so hard to handle when you want to focus on your sick child. She worries about her 9yr old son who was the donor, and how this is affecting him. The little girl's graft seems to be doing well...it is these other horrible things that can creep up on a child that makes this whole ordeal so awful. Thank you for praying for her as well.
God bless all of you, and I will be back this evening to let you know about Day 22! Thank you for checking in...
Tuesday, July 30, 2002 at 11:03 PM (CDT)
Hello friends. Today is Day +20. It is Tuesday, July, 30th. Robert has had a good day. In spite of the fact that the first thing he did this morning was get sick to his stomach! He managed to do his physical therapy and sit up in bed and talk with us and was in good spirits. His blood levels were good, no transfusions were needed. His hemoglobin held up today, so he did not need to be transfused for that and since he received platelets yesterday he did not need any today. We have noticed a definite pattern in the way Robert's body reacts to getting his blood products. His blood pressure goes up and he feels particularly cruddy that day. They are continuing to watch his input and output of fluids. He pretty much needs help getting rid of fluid and requires lasiks once a day. The good news is that they figured out so that at 10pm when Robert is ready for bed they are not hitting him up with this stuff that makes him urinate. That was very frustrating you can imagine. Now it is just scheduled for the morning and he gets balanced out.
Robert's doctor, Dr. Horwitz, decided to start him on something called GCSF, or nupogen. This is to boost the white blood cells. He explained to us that he is only doing this to basically jumpstart the marrow. He told us that half of the kids at transplant start to develop white blood cells before day 21; half after day 21. He is not worried that Robert has not starting producing wbc, he just wants to get the ball rolling. He told us that the time to worry and need to look for other options for getting the marrow going, would not be crucial until day 35. It is amazing to me that Robert has been at a 0 level of immune system for so long...he looks so healthy, and is doing so well. I am so grateful for this. I told the dr. that I was not worried, nor was I going to worry. I would not say that Jeff is worried, but I dare say he is a bit anxious. He says the Lord keeps telling him that He is working on it! Jeff figures that the wbc will be fine right around the time that he heads to FL to work for the week; and that they decide to release Robert and we have to move to the Target House all while he is gone. No problem, I know how to load the minivan with the best of em! Should be interesting to say the least. Pretty much the philosophy of the hospital is to include children Robert's age in all the conversation regarding his treatment. Jeff and I have decided that not all conversations need to include Robert, it has become clear that some of what is said confuses him and scares him. Children do need to be protected from certain things. I do not think that Robert needs to know every detail nor do I think he wants to know them. Thank the Lord for the parent room!
One of the children on the floor has been having a tough time...they are watching her closely. Her room is across from Robert's. She is one of four children. I met her Mom the night we came into the hospital, she had her transplant the day after Robert. Our families are so similar in that the children fall into the same pattern, girl, boy, girl, boy. The youngest son is Jeff and my little buddy. He plays with us and we just love trying to figure out what he is talking about. He speaks little English, they are from Lebanon. I am so glad to have met this family. The Mom and I may not be able to share many words, but we speak so well to each other as mothers...please pray for this little girl. She is heavy on my heart.
Please also pray for a dear friend back home. A very special lady and mother of two. The children have been friends with our children for several years. This precious Mom was first diagnosed with breast cancer the day after Robert last year. When Robert relapsed her heart ached in pain as she wondered how come a child should have to relapse...unfortunately, she too has relapsed. I do not know all the particulars of her prognosis. I do know that she is a precious woman, and her family has been there so much for my family and it hurts my heart to know how hard this is...it hurts my heart that I cannot be there to help them. Uplift them and pray that they have the strength and courage to face this.
Thank you for checking in, and as always thank you, thank you thank you for your steadfastness before God on Robert's behalf. God bless you. Kathy
Monday, July 29, 2002 at 10:43 PM (CDT)
Dear friends,
Today is Day +19...Robert is cruising right along. He is concentrating real hard on getting those new cells. I am not sure who is more anxious for them, Robert or Jeff. Today has been a not so great day for Robert...he has not felt well at all. These days come and go. Yesterday was better, and we trust tomorrow will be too. I am glad to report that we did not see the discouragement of other days when Robert felt so cruddy. He did not get to frustrated with it all. Just remained calm and tried to get through it. I think he can definitely appreciate getting some sleep and waking feeling better. I look forward to a better day tomorrow. We are speculating that the extra nausea might be part of the starting of the engrafment. The doctor referred to the condition that these kids suffer from as "gut rot". He apologized for the unmedical term, but I definitely feel it hit the nail on the head! Robert will probably not be able to feel much relief from the stomach discomfort until he has white blood cells to help heal it. So, it will take time. Robert remains focused and I think from our talks and sharing of the wonderful words from all of you in his guestbook he is encouraged and more patient about all of this...
This morning as I walked into the hospital after taking Mom to the airport, I was praying and asked God to show me what I could learn; to help me see that which is good, pure and lovely, that which is what I should be focused on...I thought of how this very difficult place has drawn myself and so many to seek Him. To search for His peace and understanding. I did ask what in the world a child has to learn from such a trial as this at so young an age...that is something I do not understand. My son must go through all of this for me to learn? That I do not think is the reason, rather we are choosing to take this situation and turn it into something that can teach us, mold us, make us better people, better children of God...Robert teaches me so much, I see it all the time and he does not even realize it. Watching him do all the things he does, the laps around the hall, the games he plays, the way he still laughs and makes us laugh. The way he talks to his nurses and doctors. He is a child who still wants to be good and loving...I pray that as he grows and looks back on this and remembers this pain, he is able to still want to be loving and good and obedient, not hard-hearted and discouraged...this will affect him his whole life...I can see already how this has affected so many lives, precious lives that are coming together for one cause--the love of a child. This is good. I thank you for choosing to care.
Robert got mail today. He loved it. A big box from Germany. Right at the time that he opened the box some friends who are of German descent were visiting...they all knew what the German candies were and thought it was so cool. Robert loved it! He may not be eating candy much these days, but I am! I will have to eat the chocolate eggs so that he can have the toy inside to put together. The sacrifices we make for our children. Did I mention how glad I am not to have to wear a bathing suit this summer!!! He got a very cool book in his box that I hope inspires him to work on his drawing...thank you to our sweet family abroad--we miss you guys!
Thank you for checking in on us, and please keep signing in, Robert's eyes do bother him on and off quite a bit, but he listens intently as I read him his guest sign-ins...keep up the good work.
Love, The Charltons
Monday, July 29, 2002 at 01:01 AM (CDT)
Hello all, Today was day +18 and by far one of Robert's best days. We are still waiting for signs of new cells from Robert's donor and we continue to ask that you all pray for this specifically over the next few days. We know in our hearts not to worry about things that we cannot control but it does help knowing that so many are praying for the same result.
We had so much fun today as we took full advantage of the empty hall. Ususally the weekends are a lot less hectic and we were able to enjoy the space. Robert does not have physical therapy on the weekends, so we had to improvise. Robert and I threw a ball out in the hospital and played a game we play at home where you only get points if you hit the other person around the chest. Yes, we ususally use gloves to catch the ball with but here there are no balls to throw, only a rubber contraption that sticks to flat panels you wear on your hands. Anyway, it is a fun game to play for the both of us and Robert shows an incredible abililty to throw acurately with either hand. Robert was showing signs of being a great pitcher( a southpaw )prior to his diagnosis and it will be great someday soon to see him back on the mound.
Most of the kids lose some of their coordination while here so it is important to keep them active. Robert has not shown any of these effects and he continues to amaze. After playing our game and doing some laps around the floor, Robert wanted to play a board game. As long as he wanted to stay in the hall, we were game. So, Robert, Kathy, myself and mimi stayed in the hall and tested our superior intellect,not, in a game of scrabble. If not for our desire to eat dinner, the game could have lasted for a while. Not because of our ability to pull words from our vocabulary but because we would still be there staring at the board.
Robert actually held his own and much to my dismay I must admit that Mimi won the game.(I may never live it down as we have become mild adversaries when it comes to board games) Yes, I know Scott, you are very disappopinted I lost to my mother-in-law. But brownie points are a good thing to have with the mother-in-law.
It has been great to have Kathy's mom here for a few days and please pray for her as she flies back home today around 9am. We are lucky to have family willing to fly here to spend time with Robert. Next week my mother will be here and I look forward to seeing her as well.
Well folks, I am sitting next to Robert's bed listening to him breathe and cannot help but be thankful we have made it this far. Our God has been so gracious in keeping His word.
We continue to pray for all of our dear friends who are going through similar situations with their children.
It has been a great day.
Peace to all and goodnight.
The Charltons
Saturday, July 27, 2002 at 10:43 PM (CDT)
Good Day. Today is Saturday, July 27th; Day +17. Robert is well. Thank God...he is better today. He required platelets and blood today...they were both low. He tolerated the transfusions well, and his body handled all the extra fluids well, and did not experience the high blood pressure problems that he has experienced in the past when he gets so much fluid at once. We were glad to see that the level of billirubim in his liver was down considerably from 3.1 to 1.8. The levels that indicate how his kidneys are functioning are all in pretty good levels considering. One is slightly up, but the creatin(spelling?) is low enough to balance the other out, and to indicate they are okay. We are very glad once again to see that his body keeps functioning at normal or very close to normal levels. We are blessed, Robert is blessed. I spoke with the Nurse Practioner this morning and she said to not worry, and that she understands how parents look at all the levels constantly searching for something to panic about...I told her, I will panic when they tell me it is time to panic. I trust that the entire group of doctors and nurses and research personnel that looks over Robert's case Mon-Fri every morning to make sure that everything is on track...I know they have only the best invested in Robert's healing...
Robert had a very quiet day...we relaxed and he enjoyed the quietness on the floor today. He was so pleased to see his Mimi today. He may not be carrying on the longest and most entertaining of conversations...but, I know she knew he was glad to see her. I am sure for her to come into this environment and see him there was a little strange for her. It is sort of strange to have Mom here...Jeff and I get into our routine and keep our focus on the boy in room 4020...Jeff took Mom out for some real bar b q; I knew they would enjoy that. Mom and I came back to the Ronald House to sleep. It is definitely better here with some company :).
Mom brought cards from home. She brought one from Robert's best friend Ryan...Robert would not let me read it, he held it close in his hand so no one could see it but him...Ryan's Mom sent one as well...and the children sent cards...Matthew signed his whole name, I think it was the first time I ever saw him write out "Charlton", Matthew I am so proud of you. It was such a treat to get mail today because the hospital does not get mail on the weekends. We also received a card from our sweet neighbors who always see the children playing outside and enjoy watching them...it is so nice to hear from all of you. Be it by mail, or in the guestbook. I especially appreciate the way you will direct things to Robert...he lets me read them all to him...he does not spend much time on the computer right now. He really listens as your words of encouragement come through. Thank you for reminding us of God's Word as well. I appreciate each point of view and I like to share the different ideas and words of encouragement to make Robert think...it is very special. It is so curious to watch him when he sort of turns his head and looks like he is contemplating what I am reading...you know how sometimes you wonder if your child is really listening to you. Robert does not talk alot right now, but he is listening to everything...that is what scares me sometimes, I do not want him to hear something that scares him and not ask about what he heard...
Tonight both Matthew and Christina asked me when I was coming home...Christina informed me that I could just get on a plane and be home tomorrow. Matthew just wanted to know if Robert was almost through getting better...he always wants to know if Robert is better. It is hard to know what hurts him more, missing me, or missing his brother. He really worries about him. I encouraged him to pray for the new cells, and told him we were waiting. I am glad the children went to church tonight...maybe that is why they missed me more tonight. They are used to going there as a whole family. Jeff's Mom has her hands full with that crew tonight and tomorrow. I know she can handle it. Please pray for us as we miss each other so much. I know that many of you cannot put yourself in our shoes as far as what we face with Robert, but I know you can relate to missing someone you love when you are away from them...
Thanks for checking in--may the God of Love reign in your heart...I hope that you have a place to come together and worship...God bless you, Peace my friends...Kathy
Friday, July 26, 2002 at 10:27 PM (CDT)
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Good day...Today is Day +16, Friday, July 26, 2002. I know that after my report of yesterday you will all be so pleased to know that today was much better. The pain from the urination seems to be subsuding. Robert's blood levels were good and he did not require transfusions. They were glad to see that his platelet level stayed up from yesterday's transfusion. Robert has little bruises all over his abdomen, and little petechiae(I believe I spelled that wrong, sorry, they are small broken blood vessels that look like purple dots) all over his thighs. These are from the low platelets. His eyes are a bit yellowed from the billirubum from his liver. This level is a bit elevated, but not anything alarming. His kidney function is good, despite the urinary problems of late, and the fact that his urine is so concentrated...overall as his doctor would put it, nothing is really going on that is out of the ordinary or unexpected...I of course still marvel at such a statement! He is encouraged by Robert's continued steadfastness and wellness considering the circumstance...he says we just watch and wait. We are hoping that by Day +20-21 we see some new cells growing. Also, Robert's lab work shows no more evidence of blood in his urine. This is a very good thing. Yesterday, they were scrambling watching everything so closely afraid of signs of hemorragic cystitis. This is a condition where the lining of the bladder is bleeding, it is not good. It is a possible by-product of one of his chemotherapy drugs. Just last week they saw this same thing creep up on a patient and they could not stop the bleeding, the patient's engrafment is great, but this other complication is terrible...they try to stay a step ahead of anything that may try to rear it's ugly head!
Jeff and Robert slept in a bit this morning...last night I went to sleep in the Parent Room around 11:00pm...not to long after that I could hear Robert's IV beeping and I woke to listen closely to the activity in the room and listen if he needed me. I heard a soft voice other than the nurse's...I realized it was Jeff. He had come back to the hospital around 1:30 am--he could not sleep at the Ronald House, and Robert was glad to see him. So they decided to sleep in a bit in the morning while I went and showered. Robert felt well all afternoon and even well enough to give us a hard time about having a shower...so off went the TV until shower time happened...he smells so good now! :) Jeff went to spend some time with a group of young people that came from Nebraska to visit their friend who is a patient here; Steven is his name. Jeff and Steven's Dad, Lyle, have become good friends...don't worry Scott, he has not forgotten you :)...I really enjoy the evenings with Robert. It is so much quieter and if he is feeling well we talk and I find that he is usually in a pretty good state of mind. It is nice, because usually in the evenings after the hustle and bustle of the hospital settles down I tend to get a little blue. It can be very lonely at night in a hospital. Especially this place...this hospital is so full of activity during the week, it is unbelievable. We are blessed with weekend nurses that have become close to us, it really helps us get through the quietness of the weekend--they are so good at their job, and good company for me.
I am glad to have Mom coming in to visit tomorrow. I do not even realize if Robert knows she is coming. I have decided to let her just sort of surprise him...this afternoon when Robert was a little frustrated with the situation at hand, he began to express his frustration with God...he expressed that he did not know why he was the one who got "picked" to have cancer...why was he born into our family to be the one with cancer...he felt like God " let" this happen to him...tough questions from your child. We try very hard to help Robert understand how much God loves him and is with him at all times...we try to help him understand that God did not do this to him. I told Robert he may never know the reason why or how this came to be in his life...but that I do know that God is good, and that God loves him and wants good things for him...
Robert has begun asking if he has any mail during the day...what a delight to have mail to have to alcohol off to bring into him...today he received two packages. One contained a homemade fishing game...he outfished his Dad with the magnetic pole and he thought that was quite amusing to outfish Jeff! He then opened a package which contained a very sought after Yoda action figure from Star Wars! He was positively shocked and happy to see his favorite guy...these boxes brought so much joy to Robert, better than I remember Christmas excitement for him. It was such a pleasure to watch...thank you for the cards and surprises in the mail. He enjoys them all...Yoda has joined the other Jedi and is keeping watch in room 4020...thank you for your wonderful generosity and thoughtfulness.
Your prayers are being heard, all of them. I can see God working in even the smallest of details. This is a battle that has an unpredictable ending-they say-I feel the ending is sure, but the getting there is definitely not so certain. We count our blessings as they come. Today, blessings abound here. Thank you Lord for caring enough to make blessings for us to get through the days. Our days do not have to be always filled with confusion and pain, He gives us peace and joy. I pray that as so many parents feel pain for many different reasons, that they would find peace and the strength to allow a blessing in the midst.
Thank you for checking in and being such faithful friends and prayer warriors on our behalf...we can feel it! Much love, Kathy, Jeff and Robert...the other Charlton kids love you as well, Jessica, Christina and Matthew
Thursday, July 25, 2002 at 09:00 PM (CDT)
Hello there. Today is Day +15, Thursday, July 25th. Robert has had a more difficult day than usual. His day started out with the continuance of the pain when he urinates. There was a trace of blood in his urine, and all of this is being checked in the lab. His platelets were down to 14,000 by 10:00am so he received some more...they have decided to give him more iv fluids to help dilute the urine to help with the pain, by the end of the day Robert said it seemed less. They are carefully monitoring his weight and fluid input/output so as to not overload him...this can lead to all sorts of problems, ie, respiratory issues, high blood pressure, etc.
All of these new pains, and concerns have left Robert very discouraged today. This morning he was crying to go home...it broke my heart to hear him want to go home, to know that he was so confused and uncomfortable. They will give him something for the pain, yet, he did not want to swallow a pill that would be an analgesic for the pain when he urinates. He got a dose of morphine, and seemed to be in better spirits this afternoon. I left the hospital for a bit this afternoon while Jeff and a young man were discussing fishing and such...Robert fell sound asleep and we thought we were good for the day. I sent Jeff to the Ronald House to get some rest...he is run down. A midnight run to Krystal Burger did not help; it seems neither of us gets much sleep at night. I do manage to get more sleep here at the hospital and wake up feeling sort of normal. Whenever I sleep at the Ronald House I wake up with a tight throat, and headache, like I am allergic to something...so I think I am gonna give up and sleep here for now. I was in the Parent Room when I heard this yelling. I did not realize the intercom was not on; the yelling was Robert yelling from some sort of pain...the pain subsided rather quickly, and we were not sure what it was from. He then began vomitting. His nose constantly bothers him, like he needs to blow it. This sort of happens after he vomits, he cannot really blow it though, because his platelets are low, and it bleeds much of the time...he has to be careful not to loosen a clot. The rash on his legs is still there, not a bother though. They are not sure what that is from either...pretty much, they just sort of fix whatever crops up. They can neither predict what may be going on, nor can they tell you if it is serious or what...we watch, wait, watch, wait...so goes our days. Robert of course has to suffer with all these not so pleasant things while he waits...I am amazed at his patience and resilience. I am afraid I would have lost my mind by now...Watching Robert, makes me realize that I definitely have the easy part. The part that requires me to be his Mom. I am blessed. Wandering these halls and realizing what some children must endure makes me realize that the very least I can do is stay strong and focused for my son...Our Heavenly Father has been so good to us, we are praying that the thing with the painful urination and traces of blood are nothing...nothing that amounts to nothing, just another minor irritation on the road to recovery for an 11yr old boy who is trying to live.
