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Sunday, May 8, 2011 6:52 PM CDT
So I realize it has been well over a year since I have made a journal entry. I am horrible I know:) I was planning on doing one on Brandon's 16th birthday, but as you can see that didn't happen. I avoid these like the plague sometime I think. I do still check in pretty often to see if anyone has left us a message.
I decided to do an entry today because for one it is Mother's Day and I really miss him today and because of an email I received from a 4th grade classmate of his. She also left an entry in the guestbook. Thank you Torie for letting me know that Brandon had an impact on your life. For you to remember him means so much to me. It is things like this that let me know that even though he was only here for a short while, he made his mark.
We are all doing well. We are now stationed at Sheppard AFB, TX and we are actually enjoying it here. I love it! I am still in school full time. I got accepted into the Nursing program here in Wichita Falls, TX. I start in August and can't wait. This is what I have been working toward for the last few years. The kids are doing good. They have adjusted to the move pretty well. Ernie got an Instructor position, which is why we moved here. Thank you for those who still come to check on us and those who continue to pray for us. We appreciate each and every one of you!! Well, I have to get back to studying for finals.
God Bless,
Kathy and family
Wednesday, January 27, 2010 12:51 AM CST
I haven't updated in a long time. I just haven't wanted to. It is hard and depressing to come on here and update everyone on how we are doing without him, so I have just avoided it. I have had the desire to a couple of times, but would get here and really not even know what to say. I still think of him every single day. I miss him more than I can even put into words. We are all doing well. The kids are doing great in school. Jordan is 13 and Savannah is 8. I am very busy with school as well. I am going full time, still working towards Nursing. Ernie is home with us for now. He is currently trying to crosstrain into a different job in the Air Force so he may have to leave in a couple of months to go to training for that. Brandon is still very much a huge part of our lives. He is mentioned in some way almost everyday. Today is his birthday..he would be 15 years old. Gosh, it doesn't seem like he should be that old. We will celebrate for him with cupcakes and ice cream and we will sing Happy Birthday to him. I really miss him and I wonder what he would be like now..how deep his voice would be..how tall would he be(not very tall I'm sure:)..how excited he would be about the fact that he would be driving soon..if he would still love Star Wars or if he would have grown out of that..nah I don't think that would have ever happened:) Jordan has already passed him in age as far as how old he was when he passed away..that was a little bittersweet. I miss seeing him interact with his brother and sister. I can't wait til the day when he is standing there waiting for me, to give me the tour of Heaven. HAPPY BIRTHDAY Brandon!!!!!
If you follow my journal entries you know that I love music and find peace and meaning in lyrics...so here is a song for you. I love this song..it makes me think of Brandon especially when he mentions dark brown eyes that disappear when she smiles..Brandon had the darkest brown eyes and they would almost disappear completely when he smiled:) I am including the link so you can listen to it. It is a beautiful song.
http://www.youtube.com/watch?v=-3Mj6iOG1xM
Heaven is the Face by Steven Curtis Chapman
Heaven is the face of a little girl
With dark brown eyes
That disappear when she smiles.
Heaven is the place
Where she calls my name
Says, “Daddy please come play with me for awhile.”
Chorus:
God, I know, it’s all of this and so much more,
But God, You know, that this is what I’m aching for.
God, you know, I just can’t see beyond the door.
So right now...
Heaven is the sound of her breathing deep,
Lying on my chest, falling fast asleep while I sing.
And Heaven is the weight of her in my arms,
Being there to keep her safe from harm while she dreams
And God, I know, it’s all of this and so much more,
But God, You know, that this is what I’m longing for
God, you know, I just can’t see beyond the door.
Bridge:
But in my mind’s eye I can see a place
Where Your glory fills every empty space.
All the cancer is gone,
Every mouth is fed,
And there’s no one left in the orphans’ bed.
Every lonely heart finds their one true love,
And there’s no more goodbye,
And no more not enough,
And there’s no more enemy.
Heaven is a sweet, maple syrup kiss
And a thousand other little things I miss with her gone.
Heaven is the place where she takes my hand
And leads me to You,
And we both run into Your arms.
Oh God, I know, it’s so much more than I can dream.
It’s far beyond anything I can conceive.
So God, You know, I’m trusting You until I see
Heaven in the face of my little girl,
Heaven in the face of my little girl.
Take Care & God bless,
Kathy and family
Tuesday, May 26, 2009 10:05 PM CDT
A friend of Brandon's wrote this poem about him for her writing class. She did a very good job.
Important Penny
There was boy of 11 years, a friend of mine
But something took him away from me, cancer
I was interupted with the news during school
Something punctured my heart
But when he died, he was burried with pennies
So he may throw one to us when we need him
And so that we are reminded that he is happy
I now pick up every penny I find
Not to think of it as just a penny
But a reminder that my friend is waiting and thinking of me
Sorry I haven't updated in a while. I have been really busy with work and school. I am now done with school for the summer. Ernie is overseas for 4 months and Jordan will be going to visit his dad for the summer so it will be just me and Sav. Girl time for the summer :) I will miss my boys..all of them. We visited Brandon's grave site yesterday before we came back home from visiting family. I sure do miss him. Well, hope you are all doing good.
Take care and God bless,
Kathy
Sunday, March 1, 2009 9:20 PM CST
I would like to thank all of those who have sent a donation in Brandon's memory to Arkansas Children's Hospital. Because of you all, Brandon's name will be added to a new section on the donor wall called The Donor Wall of Honor. We recieved a letter stating that the fund in tribute of Brandon provided significant financial support for ACH in 2008 and his name will be included on the wall as of May 2009 for one year. Lets try to make it happen again this year:) I plan to go and take pictures of his name on the wall and I will include them on his website for all to see. Thank you so much for donating. It really helps the clinic and unit that took such great care of him. If you would like to donate, send donations to:
ACH Foundation
In Memory of Brandon Camden
PO Box 2222
Little Rock, AR 72203
Thank you! Thank you! Thank you! It is such an honor to have my baby's name placed on that wall. I can't show enough appreciation to all of you.
God bless,
Kathy
Wednesday, January 28, 2009 11:39 AM CST
Ok so I typed out this entire journal entry and my stupid laptop spazzed out on me, so let me try this again.
Yesterday was Brandon's 14th birthday, it doesn't seem like my baby should be 14. I can only imagine how much he would have loved being a teenager. So, to celebrate Brandon's day we went to McDonald's to get McRibs, the kids wanted to eat something Brandon liked. After we ate, we each got a cupcake with a candle, we lit them and sang Happy Birthday to him. We had planned on going to Missouri to visit around his birthday, so we could visit his gravesite and leave him a lil' present. Things don't always work out the way you plan them though..we won't be going for several weeks. Our dog, Tinkerbell is due to have puppies any day now and so we won't be going again for about 7 more weeks or so.
Sorry that I haven't made an entry in a while. I am working part-time and going to school full-time, so I am crazy busy.
I hope you are all doing well. We are doing pretty good. God is so amazing, He has given us such strength and grace through all of this. "If He brings you to it, He will bring you through it". You just have to trust in Him and lay all your burdens and worries on Him. I have really been wanting to find a church for us to attend, but I really didn't know where to start looking and I had thought about this church that we went to a few times when we lived in Beebe a few years ago. I wasn't sure if I would be able to find it again because it is out in the country a bit, but I believe I was given a sign:) I was in Biology class almost 2 weeks ago and thought one of the guys in my class looked familiar. Well, the next time I went to class I realized where I knew him from. He was the person who invited us to that church that we had went to. Brandon played on the same basketball team as his son, and we had talked during practice and he invited out to his church. So during a break from class, I went up to him and told him who I was and asked if they still went to that church and that I had been wanting to find us a church and told him I had been thinking about coming back out there. He said said they still go there and that we should come out and that he doesn't believe in coincidences that we were in class together for a reason:) So long story long:), we went Sunday. The kids seemed to enjoy it, and that is my main goal in finding a church. I want my kids to like it and want to go. I don't want to have to drag them there.
Well, I really need to get to work. I have a lot of homework I need to be doing right now. Oh, there is a video that I would love for everyone to check out. I cry everytime I watch it..it is really moving. http://www.godtube.com/view_video.php?viewkey=ee73e63418003b47d7d5 Be sure and turn up the sound. Remember, when you think that things can't get any worse, He is still there waiting for you to let Him lead you. Ok, I'll stop preaching now lol:)
God bless,
Kathy
Tuesday, December 23, 2008 8:37 PM CST
Hello everyone, I just wanted to leave an entry wishing everyone a very Merry Christmas! Take time and celebrate Jesus' birthday with family and friends. Hope you all have a wonderful New Year also!
Take care,
Kathy and family
Brandon, we miss you very much and hope you are enjoying the celebration of Jesus' birthday. We think about you often!! Sav made me buy an Angel to put on top of our tree so it would remind her of you:) She got your favorite drink from Sonic the other day..1/2 Coke, 1/2 Dr. Pepper with 1 real cherry:) Jordan misses you and talks about you often. I think he misses playing video games with you. We love you!!
Wednesday, November 12, 2008 11:46 PM CST
Well, I have went over and over in my head on what I wanted to write about on this day. I still am not sure what that is. So I guess I will just write what comes to me.
One year ago today at this time we had taken Brandon off the vent and the doctor placed his stethoscope on Brandon's chest to listen for a heart beat and told us that he was no longer with us. There was a crowd of people stuffed into Brandon's PICU room saying our temporary good-byes. I want to thank each and every person who was there with us. I know it wasn't easy to be there as he passed away or to watch us go through that. You all mean so much to us. That was by far the hardest thing I have ever had to go through and the fact that I wasn't alone did help.
We miss him so much. The last several weeks have been an emotional roller coaster for me for some reason. I seem to cry at the drop of a hat. I can say that I have never felt God's presence with me more than I have the last several weeks. I have been listening to KLOVE a lot and I tear up with almost every song. Just a lot of emotions all the time.
There are a couple people I would like to thank or mention. First off, I want to thank Ernie for being here for me and dealing with me and all my emotions and mood swings. I know this past year I haven't been the easiest person to live with and I love you more than you know. I would like to thank my Mom and Dad. Thank you both! I know how hard this has been on you too. I know that you both are grieving the loss of Brandon, but I know that you are also grieving for my pain as well. Just know that I am doing OK. I know I put on a brave face and don't like to tell you how I really feel sometimes, but I am at peace with things. I would like to thank my sister for calling and talking to me and not being afraid to say things that might make me cry. I really enjoyed our 4 hour phone call that night and would love to have more of those. I feel so at ease talking to you about everything. Shelley, I love you more than you know girl. I really don't have words to express how greatful I am to have you in my life. I have never felt the connection I have with you with anyone else besides Ernie:) You are my best friend and more...I love you like a sister. To all of you who still check in on us and still leave messages letting us know you are thinking of us...Thank You!
So just for my benefit of getting it out there...I am going to answer some questions that some of you may be wondering about. They are not aimed at anyone..just random questions.
Does it get better with time? I would have to say yes and no. You adjust to the fact that they aren't going to be in the house when you wake up in the mornings or any other time of the day for that matter, but I would have to say my heart aches more now because at that time I was so numb and in shock and because it has been over a year now since I have seen his beautiful brown eyes and that beautiful smile.
How am I doing? Well, I hate this question. People ask this question and sometimes they really don't want the honest answer...they are just being polite. Also a lot of times I don't really feel like telling people how I really am..I don't like getting emotional in front of people:) Honestly, how I am doing changes moment to moment some days. Some of the smallest things make me think of him and how much I miss him.
How are the kids? They are doing pretty good. They miss their brother like crazy and talk about him pretty often..which I love. They have days that are worse than others. Jordan really doesn't like to talk about his feelings much...but he doesn't mind talking about Brandon. Sav talks about Brandon every chance she gets and is very nonchalant about telling people he died..which makes me cringe sometimes because I still have problems saying and hearing the D word in relation to Brandon. I try to warn their teachers ahead of time so they aren't caught off guard in case the kids mention it.
How often do I check his website? Well, I don't make entries very often, but I check his website everyday..actually several times a day. I don't really know why, one time a day would be enough..I just can't seem to stop:)
This isn't so much a question, it is more of a statement. "He is in a better place!" Believe me...I know this. I know that he would never want to come back here. I can only imagine what it is like and I know that he isn't in pain and has no worries. That in itself is enough for me to not beg and plead for God to give him back or ask why him. Though there was a time that I really wanted to.
There are nights that I still cry myself to sleep at night, though they are few and far between. I can tell when I need to just take time and have a good cry...I start to get very irritable and snap at everyone. So I wait til everyone is asleep and just let it all out. There is a song that I would love for all of you to listen to..it is called "Homesick" by Mercy Me. My sister had me listen to it...thank you Crys. It is a beautiful song..if you get a chance go to www.youtube.com and enter Homesick into the search bar and listen to it. Here are the lyrics..