I will sign off for now, Robert is sleeping peacefully, and I am too sad to write anymore for now and I want to try to get some rest...sorry, I will be back tomorrow. Love, Kathy
Wednesday, July 24, 2002 at 09:45 PM (CDT)
Hello friends. Today is Day +14, Wednesday. A good day overall. Actually this day has been a little more difficult than days of late for Robert. He has been experiencing alot of pain when he urinates and the jury is still out on the cause of the pain...we feel so bad to see him in such pain. The doctors and lab results do not show anything imparticular that could be causing it; no signs of infection. As his doctor put it, this is a good thing, because if he has developed an infection with all the antibiotics he is on, that would be bad...I theorize that there must be some sort of breakdown on the lining that would cause him pain. Sort of like the breakdown of other skin on his body...this is a result of the chemotherapy. Robert has also developed a rash on his legs. We think this is a reaction from fabric or the sheets as opposed to a form of Graft vs Host Disease...unless white blood cells appear in the morning, than we must assume it is a reaction. If there are cells in the next day or two, this rash could be a sign of GVHD. We are looking closely for this, as it is an indication of engrafment. Jeff is getting anxious to see signs of new cell growth and engrafment...
Later in the day it was time to change the dressing on Robert's line. This is to be done every Mon, Wed, and Friday...we had a line nurse, one of Robert's favorite ladies here, come up to look at it. He had experienced some pain from the stitches, we wanted her to look at it to make sure all was fine. Also, the other day one of the aides tripped over his line and yanked it from some of his medicine causing it to spill all over the floor, fortunately, it did not pull his line out. Anyway, Robert got very upset when Jeff and Ursula, the line nurse, came in to change the dressing. He was very loud and refused to let them see it. I came in the room and calmly asked him what was going on...with Robert, many times to help him keep some control, we let him set the time for certain things...ie, in 15 mins. he will do his laps, etc...this time we had waited till he was ready and he did not hold up his end of the bargain. As I asked him what was going on he became very emotional and expressed to me that he did not want to go to the ICU. Robert listens very closely to all that is said around him. He may seem to ignore us, but he listens closely. He was afraid that we were worried about him being sick, in his mind he was having too many unexplained things going on, he was scared. I calmed him down and assured him that he was doing great and that he was not going to the ICU...and that no matter what, we were going to do everything to make sure that he stay as well as he can. Finally, he let Ursula check his line, and she assured him it was fine and our day went on...
We were very fortunate to meet a new friend today. We received a visit from a very sweet lady, named Tommie. She is a friend of a friend at home in West Palm Beach. He sent her our way. We had a lovely visit and look forward to seeing her again. She brought Robert this cool laser light thing that he has been using all day. She also heard that Robert wanted to learn to play the guitar and is sending one over for him from Play it Again Memphis. Don't tell him I told you. I think it is a surprise that he wants to learn, and don't tell Robert, it is a surprise for him. This should be lots of fun, or at the least very amusing, as we help Robert learn the guitar. It is also nice to get visits from a couple of the young men who are on staff here who come by to talk about fishing with Robert. I was napping in the other room when one of them was here...Jeff told me at dinner that it makes him feel so good to know that Robert can still tell a good fish story. He said the fish still get bigger and bigger.
We are hoping for a smooth night for Robert, it seems that they come and go...last night he had much more nausea and stomach trouble. This morning his hemoglobin was pretty low, 7.2, so he got some red blood. Jeff will go to the Ronald House and I will stay here. I have concluded that I actually sleep better here...Jeff's friend from Nebraska has come back for his son's 17th Birthday...Happy Birthday Steven!
The Charlton children's tour of the countryside has come to an end. They arrived home safely last night. Mom said they were up until about 12:30! So excited to be home. Mom sounds like she is ready to go with the kids...she is totally ready to be in charge of those guys... I know the kids missed their Mimi and it sounded like a wonderful reuinion when they saw her. It is so nice to be able to envision them at home and happy. They had a wonderful time traveling and visiting family! Thank you to all of our wonderful family for taking such good care and keeping them safe for us...a few more weeks and it is back to school.
After dinner, Jeff and I took a walk around the grounds here...they are beautiful. The landscaping and trees are so beautiful, right here in the middle of this city...maybe the leaf I found on the night of my arrival was blown over from St. Jude for me to find...it was so nice to hear Jeff talk about the types of plants and trees and spend a few minutes talking about how nice it would be to have this or that in our yard at home...I have encouraged Jeff to find out about the plants of this region. He said the other day he walked through the garden center at Home Depot just to learn the names of some of the plants...it was such a pleasant few minutes...so nice to get out and talk about God's beautiful world.
We are so blessed to be in such a special place to have as a home away from home...it will be so wonderful to get to show Robert all of these beautiful things again!
Enjoy the sunshine on your face, and keep smiling and laughing...remember it is all good...Love, Kathy
Tuesday, July 23, 2002 at 09:27 PM (CDT)
Hello friends. I wanted to do my usual evening update to get things back on track. I did an update earlier, so there is going to be two for today...Robert slept most of the day. This was from a combination of lots of activity yesterday and a drug for nausea in the early a.m. that knocked him out. He has been up for awhile and who knows when he will go to sleep tonight!
Jeff went to play basketball--that was my gift; the night off to play ball! Actually, he has made a friend at the Ronald house who likes to play; a man from the Bahamas. I am glad that he has someone to enjoy letting off some stress with! Robert will be getting platelets tonight, his nose was bleeding a bit, and they were a little low so they decided to give them to him tonight instead of wait till the morning. By morning, he will probably get some red blood cells. They are glad with the way his body is processing all of these things, and tell us it is okay that he needs these products, it is expected at this point. Robert's mouth sores have really healed up well. He does have a sore throat on occasion, but that might be from the dry air from the hepa filter over his bed! He seemed rather puffy today, like he did indeed sleep for sooo long. Jeff and I had a very nice day sitting in our Parent Room listening to Robert sleep! By the end of the day Jeff was tired of waiting for Robert to wake up...he missed him!
Jeff and I answered emails, made some calls, and paid some bills. Jeff had some plans to look over for a landscape job he is planning on flying home for a few days in August to complete. Originally, the plan was for his company to complete the job in his absence, but in light of the lack of finances, he felt he should do the job through his own corp. We of course are anticipating that Robert will continue to be doing so well and it will be okay for Jeff to be gone for that time....
We wait, and pray, and trust that the new cells are on their way! My other little darling should be home in Florida by the time you read this...now the fun begins...let's hope they do not drive poor Mimi Bunny too crazy! I think they can handle it...all of them. I wish I was there to see Angel the dog when she sees her family again after a month...I am sure she will be looking for her boy...well, I know for Robert, the feeling is mutual--he definitely misses his dog!
Thank you for checking in and keep those messages coming! They do make our day...we love to hear from you guys.
For those of you who were reading the story of Matthew Hallemeir, he left this world on Monday, July 22, 2002. He was an amazingly strong and courageous young man...his fight against his disease was never easy, and he fought to the very end. I pray for his family, I cannot fathom how they must feel.
God bless each of you with strength, peace, and joy!
Kathy
Tuesday, July 23, 2002 at 12:25 PM (CDT)
Hello dear friends...Today is Day +13...Just for the record I did do a journal entry for Day+12, however, apparently it did not meet the standards of this site so, it decided to send it off into cyberspace, maybe it mistook my entry for one of Jeff's! :)
Robert had a very good Monday...he did his physical therapy and even kept his word and did an extra 3.5 laps around the floor. At first he refused to do the laps because he did not want to wear his mask...he does not like his new best friend! Well, our decision as parents has been that if Robert does not want to do that which is important and best for his well being just because...then we will not let him watch TV. We cannot ground him that is pretty much already been done. So, we unhook the cable and leave the room until reason prevails...we are willing to compromise on certain things...ie, obviously if he is sick we do not want to make him get out of bed. Sometimes Robert, like any normal kid, likes to exercise his rights as any normal kid. Well, in turn we like to exercise our parental rights...obviously in a situtation like this it is not that easy and who wants to torture a kid in Robert's shoes anymore than he already has...no guilt involved here. Jeff and I agree that when all is said and done, we do not want a healthy spoiled brat on our hands...we want a healthy Robert back (actually, we would take either, but do not tell Robert). The nurse likes that we stick to our guns so to speak...we have seen this throughout treatment, and pretty much, some parents have to give up certain aspects of their parenting to cope. I think you know what I mean. Each of us has to decide what is going to work in our individual situations and if it works best for a parent to let the child get away with everything, well, so be it...okay, I am off my soapbox.
Robert's attending doctor for the next 2 weeks is, Dr. Horwitz. We get along great with him, and have very good communication. All the doctors here are terrific. You know I would let you know if I did not like them! He came into Robert's room late in the day, and told us that he thinks Robert is doing Magnificent! That was so good to hear such a positive remark. He is very happy with how well every aspect of Robert's progress is going. He encouraged us to be patient and continue to watch and wait for the new cells and engrafment to occur. I told him that pretty much all the things of this world that go on outside of Robert's room were not important right now...and that we are focused. This pains me to say in a way...because I miss my children so much...I do sort of miss the dog too! It really hit me this weekend as I sent the children with my childhood friend, Shari Bell Tauger, to head for home, that I do not know when I will see them again. I found myself driving all around yesterday realizing that when I am in my van I really feel like they are with me...this may sound strange, but, it is the only thing I have here that I can envision them as a part of...I see them climbing in and out, here them arguing over who sits where, tossing their stuff all over the place and me telling them to bring it in the house...and of course I think of how every morning after dropping the kids at school I would pick Matthew and blankey up out of the car and carry him back into the house...I have no other place here that holds memories of them...so I may be doing alot of driving around Memphis again real soon!
Today is our 14th Wedding Anniversary! We consider ourselves very blessed to be together today, even in these circumstances...I know I would not trade Jeff for anything, and I am pretty sure he would say the same for me! When I arrived on the floor today, I got the sweetest surprise...Jeff had spent a few hours cutting out giant letters saying Happy Anniversary My Love...he then drew me a picture of a big chocolate cake and decorated it for me! It was so sweet...he begged me to take it down so that all the nurses would quit coming aroung to look at it...I said No way, it is staying up! That was so thoughtful of him...I said I just hoped that he thought good thoughts of our years together as he cut out all those letters and not all my insane moments....
Robert has been sleeping soundly most of the morning from some anti-nausea medicine they gave him very early...Jeff informed me that Robert said he was gonna beat his record today and sleep till 1:10 p.m....I have to tell Jessica that one, she will have to work on that record! The kids will be back in West Palm today...so keep your eyes open for those Charlton kids.
Also, Caring bridge no longer puts your email address on the entry to the guestbook. I agree with the idea that it respects your privacy as guests...however, I liked having your addresses so that I could have them to respond to your notes...when you sign your name, if you want to you can put your email address after that and I will see it. Thank you for checking in with us, and sorry for the problems with the daily updates...we do actually do them everyday, we are just having problems getting them posted....
God bless you all and keep you safe! Much love, Kathy and Jeff
Sunday, July 21, 2002 at 02:28 PM (CDT)
Hello All... It is day +11 and all is going well. I am apologize for not having an update this morning for all to see. I think our computer has a turned to the dark side, because every time I do the update something goes wrong. And sure as my luck goes it did. My entry last night actually showed up on the page and after exiting the website I returned and it was gone. This time Kathy won't bail me out so let me tell you about Roberts day.
Our son is an incredible young man. It seems when he has rollercoaster days like yesterday he never gets down. Robert just keeps on going without complaining. I pray that this trait continues as he matures. Many people will benefit from Roberts ability to keep calm in the midst of a storm. The Lord will be able to take this and use it for His glory and gain. It will be awesome when we get to experience this as his parents.
Well Robert's day started off with what seems to be the routine of getting platelets and red blood. He had one unit of each yesterday and required one unit of platelets today. Robert also spent most of the day in bed as his blood pressure was a little high and the doctors want to keep him calm to avoid any major problems. One thing we now know about his pressure problems is that they are directly related to the amount of fluids in his system and his sometimes inability to rid his body of the fluids. At some point we hope the staff puts him on a routine of Lasek, a drug that many are familiar with as it helps remove fluids from the body.
Robert is also doing better today. With the exception of the 50 mg of benedryl that knocked him out for four hours, he is having a great, uneventful day. He has promised to spend some time out in the hall with me. We will take laps around the floor and maybe even play some basketball(Go Sailfish). I had to get that plug in for our school back home.
Today, we will be saying goodbye to the other kids. They will be going home to get ready for school and to take one last trip with their mimi Bunny. Kathy's childhood friend Sheri, will be drving the kids to Florida for us and they will meet Kathy's mom in order to get home. Thank you so much Sheri for loving us and we ask God to watch over you as you drive. Every year for the last ten years, we have all gone to the west coast of Florida for our family vacation. Well this year we are a little preoccupied in Memphis, but the three other children will get to enjoy the beach. We go to a place called Boca Grande and we fish(Robert and I) all morning and usually at night. Everyone else either rides around on the bikes or they hang out by the water. This place really has nice beaches. Even though Robert won't be going this year, we have promised him a trip over the winter.
I know for Kathy and myself, it is going to be very difficult to be away from the other children. Jessica, Christina, and Matthew we love you tremendously and you guys have been so strong through all of this and we know you want mom and dad home soon. We can only allow them to go home because we know they will be in capable hands with their two mimis watching over them. Please pray for Kathy's mom as she will be staying with the kids 24/7 and we know they will test her at every chance. Besides this is what kids do. Thank you mimi Bunny and mimi Jane.
Hopefully, I will be going home for a week at the beginning of August. This will allow for some time with the kids. We would also like to ask you guys to pray for the Rommel family as they have undertaken the task of coordinating the building of an addition on our house. Something we could not afford but need for Robert when we return home. Joe Rommel read one of Kathy's journal entries and as he would say received a vision to do this for us. I know that it will be a difficult task, but it seems he has recruited everybody we know to make this happen. What an incredible testimony Joe. We love you and your family for this sacrificial gift. I also want to thank our church, Christ Fellowship of Palm Beach Gardens for all their support of our family during our struggle with this terrible disease.
Well, it seems like I've been rambling, so peace to all and we love you.
The Charltons
Sunday, July 21, 2002 at 02:28 PM (CDT)
Hello All... It is day +11 and all is going well. I am apologize for not having an update this morning for all to see. I think our computer has a turned to the dark side, because every time I do the update something goes wrong. And sure as my luck goes it did. My entry last night actually showed up on the page and after exiting the website I returned and it was gone. This time Kathy won't bail me out so let me tell you about Roberts day.
Our son is an incredible young man. It seems when he has rollercoaster days like yesterday he never gets down. Robert just keeps on going without complaining. I pray that this trait continues as he matures. Many people will benefit from Roberts ability to keep calm in the midst of a storm. The Lord will be able to take this and use it for His glory and gain. It will be awesome when we get to experience this as his parents.
Well Robert's day started off with what seems to be the routine of getting platelets and red blood. He had one unit of each yesterday and required one unit of platelets today. Robert also spent most of the day in bed as his blood pressure was a little high and the doctors want to keep him calm to avoid any major problems. One thing we now know about his pressure problems is that they are directly related to the amount of fluids in his system and his sometimes inability to rid his body of the fluids. At some point we hope the staff puts him on a routine of Lasek, a drug that many are familiar with as it helps remove fluids from the body.
Robert is also doing better today. With the exception of the 50 mg of benedryl that knocked him out for four hours, he is having a great, uneventful day. He has promised to spend some time out in the hall with me. We will take laps around the floor and maybe even play some basketball(Go Sailfish). I had to get that plug in for our school back home.
Today, we will be saying goodbye to the other kids. They will be going home to get ready for school and to take one last trip with their mimi Bunny. Kathy's childhood friend Sheri, will be drving the kids to Florida for us and they will meet Kathy's mom in order to get home. Thank you so much Sheri for loving us and we ask God to watch over you as you drive. Every year for the last ten years, we have all gone to the west coast of Florida for our family vacation. Well this year we are a little preoccupied in Memphis, but the three other children will get to enjoy the beach. We go to a place called Boca Grande and we fish(Robert and I) all morning and usually at night. Everyone else either rides around on the bikes or they hang out by the water. This place really has nice beaches. Even though Robert won't be going this year, we have promised him a trip over the winter.
I know for Kathy and myself, it is going to be very difficult to be away from the other children. Jessica, Christina, and Matthew we love you tremendously and you guys have been so strong through all of this and we know you want mom and dad home soon. We can only allow them to go home because we know they will be in capable hands with their two mimis watching over them. Please pray for Kathy's mom as she will be staying with the kids 24/7 and we know they will test her at every chance. Besides this is what kids do. Thank you mimi Bunny and mimi Jane.
Hopefully, I will be going home for a week at the beginning of August. This will allow for some time with the kids. We would also like to ask you guys to pray for the Rommel family as they have undertaken the task of coordinating the building of an addition on our house. Something we could not afford but need for Robert when we return home. Joe Rommel read one of Kathy's journal entries and as he would say received a vision to do this for us. I know that it will be a difficult task, but it seems he has recruited everybody we know to make this happen. What an incredible testimony Joe. We love you and your family for this sacrificial gift. I also want to thank our church, Christ Fellowship of Palm Beach Gardens for all their support of our family during our struggle with this terrible disease.
Well, it seems like I've been rambling, so peace to all and we love you.
The Charltons
Sunday, July 21, 2002 at 02:28 PM (CDT)
Hello All... It is day +11 and all is going well. I am apologize for having an update this morning for all to see. I think our computer has a turned to the dark side, because every time I do the update something goes wrong. And sure as my luck goes it did. My entry last night actually showed up on the page and after exiting the website I returned and it was gone. This time Kathy won't bail me out so let me tell you about Roberts day.
Our son is an incredible young man. It seems when he has rollercoaster days like yesterday he never gets down. Robert just keeps on going without complaining. I pray that this trait continues as he matures. Many people will benefit from Roberts ability to keep calm in the midst of a storm. The Lord will be able to take this and use it for His glory and gain. It will be awesome when we get to experience this as his parents.
Well Robert's day started off with what seems to be the routine of getting platelets and red blood. He had one unit of each yesterday and required one unit of platelets today. Robert also spent most of the day in bed as his blood pressure was a little high and the doctors want to keep him calm to avoid any major problems. One thing we now know about his pressure problems is that they are directly related to the amount of fluids in his system and his sometimes inability to rid his body of the fluids. At some point we hope the staff puts him on a routine of Lasek, a drug that many are familiar with as it helps remove fluids from the body.
Robert is also doing better today. With the exception of the 50 mg of benedryl that knocked him out for four hours, he is having a great, uneventful day. He has promised to spend some time out in the hall with me. We will take laps around the floor and maybe even play some basketball(Go Sailfish). I had to get that plug in for our school back home.
Today, we will be saying goodbye to the other kids. They will be going home to get ready for school and to take one last trip with their mimi Bunny. Kathy's childhood friend Sheri, will be drving the kids to Florida for us and they will meet Kathy's mom in order to get home. Thank you so much Sheri for loving us and we ask God to watch over you as you drive. Every year for the last ten years, we have all gone to the west coast of Florida for our family vacation. Well this year we are a little preoccupied in Memphis, but the three other children will get to enjoy the beach. We go to a place called Boca Grande and we fish(Robert and I) all morning and usually at night. Everyone else either rides around on the bikes or they hang out by the water. This place really has nice beaches. Even though Robert won't be going this year, we have promised him a trip over the winter.
I know for Kathy and myself, it is going to be very difficult to be away from the other children. Jessica, Christina, and Matthew we love you tremendously and you guys have been so strong through all of this and we know you want mom and dad home soon. We can only allow them to go home because we know they will be in capable hands with their two mimis watching over them. Please pray for Kathy's mom as she will be staying with the kids 24/7 and we know they will test her at every chance. Besides this is what kids do. Thank you mimi Bunny and mimi Jane.
Hopefully, I will be going home for a week at the beginning of August. This will allow for some time with the kids. We would also like to ask you guys to pray for the Rommel family as they have undertaken the task of coordinating the building of an addition on our house. Something we could not afford but need for Robert when we return home. Joe Rommel read one of Kathy's journal entries and as he would say received a vision to do this for us. I know that it will be a difficult task, but it seems he has recruited everybody we know to make this happen. What an incredible testimony Joe. We love you and your family for this sacrificial gift. I also want to thank our church, Christ Fellowship of Palm Beach Gardens for all their support of our family during our struggle with this terrible disease.
Well, it seems like I've been rambling, so peace to all and we love you.
The Charltons
Sunday, July 21, 2002 at 02:28 PM (CDT)
Hello All... It is day +11 and all is going well. I am apologize for having an update this morning for all to see. I think our computer has a turned to the dark side, because every time I do the update something goes wrong. And sure as my luck goes it did. My entry last night actually showed up on the page and after exiting the website I returned and it was gone. This time Kathy won't bail me out so let me tell you about Roberts day.
Our son is an incredible young man. It seems when he has rollercoaster days like yesterday he never gets down. Robert just keeps on going without complaining. I pray that this trait continues as he matures. Many people will benefit from Roberts ability to keep calm in the midst of a storm. The Lord will be able to take this and use it for His glory and gain. It will be awesome when we get to experience this as his parents.
Well Robert's day started off with what seems to be the routine of getting platelets and red blood. He had one unit of each yesterday and required one unit of platelets today. Robert also spent most of the day in bed as his blood pressure was a little high and the doctors want to keep him calm to avoid any major problems. One thing we now know about his pressure problems is that they are directly related to the amount of fluids in his system and his sometimes inability to rid his body of the fluids. At some point we hope the staff puts him on a routine of Lasek, a drug that many are familiar with as it helps remove fluids from the body.
Robert is also doing better today. With the exception of the 50 mg of benedryl that knocked him out for four hours, he is having a great, uneventful day. He has promised to spend some time out in the hall with me. We will take laps around the floor and maybe even play some basketball(Go Sailfish). I had to get that plug in for our school back home.
Today, we will be saying goodbye to the other kids. They will be going home to get ready for school and to take one last trip with their mimi Bunny. Kathy's childhood friend Sheri, will be drving the kids to Florida for us and they will meet Kathy's mom in order to get home. Thank you so much Sheri for loving us and we ask God to watch over you as you drive. Every year for the last ten years, we have all gone to the west coast of Florida for our family vacation. Well this year we are a little preoccupied in Memphis, but the three other children will get to enjoy the beach. We go to a place called Boca Grande and we fish(Robert and I) all morning and usually at night. Everyone else either rides around on the bikes or they hang out by the water. This place really has nice beaches. Even though Robert won't be going this year, we have promised him a trip over the winter.
I know for Kathy and myself, it is going to be very difficult to be away from the other children. Jessica, Christina, and Matthew we love you tremendously and you guys have been so strong through all of this and we know you want mom and dad home soon. We can only allow them to go home because we know they will be in capable hands with their two mimis watching over them. Please pray for Kathy's mom as she will be staying with the kids 24/7 and we know they will test her at every chance. Besides this is what kids do. Thank you mimi Bunny and mimi Jane.
Hopefully, I will be going home for a week at the beginning of August. This will allow for some time with the kids. We would also like to ask you guys to pray for the Rommel family as they have undertaken the task of coordinating the building of an addition on our house. Something we could not afford but need for Robert when we return home. Joe Rommel read one of Kathy's journal entries and as he would say received a vision to do this for us. I know that it will be a difficult task, but it seems he has recruited everybody we know to make this happen. What an incredible testimony Joe. We love you and your family for this sacrificial gift. I also want to thank our church, Christ Fellowship of Palm Beach Gardens for all their support of our family during our struggle with this terrible disease.
Well, it seems like I've been rambling, so peace to all and we love you.
The Charltons
Friday, July 19, 2002 at 09:02 PM (CDT)
Hello all...today is Day +9. Friday, rainy, and pretty subdued for us. This is a good thing in the transplant world. Robert slept until 1:00pm. The morphine and benadryl at 3 am really knocked him out. The sleep did him some good. He seemed to be in hibernating mode...
When he awoke, Robert was in good spirits and did some physical therapy. He did his laps and played catch in the hall with Jeff. He then played some b ball (Little Tykes style)with a new friend, Chris. Then he played some video games for a while. He has not been interested in doing any of this all week. It was nice to see him out and about. I do watch him like a hawk, and he does not mind my hovering because he himself is so protective of himself. He still always tucks his hands in his pocket whenever someone approaches him that may want to shake his hand. Smart boy!
His blood counts are prety much the same. His platelets went up to 50,000; still no other new cells, we are waiting; patiently! Robert's hemoglobin is 8.4; will probably get some red blood tomorrow. Keep him pumped up! He is sleeping like a baby right now...every mother's dream. The other children are enjoying their time in Arkansas. They sound like they are having fun, in spite of the rain! Jessica has a bit of a cold so, no visiting Robert before she heads home...actually they probably will not see him before they head home...I will see them and it is hitting me that it will be a long time until I see them again! I am going to get some rest, it is early for me...
Peace to you all, and thank you for checking in! Thank you for all the cards...they are beautiful, keep those guestbook signins coming! Kathy
Friday, July 19, 2002 at 09:02 PM (CDT)
Hello all...today is Day +9. Friday, rainy, and pretty subdued for us. This is a good thing in the transplant world. Robert slept until 1:00pm. The morphine and benadryl at 3 am really knocked him out. The sleep did him some good. He seemed to be in hibernating mode...
When he awoke, Robert was in good spirits and did some physical therapy. He did his laps and played catch in the hall with Jeff. He then played some b ball (Little Tykes style)with a new friend, Chris. Then he played some video games for a while. He has not been interested in doing any of this all week. It was nice to see him out and about. I do watch him like a hawk, and he does not mind my hovering because he himself is so protective of himself. He still always tucks his hands in his pocket whenever someone approaches him that may want to shake his hand. Smart boy!
His blood counts are prety much the same. His platelets went up to 50,000; still no other new cells, we are waiting; patiently! Robert's hemoglobin is 8.4; will probably get some red blood tomorrow. Keep him pumped up! He is sleeping like a baby right now...every mother's dream. The other children are enjoying their time in Arkansas. They sound like they are having fun, in spite of the rain! Jessica has a bit of a cold so, no visiting Robert before she heads home...actually they probably will not see him before they head home...I will see them and it is hitting me that it will be a long time until I see them again! I am going to get some rest, it is early for me...
Peace to you all, and thank you for checking in! Thank you for all the cards...they are beautiful, keep those guestbook signins coming! Kathy
Thursday, July 18, 2002 at 11:30 PM (CDT)
Today is Day +8, Thursday. Robert's day started out pretty typical. His morning lab worked showed that he was low on platelets and would need some. They were at 24,000(normal range if 140-450,000). He received to units. This caused an overload of fluids and sent his blood pressure way high. Of course, this meant he needed to get rid of all fluids quickly and hopefully that would cause the pressure to level off. It seemed to work. Our afternoon was pretty typical as well. The high blood pressure meant that Robert could not do his physical therapy...he had to stay in bed until it leveled off. It is so strange how things can change so rapidly around here. Jeff and I had just left the room to grab some lunch, Robert we thought was going to take a nap, and when we returned we found a very harried nurse with a look of nervousness on her face. His blood pressure scared her a bit to say the least. Robert and I just hung out and watched Nickelodean. Thank goodness I find most of these shows somewhat amusing and I know Robert probably finds me more humorous to watch than the shows! It is good if you can provide your child some comic relief in times like these. Jeff went to a movie...a good form of relief for him. Me, I usually find my relief talking to whomever I can find to carry on an interesting conversation. God has been faithful to provide me some good resources to go to for information on Robert's ongoing care and treatment plan. I do enjoy picking the brain of the doctor's and nurse educators. One of the nurses aides thought that I must be a nurse because of the types of questions I ask. That is a scary thought, considering the sight of Robert getting sick still makes me wince. I can do the Mom thing real well, but I do not think I could do the nurse thing...
Dr. Hale came in for his usual visit in the afternoon. Dr. Hale is a wonderful doctor. He is never in a hurry and loves to answer your questions. He is a young doctor and has 3 children of his own...he knows his stuff! Dr. Hale is continue to be impressed with Robert. What seems to impress him the most is Robert's demeanor. He asks me if he is always this calm. I said not really. I believe it is a sort of self preservation for him. He agreed that his calm manner would help his immune system and healing time. We have talked about how much serious chemo Robert has seen and how resilient he seems to be, how he bounces back. He was also very pleased that Robert weathered the ATG infusion so well. It was one obstacle he is glad he did not have to recover from. Dr. Hale reminded me that the greatest threat to Robert at this point is infection. Isolation is a good thing right now. He also told me that by tonight there would be 3 11 yr old boys on this floor on the same bone marrow transplant protocol. Each one at a different stage. Unfortunately, we agreed that statistically there is a likelihood that one of these boys may not leave here...I hate statistics! We discussed how these circumstances can bring the most remarkable people into our lives, but in meeting them and getting close, we also know that we are facing great risks and there is much pain involved.
This evening Robert suddenly felt very ill. He vomitted and his head started hurting and his mouth. His evening nurse asked me if he had Ativan before. I said yes, and she thought that would help relax him and relieve the nausea. Right after that, Robert became somewhat disoriented and very dizzy. He asked me where he was and said is teeth did not feel like they were attached in his mouth...his head was really hurting and his blood pressure was sky high. By the time the on call doctor came in it was 142/98! They gave him some meds to bring it down fast. They suspected that the pain in the head was from the high pressure and the nurse speculated that the Ativan was the source. We decided to track his chart, and add it to the do not use list of meds for Robert. I began to wonder if that was part of the source for the high pressures earlier in the week. I finally got him calm and to sleep around 9:30. He really needs his rest tonight.
Dr. Hale told me that all the things going on with Robert were pretty minor, and expected. I contemplated the high blood pressures, mouth sores, daily diarrhea, daily vomitting, hair loss(again), the jaw pain, the leg pain, the stomach pain, the headaches...all of these things are minor and expected...Lord helps when major and unexpected show up! Can you imagine, these sorts of things all in a typical day. A typical, uneventful day in the life of Robert, one of 3, 11yr old. boys...oh my! It is too much, to take. Robert remains calm and relies totally on Jeff and I to help him stay that way. It is such a blessing to be here for him...
On that note, Jeff and I have felt such an outpouring of support for us these weeks...Many of you have expressed concern about Jeff's lack of a pay check...we are not too familiar with Medical Leave. All through this ordeal Jeff has managed to work things in such a way that he has been able to give as much to work as needed, and at the same time give as much was needed to Robert. I will say this, we see Dad's here day in and day out...we have not seen too many Dad's that are here all the time. Most do not get to stay. Jeff is still doing what he can to help Jerry with the business, even if it is just moral support. No one understands his business better than he. Unfortunately, the timing of things for this is not the greatest. He has every intention of picking up beautifying Palm Beach, Broward, and Dade counties right where he left off when he returns. We are praying that Jerry sees some relief for his own sanity as well. We will keep you posted as to when the situation changes, but for now, we are doing fine....you all are so generous and it is very overwhelming. Thank you from the bottom of our hearts....do not worry, God has always provided for us and made a way for us to get through...we know He will now, and has already begun good works on our behalf.
In the midst of so much heartache and evil days...I dare say God is using all of you to bless us, and to humble us by showing your steadfastness in prayer and generosity. I need to share about two precious boys that are fighting a very good fight against their cancers...Zachary and Cameron. These precious boys share the same disease, and both need some extra special prayer right now...they are dear friends and it is so difficult to be apart from them right now, but their parents like us are on a quest to save the lives of their sons...God Bless You all--thank you for checking in.
We love you, Kathy, Jeff, Robert and Jessica, Christina and Matthew
<"www.caringbridge.org/fl/zacharyfinestone">
<"www.caringbridge.com/fl/camspage">
Wednesday, July 17, 2002 at 08:23 PM (CDT)
Hello all. As Kathy would say, I have to "get back in the saddle" sometime after my last experience trying to share with you all about Robert.
Most of what you missed had to do with my trip to retreive our other children. We had a good time talking about their many adventures in Pennsylvania( thanks to mimi Donna and their aunt and uncle, Sally and Chris)
Well today has trully been a great day. Robert has been very cheerful and very busy talking. Kathy has a unique ability to get Robert to talk and especially to laugh. To me this is the most important thing he could do during his recovery. Robert has always had a great sense of humor and the ability to make everyone else laugh. It makes me feel good that he can laugh at normal things happening around him or things on TV. Mostly he laughs at(with)Kathy as she reacts to the funny shows on Nickelodean(Roberts favorite).
As I tried to share with all the other day, It is a great day for all of us if Robert has an uneventful day. I think that can be said for all the families of kids enduring treatments for cancer or transplants. So today has been a great day. Robert managed to do his mouth care without throwing it at me, as I tend to push his buttons the wrong way, and even managed to take a few laps around the floor.
Each of these days is considered a small victory that we want to carry over to the next day in praying that Robert recovers quickly.
Well, I want to thank you guys for always waiting on these updates. I know when Kathy writes them, she has such a gift, that even I can't wait to read them in the morning. Kathy has a special way of transforming the ordinary things in life to the extrordinary blessings that we see every day. I know this not only by reading the updates but by the responses from all of you in Robert's guestbook. Maybe someday we can convince her to write a book.
Good night to all.
Jeff, Kathy and Robert
Tuesday, July 16, 2002 at 08:44 PM (CDT)
Hello dear friends...let me start by asking if you liked the journal entry for Monday, July 15th Day +5...well, if you did be sure and let Jeff know. The poor guy spent two and half hours on two different journal entries and both were deleted into cyberspace...now you may never get to hear his perspective on this whole ordeal. I have encouraged him to get back on the horse and try again...another day.
Today, Day +6 has been good as well. On Monday, Robert needed to units of platelets, and his hemoglobin was at 9.9 in the morning...I do not really have any other counts for you because there are none...Last night around 10:30 pm when they ran Robert's labs again his hemoglobin had dropped to 7.2. This is a pretty drastic drop, they speculated that Robert could be losing blood somewhere. They transfused him and by this morning it was back up to 10.3. They have pretty much concluded that there was a sort of error reading last night. One unit of blood would not have increased his blood level that much. Therefore they are speculating the initial reading was diluted or inaccurate. He is fine...I am not real pleased when inconsistencies crop up like this...I am just grateful that it was not something causing a loss of blood. It is a strange place to be in when you are relying on staff that sometimes seems inconsistent. I know that this is the case everywhere and different people do things differently...and I was warned and advised by many parents to be absolutely on my toes at all times. Even here, in such a pristine, children-only faciltiy. Even here with everything at my son's disposal, things can happen. I cringe when I hear the stories from a Mom about her nurse that day, a nurse who was having a bad day and decided to take it out on her 3yr. old son...by being not nice, etc. I just try to stay focused--focused on keeping Robert in good spirits and focused on getting well.
The children came into Memphis yesterday. Jeff made the trip to Nashville to retrieve them. I am sure his journal entry from last night was full of stories from the kids. This morning when I arrived with the children for a short visit before they left for their next adventure...we thought we would visit for a short while, Robert asked us to leave, and said he did not want any visitors...I said, okay...I can tell that when Robert hears the plans we are making for the other children and such that he does get a bit blue. I can see that it reminds him of the life outside that he is missing. I also recognize this for myself. We are both living with an "out of sight, out of mind" mentality. I have come to realize it is a survival instinct. I respect that. I want nothing more than to focus on Robert and getting him well, and letting him no that right now, he needs me and Jeff the most and we are here. I have never in my life been so devoted to a mission. There is such a single-mindedness involved in this process. I almost feel like I betray Robert when I step outside into the sunshine or awake in the morning knowing I slept all night without a beeping or prodding waking me up...I feel this way, yet I realize everytime I feel this way that no matter my feelings of confusion, home-sickness, or pity for myself, that I am not the one who has had to endure what my son has. I am not one of the children that are enduring so much too be able to step into the sunshine once again...I started thinking of that day when Robert walks out of here...what a moment when he sees the sunshine again for the first time and feels its warmth on his skin. He still has the glow and some of his tan from his last outing on his best bud's boat...Yesterday when his doctor for the week came in, he said to me that he could not get over how good Robert looked. He said he looks just like he did a month ago when I saw him in clinic--and he has gone through so much in this month. He was amazed. I find such comfort in being by Robert's side all day. He teaches me about remaining calm and staying focused. The Lord is showing me more and more everyday His ways of peace and patience. His steadfastness and courage through Robert. When Robert gives us a hard time about doing certain things, the Lord shows me a new way to try to empathize and hurt with my son, yet be strong enough to make him do that which he may not to because I know he needs to.
I had a professor once who told me that in the Christian life our walk with God can be like a pendulum, swinging either to the extreme one way or the other...I understand this concept, yet I am searching now for the relationship in which I live with an understanding of the depth of God's love for me, and all of His children. Tonight I struggled when I heard that one of the girls on the floor had died yesterday. I struggled as I thought of how she has become part of the statistics that did not make it, I wondered if she was the sacrifice for the children that remain. I struggle as I realize that the likelihood that other children here even now will not survive...this is so unacceptable...it is heartbreaking--who is pulling the strings here. What are we to learn from the death of one in her youth, one who never stood a chance and had no choice. I am searching. Personally, I have lots to learn. Lots! I am growing up with my kids in so many ways...I am so grateful that God is so patient and there for me, I feel like in Him I can find the answers to many questions...I will never understand why this is going on in the lives of children, I do not even ask why because it is unanswerable. I am blessed today, I am blessed because for a brief moment my life interacted with a beautiful Mom who never gave up hope for a miracle for her daughter, and then in the end had the strength to believe and trust that her daughter was in a better place...blessed indeed, such courage from such pain. God bless you Diane, I lift you up now and pray for peace in knowing your daughter is in heaven even now...Goodnight my friends. Much Love, Kathy
Sunday, July 14, 2002 at 08:04 PM (CDT)
Here we are Day +4. We started out this morning just sleeping in...Robert and I watched movies until about 10 am. I jumped up and went out to get a shower and change of clothes. Jeff was snoozing in the Parent room. When I returned I coaxed Robert out of bed, and he decided it was time to wake up Dad...I snuck in and turned on intercom so that Robert could call to Jeff and wake him up...I am sure that was a pleasant sound to have your silly son calling to you to wake up! Robert had a bath and then ventured out into the hall for his morning stroll. What a difference a day makes!