Homesick
You're in a better place, I've heard a thousand times
And at least a thousand times I've rejoiced for you
But the reason why I'm broken, the reason why I cry
Is how long must I wait to be with you
I close my eyes and I see your face
If home's where my heart is then I'm out of place
Lord, won't you give me strength to make it through somehow
I've never been more homesick than now
Help me Lord cause I don't understand your ways
The reason why I wonder if I'll ever know
But, even if you showed me, the hurt would be the same
Cause I'm still here so far away from home
I close my eyes and I see your face
If home's where my heart is then I'm out of place
Lord, won't you give me strength to make it through somehow
I've never been more homesick than now
In Christ, there are no goodbyes
And in Christ, there is no end
So I'll hold onto Jesus with all that I have
To see you again
To see you again
And I close my eyes and I see your face
If home's where my heart is then I'm out of place
Lord, won't you give me strength to make it through somehow
Won't you give me strength to make it through somehow
Won't you give me strength to make it through somehow
I've never been more homesick than now
I love that song. I am Homesick! I trust in God's plan and know that I will be with Him and Brandon someday. I am in no hurry, I have two other kids that need me and I want to enjoy them. Another good one is called "Held" by Natalie Grant. Anyway, I guess that is pretty much it for now. Thank you to all of you who left your memories of Brandon to share with us. If you have any more please share them.
Here is a funny memory:) We were in the hospital at the time and I had gone down to the cafeteria to get something to eat. Well, Brandon called for his nurse Laura and asked if she could find him some sandpaper. So she told him she would call child life and see if they had any. She assumed that he was doing a craft project and needed it for that. Well, Stephanie from child life came to bring him some. When she went to his room she asked him what he needed it for and he said he was going to use it on his feet because he had dry skin on them haha. I guess he had seen me use stuff on my feet before and it looks like sandpaper lol. Well, Stephanie asked Laura if she knew why Brandon wanted the sandpaper and Laura said no I figured he was doing a project or something and Stephanie told her what he wanted it for and she about had a fit. Of course Stephanie didn't give it to him lol..Laura thought it was hilarious after that and told me all about it when I came back from eating:) Such a silly lil' man. He also used to "drunk dial" haha. You know when people drink they call random people just to talk...well he would do that on morphine. He would wake up really early sometimes and didn't want to wake me and would make phone calls to anyone he thought might answer. He was sooo funny when he was on morphine...he would get so mad at himself because he would nodd off and talk in his sleep and wake himself up talking to people who weren't there.
Take care and God bless,
Kathy
We miss you and love you more than ever bubby.
Wednesday, October 22, 2008 2:37 PM CDT
Found this on someones carepage.
I belong to a special group of women
My friends and I have an amazing bond.
We never wanted to be in this group,
Yet we are in, for life.
Maybe we have met, maybe we haven’t,
Yet our love for each other is boundless.
We know the pain the other one feels,
And we share our victories small or huge.
Words like chemo, IV, Zofran , bald heads
Are always parts of our conversations,
As well as roidrage, tears, and meltdowns…
We always know where the closest puke bucket is ,
We can hold it in one hand and if necessary,
Swallow the sandwich the other hand was holding.
We can drive to the hospital ,
Park in the dark parking garage
Make our way thru the halls of the hospital
And to the appropriate floor,
Settle in a room, turn the TV on,
Give instructions to the head nurse,
Silence loud beeping IV pumps,
Direct a wagon AND an IV pole
To the playroom without hitting anything
Make our way back to the correct room
And all this, mind you,
With our eyes closed at any given time.
We know how to draw blood from lines
Sticking out of little kids chests.
We can hold them down with one hand ,
While a nasogastric tube is inserted in their little nose,
And be on the phone with their dads at the same time.
We can live for days on hospital food,
And on maybe only one meal a day .
We know the names of up to 20 different drugs ,
Their purpose, dosage and time to be taken.
We are always on call, 24 hours a day ,
Seven days a week.
We are used to not always looking our best,
Hard to do with only a few hours of sleep .
Make up , hair styling, skirts are words of the past .
We have become addicted to texting ,
hospital, clinic, home, wherever…
We talk sometimes at all hours of the night ,
We know we can count on someone to be up.
Then for one of us , the world stops .
She has to walk away, broken.
This job is over .
The job is over, but the fight is on.
Remember , I said we were in this forever.
We are friends, sisters, temporary nurses,
We are each others rock, each others punching bag,
We listen , we vent , we cry , we laugh together .
We share our lives and our deaths
We share our pain and our victories.
We are strong, but not by choice ,
Sometimes we win , sometimes we lose,
But never are we defeated .
We are not nurses
We are not doctors,
We are cancer moms…
Mimi ( 10-18-08 )
Thursday, September 11, 2008 11:25 PM CDT
I hope everyone had their thoughts and prayers with all of those who were touched by 9/11 seven years ago. I know it was on my mind all day long.
This month is Childhood Cancer Awareness month. Make everyone you know aware of how many kids fight for or lose their lives to this horrible disease.
It will be 10 months tomorrow since Brandon was here with us. He is sorely missed by all. But, even though I still have days that feel unbearable, God gives me the grace and strength I need to pull through. I know that I can lay those burdens at His feet and He will help me though, and I do that daily. I know I cannot do this on my own and I don't attempt to try. There is a phrase in a song that really stands out to me...it says "a breath away is not far to where you are". Putting it like that really makes me realize that Brandon really isn't far away from us. I sure do miss seeing his beautiful smile, dark brown eyes, and the way he used to have to have a hug and a kiss even if I was only going 1 block away to the gas station. I loved that he was such a momma's boy. I learned and am still learning so much from him. He was so kind and had such a good heart. He was definitely wise beyond his years. The other day Jordan and Sav were talking about Brandon and how they were sure he is a wonderful angel and how he can do whatever he wants in Heaven. Then Jordan said "well he can't do bad things in Heaven" and Sav responded to that by saying "well he was a good bubba, so I don't think he would want to do any bad things." She is so right! We are sooo lucky. God has blessed our lives with 3 awesome kids. I am so grateful to Him for sending them to us.
We are hoping that he will send us another one:) I had my tubal reversal surgery 4 weeks ago. So hopefully we can add another lil' one to our family. We will see what He has planned for us.
I hope you are all doing well. Hug and kiss your kiddos often.
God Bless,
Kathy and family
Don't forget to tell us about your memories of Brandon!
Monday, August 11, 2008 7:13 PM CDT
Don't forget to leave those messages telling memories that you have of Brandon!! You can tell us more than one memory, the more the better.
Unfortunately this horrible disease has taken another child from her family. Please say prayers for Paxton's family. Paxton had transplant a few days before Brandon in the room next to us. She relapsed and had a second transplant earlier this year, but relapsed shortly after. Please say prayers for them.
Kathy and family
Friday, July 25, 2008 12:40 AM CDT
Sorry, I know it has been a lil' while since I made an entry into the journal. Well, I would like to ask something of all of you who knew Brandon. I would love for each and every one of you to leave a guestbook entry telling a story about Brandon that really sticks out in your mind.
Something that sticks out for me is that when he was maybe 3 or so he loved the movie "Mighty Joe Young". For those who don't know the movie, it is about a huge gorilla named Joe. Brandon watched that movie over and over and over. He used to ball up his fist and run around the house on all fours just like a gorilla. We watched that movie together during his last hospital stay and I told him how he used to run on all fours just like Joe:)
I miss him so much. I know that all of you do too. I know there are many of you out there grieving for him also. I know there are many people that love Brandon and miss him. I would like to share something with all of you that was given to us by the chaplain at Methodist Children's when we put Brandon's leaf on the memorial tree.
"Always In Your Memories"
I was once here,
Where we could
See and hear and touch.
You loved me
From your deepest heart.
You cared for me
With your whole self.
You yearned to heal me
And to love me into living longer.
Now, I live in your memories.
I can be in your thoughts,
Anytime, anywhere.
In your memories
There is both pain and joy.
We were gifts to each other.
I am in your heart, forever.
Remember my life.
And after you cry, smile.
Chaplain Jim Carr
So please share your memories of Brandon with us, so we can all laugh, cry, remember and smile for Brandon. How I yearned to heal him and love him into living longer. I prayed so much for God to give us a miracle and make him better. My prayers were answered. He is living an eternity in a better place. A place that I plan on joining him in one day. I would like to share something else...I know I don't write anything for a while and now I just won't stop lol:) Bare with me. There is a song that I listened to recently, I used to listen to it frequently several years ago when I would go to take the boys to visit their dad for the weekend. I love the song, it is one of those you turn up really loud and sing along as loud as you can. It is "Still Holding On" by Martina McBride and Clint Black. It is a "couples" song, but when I listened to it recentely I heard the word in a different way. Like as if it were something I would say to Brandon. So here is how the song goes.
"Still Holding On"
There's something out there left for you(heaven)
But it's not me
We've reached a point of no return
it's only right I set you free(from this world to be with God)
I know I'll have to turn away
But there's nowhere for my love to go
And there won't come a day
When I won't honor what we've vowed(I vow to meet him there)
But I'll go on with my life
We can even say goodbye for now if
If that's what we have to do
But here in my heart
Even when my arms are empty darlin'
I'm still holdin' on to you
We can't deny that this one's
Out of our control(everything is in God's control)
Stronger than the both of us
And bound to take its toll
I can stand the test of time
And as far as I can see
There are no walls that we can't climb
Standin' between you and me(I will climb any wall to meet him in heaven one day)
And there's a place you'll always be
No matter where you are
You're here with me
When the world is turning upside down
Together we can stand our ground
We can even say goodbye for now if
If that's what we have to do
But here in my heart
Even when my arms are empty darlin'
I'm still holdin' on to you
I'm still holdin' on to you...
It is a really beautiful song. I know that where he is there is no sense of time. There is no sadness or grief. When we get there it will be like it was just yesterday that he saw us. I feel grief for what I am going to miss. He didn't get to become a teenager. He won't get to graduate. He won't get to fall in love and marry. He won't get to be a father. I don't get to see what kind of man he would become. Ok I didn't mean for this to turn in this direction. I am lucky he was a gift given to me to care for until our Father called on him. He never promised any of those things to me. He gave Brandon to me to care for him for however long God saw fit for him to be here. There is no promise for tomorrow for any of us.
Well, I think that is enough for tonight. I hope you are all doing well. Please share your memories of Brandon with us all.
Take care and God bless,
Kathy and family
Thursday, July 3, 2008 3:27 PM CDT
I put new pics in the photo gallery!! Go check 'em out!
Tuesday, July 1, 2008 1:29 AM CDT
Some of you may know and a lot of you don't know what has been going on with Savannah. In Feb. we noticed that Sav's right knee was swollen. She said that it had popped when she went to get into the chair. We don't know if that was the start of everything or if it was swollen before that and we just hadn't noticed. You could tell there was fluid on it and it was warm to the touch, but other than when it popped she didn't experience any pain. So of course with everything we went through with Brandon, I made an appt with her pediatrician to get it checked out. She had a couple visits with her pediatricians office. They took blood and x-rays. They said that the blood tests showed inflamation. They refered us to an orthopedic doc. We went to him and he took more x-rays and checked out her knee. He moved it and made her jump on it. Everything seemed fine, no pain. He told us to wait a few weeks and see if the fluid reabsorbed on its own. A few weeks went by and it was still swollen and she started complaining that her leg hurt in the mornings when she first got up. So we scheduled another appt with her pediatrician. They scheduled her for a bone scan a couple weeks later which showed a few hot spots, but was really inconclusive. Then they scheduled her for an MRI, which showed that the bone looked good, the marrow looked good and there was no sign of injury and that it presented like JRA(juvenile rheumatoid arthritis). Finally Friday we saw a rheumatologist. The rheumatologist confirmed what we thought was going on. Sav has JRA, there are 3 major types, the type she has is called pauciarticular(paw-si-articular). That just means that it affects 4 or fewer joints. Her right knee is the only joint affected. The doc gave us a brace that she has to wear at night to keep her leg straight and she has to do physical therapy exercises here at home to help stretch the muscle behind her knee because she has nursed that leg because it hurts and now she can't straighten it completely. He also put her on naproxen to help with the inflamation and swelling. She also has to have eye exams every 3 to 6 months depending on the outcome of one of the blood tests to keep a check on her eyes because this can somehow affect her eyes as well. She has to go back in 4 to 6 weeks to see how the naproxen is doing and find out if she needs to be put on something else to control the arthritis. We decided 2 weeks ago that I would give notice at work and stay home with Sav and Jordan so we can get her better. She has had to be carried for the first couple hours after waking up so getting her to daycare was a challenge. She didn't feel good and didn't want to go. Ernie actually had to take her to work a couple times until she felt better. So I am at home with my kiddos now. I plan to start school full time in August, but I am going to take mostly online classes so that way if Sav has bad days then we can work around them.
Also, to update on Jordan. For those who aren't aware, he was diagnosed with asthma a few weeks after Brandon passed after having an asthma attack in the Pediatric ICU waiting room and having to be taken to the ER. Jordan is doing great. He has had NO asthma attacks since he was put on Advair and allergy shots. He had his 6 month check up with his allergy and asthma doc and everything was great, he even lowered his Advair dosage and said that he can discontinue his zyrtec and nose spray.
We deal with all things as they come. Sav's diagnosis of arthritis at the age of 6 isn't what we want for her, but we will make the best of the situation we are given. This isn't the end of the world and things could always be worse. We are thankful for everything we have and have had. Just say a little prayer that things go well.
Take care and God bless,
Kathy
We love you and miss you Brandon!!
Tuesday, June 10, 2008 10:33 PM CDT
Well, I figured I would do an update letting you all know what has been going on with Sav. She has been having some trouble with one of her knees. Her right knee has been swollen for a few months now. It has fluid on it and is warm to the touch. For a while it didn't hurt or bother her it was just swollen. We took her to her pediatrician, they did blood work and x-rays and they sent her to an orthopedic doc. He took more x-rays, moved it around, made her jump on it and walk and said that everything looked fine from what he could tell and to give it a few weeks and see it the fluid reabsorbs on its own. Well it didn't and she started complaining that it hurt in the mornings. So we took her back to the doctor and they set up a bone scan. The bone scan didn't really tell us much so they set her up for an MRI. Well, the doc called today and said that from looking at the MRI it looks like Juvenile Rheumatoid Arthritis. The bone looks good, the marrow looks good, there are no signs of injury. Of course all this time that awful thought is going through my head..could this be cancer..please don't let this be cancer. This was just all way too familiar..Brandon was 6 when his symptoms started and when he was diagnosed, he had a bone scan, multiple blood tests, x-rays and was sent to a rheumatologist. But, I am pretty convinced at this point that we are dealing with arthritis. She complains of pain in the mornings when she gets up, but as the day goes on she is fine. Which is a major sign or arthritis. Plus, it is the joint that is affected. With Brandon his pain would come one day and be better the next and would travel to different places in his body and wasn't in his joints.
Sometimes I find myself thinking..what else is going to happen in our family? As if we haven't been through enough. I know that is awful and I can't think like that. But, I mean during everything that was going on with Brandon being in PICU, Jordan has an asthma attack in the waiting room and has to be taken down to the ER and is diagnosed with asthma shortly after Brandon passed away and now this. God must really think we are tough. This is an awful lot to throw at us in a lil' over a 6 month period. We just try to keep positive and do our best to deal with everything. At least asthma and arthitis are treatable. It could always be worse.
Ok enough complaining for one night. Hope you are all doing well.
God bless,
Kathy and family
We love you and miss you bubby!!
Saturday, May 31, 2008 2:43 AM CDT
Ok so I really haven't truely put into words how things feel since Brandon passed. It really feels like the normal story of our life ended when he went to heaven. Like we started a new story after that. That probably doesn't make sense. I don't know how else to put it. It feels strange doing things that don't include him now. He is still a big part of our lives, but I just don't know how else to explain how I feel. I try to include him in our "new" story as much as I can.
We miss you so very much bubby!
God bless all,
Kathy and family
Sunday, May 11, 2008 1:05 A.M. CDT
Well, as of tomorrow it will have been 6 months since Brandon's passing. I realized the other day while in the card isle at Wal-Mart that this will be the first Mother's Day that I will be getting one less lil' handmade Mother's Day gift. Needless to say I didn't spend much more time in that isle...as a matter of fact I left very quickly with tears in my eyes. I have learned that the emotional times often catch me off gaurd..sometimes at the most inconvenient times.
I can't believe it has been that long since our sweet boy left this earth to be with our lord. We love him and miss him so very much. My heart aches to see him and hold him. Sav makes us pray to God and Brandon every night. She catches me off guard sometimes with some of the things she says. I was explaining to her one day why it was so important for her to buckle her carseat all the way because she only wanted to buckle part of it and I told her that if we got in an accident she could be hurt really bad or killed and without any hesitation she said "well I would like that cause I could be with Brandon". I told her that mommy would be very sad if that happened and that Brandon will still be there waiting for her when it is her time to go and be with him. I know how she feels though.
I talk about him constantly. To the point that I am sure my co-workers are sick of hearing it. Guess they will just have to deal with it because I can't stop. I said the D word the other day for the first time. It just came right on out without any thought, but right after it came out of my mouth I was in shock. I just kind of froze for a second. I don't remember exactly what the conversation was, but I said something about "after he died". I hated saying it. It felt awful. I miss him so much, but he is always with me in my thoughts and in my heart. Well, I guess that is pretty much all for now. Happy Mothers Day to all of you moms out there. Be sure and enjoy every moment with your children every day.
God Bless,
Kathy and family
Just in case you scrolled past it without seeing it I put a new pic at the top of the page. Check it out!
Friday, April 18, 2008 9:37 PM CDT
Hello everyone,
Sorry it has been so long since I updated. We have been very busy. We recently bought a new house and have been busy moving and getting settled. We still aren't finished. With me working 3 days a week I have to try to get things taken care of on my days off and unfortunately things have been going on during my days off. But, we are slowely but surely getting things taken care of. We should be finished cleaning the house on base this weekend so we can concentrate on getting our new house in order.
We are all really enjoying the new house. We just wish Brandon was here to enjoy it with us. We miss him so much! My job is going pretty good. I get reminded of Brandon and all the time that we spent there. I love thinking about all of our time together. Even the times we were in the hospital. We were so lucky that he did so well through most of the 6 years he was treated. Most of our time in the hospital was good bonding time during chemo admits and not really sick time. There are times when I wonder if I really need to be in that hospital though. Sometimes it is so difficult to be there. It is really sad to say it, but I really miss being there with him. I miss being a parent in the hospital instead of an employee. I am so glad that he isn't having to suffer anymore, but I miss him so very much. The selfish part of me wants him back so bad. I know that he is being taken care of, but I want him here so I can take care of him. I know that God has a purpose and plan for him there, but sometimes that just isn't enough and I want him back so bad. I try to find different ways to honor him and keep him here so to speak. Talking about him really helps me. I love telling people about him. I want everyone to know him and what he went through. He was a very special kid.
I still have trouble with the D word. I still say that he passed away. I don't know that I have let myself say the other. I don't know why that seems to be an issue. I guess it just sounds so final. Don't get me wrong, I'm not dillusional...I know he is gone and not with us I just can't bring myself to say that for some reason.
We are about to add a new member to our family. It's a girl. We haven't chosen a name yet. She is a Yorkie. Tinkerbell will have a sister:) She is almost 3 weeks old, so we will be getting her in a few more weeks.
We are also looking into having a sister or brother for Jordan and Sav:) I have been wanting another one for about 2 years or so and there was just too much going on to add another lil' one into the mix. Plus, it took a lil' convincing *begging* to get Ernie to agree to it haha. We are pretty excited about it though. I am trying to set up an appointment to be seen at the reproductive clinic at San Antonio. I had my tubes tied when I had Sav so that has to be reversed. I can go there and it won't cost anything. Just the cost of the trip and lodging. We are going to try for the end of July for my surgery. Then with a lil' luck and lots of prayers maybe we will have another precious lil' one running around. I can't wait! Brandon would love it...he really wanted another sister. He was such a wonderful big brother.
One last thing, please say lots of prayers for my papaw. He had his own battle with cancer around the time we found out that Brandon had to have a transplant and we just found out that the cancer has come back. Please keep him in your prayers. I guess that is enough for now.
Take care and God bless,
Kathy and family
Sunday, March 9, 2008 6:39 PM CDT
Well, it has been a while since I did a journal entry. We are all doing pretty good. Arkansas Children's Hospital had a memorial service today for all the loved ones who have been lost since November 1, 2007. There were 42 children and 1 ACH employee. I hadn't thought about the fact that it has been almost 4 months since Brandon passed away, until they mentioned that the most time that has passed since someone in that room had lost their loved one was 4 months and 9 days. I then thought about how long it had been since we last had Brandon physically with us. We miss him so very much. 4 months isn't that long, but when you think about how many days it has been since we have had our boy here with us it seems like an eternity. I still have moments that are very hard. I went to PICU(pediatric ICU)the other day to see one of our patients that got transfered over there and it was really hard. I'm sure the nurse thought I had too much of an attachment to her, but it was just really emotional to be back there. That is where Brandon was when he died. I can definately say I will not be going back there again any time soon. I had stayed away for that reason, but really wanted to go and see this little girl. I really enjoy working there though. It is a great place to be. The kids are really fun. Some of these kids spend more time in the hospital than out, but still smile when you play and interact with them.
I guess the days are getting easier. We are continuing to move on with our lives. There is no time for stand still when you have 2 other kids who need you. I thank God for them and everyday that we have with them. Well, I guess that is all for now. I hope you are all doing well and are enjoying each and every day with your loved ones.
Take care and God bless,
Kathy and family
Saturday, February 9, 2008 0:03 AM CST
Brandon's headstone is finally finished and out at his grave site. I posted a pic that the funeral home emailed me in the photo album. I will try to get some better pics of it when we go home to visit and I will post them.
We are all doing ok. We still miss Brandon more than words can express, but we do our best to enjoy each other and the time we have together. We talk about him quite often. He is definately still a big part of our lives. It seems like it has been longer than almost three months since his passing.
Everyone have a great weekend!
Kathy and family
Sunday, January 27, 2008 9:54 PM CST
Today is Brandon's 13th birthday. Everyone be sure and say a lil' prayer and wish him a Very Happy Birthday!!!
Happy Birthday sweet man! We love you and miss you beyond what words can express.
Friday, January 11, 2008 9:39 PM CST
Hello everyone, I hope you are all doing well. I started my new job at Arkansas Children's Hospital on Monday. I LOVE IT!!! I love being around all those babies. Taking care of them is really fun. I think of Brandon quite a bit when I am there, but I really am enjoying it. I know he is so proud and happy that I am working there. I miss him so much. It is strange being there as an employee, instead of a parent. Several of the nurses that took care of him have seen me in the halls and had to take a second look because they weren't used to seeing me in scrubs haha.
Tomorrow will be 2 months since Brandon walked hand in hand with our lord on his way to heaven. It feels like it has been so long since we have got to hold him, touch him, or kiss him. We miss our boy so much. Brandon would be 13 this month. Our angel would be a teenager. He liked that he was a "pre-teen". I can only imagine how excited he would be to be a teenager. I got to hear his voice a week or so ago for the first time since he passed. I called Jordan's cellphone and got his voice mail and you can hear Brandon at the end of the voice mail message talking to Jordan. I wanted to call his phone over and over again. I have a recording of it. I really miss hearing his voice. I miss hearing him tell me he loves me. I miss how he used to have to have a hug and a kiss even if I was just running to the gas station 2 minutes away. Sometimes I wish time could just hurry up and go by and heal my heart, but I definately don't want to rush my other 2 growing up. I want to enjoy them as much as possible. Well, that is all for tonight. I hope you all have a good weekend. Enjoy your lil' ones!
God bless,
Kathy, Angel Brandon and family
Monday, December 31, 2007 5:38 PM CST
We are about to begin a new year without Brandon. It is tough to think about the fact that he won't be here with us, but unfortunately life goes on and the world does not stop for our pain. Maybe we can put this year behind us a little and move on to new things.
I start my new job next Monday. I really can't wait. Brandon would be proud. He was excited that I was applying for jobs there. He wanted me to work in the hem/onc clinic, but I don't think he realized that I am not a nurse yet:)
I can't remember if I posted about Jordan being inducted into the Junior National Beta Club. He is also in Alpha, which he says is a special class for the "smart" kids lol. We are very proud of him and his accomplishments this year. Today is his 11th birthday. It doesn't seem like my babies should be as old as they are.
Well, I hope everyone has a safe New Years. In case you scrolled down before you saw it...check out the pic at the top of the page. My friend Star knows someone who added the wings to that pic..isn't it just precious. He is our gardian angel watching over us. Anyway, hope you are all doing well.
God bless,
Kathy and Angel Brandon O:)
Tuesday, December 25, 2007 10:57 PM CST
Well, our first Christmas without our oldest shining star has come and almost passed. We have enjoyed the day with our other two shining stars. It really hasn't felt like Christmas this year. I've really felt like such a scrooge this year. We really miss our boy. I just didn't want to go through this. I just wanted to avoid the entire holiday season, but that isn't possible. Life must go on. We must move on, but we refuse to move on without him. He will always be with us, ALWAYS. Always in our hearts, in our memories of him. And those are some really wonderful memories. I miss his smile the most. He had such a big heart. He loved everyone. He loved so much, without judgement, with his whole heart. He's so special to all who knew him even a little.
On to moving on...I got a job at Arkansas Children's Hospital. I am so excited. I need to do this. I need to get out of the house and feel productive. I will be a patient care tech on the infant toddler unit. I can't wait. I love little ones. It is the hospital where Brandon passed, but it is also the hospital that was a big part of our life for the last 6 years. I have grown to love so many of the nurses that are there. I lost my boy, with this job I won't have to lose them too. I will be able to see them on a regular basis. That will help my heart and hopefully theirs. They love him so much and miss him. Hopefully I will get into nursing school in the fall of 08. This job will look good on my application.
Well, I guess that is all for now. I hope you all had a wonderful Christmas. Stay safe through the New Year.
God bless,
Kathy and family
Monday, December 17, 2007 8:49 AM CST
Well, it has been one month and five days since we lost our precious boy. We had his funeral and laid him to rest a month ago today. It is still so hard, knowing we won't get to see him the rest of our time here. I do believe in my heart and soul that we will see him again someday and that helps ease the pain a little bit. It will be so wonderful to be with him again. We all love him so much and miss him. We are trying to move on, each in our own style and our own pace. We packed a few of his things away into a rubbermaid container so that it stays safe. It is going to be a slow process of getting his things put away. I am pacing myself and just doing it when I feel like it.
We got a template of what Brandon's headstone will look like. I put a pic of it in the photo album. The template looks really good. I can't wait to see the finished product.