Robert got a phone call this morning from his cousins Michael and Anthony. They are his fishing buddies who live in Bradenton. He adores these guys. One of his goals is to get well and get home, because the guys promised him a go-kart and to teach him how to drive one...Robert is holding onto this plan with all his might...me of course will somehow put this off for at least the next year while he recuperates! He laughed and actually liked talking on the phone with them. He even grossed them out with the sounds from his mouth suction thing! Boys will be boys...Robert was so chatty this afternoon that when Dr. Woodard came in for his daily visit, he asked Robert how much pain medicine he was on! Actually the pain thing sort of goes like this...they come in and look in his mouth, the nurse or doctor or physician asst. sort of wince, and ask Robert if he needs some morphine! I guess it looks pretty bad in there. I try to see in, but looking over their shoulder does not give me a great vantage point. I can see it is very red and swollen. Robert has not been in much pain at all though! They cannot believe it...it is just the way he is. I have appreciated all of you who have addressed this issue of pain medicine in the guestbook, I read them to Robert and he listens...your supporting and encouraging him in such a way is wonderful. We have just conculded that he has a high tolerance for pain, of course he does want them to give him the self-controlled pump for the morphine...don't you just love my technical terms. Robert's blood pressure has not been an issue either. They are not concerned with it for now, and will watch it as the cyclosporin builds up in his system and might create a problem later. Robert is exhibiting effects from all the drugs...in some form or another. His body seems to level off and find a balance, he has always been able to tolerate so much. He has had some tingling in his feet and head, his skin is getting broken down in spots, and he is getting a rash on his arms...to him it is just another thing to deal with and he does not even seem to notice until someone points it out to him. I am grateful these things are tolerable for him and not making him miserable. That makes it sooo much easier to take all of this.
I received an email from a friend in New Jersey today. In it she shared with me about during service today they had a special time of prayer for Robert and our family...she said they then went on to sing the hymn, "Great is Thy Faithfulness". This has always been a special hymn to me...and as I read her letter, I sort of had a revelation, a picture in my mind of all the people across our country in church, sisters and brother in Christ, all at about the same time praying...praying for a boy named Robert. Some of you know him and our family personally, some of you do not. But for that time, on Sunday morning during "church time" many were coming together to pray for Robert and our family. What an amazing realization, I am humbled and blessed beyond belief. I then realized that today was one of the best days we have had together with Robert in a long time...we laughed, talked and shared so much in this one day. A blessed day, Sunday...Day +4...I shared with Robert how I recognized this to be no coincidence...not just a "lucky" day to have no pain, no diarrhea, no vomitting, no tears...a blessed day, blessed by God, blessed because of the prayers of all our family! I only hope that as you reflect on your days, you can look and realize that they are miracles of God, special times to give thanks,and recognize that through love, and support and prayer they are blessed.
God bless you for your faithfulness, your love, your support, and your prayers...bless you much! Kathy, Jeff and Robert
Saturday, July 13, 2002 at 10:06 PM (CDT)
Hello all. I wanted to be sure and update Robert's page before I dozed off for the night...it is definitely time for bed.
Robert has had an interesting day. He has done pretty well--amazing as far as I am concerned. He has started suffering from the mouth sores and some breakdown of his skin in certain areas. This is all caused from the chemo and radiation. We are treating these things with whatever we can to relieve some of the discomfort. Robert has finally been given a new gadget that is for suction. Poor guy for the past few days has been lying in bed with a mouth full of saliva that was too hard to swallow or too yucky...it would end up making him gag. One of the very perceptive nurses walked into his room and said, why hasn't anyone given this poor boy a suction thing!!! Amen! I call it Robert's magic wand. When it is under his covers it sounds like a pot of water boiling. I asked him if he was cooking Mac n Cheese under the covers. Robert has also begun taking Morphine to help with the pain from the mouth and throat sores. There is a big debate going on about the blood pressure issue Robert is having. The docs had ordered a blood pressure medicine in pill form. Well, many of you know the unbelievably difficult time Robert has taking pills (his nurses back home reading this just said AMEN!). So, today when it came time for the pill it became quite the battle of the wills...Jeff's and Robert's. Robert had not slept at all today, and he was in pain, on morphine and had a pill to swallow down a swollen throat...you get the picture. Well, we managed to psyche him up, and he swallowed the pill. Unfortunately, it did not stay down. Needless to say, the great debate continues. One possibility is that his pressure was up from the marrow infusion and could be leveling off by now...another possibility is the cyclosporin he is taking to help his body engraft with the new marrow could be raising it, this is common with transplant kids. Most transplant kids just take their pills and go on...well, we all know Robert is not like most kids. So, after tears, and some hollering (Robert gave us the busines a bit) we gave up for today. Dr.'s orders. Tonight when his night nurse came on, she suggested giving him the IV form of a similar medicine. What a bright idea! She may just be my new hero...
Today has been a bit of a battle of the wills...Jeff and mine, Robert and Jeff...we are trying to find the best method for navigating the new waters that are getting pretty deep! God is gracious, he gives wisdom without any stipulations...in the book of James in the New Testament he tells us this, just ask for wisdom and He will give it to you. I guess the Lord knows how much we-each of us-needs it!
Thanks for checking in...a final note, please pray for the family of a young man named Matthew...he is not long for this world. He has fought a very brave fight against leukemia for the past 2 years. Unfortunately, his bone marrow transplant did not manage to keep his cancer away, and it is overtaking his body. He is the youngest of three children at 16. He may already be in heaven as I write this...his story is one full of love and courage...please pray for his family as they face this. I cannot imagine their pain. Below is the website for this astounding young man, his mother does an amazing job updating his page...
<"www.caringbridge.com/mo/matthall"> Join some of the other 20,000 people that have signed onto his page to show support.
Much love and peace to you all--Kathy and Jeff
Friday, July 12, 2002 at 11:07 PM (CDT)
Dear friends, today is Day +2. Robert is doing well, as well as can be expected. He had a pretty good night's sleep and even managed to stay up for physical therapy. Robert enjoys his time with the physical therapist. It does wear him out, but he does it. He spent most of the day sleeping. Jeff came over to the hospital around 11:30 am, and we grabbed a quick bite for lunch. We are fortunate to have this time to talk and gather our thoughts and get off the fourth floor for a bit. It works out that it is usually the time that Robert is sleeping and he does not mind us not being there during that time. We figure we need to try to get at least one good meal in for the day! We are definitely pacing ourselves. It is hard to believe that we have been here almost 3 weeks already.
I gave Robert a photo album today. It is a special one that has recorded messages in it...it was so sweet to see his expression as he listened to the messages. The one from his best friend really made him smile! It was such a guy thing between the two of them, "Weedman Bob" liked hearing from you Ryan. But, I must say, I hate to tell you I think he misses his dog the most...he did get all misty eyed as he saw the picture of him and Angel, and listened to her barking...I told him it would be so much fun to have Angel hanging around with him...of course he would try to sneak her in his bed, and I know the nurses would not go for that...even when he gave them the whole "my dog's mouth is cleaner than any humans..." speech! I have heard it many times over the past year, every time I caught him letting her have a lick-fest on him! Robert is all boy. With a really big heart.
I can see him struggling so hard with the feeling of wanting to just sleep and hide away from his troubles...yet, he tolerates us making him do his mouth care, and now he has started having to take blood pressure medicine--many of you know how much he hates to take a pill. He will get used to it. I do not think he wants to swallow anything...the mouth and throat sores have started. He says it hurts down in his throat. The Physician Asst. speculated that the bit of blood in his vomit this morning was from a sore down in his throat. This is considered pretty normal, from the breakdown effects of the chemo and radiation. Tonight his eyes were burning as well. I do get very frustrated with the fact that they want to treat him with morphine or other things without necessarily figuring out what is causing certain things. I feel like they have come to expect so many of these things that they just treat it like everybody else, yet at the same time all I hear is how every transplant patient is so different. I need to feel like they are looking at my son for who he is--someone's 11 yr.old child, a brother, a friend, a student, you know a real person--not some compilation of side effects! The Physician Asst., is a man named Ken, he comes in twice a day to check on Robert. He told Robert this afternoon not to feel like he had to be anybody's hero...that if he was in pain he needs to take some pain medicine...Robert does not want any.
It is so strange for me to have so many people discussing my son in rounds...I am so used to having our much beloved and trusted Dr. Gowda calling all the shots...I must learn to realize this is the way they do things. I guess I am kind of spoiled going straight to the source...our doctor. Not the doctor on call that I have never seen before or one of the "fellows" as they are called. I do find myself apologizing alot for asking so many questions and feeling like a pest. Many of the parents here seem to just go with the flow...well, I am anything but one who goes with the flow...they are very tolerable of me. I definitely think they like Jeff better! Oh well, they get two for the price of one Robert! Thank you God, that we are both here.
I thought I would share with you all why Jeff was so late getting to the hospital. The Lord saw fit to send Jeff another Dad with whom he could become friends with. It turns out he is much more sociable than I...all that sounthern charm and such. The wonderful man is from Nebraska. He is a farmer, and a high school basketball coach. His name is Lyle. Lyle's son is a patient here at St. Jude. Jeff and him spent much time talking about their boys, and praying for them...I am so pleased that the Lord saw fit to send him this friend...Jeff and I agree that it is so strange to have left life behind in West Palm. We sort of feel like we have left the other children behind as well; this is not easy for us. Jessica, I know you will read this...remember how much we love all of you, and remember and hold close in your heart that we, Dad and I, would do everything in our power to assure the health and well-being of you and your sister and little brother. We are here so that we can return to you all a complete and new healthy family, with Robert. Thank you for being so strong, and holding down the fort. Kiss, and a hug for each of you.
On that note, I leave you all for another night. Take care, and good day. Love, Jeff and Kathy
Friday, July 12, 2002 at 04:28 AM (CDT)
Good Morning. If you are just checking in and did not read the entry for Thursday please do...It is actually very early morning and I could not sleep so decided to do a little therapeutic journal writing. Robert is sleeping soundly, the Disney channel in the middle of the night is sort of like comfort food for a kid. We both actually got some sleep from around 10pm to about 3am. Robert manages to sleep pretty good even though his IV is blinking almost every hour, and they come in to take his vital signs all the time...I was asleep in the parent room, it has a very good intercom system which allows us to hear Robert breathing it is so sensitive, of course the cabinets slamming in the hall is very magnified...
I heard Robert stirring around 3 a.m. I looked through the window and saw he was not in the bed, so I knew Mother Nature had gotten him up. A trip to the bathroom takes like 20 min. these days. I was so impressed he managed to get all unplugged and into the bathroom without me...many trips call for a change of clothes and clean socks...I have become a bit of a fanatic about the germs. The "F" word in our family will forever be for "Fungus"! I watch so carefully the lines that lead straight from Robert's heart and dangle precariously...I do not like them to touch the floor and I watch like a hawk everyone who touches them to make sure they alcohol everything. Parents around here know that there is so much opportunity for germs and this is a very susceptible area. So, I meet Robert in the bathroom around 3a.m. I get him all cleaned up, we do not let Robert do this at all...not that he would want to. Then I remind him to wash his hands...after I pull up the pants, because he is busy holding his lines. Earlier in the day Robert went to rinse his face and mouth off before he had washed his hands, and I about fainted. He of course gave me the "Look" and rolled his eyes. This of course brought on my 5 min mini lecture about germs and hands, etc...we recovered, and I am sure he is just glad I did not let out a blood curdling scream or something. So out of the bathroom we head. Robert is heading for the recliner, and I hear him tell himself, "I CAN DO THIS!" I look at him and say "Yes, you can..." I look at the clock, it is 3:20 a.m.
Of course this sent me into about an hour of reminiscing about life with the Charlton children. I started trying to remember all of Robert's teachers in school and picture him in Kindergarten. In my mushy brain I think of him and Matthew as so much the same at this age...I started thinking of my 3 children having so much fun with family in Penn. I remembered Matthew saying to me the other day on our way to Nashville:"Mom, I like it when you yell!", I said "I guess it is sort of like comfort food, and you know everything is gonna be alright..." he replied, "Yeah, but I like it when you yell at Christina better!". Kids, gotta love em...and that we do. Well, it is storming now outside, thunder and all...I will pretend for a few minutes in the dark of night, that we are home in West Palm...safe and sound and listen to the rain...sorry guys, we actually would like some rain up here...
Stay dry, stay safe, and stay right there with us...we need you. Who else could I ramble onto in the middle of the night! I wonder if these pages can be printed to keep for Robert to read someday...someday if he ever wants to reminesce on these times...
I will be back later today for the update on Day+2...Peace!Kathy
Thursday, July 11, 2002 at 07:59 PM (CDT)
Hello everyone. Today is Day +1. After a long night with not much sleep, Robert has had a pretty good day. He got up this morning and had a visit from the physical therapist. She brought a stairmaster sort of machine for him to work on. They also went for a couple of laps around the floor for exercise. He is feeling good and not feeling achey from that. I am glad for this. I would hate for him to get discouraged with muscle pains in his legs.
In the morning Robert was suffering with a bit of pain in his stomach. It seems to have subsided. I felt that it was probably a by-product of the strain on his stomach from the vomitting and diarrhea. You can imagine how tough this must be on a system. Robert amazes me. He has a high tolerance for pain and discomfort. He did not want any pain medicine. He ended up sleeping a good while this afternoon, and awoke feeling like talking and tried to drink a little. He ate a popsicle, and drank some juice. They started him on the IV nutrition last night, he gets the "skim" version because he is carrying a little extra body fat...Robert and I have sat together all day; and now we are just "chilling" watching t.v. I am sure soon enough Robert will want to start playing video games and such. He was very pleased to get some mail today, and even had a visitor from back home. A young woman from our church was in Memphis on business and called to see if she could come by to meet us and see if we needed anything. She brought Robert a couple of cool little FL trinkets, a FL fish snow globe, and a FL "Robert" keychain that we have hung on his IV pole...he really liked that.
I was sharing with Robert about how our church had a special prayer for him last night. And how so many people are believing that God is healing him and praying for him. I asked him if he believed this as well, he said "Yes!" I can see such determination on Robert's face, he knows he has to do certain things to get well...it all takes time, and we are taking our time.
Thank you for checking in...if any of you have any specific questions or would like to email me personally, my address is on the bottom of this journal. I spent the whole afternoon reading journals and stories of other children facing their cancers head on...the faith that I read about from so many parents is AMAZING...some have already lost the battle against the cancer, some are very near the end, some are fighting very hard and continue to be in remission. None of them know why, understand why, or even bother asking WHY?--they are too busy living, enjoying the time they have. I so enjoyed today with my son, and I know that Mimi in Pennsylvania enjoyed my other children today...it is all good.
Peace and blessings, Kathy
Wednesday, July 10, 2002 at 07:04 PM (CDT)
Hello. It really is a new day. I was awaken at about 5:45am with the news that they were doing the infusion of the new marrow at 6:30am. I was so suprised! My first thought was to get a message to Jeff to get to the hospital, he slept at the Ronald McDonald House...I knew he would not want to miss a moment. The nurses tracked him down and he said the phone ringing jolted him out of a deep sleep.
At a little after 7 am the lab technician came into Robert's room with the new marrow. She was all in her sanitary scrubs and said that the marrow could be kept in the state it was for about 5-10 mins. She beamed with how proud she was of her "product". She did not mind us snapping a few pictures (this is definitely not the sort of thing one ever expects to have in the baby book). Robert's nurse for the day was running on full steam...she had only had half a cup of coffee and had a few critical things to do before the infusion. They give him hydrocortisone, and benadryl. Poor Robert, he was quite sick to his stomach as they confirmed it was the right marrow for the right patient. His nurse rushed to get him some medicine to help with his nausea. He was hooked up to the blood pressure monitor with a heart monitor, and respirations monitor, and a oxygen monitor on his finger. He will be monitored closely for the next 12 hours. Right as they began the infusion Robert's blood pressure got really high. The nurse looked a little nervous and they quickly gave him a medicine to get it down. All of his other medicines and drips had been stopped for the infusion. Robert was wide awake and watched closely as the new marrow was given to him. He asked a few questions about the color and content...the donor had the same blood type as him, so it was red in color. They did not have to take out the red cells. It did not take long, and the 6 of us watched and new we were watching history being made, the new beginning of a life for Robert.
They have been watching Robert very closely because his blood pressure has been a bit high on and off all day. He does not even mind all the nit picking...His Grandpa Mitchel came down to see him and Aunt Joyce came by. Robert is very full of congestion and it is causing a lot of heavy coughing and gagging up mucous. The poor boy is very puffy and swollen, his face his beet red. He is trying so hard and not complaining. He seems to understand that this is all part of the process. Unfortunately, it is still going to get worse before it gets better. These things he is dealing with are not even the full effects of the chemo. Those will start in about 5 days...the fevers, chills, mucousitis (mouth sores down the throat), nausea...and then we must start to watch for the Graft versus host disease...
We will get there...Robert will get there. We are in this for the long haul. I must go now. Robert is calling...a sound I do love to hear, "MOM!"
Thanks for checking in...Peace to all of you, Kathy
Tuesday, July 09, 2002 at 09:23 PM (CDT)
Well hello. It is Tuesday, Day -1. The life saving bone marrow will be infused tomorrow. Robert is holding up well. He is tired and feeling many of the typical side effects that are expected. Mainly he just feels cruddy...you can imagine. I have hospital duty tonight. Jeff went back to the Ronald McDonald house. It was very nice today to run into a Mom from home. Her little girl has been up here for a few months, and they are hoping to head home on Sat.
Robert needed a blood transfusion this morning; his platelets are on their way down as well. They are at 77,000; his hemoglobin is probably around 10; all other counts are basically zero. I am amazed that he can even get out of bed to use the bathroom. And that is alot. They have to keep the fluids flowing out in order to keep him in good shape. Tonight he started feeling like he was having heart palpitations...he is calmer now. I continue to be amazed at his countenance, and I know he will start to feel better soon.
Jeff received a bit of unfortunate news this morning. Apparently, the rain is taking its toll on his business...his boss, the owner of the company he works for, had to basically lay him off completely for the time being. Jeff knew that it was going to be very tough summer with a lot of big landscaping jobs going at once. He knew with him being gone it was going to be tough to get everything done, and then factor in the rain, and BAM, you have a landscape company coming up short of cash...we know that things will work themselves out somehow. Jeff and I made a commitment to both being here for as much of the time that we can. We both know that is the most important thing. I am not sharing this with all of you to muster up more pity or whatever, I just wanted to share another one of the very common harsh realities that a family deals with no matter what is going on in the life of a child. Life does still keep moving even though it seems to sort of stop while you sit in a hospital day in and day out...I hear many stories of job losses and financial problems. Jeff and I have come to enjoy some of the freedoms of a good job, and hard work...but we have gotten by on nothing before, and if it comes to that, than so be it. We have been on the receiving end of much generosity in our life together. Jeff is the first one to give his last dollar to someone in need, and me, well I may not have a dollar to give away, but my closet is always available!
Facing this situation this morning, I realized this would put some added stress on Jeff. As I reflected on the situation I thought about how a while back when a hurricane appeared to heading straight for West Palm I decided to take the kids and go West. I got a laundry basket and filled it with a few days worth of clothes for me and the kids, grabbed important papers of life, social security cards, shot records, birth certificates...a photo album...that sort of stuff. I loaded the kids and the dog (I left the cats :)) and as I pulled out of the driveway I realized my little wood frame house might be blown away...it did not really matter, I left it to God and was grateful for some warning and a place to go. Jeff had stayed to work because they had lots of trees to secure, etc. I reminded Jeff of this and reminded him that as long as we are safe, and together as a family that is all that matters...he agreed.