I got a tattoo(picture at the top of the page) of Brandon's name in the middle of angel wings with a halo above it. It turned out so good, the guy drew up exactly what I wanted and he did such an awesome job. I did really good while I was getting it. I started to get emotional at one point, but distracted myself by tormenting my friend Shelley who went with me who was complaining about her ear hurting because she had a piercing done haha. After it was finished and I looked at it and the tears just came and there was nothing I could do. My friends Shelley and Star got emotional with me, so at least I didn't cry alone. I wonder how many people have cried AFTER the tattoo was finished:) I don't the the tattoo artist knew what to do or say.
Well, we found out recently that Jordan does have asthma. We took him to the allergy and asthma clinic to get him checked out. He is going to have to start having allergy shots every 3 to 7 days. He also has to check his peek flow(how well he can force air out of his lungs) 2 times a day and has to take advair after each peek flow test. Hopefully this will keep things under control. Both him and Sav are doing ok. Sav still lets us know on a daily basis how much she misses Brandon and that she wants him back. Jordan is still pretty quiet about it. He misses him a lot though. He says little things here and there that let me know that.
I guess that is pretty much it for now. I hope you all are doing well. Be sure and take every chance you get to tell those around you how much you care about them. Thank you for continuing to check on us and pray for us. We appreciate you very much.
God bless,
Kathy and family
Wednesday, December 5, 2007 1:29 AM CST
It has been a rough couple of days. I have kept myself busy for the last couple of weeks, so I really haven't had time to really let myself feel the impact of what has happened. Yes, in a way that is good, but then again I need to let myself grieve and miss him. It still doesn't feel real most of the time. It feels like he is gone somewhere and we just need to go an get him. I miss him so very much. I had a dream Monday morning that he was still here with us and I was giving him his meds, so when I woke up to realize it was just a dream it made for a sad start to a bad day. Granted I am so glad he doesn't have to take meds or deal with any of that awful stuff anymore, I still wish he could be here with us and not have to go through that. I have been more emotional the last couple of days. I just miss him so much. It is so hard not to have him here with us. How do you move on? I know we need to and I think we are, I just don't know. How do you answer the question "how many kids do you have?" or "what are your kids ages?" without feeling like you need to go into detail. These are just some things I have been thinking about. I have danced around those two questions already or just avoided it all together. I feel like there is a huge hole in our family now and I definately don't want to try to fill his place, but how do we get to a place where we can feel whole again. Maybe we just have to adjust to a "new" whole. Sometime I have to tell myself to slow down, it is like I am trying to rush this process, I just want the pain to go away. All in all I am doing ok. Just missing my boy more than most could even imagine, and that is ok. I wish no parent would ever have to go through anything like this ever again.
Jordan and Sav are doing ok. Sav is more vocal about missing him and how she feels. I have to ask Jordan questions to get him to talk, but at least he will talk to me if I ask. Jordan has moved into Brandon's room. Jordan's room didn't have a dish connection in it so he is moving in there. We are slowly transitioning it into his room. He wants to keep some of Brandon's things in there to display. The rest we will eventually put up so they don't get messed up.
Well, it is pretty late so I need to go to sleep.
Take care and God bless,
Kathy
Wednesday, November 21, 2007 9:54 PM CST
Thank you to everyone who attended Brandon's visitation and services. We appreciate the support. He looked so handsome in his suit. He had 2 wonderful services. Thank you also to everyone who couldn't be there, but kept us in your thoughts and prayers. It has been a rough week and a half. It doesn't seem real. It all happened so fast. My heart aches because I know he is gone and we won't get to see him, kiss him, or hold him anymore here on earth, but it helps to know that he is in a wonderful place. I know he is cooking and enjoying himself so much now that he is pain free and worry free. I am still selfish and want him here with us, but I don't wish for him to go through anymore pain or discomfort. I know God has a special purpose for him there and we will see him again one day. He will have a wonderful meal ready for us when we get there.
I try to convince myself that we are lucky to have had a chance to say our goodbyes, some people don't have that chance. Then again those who go unexpectedly don't have to endure all the pain and suffering that he did. Maybe we are the lucky ones, but he wasn't for all that he had to go through. I know that there was a purpose for what he went through and we may never understand what that purpose was, but I do know that he touched a lot of people in the almost 13 years he lived on this earth. He was a very special boy that loved everyone. You couldn't help but to love him back. He had a smile that lit every room. I love him so much and miss him so. I know that God sent him to me to help him serve his purpose here and I hope that I made him proud. I am thankful that we had him for the 12 years 9 months and 16 days that he was here. I just wish that half of that time wasn't spent fighting cancer.
Well, I guess that is all for now. Thank you to those of you still checking on us. I hope you all have a wonderful Thanksgiving.
God bless,
Kathy and family
Wednesday, November 14, 2007 1:27 PM CST
Most of you already know.....Brandon has earned his wings and is now our gardian angel. He passed Monday November 12th, sometime around 11:40 pm. Visitation will be Friday evening from 6-8 pm at Moore's Jacksonville Funeral Home. Services will be Sat morning at 9 am at Moore's Jacksonville Funeral Home and he will be taken to Portageville, Missouri to be buried and that part of the service will be around 4 pm Sat evening.
Thank you to all who prayed for my sweet boy. He was such a fighter. He was so loved and he is and will continue to be sorely missed. Words cannot express the hurt we are all feeling right now, but we take comfort in knowing that he is in a better place and doesn't have to take anymore meds or get anymore shots or endure anymore pain and suffering. He was such a joy to have and I am so thankful that God graced my life with such a wonderful kid. He was my first and I learned so much from him. We are all better for knowing him. It seems so unreal that he is not physically with us anymore. I know in my heart that he is still around us constantly and will continue to watch over us.
God bless,
Kathy and Angel Brandon
If any of you feel compelled to do something for us...please instead of flowers or plants make a donation in memory of Brandon. Donations can be made to Arkansas Children's Hospital. There is an account set up in his name and the donations will be split between the Hem/Onc clinic and the Gold Unit.
ACH Foundation
In Memory of Brandon Camden
PO Box 2222
Little Rock, AR 72203
Sunday, November 11, 2007 11:44 PM CST
Well, the doc came in today and said his x-ray from today is worse than yesterdays. I am hoping that this is just a case of things getting worse before they get better. He is one to prove he can't be beat, so I am waiting for him to show this pneumonia that he is not giving up. I know that no matter what this is all up to God. He may need him up there more than we need him here. He is a very special boy. He has accomplished quite a lot in his almost 13 years. Hopefully he can beat this and continue to do whatever he wants to do. I would love to see him follow his dream of being a chef. I turn on food network on his tv for him all day and then at bedtime I play his music on his PSP for him.
I just love him so much. I just can't imagine not having him around. It is very hard sometimes. I am dong pretty good, but sometimes a wave of emotion hits. He has always been so full of life. I can remember when he was little he used to run around on all fours pretending to be Mighty Joe Young. He absolutely used to love that movie. We watched it a few days before he came over here to PICU. I miss that active kid full of life so very much.
Brandon is going to have a couple special visitors from San Antonio tomorrow. Our friend Vela and Brandon's home bound teacher Mrs Friday. They both love Brandon so much. Vela actually put blue streaks in her and both her daughters' hair for him when we dyed his hair blue, she is a walking advertisement for him:)
Dawn, thank you so much for the talk tonight. It really helped me get out some emotions that I have bottled up. I love you girl. I am praying for Eli to get through his transplant without any unexpected complications. I know that Brandon is talking to God for him as well as himself. We talked about praying for Eli before all of this. He hates to think of other kids going through what he has gone through.
Brandon has had a lot of visitors this weekend. So many people love him so much and want to see him get better. Savannah threw pennies in the waterfall they have down stairs and made lots of wishes for her bubba to get better and she likes coming to his room and visiting with him. She tells him she loves him over and over and that she wants him to get well.
Well, I need to get off here and go to bed. I will update tomorrow night to let you all know how things are. Please join us in also praying for Elijah during transplant. Also pray for Paxton, she has relapsed..I used to have a link to her page on Brandon's, but they don't use the page anymore.
Faithfully awaiting God's decision,
Kathy and Brandon
Saturday, November 10, 2007 2:15 PM CST
The doc came in this morning and said that they wanted to put him on a different ventilator, because from looking at his x-ray his lungs are getting worse rather than better. It is called an oscillatory ventilator. It is easier on his lungs. Hopefully this vent will help in his fight against this pneumonia. I asked the doctor for his honest opinion on if he thought that he was going to get better and unfortunately he said no. He said we will know in a couple of days if things are going to go in a positive direction. So I have called family in just in case. We know that God is the ultimate decision maker here, so keep talking to him and let him know that we need him. This vent is our last option as far as vents go, our next option would be to put him on a bypass machine. We haven't decided if we want to go that route or not. Hopefully that is a decision we won't have to make. We are praying that this ventilator is the key to letting him fight off this pneumonia. I know that God is watching over us and he will decide what is best for Brandon. Please keep us in your prayers as we let God lead Brandon in the direction he has planned for him.
Praise be to God,
Kathy and Brandon
Friday, November 9, 2007 5:35 PM CST
Brandon has done pretty good today. They have kept his oxygen level around 60-65 percent all day and he has been tolerating it pretty well. The only time they have had to raise it above that level is when they have had to move him around, because he doesn't like to be moved around and he lets them know about it by his O2 sats dropping. Once they get him settled again they take him back down and he does really good.
They have narrowed down the type of pneumonia he has. It is called human parainfluenza virus. There is no treatment for this virus. Basically all they can do is give him supportive care and boost his immune system and let his body make things better. What we can do is pray! Pray for his lungs to kick this virus to the curb. Pray that he stays comfy and that thing stay stable. Pray that the pneumonia starts getting better and that they can start to wean him off the vent. We are going to be patient and just wait it out. I know that God is with us. He is doing pretty good right now. His O2 sats are staying around 97-98 so lets pray that things continue to go well.
They moved us to a diffent room now that they know what he has. They have him on isolation because they don't want to pass what he has on to other patients, because it is contagious through his secretions. He can't cough or sneeze because of the vent so it limits exposure to them coming in contact with his secretions and taking it to another patient. But with good hand washing then it shouldn't be a problem. The new phone number to the room will eventually be 501-364-6326, but the phone isn't working, so for now you can call 501-364-1767. That is the nurses phone that is in here and they said we could use it until they get ours fixed. I will let you all know when the phone is fixed. Well, that is all for now. I am going to go eat.
Take care and God bless,
Kathy and Brandon
Thursday, November 8, 2007 3:08 PM CST
Things have happened really fast. Brandon has now been intubated and is on a ventalator. He started doing pretty bad this morning and you could tell he wasn't comfortable and was struggling to breathe and he was having trouble keeping his O2 sats up even with the BIPAP machine. So the docs talked with us and we decided it would be best to go ahead and intubate him and put him on the vent to give him a chance to rest and help the anti-viral med get rid of this pneumonia. It is hard to see him like this, but he looks more comfortable.
Please pray that we can fight this pneumonia and get him off the vent. Spread the word to everyone you know. We need all the prayers we can get. I will try to update more soon.
UPDATE: Well Brandon is doing pretty good on the vent. He has had a busy day today. They put in a central line in his groin so they have more lines available for meds and an arterial line in his wrist so they can monitor his blood pressure more closely. They also did a bronchoscopy to look at his lungs and they said things looked pretty normal. They went ahead and did a saline wash of his right lung so they can do cultures on it to see if anything grows. They are thinking that it is the BK virus that has went to his lungs and is causing the pneumonia. That is the only positive test they have gotten so far. CMV, RSV, and all those different viral tests have came back negative. They had to give him something to paralyze him so he would stop trying to breathe through the machine. So now the machine is doing the breathing and he is resting well.
I will update more later.
Take care,
Kathy and Brandon
Wednesday, November 7, 2007 6:07 PM CST
Just a quick entry to let everyone know what is kinda going on. He has had a big problem keeping his oxygen saturation up to where it needs to be. They are putting him in PICU so they can monitor him more closely and help him keep his oxygen at a normal level. I will let you all know have things go as I get a chance. Please pray things get better with him and that his lungs start healing.
Check the photo album. I put a new pic up of the huge bruise on his side from his surgery.
UPDATE: We are settled into PICU. It has been a very eventful night. They have him on a BIPAP machine which makes him breathe and forces air into his lungs. His O2 sats have been great since they put him on the machine, but he isn't supposed to talk or the machine goes crazy and that is absolutely driving him crazy because he is a big talker. So we have to get onto him quite a bit to make him stop talking. They also inserted a nasogastric(NG) tube to keep his belly from filling with air. They also put in a transpyloris tube(TPT), which goes just below his stomach, to give his meds through because he can't have anything in his stomach because there is a big risk of him vomitting and the machine pushing it into his lungs. He was such a trooper through it all. Of course he didn't like it, but he thanked all the nurses after they were done.
If anyone would like to send him something, he is really bugging everyone that comes into his room for cool pens and machanical pencils. Cards would also be great. Please no live plants. You can send it to the hospital address listed below.
Thank you for all the prayers, keep them going. I will update more tomorrow. Hopefully we can get some sleep tonight. He is sooooo exhausted and just won't rest. They are going to give him something to help him sleep, so hopefully he can get some well needed rest and maybe mom can too.
God bless,
Kathy and Brandon
Monday, November 5, 2007 4:40 PM CST
Brandon's surgeries went well. The ENT doc looked at his sinuses to make sure things still looked good and he said that everything looked great. The lung biopsy went well. We won't know anything right away. It can take a few days to find out something and if it is fungal it can take longer than that to narrow down what type of fungus it is. He is doing really really good right now though. He is very tired and fighting going to sleep, but other than that doing fine. He has already put his order in for supper...he wants Burger King:) Well, I guess that is all for now. I will update more as we know more. Thank you so much for all the prayers, they worked wonders.
God bless,
Kathy and Brandon
Friday, November 2, 2007 12:14 AM CDT
Well, we went down for his CT scan this morning. The doc came in a minute ago and said things are getting worse rather than better, so he will have a biopsy done early next week. The doc says he would like it to be done Monday, but we will have to see what the surgical team says.
There are some risks with this procedure, but we really don't have a choice. We have got to get control of this pneumonia. A couple of the risks are a collapsed lung or having to be on a vent because he can't recover his breathing on his own after being sudated since he is already on oxygen and having trouble with his pulse ox because of the pneumonia. But with all of your prayers we can make it through this. So say a special prayer that things will go well for Brandon during this procedure.
As soon as they let us know exactly when they will be doing the procedure I will let you all know.
Laus Deo (Praise be to God),
Kathy and Brandon
Update: Surgery is set for Monday. We don't have a set time, but I signed all the paperwork today. Oh yeah, I put a couple new pics in the album so go check 'em out:)
Thursday, November 1, 2007 7:39 PM CDT
Brandon is doing about the same. He is still on 6 liters of oxygen. He has been very tired the last couple days, but we did get him to go do physical therapy today. He also did some school work.
We have a new doc coming around to see Brandon. The docs take turns each month taking care of the kids that are admitted. Anyway, the doc that is doing rounds this month seems to be more pro-active in wanting to figure out exactly what type of pneumonia he has so they know how to treat it. He also thinks that it is fungal. They are going to do another CT scan tomorrow to see if it is getting better and if it isn't then more than likely early next week they are going to do a biopsy.
I will let you all know more as I know more.
Take care,
Kathy and Brandon
Sunday, October 28, 2007 8:22 PM CDT
Hello everyone, I hope things are going well for all of you. I thought I updated his site after Wed, but I guess not.
Brandon is still in the hospital. They had to up his oxygen and breating treatments today. They did an x-ray to make sure the pneumonia wasn't getting worse and the doc came in and said that things looked about the same. Hopefully they can start going down on the oxygen soon.
Brandon had a very special visitor tonight--Darth Vader. I took Jordan and Savannah to a halloween party at the club on base and there was a man there dressed as Darth Vader, so I asked him if he would come to the hospital to see Brandon if he had time. They came up to the hospital today and brought him some candy. I wish I had my camera in my hand at the moment that he saw him. His eyes got so big. I got a couple pics that I plan on putting in the album when I get them uploaded onto my computer.
Jordan was positive for strep throat. They put him on an antibiotic and a steroid. I think the rest of us got lucky and didn't catch it. None of us are showing any symtems. They also surprised him with a flu shot, poor guy. I guess that means me and Savannah are next. Sav's tummy is completely healed and she is doing great. She is back to her spunky lil' self:)
Well, I guess that is pretty much all for now. Everyone take care.
God Bless,
Kathy and Brandon
Wednesday, October 24, 2007 11:56 PM CDT
Brandon was admitted today. He was having chest pain on the left side and was running a low grade fever of 100.1. I called the nurse and she said to give him tylenol for the pain, so I gave him tylenol. An hour later he was still groaning and hollering out in pain. I took his temp again and it was 100.3 even after tylenol. I called his nurse again and she called his doc and they told me to take him in.
I am not sure if I mentioned it or not in past journal entries, but they told us shortly after he got out of the hospital during the 2 and 1/2 week stay with the sinus infection that one of the x-rays they did while he was admitted showed that he had a slight case of pneumonia. Well, they showed the x-ray from the begining of October side by side with the one they took today and his pneumonia is worse. The one they did a few weeks ago you can see a definitive outline of his heart and on the one from today you couldn't. Anyway, they admitted him and started him on antibiotics. He is having some issues with his pulse ox so they have him on oxygen.
His appointment from yesterday went well. He had to get platelets because they were only 3. Yes I said 3 and the norm is 140-400. Today they were 14, even after getting platelets yesterday. Anyway, that is all I have for now. I will update more as we know more. For now I am going to sleep. His dad is sitting with him tonight, I have to take Jordan to the doctor tomorrow because we think he may have strep throat and then I have to go back to the hopital to be with Brandon. Everyone take care.
God bless,
Kathy and Brandon
Saturday, October 20, 2007 0:11 AM CDT
We are home! Most of Brandon's blood tests came back and they were all negative. The doc said he could go home. They raised his dose of oxycodone for pain. He actually did really well tonight and didn't have to have anything for pain. The doctors told him he is going to have to start doing something besides lay in bed and watch tv. We all know that he is tired and weak, but he will actually feel better if he gets up and moves around during the day. It is just so hard to make him get up and do something when I know he doesn't feel good, but I am going to have to suck it up and make him be active.
We got a couple visits from the psych team while we were in. Brandon was very vocal about how he felt like his life was slowly coming to an end, so his doc had the psychologist that we have started seeing, come and see him as well as the psych team there at the hospital. They decided to put him on an anti-depressant. He just worries so much about everything and seems depressed all the time. I was really torn about putting him on something, but I want him to feel better. He just hasn't been himself for several months. Doctor Becton told him that he would be honest with him about how things are going and that he would let him know when things got to a point where there wasn't anything else they could do. He is afraid he is going to go to sleep and not wake up. Poor guy, I wish I knew what to say to make him feel better about things.
Well, I guess that is it for now.
Take care,
Kathy and Brandon
Tuesday, October 16, 2007 10:51 PM CDT
Brandon was admitted today. His liver enzymes are pretty high so Dr Becton wanted to admit him to give him fluids and run some tests to see what is going on. Brandon was actually glad to get admitted. He has been feeling pretty crappy. He has been really tired, weak, and achey. Not sure how long we will be in here, hopefully we will find something out in the morning. His counts are pretty decent though so that is a good thing. His platelets are pretty low, but everything else is ok. We did finally get to stop the anti-fungal. We finally get to stop coming everyday and we get admitted haha..if it isn't one thing its another huh. Oh well, things could always be worse. We found out yesterday that a little girl who got her transplant around the same time as Brandon passed away last Wed. We got to meet and talk to them a few times in the clinic at San Antonio. They had her funeral today. Please join us in praying for her family during this very difficult time. As always, thank you all so much for the prayers and well wishes and thoughts. We appreciate you all so much. Special thanks to our prayer angels...especially David. Thank you for checking on Brandon on a daily basis and praying for him. It really means a lot to us. You are very appreciated!!
Take care and God bless,
Kathy and Brandon
Monday, October 8, 2007 12:03 AM CDT
Hello everyone, I hope things are going well for all of you. Things are going pretty good for us.
We went into clinic every weekday last week for Brandon to get his anti-fungal. Things went well all week. He didn't have to get potassium at all last week. He has to continue to go to clinic every day this week to get his med, hopefully things will go as well this week as last. His platelets are pretty low today so I am sure he will have to get platelets one day this week.
They only have us scheduled for one appointment next week so I am assuming that unless they say otherwise that this is the last week of coming in everyday. We will be very glad.
We did have a little excitment last week. Tuesday evening we had to take Savannah to the ER. She had a soccer game Tuesday night and after the game we were folding up our chairs and getting ready to leave and Sav laid stomach down on a wooden bench and drug herself along the bench. She had splinters all in her shirt and got one in her stomach and started crying. We took her home thinking it wasn't that big a deal and I would be able to take it out. Well, when we got home I tried to take it out, but it wouldn't move. I felt around and could tell that it was at least an inch long, so we took her to the ER. She wasn't very happy about having to go to the hospital, she wanted me to take it out. Well, we took her to the hospital here in town(we knew better, but figured they would at least be able to take a splinter out)they told us they wanted us to go to Arkansas Children's to have them deal with it because it may have punctured her intestine or the peritinial lining and she may have needed surgery. They also told us that you can't see wood on an x-ray which is crap. We were going to drive her, but they wanted to take her by ambulance so we wouldn't have to sit in the waiting room for who knows how long, so we agreed. We got to Children's and they took it out and we were all in shock at how big it was, it was about 2 inches long. They took an x-ray to make sure they got it all and everything was good. So we finally made it home around 1 am. Who knew a splinter could be so much trouble.
Well, I guess that is pretty much it for now. Remember to keep our friends in your prayers. Our friend Elijah will be very busy getting ready to go to transplant for the next couple weeks, so say lots of prayers that things go well.
Take care,
Kathy and Brandon
Monday, October 1, 2007 10:04 AM CDT
Well, things are going pretty good. Brandon's appointments went well last week. He had to have a potassium bolus after his anti-fungal every day last week. His potassium level has been low quite a bit, even though he is on oral potassium. I think the anti-fungal depleats his potassium. He has to go in every day this week for his anti-fungal and probably next week. We aren't sure how long we will have to continue to go in every day of the week. I guess whenever the docs say we can stop then we will stop:)
I guess that is pretty much all for now.
Take care,
Kathy and Brandon
Sunday, September 23, 2007 1:11 AM CDT
Just wanted to post a quick note to let everyone know that Brandon got to come home Friday around 3 pm. He is doing well. Sorry I didn't update sooner. He will have to go into clinic 5 days a week for a few weeks, but at least we are home. Well, I will update more later. Everyone take care.
God Bless,
Kathy and Brandon
Tuesday, September 18, 2007 3:32 PM CDT
Things are going pretty good. They aren't going to do the kidney biopsy, at least not for now. They did a renal scan on him yesterday and today they said that there is some scaring on his kidneys, but they are functioning good by urine and blood tests so right now it is better to treat the more serious issues.
Hopefully he will be getting out soon. The doctor said that hopefully he can get out within a week. That would be awesome. We will have to go into the clinic 5 times a week for 4 to 6 weeks for him to get his anti-fungals, but it will be worth it to be home.
Well, I guess that is all for now. I will update more as we know more.
God Bless,
Kathy and Brandon
Friday, September 14, 2007 8:27 PM CDT
Brandon is doing really good. His surgery and endoscopic procedures went well. No complications with either. The ENT doc said that things are looking considerably better with the fungus. He said that he didn't see any "really" suspicious looking areas, but they went ahead and took some biopsies anyway. The doc said that the biopsies from Mon. surgery did finally come back positive for fungus. But things are looking up.
Nothing really new happened today other than his surgery and procedure. I think the doctors are leaning toward going ahead and doing a biopsy of his kidney. We will just have to see what they say over the weekend, I guess. He is doing really good though. He is off the morphine pump and they are just giving him oxycodone by mouth every 4 hours. He isn't in any pain, which is awesome. I am so glad he isn't hurting anymore. He is sitting in his bed right now doing a craft project. You would never think the kid had anything done today, much less have a scope stuck down his throat, nose and up his bottom.
Well, I guess that is it for now. Hope you all are doing well.
God bless,
Kathy and Brandon
P.S.- Thank you for all the well wishes and prayers. We appreciate each and every one of you.
Thursday, September 13, 2007 11:43 PM CDT
Well, we have had quite a bit going on in the last couple days. I don't really even know where to start. I guess for starters his viral tests came back and the BK virus that we battled so hard going into clinic 3 days a week for IV antibiotics back in San Antonio has rared its ugly head again. It is the one that affects the kidneys and blatter. They don't really want to start treating that because the med will hinder his counts which we don't want because we need his counts to fight the fungus and it is hard on the kidneys, which lead me to the next thing that is going on.
He had an ultrasound yesterday that had some problem areas. The ultrasound was of his kidneys and there are lil' patches all over both kidneys and one of his kindeys has shrunk. They aren't real sure what is the cause of it, it could possibly be the BK virus or it could be fungal. They discussed doing a biopsy of his kidney, but the nephrologist said he really isn't comfortable poking around on him if he doesn't have to. His urine and blood tests aren't showing any abnormalities, so I guess they are going to assume that it is BK. They are going to discuss the options and see what they as a group think would be best.
Then he had a CT scan and it showed some irritation in his intestine. They are going to go in with a scope tomorrow to take a look and get a sample of his intestinal wall to test for GVH. He has been having some diarrhea issues on and off for a while and they think he may have some GVH of the intestine. That is good news in a way though because if we have Graft vs. Host we also have Graft vs. Leukemia too. They did go ahead and start him on a couple meds for the GVH, one is IV and the other is by mouth.
We should know the results of the marrow test sometime next week, to find out if his marrow is still 100 percent donor. He is having his 5th sinus surgery tomorrow. They are going to go in and clean things up again and see if they see any fungal looking areas. So far the biopsy from his last surgery hasn't come back positive for anything, but it can take up to 7 days for it to grow something. He is now on 2 different anti-fungal meds and his white count is better so hopefully we have the fungus under control so we can go home soon. The fungus is our main issue, the other stuff we can deal with on an outpatient basis.
Well, I guess that is all for now. I will try to get on here tomorrow evening to let everyone know how his surgery and scope procedure went.