Thank you for continuing to bathe Robert in your prayers, and remember to be bold and trust that God is doing what we ask...thank you for joining our little family in the battle to keep us together...Robert is a part of this family we will not do without!!!
God bless you and tomorrow is the day--late in the afternoon. One final note, the person who was gracious enough to go through with giving his marrow must have great character, thank you for keeping your word, and for donating the life saving marrow for my son...you might even read this page...May God bless you wherever you are and may you have a speedy recovery and a long life...God bless you.
Much love to all of you, and a special prayer of thanks to Robert's donor...The Charlton Family--Jeff, Kathy, Jessica, Robert, Christina and Matthew
Monday, July 08, 2002 at 09:03 PM (CDT)
Hello dear friends. It has been a pretty quiet day here...Jeff spent the night with Robert last night, and both were up quite a bit. They were exhausted. I am a bit of a night owl these days, have been for a while, I guess it is left from the days when the children were newborns. I acquired the gift of cat-napping from my Dad...Robert has been able to rest more today, which is good. When I came in this morning all he wanted to do was hold my hand. So we sat for a long time watching a movie together just holding hands...
His hemoglobin has managed to stay pretty good to this point. It is still at 10.5. They will not transfuse until it gets below 10 while he gets the ATG. Today was the last day of the chemo. Tomorrow is the last day of the Rabbit ATG. Fortunately, that has not even had the adverse reaction that is most common with these kids. His blood pressure has stayed up where it needs to be. Robert as you can imagine has no desire to eat or even drink anything. He only got out of bed to use the bathroom. Tomorrow we will work to get him up and do some laps around the floor for exercise. Transplant day is coming...Wednesday. Then we pray, pray, pray for the new cells to grow. As I hold Robert's hand, and scratch his back and rub his head, I imagine the bad cells leaving and his body preparing for rejuvination. I know this takes time, and I know he will get there. Robert is very focused I can tell. He looks like he is pondering so much, but does not want to talk at all. He has taken to hand signals to tell us what he needs. I do not mind as long as he tells me something...
Last night as I got up to get the laundry out of the dryer, it was 1 a.m., I saw a couple of Dad's outside shooting hoops. I told Jeff they had a basketball court and he decided to take the night off and go get some exercise...it is good to be able to get out of this place for a bit. It is so strange to see so many parents and know that they are in some state of dealing with a serious illness. I am learning a great deal about prayer and praying for others...I can sense that many of you are too, our prayers are heard, and I believe today they have been answered. Tomorrow, we will face as it comes to us.
Stay safe, be happy and laugh...I have come to love laughter...it is good medicine.
Peace and blessings, Kathy
Sunday, July 07, 2002 at 10:53 PM (CDT)
Hello dear friends. I am anxious to write you tell let you know that Robert did so well today. Weeping may endureth for a night, but a shout of joy cometh in the morning! That is what Jeff, Me, and Robert's nurse today felt like. Cindy was his nurse yesterday and today...she confessed that even on her way to work in the early hours of the morning she was taking a deep breathe expecting the worst for today. She knew what Robert had to deal with and she knows first hand how difficult it can be. Praise God, Robert was really a different boy than yesterday. Yesterday he had a one hour infusion of the ATG that made him terribly sick, especially when coupled with the Thiotepa chemo...well, today he had a 6 hour infusion of ATG to face, and at the same time another tough chemo known as Chsychlophosfamide (Cytoxan). His nurse was so pleased with how he "sailed" through it. He did have some nausea, diarrhea, but no fevers...
Robert's day started with an EKG, and a bath. He has had a total of 8 baths in 24 hours. Every time he had a bath his bed was changed, the Thiotepa seeps through the skin so badly...he did not even mind Mom bathing him in the middle of the night while Dad got some sleep. He even joked with Jeff today about how asleep I was as I tried to get him in the shower. Robert thought very hard about eating, but did not succeed. He drank a hot chocolate, but it did not stay down after one of the sweet ladies that mops his room twice a day came in. The smell from the cleaner did not agree with him. We are going to have him wear his mask while they clean so the smell does not get to him. His nurse kept him hooked up to a heart/blood pressure monitor all day to keep an extra close eye on him.
I know my journal entry last night really spoke of the pain we were feeling yesterday, and Jeff and I could really feel the response of prayer and support today...God is using all of you to keep Robert right there in His hand, safe...we are so thankful for today. Tomorrow we will get through as well. He has the exact treatment for tomorrow. Nurse Cindy will not be with us, but, we know another gentle, kind, consistent, strong one will be...
The children made it to Penn. and I know they are going to have a wonderful time their with all of my family. I am going to head off to bed. It is getting late, and once again thank you for being so faithful and checking in.
Peace to you, Kathy and Jeff
Saturday, July 06, 2002 at 10:27 PM (CDT)
Hello. Today is Day -3. Robert has had a rough day. His blood counts are still the same. His platelets and hemoglobin levels are holding out. He will probably need transfusions of red blood on Monday. He started his chemo. The chemo he received today required that he be showered and have his clothes and bed linens changed every 3 hours. By this aftnernoon he was quite tired of that ritual. Especially when the flu symptoms set in from the Rabbit ATG test run he had today. It was an hour infusion designed to see how he would react to it; if there were any serious adverse reactions initially. He will receive this drug 3 different days. He suffered all afternoon with aches and pains, his legs hurt, chest hurt, and finally he spiked a fever of 103.4. This is only the beginning.
Jeff stayed with Robert all day and nursed him along, and encouraged him to stay strong. At one point once the fevers set in Robert finally decided he had enough. He told Jeff no more and said he wanted to go home. Jeff told him that he knew what that meant and that he(Jeff) would not take him home and handed him the phone to call me...Robert decided to stay. I was en route to and from Nashville delivering the other children to my brother and his wife who were taking them to Penn. in the morning. It was about 450 miles of driving. By the time I finally made it back to Memphis I was convinced I was going to lose my mind. Thank you to those of you who kept me company on the phone to help keep me alert and going. I do some of my best thinking in the car alone...
The young lady I told you about yesterday, the one with the fungus, she was sent home today. Unfortunately, this means only one thing. I have been pondering this all day. The pain her mother must be feeling, the pain my son is enduring, the pain Jeff and I are suffering. It is a strange sort of torture that we must endure. We are at a point of no return. No matter what happens at this point they must continue with the chemo, and other drugs. Robert must go through this hell to be healed and experience a wonderful life. Somehow I know that God will give each of us the strength needed. Robert will find it within himself to pull through, and Jeff and I will find the strength to will him through it. Mercy and grace about much. Some very scary issues that face us as parents are things like, manipulated marrow, fevers, and FUNGUS, graft vs. host disease, graft vs. leukemia disease. I have met several children who have had more than one bone marrow transplant. And several people have shared stories of multiple transplants. One thing to keep in mind is the timing of the transplants. Robert's body could not withstand another procedure like this for a long time, a couple of years...this has to work. We know it will, and we recognize that we are watching a miracle in the making.
God has been faithful to provide the best nurses to be on duty these very difficult days, we know that they truly are the life lines of days like these...we thank Him for that. We are still searching our "instincts". We are not clear on some things, we need to be. We need peace with our choice, and wisdom, divine wisdom, to make our choice.
Jeff began to feel blue about the other children today while I drove them along. He began to think about how much they must miss their brother and our family...we know how hard this is for them. Thank you to our family for helping get them through this...they were here with Robert for about an hour the other day, I do not think they will be back to see them for awhile. He enjoyed so much having the hustle and bustle of their company...
One final thought that came to me as I drove along...it almost consumed me this concept of knowing that my son must endure such torture to survive...as the tears and pain in my head and heart almost took over, I suddenly thought of how hard it must have been for the Lord to watch his son be tortured...suffer that we might have life. I also thought of how much pain His heart feels as He watches any of His children hurt and suffer...to God be the glory, great things He has done and is going to do. Peace my friends--go hug your babies...husbands, wives, family, dogs, cats, anything you hold dear...and thank you for being there. Kathy and Jeff
Friday, July 05, 2002 at 10:10 PM (CDT)
Hello dear friends. It has indeed been a long day. Neither Jeff nor I got any sleep last night...so much on our minds, and he is at the hospital and I am in the hotel we just mull it all over in our minds...Robert had a pretty good day. He finished his radiation today. God bless him, he handled that like such a trooper. He has been consistently not feeling well, and is pretty nauseated and gets sick at least once a day. He is not eating or drinking. They will probably start him in on iv nutrition/TPN soon if he has no calorie intake, he has already lost 7 lbs. Good thing he had some extra to spare.
I drove down to Miss. to pick up the other children. They will spend the night here and then I will drive them to Nashville in the morning to meet my brother Chris and his wife, they will take them to Penn. for a visit up there. Don't know how they will get back yet...Nashville is about 200 miles from Memphis so I have a lot of driving to do tomorrow. Jeff and I managed to pack all our stuff up and load the car to move into the Ronald McDonald house today. It is a very nice place, I still feel like I am living a made for tv movie or something, this is so hard to deal with. Jeff and I are both at the ends of our ropes with trying to decide about the study protocol Robert is on. We are not getting any very good answers and since there are no second chances at this point for Robert we really feel so much pressure to make the best decision for him. A friend, who is also a pediatric oncologist, told us to follow our instincts...we are both so tired and stressed who knows what are instincts are these days.
Jeff and I met a wonderful Mom today. Her youngest daughter is a patient here. She is a teenager who has AML; and just had a bone marrow transplant. Her transplant seems to have taken well, but the young lady has developed the vicious fungus and has had to endure a surgery to remove the fungus and has a 12in scar down her back to show for it. The fungus they think is in her brain. If that is the case there is nothing more they can do for her. Just last Fall this young lady was the best tennis player in her region...it is so sad, heartbreaking...we are praying. Many people have tried to tell Jeff and I about how hard it is to see the things we will see during this time. They tell us to just stay focused on Robert and getting him better...those of you who know us best, know that we will, but also know how close we get to our friends and other parents who are suffering...
Robert has his first round of chemo tomorrow. It is called Thiotepa. And he has a trial run with the Rabbit ATG/ to see if he has any serious adverse reactions. It will be a long day. The weekends can be so long in a hospital. It is so quiet...especially here--there is no hustle and bustle from the clinics downstairs, no childlife people, no Starbucks, and no mail...not that I have gotten anything yet (Moms...) I feel like I burden you all with so much by telling you these things that we live through day by day. I know you cry with us, and rejoice with us, and hopefully get some of my jokes...thank you does not seem to be enough to say for all the support you have shown us. God bless you richly with health, love, peace and joy...Kathy
Thursday, July 04, 2002 at 10:51 PM (CDT)
Happy 4th of July! We had a very quiet day. We slept in a little since Robert did not have to get up early for radiation. He and I watched movies most of the day, he was still wanting to lay around all day, not very hungry and just sort of mellow...unfortunately, late in the day when one of the ladies came in to change his bed, she had quite a bit of perfume on, he got sick to his stomach. After that his nurse gave him a dose of benadryl to help him rest. He fell fast asleep for most of the night. We did manage to get him up to get weighed and I was glad to get a smile and a kiss from him before I headed back to the hotel for the night.
No fireworks here for us...it gets dark here so late that I did not feel like watching any...Robert seemed a bit disappointed that he knew he was missing some festivities. The other children were at their cousins house for the day and would watch fireworks with them. Matthew called me bright and early with a request. He wanted me to let him have a little black and white kitten! He said but Mom the kitten is FREE...that is not possible, all cats cost you at some point. Nothing like a little guilt heaped on you by your 5 yr. old who has been crying himself to sleep missing you! Jeff and I agree that is the last thing we need right now...poor Matthew, I feel so bad to say no to him...if only he had asked for another light saber! Jeff said he is having a hard enough time figuring out how to build a room on the house so Robert has his own bedroom when we get home. I guess the girls will have to pretend Matthew is a foreign exchange student and share their room with him (inside family joke :). We would like to figure out a way for Robert to have his own use of the bathroom as well. This might get interesting yet...Jeff also has to figure out how he is going to get a certain landscape job finished this month in WPB...he does not plan on leaving Robert any time soon, especially this month.
The transplant floor has a full house, 14 children in some state of transplant. They are not all getting transplant for the same reason as Robert, but I have met a little girl from Lebanon who is. Her mother and I talk as much as possible. Her English is pretty good, but I know none of the Arabic language she speaks...we have so much in common, and as mothers we can just look at each other and understand so much. Her little girl is 9 and is an ALL relapse patient like Robert. There are also 4 children in her family, a girl, boy, girl and a boy! What are the odds of that. Fortunately, this little girl's brother is a perfect match...that is where the transplants differ...it is so strange to realize that of the 14 children on the floor almost half may not survive...you do not think of these things most of the time. These are things you do not focus on...I believe in miracles--and for me miracles do not discriminate...every child deserves one.
Robert's WBC is down to .6; his HGB is 10.6; and Platelets are 280,000. If his hemoglobin is lower than ten when he receives this medicine called Rabbit ATG, he will have a transfusion. Robert will start chemo on Sat. The Rabbit ATG is given to help his body not reject the graft of the new marrow. Unfortunately it is not uncommon for the children to end up in ICU from this drug. It causes fevers, and blood pressure problems, and respiratory problems as well. The children go down to the ICU while the drug is being infused and then usually return to the floor after that. They do not stop the administering of any of the drugs from this point on...they only support the patient's body and system as best as they can till they get through it. Pretty much every one of the drugs Robert gets from this time out for chemo, cause fevers, chills, nausea, respiratory problems, blood pressure problems, and some can have serious effects on the liver, kidneys and bladder. Every moment is crucial. It is mainly up to us to keep a very close eye on him for any changes...it appears that the actual transplant date will be on the 10th.
Thank you for checking in, and keep in touch. All the journal entries are awesome...keep them coming! To our friends in FL stay dry!!! Your prayers are so important to us, we know they give us strength. Kathy and Jeff
Wednesday, July 03, 2002 at 08:45 PM (CDT)
Good day, or rather good evening...I am glad to report that we are having a good evening. Robert finished his third round of radiation today. The morning session left him feeling a little cruddy and he slept all the way until his afternoon round at 3pm. He felt much better after all the sleep and was hungry...he ate a lunchable and had some pretzels. It is my night for hospital duty. I am amazed Jeff actually reliquenished his spot. He got a nice surprise at the hotel when he saw that the Memphis Grizzlies had a bunch of guys staying there and were in town for practice. He hopes to get himself invited to watch them workout. I am sure he will manage something, that southern charm goes a long way in this town!
Robert's counts are holding up; his hemoglobin is still good at 11.4; his platelets are in the 300,000 range, his WBC is very low at about 800. His ANC is only at about 600 today. It is such a strange place to be in...the BMT unit. Everyone is so cautious when they enter your room; and you can here whoever is coming because of the automatic sink right outside the door; it is easy to tell if the hands have been washed or not. We are very secluded and it is nice. The nurses pretty much stay out of the room as much as possible. After I finally managed to get one of the nurses to actually carry on a conversation, it became clear that the consensus is not to get too close to the patients. She shared with me how hard it was for her to get used to the stand offish behavior; and now realizes it is a sort of defense mechanism. I must say these sorts of general attitudes do not bring much comfort to me as a Mom...I am grateful that one of the nurses has warmed up to us and it really helps...
We had a very nice visit today from Jeff's Aunt Joyce. She was an absolute delight. The visit actually reminded Jeff how much he misses some of his family that is here and he does not get to spend much time with. He actually began to contemplate what it would be like to live near them...not to worry FL family we haven't found a job yet!!! During the afternoon radiation session I ventured out to once again find some t shirts for my guys...Robert needed some much looser shirts and Jeff, well we won't go into his packing ability. I had ventured out last night, and got lost only twice...it is not a great idea to get lost in Memphis at night, even an old Miami girl like myself was a little apprehensive. Needless to say, the city is very beautiful in daylight, and much easier to navigate. It is so strange to be out and about knowing Robert is in the big hospital with the gold dome in the middle of downtown! I like to venture out, it gives me time to sort out my thoughts and I write my journal entries over and over in my mind. I think of all sorts of little things to say and want to remember. I feel like I am a spectator to so many lives these days. You see so much when you really look at a person and try to see there place in life. People here seem to have much of their guard down. I am a people-person people watcher big time...and southerners do amaze me. People here are much more apt to say they will pray for you and seem so sincere in their gestures...maybe that is where Jeff gets his gentle ways; by the way, he has managed to make so many friends here. The security guard out front makes me park a block away, and Jeff he lets right in...all the women just sort of look at me like who are you...and are you with Jeff? It is so interesting to watch. Don't worry, I let everyone know I am Robert's Mom and I want to know EVERYTHING! Big surprise...I guess what I am trying to say is I am a busy body :)
I am signing off now, if I miss anymore of this movie Robert might just kick me out!!!
Blessings and joy to you all, Kathy and Jeff and Robert the Amazing Boy Wonder!
Wednesday, July 03, 2002 at 01:23 AM (CDT)
Hello dear friends. I just wrote this very lenghty journal entry and then it got booted out of the website and lost in cyberspace...sorry! This is actually my entry for Tuesday, Day -7. Robert had a great day today. He was feeling so much better this morning and his radiation did not make him sick at all today. Jeff and I feel like today was a special gift just for us...we were so afraid that Robert was going into that sad shell of not feeling good and wanting to sleep all the time...we do not mind the sleeping and needing to be quiet and concentrate on feeling good...we do worry about his spirits and today he had us all laughing and we had him laughing too! He tried to convince them to let him go off the floor to eat in the cafeteria! His ANC went up from 500 to 800; but there is no way they want him to leave the floor; neither do we!
I wanted to re type a quick note to let you know that Robert had a good day today, and that he is being a very GOOD patient, tell all the nurses at home!!! I need to get some sleep and will write again after radiation in the morning...I guess my other journal entry was not meant to be...God bless you each today with peace and plenty of laughter. Love and blessings, Kathy
Monday, July 01, 2002 at 05:43 PM (CDT)
Hello there. This is actually my Monday entry...I forgot it was the middle of the night when I typed Sunday's entry so it put Monday's date on it. Today is actually DAY 8 for Robert. We have begun a countdown to transplant. Robert's blood counts are already getting low; they are at an ANC of 500 (this is what tells us is ability to fight off disease); that is low and of course they will be gone very soon. Robert had his first round of radiation today. His first round is in the a.m. at 8:00; and then again in the afternoon at around 2:00p.m. He was a very good patient for his treatment...the girls down in radiation already think he is a cutie. I am glad he is able to remain so calm and relax without moving a muscle--otherwise they would have to sedate him. Robert slept most of the day otherwise. After radiation this morning he ate a big breakfast of choc. chip pancakes and a biscuit with hash browns. No food is delivered to the floor unless it is specifically requested. No food is allowed to remain in his room for more than 45 mins. Robert is also not allowed any outside food at all!!! Do you think he can live without McD's cheeseburgers for the month...No one is allowed to eat in his room, and we cannot even bring him something from the cafeteria ourselves if he wants it. It is just like room service and they get him anything he wants...ie, he wanted the cheesecake with strawberry glaze; they were out of the glaze so they called to let me know and that they will get some for him for next time. Robert's diet is even stricter now; he is still not allowed to have any fresh fruits or vegetables, but not even anything that is cooked that may have seeds in it. Robert is not allowed to drink anything but sterile ice; good thing he does not like ice much...and must already stay pretty much isolated to his room. Thank goodness they have a room attached for us parents; a parent room...we can see him at all times and the room has a very good intercom so we hear everything going on at all times; the parent room has it's own tv and bathroom and we have an air mattress to sleep on.