Take care,
Kathy and Brandon
Monday, September 10, 2007 7:04 PM CDT
Brandon had his 4th sinus surgery today. There was more fungal looking areas that they cleaned up and biopsied. The doc told me today that the fungus is now on both sides of his sinuses and not just the left side anymore. He has had some trouble with his oxygen level getting back to normal after today's surgery. They have him on oxygen right now. He is doing pretty good otherwise. They are going to do another surgery Friday. He is so tired of being here. He was so frustrated earlier with the oxygen and having to take deap breaths. He was getting aggrivated because we kept telling him to take deep breaths, he would yell "I am" and start crying. I can't wait til we get control of this so we can go home. He is so ready to go home.
We are very lucky to be able to take our boy home though. There is a family that really needs prayers right now. Their son TJ lost his battle with cancer Sat. Please keep TJ's family in your prayers. His website is www.caringbridge.org/la/tj I know it is tough to visit these sites sometimes, but just imagine how hard it is for us and these families to go through what we go through. So keep visiting and praying for us and the others. I hate watching my child go through what he does. His childhood has been taken away from him, as well as all the other kids who go through this. Ok, sorry I rambled on. Everyone take care and may God bless all of you. He really is amazing. I know it may not seem like it sometimes with all the things that happen in this world, but he really is wonderful.
Take care,
Kathy and Brandon
Saturday, September 8, 2007 2:44 PM CDT
Just a quick note to let you all know that the pathology report on his marrow looked good too. So another marrow procedure(3 in a row) with NO CANCER. We are very blessed!! Partly because of all your prayers and we thank you all very much.
We don't know any results of any of the other tests that have been sent out. We did a leg shot of neulasta last night to try to boost his white count up. Hopefully that will help fight off whatever is going on in his little body. Well, I guess that is all for now. I will let you all know how things go with his sinus surgery Mon.
Take care,
Kathy and Brandon
Thursday, September 6, 2007 5:37 PM CDT
Brandon is doing ok. He has started complaining of pain in his legs, feet, ribs and arms here in the last few days. He had a rough night last night because he was in quite a bit of pain. They finally put him on a pain med pump around 2:00 am last night. Poor guy still moaned and groaned during the night, but he is doing pretty good today. He is still hurting occasionally, but nothing like last night. They did another sinus surgery on him yesterday. Everything went well with that. The doc said that he saw a couple "suspicious" areas that looked like fungus and they biopsied them. They also did a bone marrow asperate to check for cancer cells. The preliminary results showed no cancer. We should know the final pathology results tomorrow. They were concerned that the cancer might be back because his white count just isn't recovering and the pain he has been having concerned us too. So now we just have to figure out why he is hurting. They sent out viral tests out today to try to start eliminating things. They are going to do another sinus surgery Mon to stay on top of the fungus. Not sure when we will be getting out of here. As long as we get him healthy that is all that matters.
He is doing pretty good in school. We are a little behind with everything going on, but we are trying to get caught up.
I guess that is all for now. Thanks for all the prayers, messages, and well wishes. Keep praying!!
God Bless,
Kathy and Brandon
Saturday, September 1, 2007 0:29 AM CDT
Well, we had some cultures come back positive today for fungus. They haven't figured out which one it is quite yet, but the anti-fungal meds he is on are pretty broad spectrum..meaning they cover a lot of different types of fungus. They did another sinus surgery on him today to see if there was any new growth from Wed. Everything went well! There wasn't any new growth from the fungus, but there was a little more dead tissue. The cause of the dead tissue is from the fungus blocking the blood supply from getting to the tissue and bone which creates a lack of oxygen which in turn causes tissue and bone to die. It is serious, but not as serious as it may sound.
The doctor had just came in and told Brandon they weren't going to do surgery on him because there was no positive culture back yet and they didn't want to put him through an un-neccesary procedure. He got a page while he was still in the room and after he left he returned the page and came back and said hold off on eating and drinking we are going to be doing surgery because we just got a positive culture back. Of course my poor lil' guy was heartbroken. He already had the phone in his hand ready to place an order for food.
They are going to take him back into the OR Wed for another surgery to check things out and see how things are going. They want to keep a really close eye on this fungus because it could possibly move up into his brain if they don't control it and we definately don't want that to happen. His immune system just isn't able to fight it off right now, so they have to keep a really close eye on things and make sure the anti-fungal meds are doing their job.
We are REALLY enjoying homeschooling. I think I am enjoying it as much as he is. I am learning some things right along with him. He LOVES telling people that his mom is his teacher. He seems so proud:) He enjoys the bible studies, which I had my concerns about because he is constantly saying he doesn't like or want to go to church. His favorite subjects are math and science. Homeschooling him makes me want to pull my other two kids out and homeschool them too. But we will stick with one thing at a time right now :) I don't want to overload myself, seeing as it is my first time doing this. Jordan has already told me he wants me to homeschool him too, which surprised me...I figured he would want to be around other kids. Savannah makes me want to homeschool her everytime I drop her off because she tears up and doesn't want to let go of me. But I know she enjoys it once she is there.
Jordan has decided he wants to run for class president. I never thought I would have a politician on my hands haha. He also volunteered to be one of the fire marshalls at his school, which means he goes to designated rooms during fire drills to make sure everyone gets out of the building. He was also recommended for the National Beta Club. He has really started getting involved with things this year.
Well, I guess that is it for the night...as if that wasn't enough haha. I guess I had a lot to say tonight:) I will keep you all posted on how things go.
Take care and God Bless,
Kathy and Brandon
Wednesday, August 29, 2007 11:26 PM CDT
Brandon's sinus surgery went well today. The doc said that the right side was pretty much just normal sinusitis, but the other side is the one he is concerned about. He cleared out both sides and said there was some dead tissue and bone that he removed out of the left side. He is concerned that the left side could be a fungal infection. We won't know for a few days. We will probably be inpatient at least until the first part of next week. If the infection is fungal then the doc said we may have to be inpatient for a couple weeks or so. The doc wants to get him back into the OR Friday to check him out again and see if there is any new growth and clean him out again if needed.
He is doing really well. He is Mr Talkative since he is on pain meds:) He always gets that way. He is so funny, the nurses get a big kick out of him when he gets like this.
We have started his homeschool. He really seems to like it. I got a curriculum that is computer based. It wasn't cheap, but he likes it and it grades most of his work for me, so it makes things a little easier for me. If things work out well I may just homeschool the other two kids next year if they want me too. Jordan has already taken an interest in it. He had me make an account for him on Brandon's curriculum so he can work on it too.
Well, as soon as we find something out then I will let you all know.
God Bless,
Kathy and Brandon
Tuesday, August 28, 2007 10:21 PM CDT
Well, Brandon was admitted today. He started complaining that his left eye was hurting, over the weekend when he was at his dad's. Then when he came home he started complaining that the side of his face was hurting too. I figured it was his sinuses. Well, at his appointment today they did a CT scan of his sinuses and they were full of infection. They decided to admitt him and check things out further. They are concerned that it could be fungal. Hopefully it is bacterial and not fungal. They are saying that he will possibly be out by the weekend. The ENT doc came and looked at him and they decided they want to do a procedure tomorrow to go in with a scope and clean out his sinuses and do a biopsy to check for fungus. Everyone say a prayer that everything goes well. I will update after we find out more.
As far as his counts..he had to get platelets and IV IG. Well, that is pretty much it for now. God bless all of you.
Take care,
Kathy and Brandon
Wednesday, August 22, 2007 10:42 PM CDT
Brandon is doing pretty good. He is still dealing with an ear infection, but I think we are getting control of it. He sprained his ankle over the weekend, we had it checked out and nothing was broken so that was a good thing. His appointment went ok Tues. It was a very long day. We didn't get out of there until probably 5:30. He got blood and platelets. I am very glad though, he looks alot better and he feels better. Well, that is pretty much it for now. Please keep praying and pray for our friends.
Take care,
Kathy and Brandon
Friday, August 17, 2007 6:46 PM CDT
Sorry it has been so long since I updated his page. My grandpa on my dad's side passed away Monday so I had to go out of the state for his funeral.
Brandon is doing really good. He has been having some trouble with an ear infection, but other than that he has been doing really good. He didn't have to have any blood products Tues when we went to clinic. His counts were pretty good. Other than having to go to the ENT clinic to get his ear checked out it was a quick day.
I am going to be homeschooling Brandon since he can't attend school. School starts on Monday. My where has the summer gone. It flew by so fast. Well, I guess that is all for now.
Take care,
Kathy and Brandon
Tuesday, August 7, 2007 11:38 PM CDT
Well, our trip home went pretty well. Brandon watched a lot of food network...that is his thing these days. He wants to become a chef when he grows up. He watches food network every waking hour.
Things went well at Brandon's clinic visit last week. He got IV immunoglobulins which is something he gets once a month for his immune system and platelets.
We finished up his immune therapy shots last night. He did really well with them. The doctor wouldn't let him stop them and he was really really upset about it, but after he really thought about it he was glad that the doctor stood his ground. He said he was gonna thank him for not letting him stop them. He is so amazing. I think it was more of a power struggle than anything. He likes being in control.
His appointment today went well. He got platelets and said it made him feel better:) Well, I guess that is it for now. Keep praying! We are very lucky to have your prayers.
God bless,
Kathy and Brandon
Monday, July 30, 2007 11:44 PM CDT
Brandon is doing pretty good. We have an appointment tomorrow, but I may not be able to update again until Sunday or Monday. We plan on going to Missouri to visit family as long as things go well tomorrow and we won't be back until Sunday night. He is doing really good though. We have been doing his immune therapy shots. He wants to quit doing them, poor guy is tired of dealing with painful things. Of course I told him that the shots could possibly be what is keeping the cancer away, but he still wants to stop doing them. I told him he could talk to the doctor about it, of course I am sure the doctor will tell him he can't stop them. He will be more likely to take it from the doctor than from mom.
Anyway, I will update as soon as I can get on a computer.
Take care,
Kathy and Brandon
Tuesday, July 24, 2007 9:31 PM CDT
NO CANCER!!!!!!!!
For the second procedure in a row they didn't see any cancer cells. This is just preliminary results from looking under the microscope, but God has definately been listening to all of our prayers. I really wish I knew what his plan is for Brandon, but I guess that is just part of life. As for now he is in remission and I am so thankful for that. You really don't know how much all of your prayers mean to us. There are so many people out there praying for Brandon, it is amazing.
As far as his counts go...they gave him platelets before his procedure because they were pretty low. Otherwise he is doing pretty good. He is still tired of course, but pretty good other than that.
Again, thank you so much to all of you who are lifting Brandon up in prayer. It really means so much to us.
God bless,
Kathy and Brandon
Monday, July 23, 2007 1:28 PM CDT
Well, tomorrow is the big day. We go in tomorrow morning and he is going to have his procedures. It makes me really nervous thinking about it. Please pray with us that things go well and the results are good ones.
God bless,
Kathy and Brandon
Tuesday, July 17, 2007 10:35 PM CDT
Brandon's appointment went well. He didn't have to have any transfusions. His platelets were pretty low, but I guess they thought he would last until his next appointment which is Tues. I guess if I notice any signs that he needs platelets I will take him in.
They are going to do a bone marrow and spinal procedure at his next appointment. Please pray for everything to go well and pray that the results are good. Depending on the results, we may start his immune therapy shots back up.
He is still really tired and doesn't have much energy. But otherwise he is doing pretty well. I guess that is it for now. Please keep Brandon in your prayers.
Take care,
Kathy and Brandon
Thursday, July 12, 2007 8:05 PM CDT
Well Brandon's appointment went pretty good Tues. It took all day long though. We went in a little before 10 am, they took his blood and we waited for his counts to come back. We went to an exam room and he was seen by his doctor and then by that time which was 11:30 his counts were back and we were told that they were good and he didn't need anything, so we thought we were outta there. Then we were told we had an ECHO scheduled at 2:00, so we left the hospital to go and find some lunch. Then we went back to the hospital for his ECHO. They decided they wanted to do an ECHO on his heart because that morning his poor little heart was pounding like crazy. You could see his chest move with every heart beat. When we were walking to cardiology Brandon's chest started hurting. I think it was just from getting too tired. We got a wheel chair to wheel him around in after his ECHO. We went back to the clinic and found out that we were supposed to have had an EKG also, so we had to go back and have that done. Everything looked good on both tests. He was still hurting though and didn't want to leave hurting, I think he was afraid we would have to come back. So the doctor told him that he could have something for pain, but we would have to stick around and see how he did. Brandon decided since I had his Oxicodone in the van he just wanted to leave and take that and if he didn't start feeling better we could go in. So we left and he did start feeling better so everything was fine. He has been doing good the rest of the week. We go back to the doctor Tues. I will let you all know how that goes.
God bless,
Kathy and Brandon
Monday, July 9, 2007 8:23 PM CDT
We got to go to the pool yesterday, but Brandon didn't feel like swimming. They have a media room inside the building in front of the pool so he stayed inside where it was cool and watched tv. Poor guy just doesn't have the energy to do much. He wanted to go with us though, so that is a positive. At least he didn't want to just stay home and lay in bed. Well, we have an appointment in the morning and I will let you all know how that goes.
Take care,
Kathy and Brandon
Saturday, July 7, 2007 12:41 AM CDT
Brandon's appointment went pretty good yesterday. His platelets were low, so he got a platelet transfusion. He is still very tired and doesn't have much energy. His ANC is good though, it is over 2000(anything under 500 in neutropenic). I am gonna try to get him to the pool and get him out of the house and his bed. We will see how that goes.
Almost all the viral tests that they sent off have come back negative. Both the HHV-6 and BK came back lower than the last time they took them so that is good. The skin biopsy hasn't come back yet, so we don't know if he has GVH. Well, I guess that is all for now.
Take care,
Kathy and Brandon
Wednesday, July 4, 2007 11:13 PM CDT
Well, great news...Brandon got discharged from the hospital today. He is doing really good. We got to grill chicken, salmon, and shrimp. That is what Brandon wanted when he got home. We got to watch fireworks out behind our house. We are so glad he got to come home for the 4th.
We go to clinic Friday to check counts. I guess that is about it for now. Happy 4th!!
God bless,
Kathy and Brandon
Sunday, July 1, 2007 12:23 AM CDT
Happy July:) Brandon is doing pretty good. He is still on a morphine pump, but he doesn't seem to be pushing his button as much.
They came and took a skin sample Friday to biopsy it to see if he has GVH on his skin. If he does then they think that the intestinal problem may be linked to GVH also. We won't know the results until probably Monday or Tuesday. They also sent off a lot of blood work for different tests.
He hasn't ran a fever in a couple of days, but tonight his temp has been low (around 95 degrees). They have tried putting an extra cover on him, changing thermometers, but it is still low. If it isn't one thing, it's another. They called the doc and they don't seem to be too concerned. He feels warm to the touch and his other vitals are good and he feels fine. They are just going to monitor him. Well, that is all for now.
Take care,
Kathy and Brandon
Thursday, June 28, 2007 3:14 PM CDT
Brandon has been doing better. They have his pain under control with a morphine pump. It has a constant low dose of morphine and he has a button that he can push when he needs it. His temp has gotten up to 104.2 a couple times in last few days. There for a couple days the tylenol wouldn't bring the fever down completely. He hasn't ran a fever since last night, so things are looking up. He is still hurting on his sides and I am beginning to wonder if it is related to the BK virus that we fought with back in Texas, because he is now complaining of pain when he urinates. The doc is supposed to come by and talk to me about my concerns soon. I will post another update after I talk with him.
Praising God in this storm,
Kathy and Brandon
Well, the doc came in earlier and said that the side pain could be because of the BK virus, so they are going to test his blood to see. Another concern that I had was, could what they seem to think is typhlitis actually be GVH(graft vs. host disease). We haven't been on anti-rejection meds since he relapsed. The doc said that it is possible that it is GVH, but they would have to go in with a scope and get a sample of his intestinal wall to find out which one it was for sure and they don't want to do that so they are just going to treat him for both. Both can have about the same symptoms. The doc also told me that the results from his last bone marrow show that he is 100 percent donor in his marrow, which is what we want. The transplant worked and is still in effect, the cancer is just very resiliant and keeps coming back. We started the next round of immune therapy Tues, but the doc put it on hold until we get things figured out with him. Well, I guess that is it for now. If I can think of anything else then I will add it later.
Monday, June 25, 2007 8:50 PM CDT
Well, looks like we won't be going home. Brandon started running a low fever early this morning and has been running one every 3 1/2 to 4 hours when the tylenol "runs out" and it seems to be getting worse. It wasn't even up to 101 this morning and about 20 to 30 min ago it was up to 102.6 and it had just hit the 4 hour mark for tylenol.
His blood pressure has been really good all day. I brought his blood pressure med from home in because the pharmacy here at the hospital doesn't carry the kind he was on for some reason(I thought that was a little odd, but oh well) anyway his blood pressure has been much better since.
Not sure when we will be getting out of here now, but whatever it takes to get him better. He hates being here and it shows. He has been very moody, shhh don't tell him I told you ;) He is still my sweet lil' man though and as handsome as ever!! Well, I guess that is about it for now.
Praising God in this storm,
Kathy and Brandon
Saturday, June 23, 2007 4:01 PM CDT
Well, Brandon is doing really good. They let him have jello, chicken or beef broth, popsicles, and juices yesterday. He did really good with that, so today they let him start eating like normal. They don't want him eating spicy foods, but he can have actual food now. He is very excited about that. He ate some frosted mini wheats for breakfast and had fish sticks and corn bread for lunch.
His blood pressure has been running high pretty much the entire time we have been here, but it seems to be getting worse. This isn't the first time we have had problems with his blood pressure. We have had him on blood pressure meds for a few months.
The doctor says that if he handles regular food well, then he may get out within a day or two. He is really homesick and wants to go home, so hopefully sooner rather than later. Well, I guess that is it for now. Pray hard that he gets to go home very soon and that his blood pressure calms down.
Take care,
Kathy and Brandon
Thursday, June 21, 2007 1:01 PM CDT
Hello everyone, I hope you all are doing well. Brandon is still in the hospital. He is doing pretty good though. He still can't eat anything and they are only letting him drink 8 to 12 ounces of clear liquid per day. They started him on TPN(total parenteral nutrition) which is basically all the vitamins and minerals his body needs through IV. They also have him on IV lipids, which is basically fats. He is doing much better today. Yesterday he was very irritable. I'm sure all of us would be if they weren't letting us eat. He was taking it out on everyone, but mainly his brother and sister when they were here. He hasn't been in any pain today, so that is a good thing. It looks like we are probably going to be in here for a few more days at least, because the doctor said that it would probably be another day or 2 before they let him eat.
Well, I guess that is it for now. I will keep you all up to date on how things go. Thank you to all of you that are out there thinking about us and praying for us, even if you don't leave a message for us; God hears you. Don't forget to check up on our friends and pray for them too.
Take care,
Kathy and Brandon
Monday, June 18, 2007 4:13 PM CDT
Well, Brandon got admitted last night. He was having abdominal pain and fever. They did an X-ray of his abdomen last night and then this afternoon they did a CT of his abdomen. The diagnosis of his pain is typhlitis, which is an inflammation of the intestine. He also has some blockage in his bowel. He has been in quite a bit of pain today. They have been giving him morphine to help with the pain. He isn't allowed to have anything to eat or drink for a few days to try to let his intestine heal. I'm sure we will be here for several days to try to get this inflammation under control.
His counts aren't that great either. He got platelets last night because his platelet count was 11(the normal is 150-400). Well, I guess that is all for now. I will try to update as I know more. Say prayers that we don't have to stay in very long. Thanks for all the messages that you have been leaving for him. He likes knowing that people think about him.
Take care and God bless,
Kathy and Brandon
Tuesday, June 12, 2007 12:19 PM CDT
Well, Brandon had an appointment today. Things were going pretty smoothly at first. They gave him his pre-meds and got him hooked up to his IV IG pretty early and then as soon as I went down to get him something to eat for lunch he starts having a reaction to it. I called to tell him what they had to eat and he sounded awful and the nurse told me he was having a reaction. I got back up stairs to find about 4 or 5 nurses around him and him shaking like crazy and crying. They gave him hydrocortizone and some more benadryl to help. They discontinued his IV IG until next visit. They went ahead and started his platelets. It took a little bit, but he finally got better, then he started running a temp and they threw around the idea of admitting him. His temp got better on its own so they let us go home around 3. Other than todays drama he has been doing pretty good. He is still pretty tired, but doing good.
On another note, there are a few people that need prayers. Our friend Elijah recently found out that his cancer is back. There is a link above to visit his website. Please pray for him and his family. Our friend Chase is about to end treatment. Pray that all goes well and that he is cured. Unfortunately a little boy lost his battle with this horrible monster. His name is John John. He had a transplant in San Antonio shortly after Brandon. You can visit his site at www.prayforjohnjohn.com Please pray for peace for this family during this time.
I guess that is all for now. Keep those prayers going. We will be having another bone marrow test within the next few weeks.
God bless,
Kathy and Brandon
Wednesday, June 6, 2007 11:36 PM CDT
Well, not much to tell this week. That is a good thing though. We went in Tues. and his platelets were pretty low so he got a transfusion of platelets. He is doing really good. Still pretty tired. We have been to the pool a few times, just trying to get him out of the house to have some fun and get him active. His counts are still a little low. That is it for now.
Take care and God bless,
Kathy and Brandon
CHECK OUT THE PHOTO GALLERY!!!
Thursday, May 31, 2007 9:09 PM CDT
Brandon is doing pretty good. His counts aren't so great. He had to get blood Tues. He is still really tired, but he is doing good otherwise. There really isn't much else to tell at this point. Keep praying!!
Take care,
Kathy and Brandon
Monday, May 21, 2007 10:07 PM CDT
Brandon is doing pretty good. He hasn't had very much energy though. He has been sleeping a lot. We are still doing his immune therapy shots. Thursday will be the last day of the 14 day course then he gets 2 weeks off and we begin another 14 day course then 2 weeks off and we do another bone marrow procedure. He has an appointment tomorrow morning, hopefully things will go well.
We went to Missouri to visit family over the weekend. We all had a blast. We had a BB-Q at my parents house out in the country and the kids rode around on my grandparents' golf cart and a couple of 4 wheelers. They also had a water balloon and water gun fight. We also got a new addition to our family this weekend. He is a black lab. He is very pretty and is really good with kids. He was dropped off out in the country at Ernie's parents house and they had him chained up because he was getting into their chickens.
Well that is pretty much all for now. I will try to update sooner next time:)
Take care,
Kathy and Brandon
Tuesday, May 8, 2007 10:13 PM CDT
Brandon had an appointment today. It went very well. They did a bone marrow procedure today. They didn't see any blasts in his marrow. We are technically in remission. The marrow is still a little hypocellular, it has some good cells that are producing really well. We are going to start immune therapy later this week or the first part of next week. He had to get blood today. His hemaglobin was pretty low. He is doing really good. We don't have to go back in until Monday or Tuesday.
If you haven't checked his page in a few days check out the photo album. Well, that is pretty much it for now. Everyone take care and thanks for all the prayers and thoughts going around for us. We really feel like they are helping.
God Bless,
Kathy and Brandon
Sunday, May 6, 2007 9:35 PM CDT
Well, we are pretty much settled in. Brandon is doing really well. He hasn't needed blood or platelets in over a week. We go back in Tuesday and I will update to let you all know how it went. There really isn't much else to tell.
There is a new photo of Brandon in the photo album. We got his hair to turn blue. It is a very pretty blue. Check it out!
Take care,
Kathy and Brandon
Thursday, April 26, 2007 2:10 PM CDT
Things are going pretty good. We get the keys to our house tomorrow. We are going to clean the house really good this weekend and the movers come to deliver our stuff Monday.
Brandon had an appointment yesterday. He had to have platelets, but other than that things were good. Not sure when we are going to do another bone marrow to see where we are cancer wise. Hopefully we will know something about that next week.
I updated the pictures in the photo album. Check 'em out. He has GREEN hair now.
Take care,
Kathy and Brandon
Sunday, April 22, 2007 5:44 PM CDT
Well, Brandon had an appt. Friday. Things went very well. He didn't need blood or platelets. His white count went up from .07 to .l7, his platelets were 52, his ANC went up from 29 to 114, his hemaglobin was 13. No more fevers. He is doing really good. We go back in tomorrow, I will let you all know how it goes.
Thanks for all your messages in his guestbook. We appreciate all your prayer.
Take care and God bless,
Kathy and Brandon
Thursday, April 19, 2007 4:26 PM CDT
Sorry I haven't updated his website much. We didn't have internet access for a few days. Well Brandon is doing pretty good. We gave him tylenol around the clock over the weekend and the first part of this week for fever. When he didn't get tylenol through the night he would wake up with a fever of 102-104. Cultures are still negative. He is just really neutropenic right now. His counts are still very low. His white cell count was 0.07 normal is 4.5-13, his platelets were 32 normal is 150-400, his hemaglobin was 7.8 normal is 13-16, red cells were 2.64 normal is 4.50-5.30. He got 3 hours of hydration, platelets and red cells yesterday in the clinic.
The movers came yesterday and packed up all our stuff and came and picked it up today. We should be getting our house Tues. Things are going pretty smoothly. Well, I will update more as things happen.
Take care,
Kathy and Brandon
P.S.- keep an eye on the photo album, I plan on updating the pics soon
Friday, April 13, 2007 9:48 PM CDT
Well, we arrived safely in Arkansas. It was a pretty uneventful trip. Brandon started running a fever, but we didn't get admitted. He is already on IV antibiotics. The doc knows Brandon doesn't want to be in the hospital. He told us that if he starts feeling bad to bring him in, otherwise just keep an eye on him. He is doing pretty good otherwise. He was acting just fine even though he had a fever. Well, I am pretty exhausted so I am gonna get off here and go to bed.
Take care,
Kathy and Brandon
Sunday, April 8, 2007 6:38 PM CDT
Well Brandon is doing really good. He has to be on IV and oral antibiotics for his infections. He is getting platelets about every other or every 2 days and he has to get red blood once or twice a week. He had his bone marrow Friday. The doc said the preliminary results looked good, but since his marrow doesn't have many cells in it because of the chemo they can't really tell much. They will know more tomorrow when they get the results from the biopsy. The doc seems to think that there is a good possibility that it will reach the goal of getting it below the 20% mark. He is doing really good as far as his mood. He is handling everything pretty well it seems.
The Easter bunny visited our house today and left some really great stuff for the kids. We hunted eggs in the house because it was pretty cold and muddy. Brandon decided this year that he was too old to hunt eggs. Happy Easter to all of you.