Robert is already starting to not feel so great from the radiation. He had a headache and is sort of feeling cruddy. Jeff and I are working hard to make sure we find a balance between keeping Robert awake and positive; getting him up out of bed a bit, and making sure he is not down. I definitely believe in letting sleeping boys sleep. Robert has started to grow back some hair...he asked his doctor if he would be able to keep it...unfortunately he gets to grow all new hair again!!! No Problem!
Thanks for checking in...talk with you tomorrow...Much love, Kathy
Monday, July 01, 2002 at 12:14 AM (CDT)
Hi guys. Whew! What a day...Robert and Jeff headed off in the am to get Robert's blood counts checked and seen by the weekend doctor at the hospital so he could be cleared for admittance tonight. After that we spent the afternoon doing whatever he wanted...eating lunch at a "dive" called the North End. The kids played pool and had a great time. Once again the fact that this is a really small world theory goes on...while Jeff was at the hospital this morning a man approached him and asked him about his Palm Beach Atlantic College shirt he was wearing. Turns out the man, Joe Smith, was the very first basketball coach at PBAC 30 years ago! Of course he and Jeff hit it off and Jeff was so excited to meet him. Well, Jeff's new friend and his family were also at the North End for lunch, and it turns out his wife and family are from West Palm Beach, and are cousins to the very man who was the catalyst in getting Robert to St. Jude! One of the ladies with Joe's family introduced herself and lives in our neighborhood in WPB. She offered to help with the children at any time; pick them up from school whatever!!! How cool is that. It was so nice to see people from home. After lunch we took a trolley downtown and set out to "hang out" for a bit. We ended up playing "Hyper Bowl". Which is very cool glow in the dark bowling. The kids had a ball. Christina is quite the bowler and all the kids had so much fun...while we were there the lady who sets you up with shoes and the lane inquired about why we were in Memphis...she promptly took Robert's name and committed to pray for him and put him on the prayer list at her families church! After bowling the folks gave Robert one of the bowling pins from our lane to keep as a souvenier and one of the bartenders brought him a bouquet of balloons with an Incredible Hulk doll attached...turns out Erin was a St. Jude kid who had a bone marrow transplant many years ago!!! She was so touched to see Robert and the genuine kindness and concern touched all of us very much! Of course Matthew wants a bowling pin trophy too...I guess I need to get one and mail it home to him later...he complains that he never gets packages!!!
Tonight was very difficult. Delivering the children and having them say goodbye to Robert for awhile was very hard. Matthew was crying this afternoon; so was Robert, and by tonight Jeff and I were crying!!!! This is really hard on all of us, and then I realize that we are not even the ones fighting cancer!!! We want so much to make everything fun for Robert; all day we enjoyed so much being together. Robert kept trying to put off tonight and going to the hospital; he kept wanting one more thing for us to do together. He seemed settled in tonight. It is a whole new ball game, with very high stakes, and very strict rules!! He can win this one...I know he can. And I know the children will be fine, and that Matthew will stop crying for Mom and his brother...
A final note for the night...I do not know what I personally would do without all of your prayers and support and words of encouragement. I truly am at a loss for words and I do not even know how to pray sometimes it seems...does begging count? I feel at such a loss for words--tonight it seemed Jeff and I finally let ourselves really cry...we try so hard to stay so strong for the kids and each other...truly our strength could only come from God; there is no other explanation.
Peace to you all; Love, Kathy and Jeff
Saturday, June 29, 2002 at 08:02 PM (CDT)
Hello to one and all...Please forgive me as I have not updated the page longer than I thought. The children and I arrived in Memphis on Wed. eve; around midnight. Jeff was waiting for us and thrilled to see us. Robert tried to stay up to wait for us, but I told him to get some rest...he was asleep like a baby. Upon arriving at the Marriott in the middle of the night, and in the middle of downtown Memphis right on the curb I looked down on the ground and there was the most perfect heart shaped leaf I had ever seen. I stopped and looked around there was no wind blowing and no trees around, and I could not get over this perfect heart shaped leave...before it could get stepped on and blown away, I picked it up and pressed it in my Bible...it was such an unusual thing to find in the middle of the night in the street of downtown Memphis...for some reason it reminded me that God is everywhere...even in the middle of the night, in the middle of a big city...He does things to remind us that He is there with us, and is always there...
Jeff and I have spent the past few days hustling Robert to and from the hospital for appts. and enjoying being all together as a family. Robert has been beaming constantly loving every minute with his family. You can just see how much he cherishes being with his brother and sisters...it is also very evident that Robert feels very at ease and happy at St. Jude. He runs around that place like he has been there forever. He of course has made friends everywhere he has been and he and his Dad have already made quite an impression on everyone.
After much deliberation and a long discussion with the doc's, Jeff and I have signed Robert onto a research protocol which may involve a method of t cell depletion in his bone marrow transplant. It is a process which pulls out the t cells from the bone marrow in order to help reduce the risk of his body rejecting the new marrow. It is sort of involved and if you would like further info about it email me and I will help you understand it. Or, Robert will be on the receiving end of the "standard of care" bone marrow transplant. Both processes involve the same chemotherapy drugs, and radiation, and recovery methods for his body. One thing they will be watching closely is his liver. Because of the amount of chemo drugs that he has received, Robert's liver is at a slightly greater risks of suffering complications. It is something they experience frequently and are prepared to look for and handle. One very positive thing that they do not experience frequently is having such a healthy, strong patient facing transplant. I asked the dr., Dr. Horowitz, if most kids who get to transplant are as strong and healthy as Robert...he said "No" and that will definitely help him with all of this.
For all the folks back home who know us from St. Mary's and who know Dr. MacArthur, you will think it is cool that Robert's doctor who is over the research study he is on is an old friend of Dr. MacArthur's. These two doctors knew each other from many years ago and were good friends. Robert was delighted to hear this as he always had such a good relationship with Dr. MacArthur (Dr. Macarthur relocated right before Robert relapsed). Dr. Horowitz would like to get back in touch with Dr. MacArthur, and has offered to speak with him about all of Robert's protocol if we thought it would help us with gaining a better understanding of the research aspect of the study.
We have spent today at Jeff's Dad's home in Mississippi. The children have fished and had a great day. Robert and Jessica went to the movies tonight with their Aunt August Marie. We will all go back to the hotel tonight and spend Sunday together as a family. We will probably go to the movies since Robert will be missing that sort of thing for a long time...
I cannot believe this time has finally arrived. It has such a finality to it...we trust and believe that the finality of it will bring about a whole new "life" for Robert. The beginning of many good things...
Many of you have asked us about mail for us and Robert...please send mail to:
Robert Charlton
St. Jude Children's Research Hospital
332 North Lauderdale St.
Memphis, TN 38105-2794
They told us that if it is sent to this address we can pick it up daily at patient registration.
Thank you for checking in, and I will be in touch with all of you through these journal entries...
Blessings, Jeff and Kathy
Tuesday, June 25, 2002 at 01:27 PM (CDT)
Hello friends...I wanted to update you all before I am not online for a few days. I am literally getting in the van and heading to Memphis with the kids. I finally managed to pack the kids and the van...it is a late start but I will drive until I am tired and hopefully find a place to sleep for the night!!!
Jeff and Robert continue to enjoy their time together. St. Jude has some sort of cool activity everyday for the kids. Today they were playing miniature golf. The guys went to another Redbirds ball game. Jeff almost knocked himself out trying to catch a ball that came their way...they must look like quite a pair...they are having as much fun as possible. Robert's blood counts look good and he is feeling great. He did show some traces of the last chemo he was on (methotrexate), so they have to check his blood again to make sure it is all gone before they start radiation. Wed. will be a packed day; appt. with the eye doctor, dentist, and a psyche evaluation all afternoon. Robert I am sure will be delighted to be cooped up for 4 hours while a psychologist does another iq test on him. St. Mary's did all that extensive testing here, and Jeff is going to see if they can skip that and use the data collected here. We also just had his eyes checked and did a trip to the dentist. He managed to get another cavity.
Jeff and I are hoping to get the kids a good look at St. Jude where Robert will be, and enjoy time together--maybe we will all go to a Redbirds game!!!
I will be in touch soon...Much love, and thank you for signing in...
The Charlton's
Sunday, June 23, 2002 at 11:10 AM (CDT)
Hi...I just typed a long journal entry for all of you and in an instant it disappeared and is gone...oh well, let us begin again!!!
Jeff and Robert are doing fine. Robert is feeling pretty good and is a little sore from his surgery and bone marrow aspiration. I am sure that the fact that his bone marrow looked so good and free of any suspicious cells helps him to get over the pain!!! They have been at Jeff's Dad's house for the weekend. They went fishing yesterday and had a great day...no sunburn!!!!!
I am not sure what they are doing today, I am sure relaxing and fishing...Robert's favorite things...Monday starts a busy week of appointments for Robert. He has a daily itinerary and St. Jude runs like clockwork. Besides the travel snafu, Jeff says everything is great there, and that Robert is very comfortable and already knows his way around like a pro. My plan is to head out on Tues. afternoon, or Wed. morn. I would like to get there by Thurs. I want the children to see St. Jude and be familiar with Robert's surroundings. Jeff and I are hoping to do something as a family over the weekend as we have to get Robert checked into the hospital Sunday night. He will have 4 days of radiation therapy starting on Monday. On Monday, Tuesday, Wednesday, and Friday. He will also receive chemo at this time.
Thank you for checking in and being such faithful friends...it is so encouraging to see who signs in and lets us know they are thinking about us!!
Love, The Charlton Family
Friday, June 21, 2002 at 05:46 PM (CDT)
This might be brief...I am using the old computer and it has a tendency to freak out on you in the middle of stuff!!!!
Jeff is feeling much better. Like his old self...Robert had a surgical procedure today to "install" a central line, also known as a broviac port. They made an incision in his shoulder area where they inserted the line that leads to his heart. This is a port that is easily accessed from outside, and is exposed. His other port is inserted under his skin with a line that also leads to his heart. Their is always a risk of infection with these kids and their ports; the broviac is much more inclined to get infected than the other. Nonetheless, he needs both to administer all of his meds and get them into him without having to poke him every time. The procedure went along fine, and he is feeling a little uncomfortable but is resting at the hotel with Jeff. This is new to us; we will have to flush the lines daily, and watch it closely for infection. Fishboy will have to stay out of the water for a while now. The surgeon came into the room and introduced himself and said by the way, did they tell you that "very rarely" but having both lines leading into the heart in the way they do could cause the vein to collapse...of course Jeff was like, gee thanks for the encouragement! We basically are living on "very rarelies..." Unfortunately, or fortunately, Robert does not usually suffer from typical side effects; it is the "very rarely" ones that get him...so you see for us, we find little or no comfort in sentences preempted by these words!!!! But, God is good, and faithful and His grace abounds much...he has gotten Robert through all the other "very rarely" horrible stuff, why not this too.
Okay, here is where we need your help. All those of you who pray and pray so hard for Robert put this at the top. Robert suffered a serious sun burn a few weeks ago. He ended up with these yucky brown scabby things on his shoulders. They have been healing up pretty well, but must still be pretty obvious. His transplant dr., Dr. Greg Hale, has instructed Jeff to keep a salve on them. He wants them to be as healed as possible before Mon., July 1st. Robert starts radiation that day; the radiation can turn that sort of skin into a burn...that would not be good. We are praying that they be GONE...new skin in place. That is the last thing Robert needs to deal with in the midst of all of this...
My van is getting some final stuff taken care of at the dealership, and as soon as I can I plan to get on my way...kids and all!!!! Good thing I have a roof rack.
Thanks for checking in, and thank you Lord for not letting the computer freak out on my time!!!
Peace to you all,
Kathy
Thursday, June 20, 2002 at 11:45 AM (CDT)
Hello to all...it was so wonderful seeing so many of you that were able to drop by and visit the guys before they left. Jeff and Robert arrived safely in Memphis yesterday. Unfortunately, the travel arrangements were not completed appropriately and the guys were left stranded for a couple of hours in the heat!!!! They finally got settled in their hotel room late last night. Fortunately, they did not need to be at the hospital until 10:30 for the first appt. I am sure Jeff will be thrilled when I can get up there so that they do not have to worry about shuttle service all the time...We are so grateful St. Jude has this service at all...I know it helps a lot of families alot of the time...Jeff was not well this morning. Hopefully that will pass and not pass onto Robert! I told him to make sure Robert took his antibiotic today because he had to put off a dose due to some Methotrexate therapy he had...this antibiotic is a preventive measure all leukemia kids take to keep the threat of developing pcp(pnuemonia) at bay...Robert does not have to take any other medication as of yet...he always loves the days "off" from having to take pills.
I plan to get on the road as soon as I get my act together, and the three other acts together...Jessica, Christina and Matthew. My van will be packed with all sorts of stuff to keep Robert comfortable (and us) while we are there.
Keep in touch, the journey has just begun...
Peace and blessings,
Kathy
Monday, June 17, 2002 at 10:48 PM (CDT)
Hello dear friends. Sorry I was not updating all weekend, I wanted to wait until we visited Dr. Gowda today. Robert's counts are not great, but they are on their way up...he just had a dose of methotrexate injections and has been on an oral chemo for the past two weeks. His WBC are low:1.0; HGB 10.8; PLT 178...he is feeling GREAT. Robert has been savoring every moment before he heads to St. Jude. I can see it on his face, he realizes this is a whole new phase of the game...we have been playing games together all weekend, Jeff and him went fishing early on Father's Day...they got rained on and did not catch anything worth mentioning, but the grins on their faces said it all...on Sat. I was out running errands, Robert and his best friend were home with the other children (Jeff was home too). When I pulled up in the driveway their they all were in the rain (no thunder or lightning, just a drizzle) playing on the slip n slide! All 5 of them having a great time. Jessica and Robert have really been enjoying each other...I can hear them talking down the hall and it is quite late!
Robert saw Dr. Gowda today. I know he will miss him and the ladies at our hospital that we have grown so close with and love so dearly...our visits there are always nicer because of the wonderful staff that is there. We had a special visit today because so many of our good friends were in for blood counts as well. Veronica, Mary, Kyle...and sweet little Cam, and his "little Momma". We shared our exam room with them. Robert got Cam his lollipops which are crucial for the finger prick time...they both had blue bandaids and looked so adorable with their bald heads together smiling...Cam is almost two! Robert loves the little ones...he especially likes that they like him...I told him they can tell he has a little brother and is the only big kid that really gives them their due...it is very hard for Robert to see them go through so much of the same stuff that he faces...it makes him very nervous to see them cry and upset. He does have a tender heart.
Saturday night we all went to church together as a family. We have not been able to do that very much lately. Our Pastor called the family before the church so that our church family could see Robert (they have been praying for him diligently) and then called the elders and ministers of the church forward to have a special time of prayer for him...Pastor annointed Robert with oil and prayed...it was something to watch Robert as he listened so closely looking up into Pastor's eyes with his beautiful face...Pastor reached down and kissed Robert right on the forehead and hugged him tight...there must have been about a thousand people there watching and praying but Robert did not seem to even notice them as he listened...
Tomorrow we are hoping anyone in the area that wants to drop by to give the guys a proper send off will come on over! Their plane leaves Wed. at 1:00 from PBIA. Jeff's Dad has a car that he will be able to use to get around in until I get there with the other children. Robert will be on outpatient basis until the 30th.
We will be in touch. And thank you for all your messages...it is so special to hear from you all--thank you.
Peace, Kathy
Friday, June 14, 2002 at 10:42 PM (CDT)
Hello friends. We have been adjusting to the reality of the upcoming events. Jeff and Robert will be flying up to Memphis on Wed. Robert has his first appt. in clinic on Thurs. morning. He will be in and out of clinic for the next week and spending any spare time at Jeff's Dad's house probably fishing...I have decided to take the other children up with me probably the next weekend or whenever I get everything lined up here...pay bills, get a housesitter, stock up on supplies...the children will probably be gone the month of July staying with family in Penn. and Memphis. I am sure they will enjoy their visits and my Mom will pick them up somewhere so that they will be able to be in Boca Grande for the annual trip to the beach for the week.
It is so strange to be planning on such normal things for your children when you realize and look at one of your beloved ones and no that he is fighting for his very life. I really think Robert is scared. I cannot even tell him that it will be alright...I believe it ultimately in my heart and it is not that I do not have hope, but the reality is cancer takes alot of children from their families...I have been visiting many other children's websites at caring bridge and realize how indiscriminate cancer is...if you are interested I went online and visited a site that is full of all sorts of good info. The parents have really made their site one that is a tool for information...info like the fact that the budget for fighting pediatric cancers is one fifth of that of the pediatric aids budget. Last year 5000 children lost their lives to cancer, 100 died from AIDS...it just seems that people either do not know or do not want to know that cancer is something that is getting our children. Leukemia is the number one threat to children's lives...sometimes too much information is too much, sometimes we simply are ignorant and believe me I never thought much about pediatric cancer until now. Even when Robert was first diagnosed...it was like just something else we had to get through. I believed the doctor when he said that Robert would never need a bone marrow transplant, almost never...I trusted all the indicators of how amazing he responded and was seemingly so normal. Never did I imagine for one moment that his cancer would manage to mutate itself against all the chemo that sent him into remission so fast and come back with a vengence! Now they do not bother with statistics...they know either this works, or it does not. I think all the time about how healthy Robert always was as a little guy, eating good foods, strong, athletic...I look at my little Matthew and remember only yesterday Robert was so carefree and never did I imagine what was in his future...am I afraid that this means my other children are at a higher risk for developing leukemia, am I afraid that Matthew being a boy makes his risk even greater...Yes, yes, a thousand times yes...will I get up in the morning and make them breakfast and kiss them good morning and thank my Lord for another day, yes, yes a thousand times yes...
I try not to lose my mind over all of this, I try to stay focused on the peace in knowing that somewhere in all of this I trust in my heart of hearts that God is in control. I do not understand any of it, probably never will--do I sleep much, no, not really...but God gives me more strength than I ever thought possible...
Sorry if I seem to be rambling. It has been a long busy week. Jeff has been working like a dog to get some very important job related tasks completed and on target for him to be able to leave. He has serious tunnel vision...and Robert is at the end of the tunnel and Jeff wants to be there every step of the way to help guide him through. He is being so strong and diligent, all this and still managing to put up with me...July 23rd marks our 14th anniversary together...we certainly never thought we would be in such an exotic place as St. Jude hospital to celebrate it!
Thank you for checking in...the web page I referred to is for a little guy called "Gooch": www.caringbridge.org/page/gooch
Peace and blessings to you...
Kathy
Thursday, June 13, 2002 at 08:26 PM (CDT)
Hello to everyone. I wanted to write when I finally had some sort of definite plan of action...we received word from our transplant coordinator. They have requested that we have Robert at St. Jude on June 20th for the pre evaluation before admitting him on June 30th to start the procedures that prepare him for transplant. The pre evaluation will involve blood work, an EKG, scans of his body, x ray's, and we believe they will also make some sort of form that is designed to help protect his heart and lungs from the radiation; some sort of block. These will all be on different days and we will go back and forth from the hotel for these procedures. On Sun. June 30th they will admit him. Following this is when they begin the chemo, and radiation which will be alternated for about 7 days to totally wipe out his existing bone marrow. The actual transplant is scheduled for July 9th and 10th; it will be infused over that 24 hour period. Then starts the count up...
We are a little stunned at realizing the time has finally arrived. We had it in our minds that we were going on the 30th. Needless to say, I have tons to do to get my and the families act together...Robert was very sad when he heard the news that we were leaving so soon. He does so well knowing his schedule, these sorts of surprises take some getting used to for him. He did receive a special package today of Star Wars posters for his room. They were sent to him from Fox Production, a very sweet lady sent them especially for Robert to take and put in his room at St. Jude. Jill, the lady from Fox Films, had been to our house on the Friday prior and had brought the new Star Wars movie "Attack of the Clones" for him to have a private viewing. It was so Awesome!!! The posters are huge and he will definitely feel the Force when he sees them all around his room. We have talked to him about how he could view his cancer as the Dark Side and that he is training to be a Jedi to battle against it...we try any analogy to make it somewhat more understandable...of course we can barely make sense of the whole thing...
Robert is doing great. He has had a wonderful past few weeks, and he is so strong, and feeling so good. We are so grateful that he will be heading to transplant in such good spirits and feeling so strong. We know that going into this unpredictable situation in this manner will be a tremendous benefit to how he fights this battle.
Finally, as you can imagine, Jeff and I are ready to get going with this...but it is definitely bittersweet. Knowing what Robert must endure is almost unbearable. We are going into such unpredictable waters. The thing about transplants is that they are so individualistic that no one can give you a probable conclusion. I look at my sweet, boy--a beautiful, tan, bald boy without eyebrows or eyelashes...who laughs at all of my jokes and loves hugs and still wants to sleep in our room if he is scared...I look at him and pray that this battle will be over soon for him...that he will be cancer free...too many parents have lost their children to cancer...I pray that Robert will continue to be the miraculous-beating the odds- kind of boy that he is...Please keep up with us and write us. I will write our address at St. Jude as soon as we get there...
Much love, and Peace to all of you...
Kathy
Thursday, June 06, 2002 at 10:36 PM (CDT)
Hello everyone. We are almost through another week. Another week closer to our departure date. This week Robert only was at the doctor's once, and was in the hospital on Tues. for a spinal tap in which they administered three different chemo drugs. It was so odd being back in the area of the hospital where they do these procedures, as we did not anticipate Robert being at St. Mary's this long and we had bid farewell to all the sweet friends in the surgery recovery area where they perform these procedures a while ago. They put Robert to sleep while they administer these chemos. It makes it much easier on the doctors and on Robert. It is a little more taxing for us everytime they put him to sleep we stay right there by him until he is under and come right in when he wakes up. In addition to these chemos in his spinal fluid, Robert also had to receive some other chemo every six hours four times that day. This made him pretty sick. He handled it well and thank God, the next day he felt well again.
My Mom took the kids for a quick trip up to see the Shuttle launch and an overnite in a hotel. Early the next morning Robert and Mom went for a stroll on the beach to enjoy the morning before the sun was too high. Robert has to be very careful in the sun. He loves to be by the ocean, and is already talking about how much he is going to miss it when he is in TN. These days we spend doing whatever we can to do special things all together as a family unit. Mostly letting Robert enjoy all the little things that he clearly is beginning to realize how much he is going to miss them. He especially wants to be with our dog Angel. He has been sneaking and letting her sleep in his bed with him...they are very sneaky! Robert lets her lick him all over except his face, she knows she cannot do that, and he is always so good about washing his hands...but he does love his dog! Those two are really gonna miss each other. It is so hard to say no to Robert these days, all he has to do is look at me with his puffy face, with no eyelashes, and barely any eyebrows stick out the lower lip and I can barely stand it!!! He reminds me so much of when he was just born with these features...we still keep him in line even though he really tries to push those buttons sometimes...like having the dog in his bed!
This week I have spent alot of time realizing that according to the statistics, the odds are not on our side...I keep mulling over in my mind how Robert's intitial doctor said he would never need a bone marrow transplant, very rare...I keep thinking about how well he responded to treatment and was in such excellent shape for a long term prognosis without a relapse...and then when he did relapse, how most people just thought for sure that one of the three other children would be a perfect match...I keep thinking about how all the odds are so stacked against boys with this disease from the beginning...I have always been one who believes in beating the odds! I am not one to gamble or look back with regret, I believe that anything is possbible with God. And I certainly cannot predict the future, nor can I say I know the mind of God...but I do know that He does that which is above and beyond what we can imagine or dare to believe. I know the odds may not be on my son's side, and that they may be stacked against him...BUT GOD is on Robert's side, and HE is "stacked" for him...these are days of great faith for us...faith that will see us through.
Thank you for all your love and prayers of faith on our behalf...Kathy
Sunday, June 02, 2002 at 08:26 PM (CDT)
WHEW! We manageed to get through another year of school. This past week was so busy, and full. Matthew managed to make it to his preschool graduation, and actually participated! He is ready for kindergarten now. Jessica aced all of her finals and got the highest grade on her Spanish final, and even received a special certificate of Achievement from her Geography/Humanities teacher for carrying an "A" average all year. I do not know how she did it! I am so proud of her. Christina finished off her year in 1st grade with flying colors and her teacher will miss her tremendously as she was such a helper all year. Robert had such a wonderful week and was blessed with high blood counts and felt good. He was able to attend his awards ceremony. He received awards for Citzenship for the school year, Academic Honor Roll, receiving straight "A's" for this last nine weeks, and he received two special Art Awards for all his hard work and talent in that area. I was so proud of him and so very thrilled to watch him beam as his teacher gave him his awards, he was so proud of himself and he should be! Robert than finished off the school day with his classmates and went to the special 5th grade luncheon and then onto the dance. Don't let him know that I told you, he even managed a dance with a special girl from schoool ( check the photos for a snapshot of him in action). I am so grateful that we were able to participate with his class these last days of school. His teacher makes these end of the year days very special and fun for the kids, and I am so grateful to him for how he always included Robert and never minded us dropping in when we could and for creating such an environment with all of his students that Robert always felt such love whenever he was there, no matter how his appearance may have changed. This means a great deal to Robert...he is very aware of how different he looks, and though he is self conscience, he does not like to let it hinder him in going out when he can. I am used to people always staring at my children and wanting to touch Matthew's curly blonde hair, but the way they look at Robert is different--you realize that some people know exactly what this child is facing...
We have received word, FINALLY, from St. Jude. They want us to plan on being up there at the end of June. They have located two "good" matches for Robert. One in particular will be contacted to see if they are "available and interested" in being the donor. Okay, this is where all of you come in...Robert needs a donor...the best possible match for him...the donor needs to be "available and interested" in the beginning of July to provide bone marrow for Robert. Please PRAY that all of this will fall into place...Pray that the donor is not going fishing that week or out of the country on vacation! Seriously, we cannot put this off any longer. Robert's doctor, Dr. Gowda, has told us that he is glad that Robert has had the "extra" chemo, but that he is ready now...as you can imagine, our lives are on hold--we have told you how we will be gone for about 3-4 months. This is going to be a grueling process and will not be easy on any of us. But, Jeff and I know that we both need to be with Robert. I am trying to work out the logistics with the other children. Unfortunately, I will not be here for them when school starts in the Fall...but they need to be in school. Our focus is to get Robert well. Our goal is to make him whole and healthy again, and cancer FREE. He has no concept of what is truly involved in all of this...it is not easy to put into plain words what some of the side effects of the radiation might be, and how he will be receiving chemo that is more potent than anything he has had so far...We are living so by faith, we have no other way to go...and should not live any other way.
We certainly had a lot to be thankful for all last week...we marvel at the moments we have together, the moments that make us laugh...I find that I laugh so much more these days, I find that I must laugh at anything that is joyful. There is so much weighing on all of us with all that goes on in the world. I wish there was more I could do to help others...right now, I focus on keeping this family together, laughing, smiling, happy and healthy. Hopefully, in doing this we can help change the world in some way, help someone else to smile, or love, and want to live...
Peace to all of you, and so sorry it took so long to write...we rely on your prayers and encouragement more than you can imagine...
Much love, The Charltons~~Jeff, Kathy, Jessica, Robert, Christina, and Matthew
Tuesday, May 21, 2002 at 08:12 PM (CDT)
Hi. We were at the doctor's today for a check on Robert's blood counts. He has been very tired and not feeling well. Alot of nausea...We were pleasantly surprised to learn that his blood counts are great. We were concerned that he may have started to bottom out already from his chemo. That will happen next week. Unfortunately, the strong antibiotics Robert is still finishing up, combined with the massive chemo from last week are taking there toll. He is trying very hard to keep his chin up and is very grateful that his blood counts are good. Generally, when his counts are up like this we are able to let him go to his best friend's house, and the movies and we try to take him for his favorite lunch out...hopefully, tomorrow he will feel better. Our cousins are coming over for a quick visit on Wed. Robert is so excited to see his cousin Michael. We have not seen him in awhile and do not know when we will see him again. Tina, we see her more frequently as she comes over for visits on her school breaks. The kids love being around their cousins...Robert and Michael drive us nuts talking about fishing and stuff!!!
You know how you get overwhemed, and sometimes you just feel like you have had enough...and then something else happens...that is how it has been around here lately--last week I was sick all week; Robert had his chemo; now Jeff's back is out of whack and he is miserable, and Jessica does not feel well---on and on it goes...and then just when you are about to collapse, someone knocks on your door to say hello and that they love you and your family and that they are praying for you...these things, these little blessings that come in the form of so many different things--like the rainbow after the rain, these are the things that remind me of God's promises...Especially the rainbow, and how He promised never to flood the earth entirely again...I trust and know that He will not entirely flood us...I know He sends what is needed when it is needed...it may come from a hug, a phone call, or a knock at the door...but Praise God, He sends them...blessings...May your day be filled with enough blessings to help keep you out of the flood!
Much Love and Peace,
Kathy and Jeff
After a big storm on Sunday, Robert ran out front and came in the house exclaiming he had seen the most perfect rainbow ever..."You gotta see this, Mom, it is perfect you can see the whole rainbow!" I smiled to myself at his sheer joy, and remembered the Lord's Promise to Noah...Genesis 9:12...And God said "This is the sign of the covenant I am making between me and you and every living creature with you, a covenant for all generations come: I have set my rainbow in the clouds...." AMAZING!!
Sunday, May 19, 2002 at 08:55 PM (CDT)
Hello friends.
Another week has past and we are all well. We trust all is well with you and yours. Robert finished another round of chemo at St. Mary's. He did pretty well. These were chemo drugs he had a couple of months ago; they are the really potent ones. It really seems to have wiped him out. We will keep him close to home and watch him closely. Robert has endured so much this month. He is used to bouncing right back and feeling pretty normal most of the time.
A dear friend of our family, Jim Harwood, had organized a Basketball Camp for kids this weekend. It was called "The Robert Charlton Beat Leukemia Basketball Camp." The kids had a great time, about 40 were participants. The coaches were all from Palm Beach Atlantic College, either former players or present students...it was so awesome to watch them work with the kids and see the devotion of time and energy to be a part of this effort. Robert loves to watch and play basketball, but even more than that he has learned from his Dad that the best part is the guys you get to hang out with and talk "trash" with! They all have the best jump shot...Robert went to the camp today to watch for a bit and help pass out the trophies. I loved watching the coaches love on Robert and see how proud they were to be doing anything to help him. Our deepest gratitude goes out to Jim for all his hard work and support. Also, we greatly appreciate all the guys who gave of their time and energy. Special thanks to Jane, Laura, Jodi, Terry, Christy, and Mom...also to Lake Worth Gym for hosting the camp...I certainly hope I did not leave someone out...Thank you and we LOVE you guys for doing this and all you do for our family.
These next weeks are very crucial for Robert. It is a busy time of the year with school ending and I know he would probably like to participate in a couple of the last day of school activities...but we must be very guarded about keeping him healthy. We are getting close to time to head to St. Jude...We are very anxious...I am nervous!
It was so nice to have everyone home on a quiet Sunday morning...to just hang out and enjoy being home together...my favorite thing. Check out the new photos...and keep those messages coming, we love to read them!!!
Peace to you, Kathy
Tuesday, May 14, 2002 at 09:11 AM (CDT)
Hello dear friends. I wanted to keep you all posted on a more consistent basis than I have been.
All is well with us. Robert came home on Sunday for Mother's Day! What a joy to have everyone here. He is doing so well. It is amazing, he seems as though nothing ever happened and that whole ordeal in the PICU is just a memory. I have asked him if he realizes how sick he was, and he says "No." Children are amazing. He does have quite an affinity to going to the hospital. He hates the smell of the place. Actually, to this day, when I walk into Good Samaritan Hospital the smell reminds me of the days of having babies there...St. Mary's does not have a typical hospital odor, and Robert did not think that St. Jude had any smells!!! Isn't it amazing what we pick up with our senses. I keep asking the boys if there "Spider Senses are tingling"?
Robert will be back to the hospital on Wed. for 5 days of chemo. He will miss being able to go to any of the benefit basketball camp and bar b q on Fri. He is a little bummed about that, not to mention he cannot go to the theatre to see his favorite new movie of Star Wars...Jeff and I constantly remind ourselves that it is all a trade off with Robert. The things we have to put him through today will buy him many tomorrows...for me as a Mom, it is so bittersweet. You know us Mom's keep track of all the milestones; for Robert 5th grade was such a big year. At his school they have a dance, and award ceremony and all sorts of good stuff; his safety patrol trips, etc. These are all things you do not get to do over...fortunately, Robert is not feeling the least bit sorry for himself. He was so happy yesterday morning sitting on the couch next to Matthew joking around and the looks on their faces made me so happy~~two brothers together, so happy to have each other. Okay, now I am crying!!!!
Come by and say Hello to Robert if you are in the neighborhood of St. Mary's. Hopefully, this chemo will not make him too sick...we shall see.
Take care and God bless you.
Kathy
Tuesday, May 14, 2002 at 09:11 AM (CDT)
Hello dear friends. I wanted to keep you all posted on a more consistent basis than I have been.
All is well with us. Robert came home on Sunday for Mother's Day! What a joy to have everyone here. He is doing so well. It is amazing, he seems as though nothing ever happened and that whole ordeal in the PICU is just a memory. I have asked him if he realizes how sick he was, and he says "No." Children are amazing. He does have quite an affinity to going to the hospital. He hates the smell of the place. Actually, to this day, when I walk into Good Samaritan Hospital the smell reminds me of the days of having babies there...St. Mary's does not have a typical hospital odor, and Robert did not think that St. Jude had any smells!!! Isn't it amazing what we pick up with our senses. I keep asking the boys if there "Spider Senses are tingling"?
Robert will be back to the hospital on Wed. for 5 days of chemo. He will miss being able to go to any of the benefit basketball camp and bar b q on Fri. He is a little bummed about that, not to mention he cannot go to the theatre to see his favorite new movie of Star Wars...Jeff and I constantly remind ourselves that it is all a trade off with Robert. The things we have to put him through today will buy him many tomorrows...for me as a Mom, it is so bittersweet. You know us Mom's keep track of all the milestones; for Robert 5th grade was such a big year. At his school they have a dance, and award ceremony and all sorts of good stuff; his safety patrol trips, etc. These are all things you do not get to do over...fortunately, Robert is not feeling the least bit sorry for himself. He was so happy yesterday morning sitting on the couch next to Matthew joking around and the looks on their faces made me so happy~~two brothers together, so happy to have each other. Okay, now I am crying!!!!
Come by and say Hello to Robert if you are in the neighborhood of St. Mary's. Hopefully, this chemo will not make him too sick...we shall see.
Take care and God bless you.
Kathy
Saturday, May 11, 2002 at 06:33 PM (CDT)
Hello dear friends...another week has flown by! I am sorry I did not update the page sooner, I tried the other day and trouble with the website...anyway, what a week indeed. Robert was moved out of intensive care and back to his home away from home...O2Peds floor at St. Mary's Hospital. Unfortunately, it has become very apparent that he does not share the same fondness for the place that we sort of do...it is the people that make it tolerable for us. Some of our dearest friends are there. To watch parents as they develop new friendships and watch out for other children when there parents cannot be there is such a life lesson for us...no matter what your situation, or how bad it may seem, there is always someone in a tougher more difficult situation that seems insurmountable to them...being around other people who are walking the same path with you makes it so much easier.
Jeff and I our exhausted! My house is such a mess that I cannot bear to be there! Now I know all you Mom's out there can relate to that! Jeff has managed to work this week while sleeping every night at the hospital with Robert. Me, well, I just run around like a chicken with her head cut off...Jessica, Christina, and Matthew have been such troopers, they deserve a gold star! I am glad that it is turning out that we will be going to transplant over the summer so that they will be able to enjoy the time off from school and all of their responsibilities, it will be a very long vacation for them. They won't notice Jeff and I being gone as much! We are getting closer to our departure date I can feel it. St Jude is still searching samples and I believe they will have a match soon. Robert is due to go back to the hospital on Wed. for 5 more days of chemo. Seems to me that he deserves a very long vacation when this is through. Somehow we will have to figure out a way to pull our finances or what is left of them together to do something really awesome for the boy. He has been very frustrated this week, knowing that his blood levels were so good, and being stuck in the hospital just for antibiotics. He bounced back rather MIRACULOUSLY!!!
This next weekend our dear friend Jim Harwood has put together a basketball camp to honor Robert and as a benefit for him. We are a little disappointed that Robert will not be able to be there...but you better believe Jeff will be there, helping to coach and whatever else Jim will let him do. He has planned a bar b q for Fri night at Lake Worth Christian School and the camp is on Sat and Sun afternoon. Each child will get a t shirt and a trophy and some one on one training. It should be fun! Robert loves basketball and some of his best times have been with the team at Palm Beach Atlantic College (that is where we met Jim).
Robert gets to come home tomorrow. I think Dr. Gowda knew I wanted all my children home together for Mother's Day!!! He is such a special doctor. I will love having every one home together and listening to them buzz around and just be kids...my favorite thing in the world...being all together.
Happy Mother's Day to all you very blessed Mom's out there!!! May the joy and love of your children fill your heart and make you smile!!!!
Peace to you and yours...Kathy
Saturday, May 04, 2002 at 12:53 PM (CDT)
Hello dear ones...what a week. I am sure your lives have been full of all sorts of things, and you have been so diligent in following Robert and this ongoing saga...Thank you. Robert continues to pass his days in the PICU. They are not so quick to let him go...as his dr. said, usually they try to get them out of here too soon, but, they want to hang onto him, so they must have their reasons. As uncomfortable as we may be and miss our special floor and special nurses, we do not want to rush him out of here if he still needs special monitoring. Many of you know that his blood levels are doing great and he is breathing on his own much more consistently. He is not eating and is being given nutrition through his iv.
He continues to get better, from what we do not know. They still do not know what the cause of all of this was. They only know it is getting better. Robert will probably have to undergo more chemo before his transplant.
My Mom has done a great job shuffling and taxiing the kids around this week. And even managing to get them fed all the time seeing as we have no kitchen sink or countertops installed because Jeff and I seized the opportunity and installed a new kitchen last weekend!! Yes we are crazy, and sort of kicking ourselves right now...This is an unnecessary aggravation to have looming over our heads at this time!!! But what is a girl to do!!!!
Thank you for all your notes and kind words. Love, Kathy
Monday, April 29, 2002 at 09:34 PM (CDT)
Peace to all of you...I am sorry I have not been updating Robert's page for you. The past week has been very busy. Robert has been doing very well, keeping up with school work, and spending as much time as he can with his best friend Ryan. He loves being at Ryan's house; it is his home away from home...This week has brought on headaches and unfortunately, a sore, loose tooth snowballed as Robert's counts went very low and he awoke this morning with a very high fever; 104.7. This of course required a trip to the hospital. When Robert's blood counts came back they revealed that his platelets were very low, and his hemoglobin was very low-5.7. He needed a platelet transfusion first and all sorts of antibiotics immediately. His tooth had not stopped bleeding when it fell out the night before...they managed to get the bleeding stopped, but the fevers continued all day. They peaked at 105.7 and it was evening before they could even begin to give him red-blood transfusions. His nurse ran ragged and watched him like a hawk working very hard to make sure all the antibiotics he could get were being administered. With such a high fever and so little white blood cells the risk of infection is very high. Robert's temp. is normal for now...an extra nurse came on shift tonight so that Robert would have close monitoring keeping him out of the ICU. We are praying that his fever stays gone! It never ceases to amaze or rather shock me, how we can all go to sleep at night like a normal night, never knowing what a new day will bring. We have all learned to be so grateful for the days we have together...and we are so thankful that we were able to celebrate Robert's 11th birthday with him on Sunday...not much celebrating, we kept it low key. At least there were presents and singing and that sort of good stuff!
School is almost over for the year. We still do not know when we will be heading to St Jude's. I am hoping for word soon. I am going to post a few pictures from the Car Wash/Bake Sale at Robert's school-Meadow Park Elementary-which by the way, is the most AWESOME school around. Next year the last little Charlton will make his way into kindergarten there, and we know he will make his mark like the others have!!!
Robert received very good news about where he will be going to middle school; he has been accepted into the Middle School for the Arts. Jessica has been attending there this year and we love it. She really enjoys it and is an excellent student. We are so happy to see Robert's hard work with his art has paid off. We are not sure when he will actually be able to attend there after his transplant, but we will make sure he stays up to speed in all the areas necessary and I am sure the school will work with us.
I will keep you all posted soon...
Peace to you, Kathy
Wednesday, April 24, 2002 at 09:14 PM (CDT)
Hi dear friends! I just wanted to put in a quick note to let you know that all is well with Robert and the family...I have lots to update you about...but, I want to do all of the details tomorrow after he gets to do something special at a luncheon. He will be introducing the keynote speaker at a Victims Rights Week luncheon honoring public servants...the speaker is a new friend to Robert, Division Chief with Palm Beach Co. Fire Department, Steve Jerauld. It is getting late, and I am going to attempt sleep...not much of that going on around here lately! I will be back tomorrow with more to tell...Kathy
Wednesday, April 17, 2002 at 09:35 PM (CDT)
Hello to all of you. We trust this finds you well. Thank the Lord, we are...we have started a new week of chemo, did I say we, sorry, Robert has started a new week of chemo. Robert was scheduled to start his chemo treatment on Monday, however, his blood counts were too low, and he had to wait a couple of days for his body to rejuvenate itself. Needless to say, he was not sorry to have to put treatment off for a couple of days...his counts were high enough today and he started a new round of drugs. These are chemo drugs he has never had before. They are known to be very effective in treating and killing leukemia cells. One of them is known to cause fevers, and conjunctivitis-he must have special eye drops to keep this infection from setting in. So far so good; he seems to be handling this new drug okay. He will get this treatment for four days. If all goes well and he is feeling fine, the doctor will allow him to get a pass to leave the hospital for a couple of hours to go to a fundraiser or two on Sat.
We have more information concerning his transplant. Dr. Hale, St. Jude transplant dr., told our Dr. Gowda, St. Mary's dr., that they have done a preliminary search in the National Registry for bone marrow matches, and Robert has a possible 75 6 of 6 matches!! This is rather remarkable. Many people have only a couple of matches, some unfortunately have none...of these 75 they will search for the one which is the best candidate, and meets even more fine tuned criteria. He said today that they will look to begin the transplant procedure in 4-6 weeks. There was some concern about waiting too long to transplant, because of the possibility of relapse. The doctors at St Jude feel, according to their research, a match which is a 6 out of 6 match that comes from an unrelated donor, would be best for Robert. We had originally thought that Jeff would be the donor, however, this new insight and plan has changed that. We still know that he would give anything for Robert to have his life back, it just won't have to be quite so literal. Apparently, the risk involved with the possibility of Robert's body rejecting an unmatched donor is greater than we understood, and since there is a good possibility that one of the 75 donors will come through that is the best plan. I sure this is a whole lot of info to process...it is for us.
I said to a dear friend the other day, it has dawned on me that just when we get Robert all better and good as new...it will be time for the teenage years!!!! There is something always to look forward too!!! I just hope those years don't make all of this look like a cakewalk...I have put the children on notice to not even get any ideas, I need a vacation at some point, with Jeff of course!!!
School is almost over, and the girls continue to do above and beyond in their school work. Matthew is just as easy going and fun loving as ever. Robert is doing well with his tutoring. We have so much to be thankful for!!! And so do all of you, and I am sure you already know that.
Thanks for checking in, and keep in touch please. I love to read the notes in the guestbook.
Love to all--Kathy
PS--just another thought; are any of you in the registry for bone marrow donation...you could be one of the 75 possibilities...just think of it!!!
Sunday, April 14, 2002 at 09:44 PM (CDT)
Hello to all...we have made it home from our visit to St. Jude. We had a wonderful trip. Jeff and I are so grateful that all the things have come into place to get Robert into the program at St. Jude. It is a very beautiful, child-oriented facility filled with lots of people who have a common goal to make sick children better! From the minute we walked in the doors and were greeted by someone who asked "you must be the Charltons?" to the moment that we left for home, we felt at home. I can already see how this place will become a further extension of our lives. Our transplant coordinator, Stacye, was the one who met us at the door, and took very good care of us the entire time. Already we feel like we know some of the nurses there and Robert's doctor, Dr. Greg Hale, definitely knows his stuff!!! We still do not have a definite as the exact time we will be going up to stay. They have already located a couple matches for Robert in the donor bank. Now they must go through the contacting, and screening process to see if they are going to actually be the donor. This is such an involved part of the process and I do not want to go into too much detail, but if any of you are interested in more detail, please email me and I will answer your questions to the best of my ability. Our first official day at the hospital with Robert as a patient brought us many wonderful surprises. The first nurse Robert had is named Beth, and Robert told her how he loved to go to our neighbor Beth's house all the time; we asked her if she had any children and she said yes, a daughter. A 2 yr old named Riley Ann...our neighbor Beth has a 2 yr old daughter named Rileigh Anne!!! We could not believe it--and felt it a sign of comfort from God. Later that day the guys were delighted to come face to face with some of the NBA players from the Memphis Grizzlies! Check out the photos, that is Robert helping to hold up the sign and get autographs...the boy was delighted. He even was on the local news talking about his experience about meeting the players at St. Jude! He was even interviewed for the paper. The guys got an invite to go down onto the main floor after the team's final home game on Sat night by the President of the Basketball Assoc. in Memphis. They thought they were so cool--we won't tell them how cool we know they are!!! Sat. we spent with Jeff's Dad and family. He lives only about 40 mins from the hospital on a beautiful piece of land and Robert loved it! He got to fish and ride on the 4 wheeler! I just held my breathe and told him to go real slow...we had a wonderful time and I feel like I can breathe a bit now knowing and seeing where we will be living soon enough. The consenus remains the same, we will probably be in Memphis about 100-120 days. It is such a comfort to know that family is so close, and they stand ready to help and adopt all the Charlton kids!!! I wonder if Matthew will aquire a southern accent while he is there :).
Monday morning brings on some new medicine for Robert. Once again he must face two new very toxic chemos this week. One of the drugs requires special eye drops to protect the eyes, and is known to cause fevers. We never know what to expect, however, we do know that Robert has managed to not suffer side effects like other children from his meds. Every one at St. Jude was amazed at our healthy, happy, very bright young man. And as one of our nurses pointed out, Robert just seems to be able to weather all this stuff so miraculously. We know it is miraculous, and we give God the glory.
Our time in Memphis was special and a good way to introduce Robert to his soon to be newest environment. It helped me to get acclimated with the town and gave me a renewed peace. The folks at both hospitals worked very hard to get us there and helped with the cost of this necessary trip. Their efforts are greatly appreciated, and I am continually awestruck at the way people want to come together to help Robert. I thank God for his family and I know He must be very proud of his children for working together in such a strong way. I am continually reminded that when this is all over with I feel a great responsibility to give back, and to find my niche in the place where I can best be used by God to help others.
Thank you for checking in and your prayers. The flight was perfect and I did not even get sick!! A very good thing!
I will let you know how Robert is doing at the hospital. We are hoping he is well enough to make a couple appearances this weekend at the fundraisers for him...we shall see.
Much love, The Charltons
Wednesday, April 10, 2002 at 09:51 PM (CDT)
Hello to all! Well, we are off into the wild blue yonder tomorrow. Robert's first official plane ride that he will be able to remember! Please pray that we are safe--I do not do to well in the air, I am a very grounded, down to earth kind of girl :) We will let you know what we learn as soon as we get back!!! Love Kathy
Monday, April 08, 2002 at 08:08 PM (CDT)
Hello to all...thanks for continuing to check in! Robert has been quite well this weekend. He has held up pretty well considering his very low blood counts and his declining hemoglobin levels...he will need to go in for a blood transfusion tomorrow. At our visit today his hemoglobin level was at about 7.7, when you or I have a level of 9 or 10 we are considered anemic. The doctor wanted to do a transfusion today, but Robert was clearly upset and not psychologically up to an unplanned trip to the hospital. The doctor gave him the "power" to make the decision to go tomorrow.
We will be traveling to Memphis on Thursday evening to be there for a meeting and consult with the doctor on Friday. Robert is very excited to go on an airplane. What a way to have your first plane trip; nonetheless he is excited about that. I am sure that he is ready, as I am, to have a visual of where he will spend so much time. Our trip will be brief, we want to get home to have some of the weekend to enjoy some time together, and for Robert to "hang out" with his best friend Ryan.
Monday, April 15th, it is back to the hospital for another week of intense chemo...
Keep checking in, and I hope to get the photo page in better order for you all to get some more good images of Robert.
God bless you all--The Charltons
Thursday, April 04, 2002 at 07:59 PM (CST)
Hello to all. We had a bit of news about how things are going for our journey to St. Jude's. Our doctor's name for the transplant is, Dr. Gregory Hale. Our transplant coordinator is a woman named Stacey. We are planning on travelling up for a meeting with them on the 12th of April. We will only be there for the day, and plan to return Sat. All of this depends on if the schedules work out and Robert is well enough to travel. We learned today that part of the procedure at St. Jude's to do a search in the bone marrow data base for a "perfect" match when there is not one within the family. They "search" for 3 months. If no match is found there, then Jeff would be the match. Of course, Robert is not interested in finding a better match, his Dad is good enough for him...we are trusting their plan and Robert will continue to undergo chemotherapy here until the time for us to go to Memphis is upon us. In other words, we may not be heading to transplant for 3 months. Robert continues to suffer only minor side effects from treatments...minor in that his nausea is not all consuming and the severe muscle pains from his shots this week seem controllable...We are so grateful that he is home and strong...he has not even complained today about missing the class trip--they left this morning for the annual 5th grade trip--his goals go beyond 5th grade--his sister is busy teaching him the do's and don'ts of middle school "coolness", she will not be followed around by a "geek", of course such life lessons come at a price--Jessica charges 50 cents a lesson, so far he owes her 5 bucks! :) A debt he will gladly pay! These are the things that make us smile, and to hear Robert pray to God to never let him go and hold him tight, is the thing that makes us cry...May you be strong and courageous each day, and be encouraged to find laughter in the silly things...Love, The Charltons
Tuesday, April 02, 2002 at 09:37 PM (CST)
Hello to all of you...thank you for checking in on Robert. I trust this finds you all well. We are. Robert is doing very well. His blood counts are holding up, but they are on their way down. Which is all "normal" because of the potent chemo he received last week. I can see other signs of the affects of the treatment from last week as well. He is losing his eyebrows and lashes, and the dark circles under his eyes make me realize his body is really fighting to hold strong. Robert continues to keep his sunny disposition, and tries to keep active. He has enjoyed walking over to the neighbors to visit and see the babies at our friends house. He loves little children and enjoys being around them. He is so careful around all people, being cautious about touching their hands and not touching his face, he is so good to remember to wash his hands all the time. I have loved having he and Matthew home together these days; they love to hang out together and make each other laugh all the time. Jeff and I continue to work very hard at trying to keep the balance in check for all the children as much as possible. We know it is going to be very hard on us when we are apart...we are trusting that the foundation of love that we have with the other children will stay strong and they will know that no matter what we love them no matter where we are!!! We go back to the doctors Thursday to check his blood counts, he may need a transfusion...I will keep you posted. Thank you, Kathy
Saturday, March 30, 2002 at 04:51 PM (CST)
Happy Easter to all! Robert came home today...he is very happy to be home for Easter with the family, he spent last year in the hospital for Easter, and he really wanted to be home this year. What a remarkable week. Robert did not suffer severe side effects from his treatment. And we were fortunate to have some of our dearest new friends at the hospital with us this week. So many of us parents find such solace in each others company...and we manage to make each other laugh and we are definitely able to share the same pain and tears over our children. This week was once again a reminder of the amazing nurses who take such wonderful care of each child. These are our heroes...I wish there was something so much more I could do to show them how grateful we are for their strength, humility, tenacity, and ability to be not only a nurse, but a friend and a trustee. I watch them when they have to be tough, I watch them when they have to give out medicines that they know will change a child's life forever, I watch them educate, encourage, laugh and cry...they do battle every day in order that our children will be able to come home to be able to celebrate life with their family--to be able to LIVE...so if any of you know someone who knows someone who can get to Oprah, or Regis & Kelly, or Rosie...I know some real life amazing heroes that get little or no credit for their work--who deserve some sort of amazing day at a spa or something... God bless each of you and thank you for your messages...they touch our hearts. Love the Charltons
Thursday, March 28, 2002 at 11:39 AM (CST)
Hello to all...I cannot believe the last entry we made was Sunday--it is already almost another week. Robert has been doing great this week. We are amazed that he has been able to stay so strong through another new round of very potent chemo. He still has a great appetite and continues to keep us on our toes to get him whatever he craves!! We will be going home on Sat. and Robert is glad to not have to be here on Easter. They have been doing all sorts of neat crafty things this week with the kids and a few different groups of people are coming in to bring goodies and stuff for the children for Easter. We are so thrilled to get to live with the knowledge that our Lord was resurrected on Easter Sunday!!! And that we can experience His presence and power even today...Yesterday, we received a final word of acceptance from St. Jude's Hospital in Memphis TN. That is where Robert will be going for his transplant. We had not mentioned this possibility to very many people because we needed them to decide if he was going to be accepted into their program or not. So all you folks in TN better watch out Jeff Charlton is coming home for awhile!!! Several of you have expressed this extra burden for Robert in the past week or so; I dare say as one friend put it..."the Lord is just lining up the Angels for Robert!" I truly believe that your prayers and support have been crucial in all of Robert's progress and to Jeff and I it is a real, live, tangible extension of our Lord working and reminding us that He is in control. To Him be the glory, great things He has done....We do not know when we are going, or for sure how many of us will be there for how long. Obviously, Jeff and I will be there...and probably our youngest Matthew. He goes wherever "Momma" and Robert go...I will let you know as soon as we do...
A special thank you and acknowledgement to our dear friends and the amazing young people of PBAC for all you are doing to support and love on Robert...I have said this before over the years that Jeff has been helping out with basketball, but you all are proof positive that there is hope for our country and our future with such awesome young people as you all standing in the gap for little kid who you watch running around the Greene complex!!!! You are awesome and we love you guys!!!!
Also, thank you to the guys at First Baptist for keeping up with Robert after he had to drop out of basketball--very cool shirt "A BreadCrumbs and Fish"--Thank you.
Not to be left unmentioned here must be...Robert's teacher, Mr. McMahon, and his awesome school MeadowPark Elementary. We knew this place was special before, but you all have gone above and beyond the call!!! Thank you for providing Robert with enoough cool stuff to keep his mind sharp over these next months while he is away!!!
I will sign off for now...this is way long--love Kathy
Sunday, March 24, 2002 at 10:01 PM (CST)
hi every one its robburrito,(robert)
i just got back from sea-world.i'm glad to read all your e-mails.as you guys and girls probably heard i'm going to be in the hospital this week...but,when i get out i want to read all your e-mails and i'm glad to here that so many people are praying for me some that i know, some that i don't.i just want to thank everyone that's supporting me with every thing that's going
on and stuff.ok, tha's really all i got to
say peace out :):):);).
Saturday, March 23, 2002 at 08:32 PM (CST)
Hi there...Robert went on an early morning mission with Jeff. Jeff was helping out Robert's teacher with his digging for installing new pipes to get city water...Jeff brought his big trencher from work and did the whole job in no time...Robert had fun hanging out and always jumps to be with his Dad...of course, the idea of eating a Denny's Grand Slam breakfast had nothing to do with it!!! Robert was even well enough to come to church with us tonight- he fell asleep, and we were thrilled to be able to have him there. The children's Pastor could not wait to tell him about the girl on the front row of church the week earlier who said she went to school with Robert after they shared about him and were going to pray for Robert; she announced to about 100 or so kids that she used to have a crush on Robert!!! Of course all the kids loved that. Tomorrow the boys are off for a fun day at Sea World; Robert is very excited because he gets to bring his good buddy, Sawyer, who is visiting for Spring Break, with him. Some friends provided us with Park passes when they heard that Robert's "counts" were good and that he was spending next week in the hospital; we decided to go for it, and Matthew is quite thrilled that Robert chose Sea World, so is Sawyer, he has never been either--thank you dear friends for thinking of us...check out the new photo of Robert at Pro Player Stadium on Thursday. More info later...I need to get better info to you all about Robert's account-I was a little vague, sorry. Kathy
Friday, March 22, 2002 at 10:01 PM (CST)
Hello to all...I just created this web page for Robert. I hope to keep you all updated on his progress and treatments as we move on to the next phase of getting closer to his bone marrow transplant. Click here to go back to the main page.
Today, Robert had his last bone marrow aspiration at St. Mary's Hospital. The staff in the PACU area have been so awesome to Robert. They take such care to make the whole procedure as smooth as possible. They seem to light up when he comes there for his procedures...and they do enjoy listening to him as he tries to beat his latest "count" before he falls asleep for the procedure...I believe he holds the record at 87 or something...sometimes he skips numbers and falls asleep and then picks up where he was and then he falls asleep for the duration; they have always cheered him on
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