Me and the kids are going to be leaving sometime this week to move to Arkansas. The docs don't want Brandon around when the movers come to pack up our stuff because of dust and mold, so Ernie is going to stay behind and take care of all the moving stuff. We can't wait to get back to Arkansas to see all of our friends and the awesome nurses and doctors. Don't get me wrong, we love the docs and nurses here, but we will be glad to have our original ones back:)
Thanks to all of you who have left messages in his guest book. God bless all of you. Thanks so much for all your thoughts and prayers.
Take care,
Kathy and Brandon
Saturday, April 7, 2007 10:59 AM CDT
He is coming home today...I will update more later this evening. I just wanted to let you all know that things are going pretty good and that I am not ignoring his page, I just haven't been able to get online because the base hospital doesn't have internet in the rooms. Will update more tonight.
God bless,
Kathy and Brandon
Thursday, March 29, 2007 0:01 AM CDT
Brandon was admitted Tues night. He was having trouble with his blood pressure Tues when we were at the clinic. They decided to put him back on his blood pressure medication. They went ahead and gave him something to bring it down before we went home. They held us for about 30 minutes just to make sure it went down and he was OK. Everything went well so we went home. After we got home he wasn't feeling well. He had awful diarrhea and had the shakes. He had been having some mild diarrhea, but it got a lot worse after we got home. The shakes got worse so I took his blood pressure and it was pretty high. I felt him and he wasn't warm to the touch so I waited a lil' bit longer and took his blood pressure again and went ahead and took his temp. His blood pressure was very high and he had a temp of about 101.7, so I called the on call doc and he told us to come in. I took him in and they didn't have any open beds on the floor so they sent us to PICU. They took blood for cultures, CBC and chemistries. They started him on antibiotics, which they always do when these kids have fevers. He was really week, but his diarrhea seemed to be letting up. Well, we woke up really early Wed morning and he was septic. His blood pressure was really low. They put an IV in his hand and wanted to start an arterial line so they could watch his blood pressure more closely and use it for meds. Well, they tried to put it in twice and couldn't get it. Then his blood pressure started coming up. So they didn't have to put one in after all. They also came in later and said that his cultures were growing gram negative bacteria, which explained his sepsis. He is doing better now. His blood pressure is high again though, they gave him lasix to try to get a lil' of the fluid off him. Hopefully that will help with his blood pressure. Anyway, they don't have internet at the base hospital so I probably won't be able to update again for a few days. I'm not sure how long he will be admitted. Well, I guess that is all for now.
Take care,
Kathy and Brandon
Tuesday, March 27, 2007 4:22 PM CDT
Brandon's hospital stay went well. We went in Sat morning and he got his chemos, then after he got the second one we left for a lil' while and came home, ate, and spent time with family. Brandon wanted Gran to stay with him over night, I took them back to the hospital around 9 pm. He got the last of his chemo Sun morning and came home before noon. He is doing ok. He has really bad diarrhea right now. His blood pressure is high again so he is back on norvasc. We went in this morning and he had to have platelets. Everything else is pretty good. We still haven't got orders yet. Ernie said that they talked to the guy in assignments today and they said they signed off on it so now we are waiting for the guy above him to sign off on it I guess, so they said it may take another day or two. We will keep you all updated on how things go. As of right now we are set to go back in Fri, more than likely he will have to get platelets again. Anyway, talk to you all soon.
Take care,
Kathy and Brandon
Friday, March 23, 2007 10:25 PM CDT
Brandon is doing pretty good so far. He is still getting headaches with one of his chemos. The headache usually goes away after a tylenol and making the room dark and laying down. His chemos aren't making him sick. They give him zofran to help with nausea before the chemos, but I don't have to give him any here at home except for the first night.
His spirits are pretty good. The psychologist came in to meet him and talk to him today. She started asking him questions about what could happen and he told her he didn't want to talk about it. After she left I asked him if he would like to talk to someone about everything when we get to Little Rock and he said "there's nothing to talk about" and I told him that if he ever wants to talk about it I want him to be able to and not worry whether or not it will upset me. I can imagine that the thought of possibly losing this battle(I can't bring myself to say the D word)is pretty hard for him to really grasp seeing as he is doing really good right now. He feels and looks so healthy. Hell it is hard for me to believe that it's possible. He said something today that broke my heart...he said that he won't be able to have a family of his own. I wanted to bawl like a baby, but I didn't. I kept my composure. Sometimes it is so hard not to just break down and cry. I want to be strong for him.
Anyway, I guess that is pretty much all I have right now. Thanks for the entries in his guestbook. Thanks for the thoughts and prayers. If anyone knows any good Star Wars trivia questions, he would love it if you could ask him some. He loves that stuff.
Take care and God bless,
Kathy and Brandon
Wednesday, March 21, 2007 7:24 PM CDT
Well, today was pretty boring. We went to clinic first thing this morning around 8 a.m. and didn't get out of there until about 4:15-4:30. He did pretty good all day. He got a head ache for a lil' bit, but we laid down in his bed and took a nap together and that seemed to help. So far things are going pretty good. Will keep you all posted.
Kathy and Brandon
Tuesday, March 20, 2007 6:24 PM CDT
Hello everyone,
Brandon had his first treatment today and everything went pretty good. He is going to have to go in everyday this week. He will be admitted Sat and Sun. Sun will be his last chemo day. These chemos are pretty tough and will knock his system down pretty fast. We will have to go in a few days next week to see if he needs blood or platelets.
We have pretty much been told that it is almost definate that we will be moving to Little Rock AFB. Ernie faxed in the last of the paperwork today, so we are just waiting for orders now.
Well, there isn't much else to tell today. I will let you all know if anything interesting happens tomorrow.
Thank you for ALL the posts in his guestbook. We appreciate all the thoughts and prayers.
Take care,
Kathy and Brandon
Monday, March 19, 2007 10:02 PM CDT
Hello everyone,
We are all doing pretty good considering. All our spirits are pretty high. We talked to the doctor today and found out what plan we are gonna go with. As of last Weds. bone marrow he had 40% leukemia and 60% normal cells. We start chemo tomorrow and in two weeks they will do another bone marrow procedure to see how much leukemia is left after chemo. The goal is to get the leukemia to less than 20% hopefully completely gone. Then we will start leg shots of immune boosting meds. The goal is to let his immune system fight the cancer for as long as possible. We will do the immune boosting drugs for as long as possible. The doc said that normally they see bad side effects from these drugs after about 6 to 8 months(pulmonary fibrosis and that sort of stuff)since he has had total body radiation that could possibly make that worse or happen sooner...we don't really know. The doc says that there is a small chance of a cure with this study, so that is what we are praying for. But, we are still facing reality and reality is that we possibly have 6 to 12 months if things go well. I will keep you all up to date how Brandon's treatment goes. He will go in everyday this week and will be admitted Sat. and Sun. for chemo. We aren't sure what our schedule will be like next week. My parents are coming down later this week to spend some time with us.
We are doing the paperwork for a humanitarian move to Little Rock AFB. We should be moving in about 2 to 3 weeks. Well, I guess that is it for now. Thanks for all your prayers and well wishes.
Take care,
Kathy and Brandon
Friday, March 16, 2007 9:37 PM CDT
I really don't know what to say and I am sorry that I haven't kept this journal up to date, but until now there really wasn't much to tell. I will do my best at saying what needs to be said.
Wed. we went in for a bone marrow and spinal to see how things were going and if everything checked out OK then we were going to start going back to Wilford Hall(the base hospital). Brandon was looking forward to going back and seeing his doctors and nurses there. Well, yesterday we recieved a phone call from Dr. Grimley (Brandon's transplant doctor) and he informed us that Brandon's cancer is back in his marrow again. He isn't showing any signs or symptoms yet. I know, we all thought he was doing so well. This was definately a shocker to all of us. At this point there isn't much more they can do for him. We are going to try to go talk to Dr. Grimley Monday about our options. Pretty much all they can do at this point is try to extend what time he has left with us. The last 2 days have been....awful and exhausting. You never dream that this could happen to you. I have always had it in the back of my mind and I knew it was a possibility, I just had hope that it would never happen. He has had such a long and hard battle. We have fought this awful monster for over 5 years. We were really hoping and praying that this would be our cure. We are trying to make piece with it, but we are not giving up. We will battle on!! We are facing reality head on, but we just aren't giving up the fight.
I never could have imagined a day when I would have to sit my children down and have the talk that we had tonight. How do you tell a child there isn't much else they can do? How do you tell a 12 year old that he may only have months left to live? How do you tell a 10 year old and a 5 year old that their brother may not have much time left with us? How do you tell children that he may soon "Go be with God" as Savannah says. I have always been up front with him about what was going on and what could happen, so I wasn't going to stop being honest now.
We are greatful for the time we have had and the time we have left. We are praying for a miracle and would like for everyone to join in and pray with us. Thank you for all the prayers that have been said for us up to this point, but we need those prayers now more than ever. Keep us in your thoughts. We love you all so much.
We are in the process of trying to get the Air Force to move us closer to home(Missouri), we are in Texas right now. I don't want to go through this so far from home. Brandon needs to be close to family. I will keep you all updated.
God Bless,
Kathy and Brandon
I added new pics to the photo gallery!
Tuesday, February 13, 2007 11:01 AM CST
Brandon is doing really really good. He is gaining weight like a champ. His virus levels are going down now. They had leveled out for a few weeks, so it is a very good sign that they are now going down. We go back to the clinic Thursday. He is loving school. That is pretty much all there is to tell. Except for all of us being in school, things are pretty boring now; which is good and long overdue. We are so glad things have finally slowed down.
Take care,
Kathy and Brandon
Sunday, February 4, 2007 10:50 PM CST
Well, Brandon is doing great. He is doing well in school and loving it. He is going to the clinic about once a week now and they are trying to get us to every 2 weeks. Hopefully things will work out as planned. Well, not much else to report. Everyone take care.
Kathy and Brandon
Saturday, January 13, 2007 8:44 PM CST
Well, things are about the same. His virus levels were about the same as they were last visit, so he isn't on home IV meds. We go back Monday and they will check his levels again. He is still loving school. He is doing great. He is gaining weight like a champ. He looks so much more healthy. We have an appointment Monday and I will try to remember to update the site to let you all know how it goes.
Take care,
Kathy and Brandon
Tuesday, January 2, 2007 10:18 PM CST
Well, it has been a lot longer than I thought since I last updated Brandon's page. He is doing pretty good. He starts school tomorrow. He is so excited. His counts are getting better slowly but surely. They took his port needle out today and didn't re-access it..they are giving him a break or hopefully completely stopping the home IV meds. The poor kid is just so excited to not be accessed 24/7 for the first time in months.
We went home for the Christmas holiday. It was very nice to see everyone. We got to stay for almost 2 weeks. We were ready to get back home though. It is nice to be back in our own beds. We really enjoyed our visit though. We got to see our family and some friends in Missouri and we visited some of our friends in Arkansas. We also got to see some of the nurses and doctors that used to take care of Brandon at Arkansas Childrens. We got to see a couple of our friends from the hospital too. We enjoyed seeing all of you so much. We miss you all.
Well, it is late so I am going to end this and start getting ready for bed. I hope you all had a wonderful Christmas and a happy New Year.
Take care and God bless,
Kathy and Brandon
Thursday, December 7, 2006 10:13 AM CST
Things are still about the same. His counts are better. His WBC is 2.3 and his platelets are 93. He is still going 2 to 3 days a week. We got a break this week and had to only come in 2 days. Who knows what it will be next week though. We come in around 8:45 and are in the clinic until almost 2:00 on most days. Sometimes longer, just depending on what is going on. He is still on home IV meds, once a day at the moment, but again who knows when that will change lol.
We are all looking forward to going home for Christmas. It has been almost 11 months since we have been to Missouri and 10 months since we were in Arkansas and we miss everyone so much. Hopefully next year if things go well we will be able to come to visit during the summer too.
Well, I hope you are all doing well.
Take care and God bless,
Kathy and Brandon
Maegan he got that one right:)
Monday, November 27, 2006 9:20 AM CST
Hello everyone, I hope you all had a wonderful holiday. We had a pretty good one. They have a program on base that allows you to sponsor 2 airmen from basic training for Thanksgiving. They get to come to your home and enjoy the holiday with you and your family. They seemed to enjoy their time away from boot camp. We let them use our cell phones to call their family and friends and we let them use our computers. Then while we were waiting on the turkey to cook I took them to Wal-Mart to get a few things. It was pretty funny watching them in a store after 6 weeks of being restricted on what they ate and being closed off from the rest of the world. They were like kids in a candy store lol. They headed straight to the candy and snack isles. I think we will definately do it again next year.
As far as Brandon goes, he is doing pretty good. Things are about the same. We are going in 3 days a week for cydofovir which takes pretty much all day and we are still on IV antibiotics at home as well. One of these days we will kick this viruses butt and be able to get back to somewhat of a normal life. Until then we will just keep kickin' :) The kids are really looking forward to going home for Christmas. They are counting down the days. Speaking of Christmas we are pretty much finished with our shopping. We got some pretty good deals on Black Friday and got everything that we were wanting to get for them. All we need to get now is lil' stocking stuffer type things.
On another note, our poor lil' puppy had a bad weekend. For those who don't know, we have a 2 month old pomeranian puppy named Tinkerbell that we got at the Light the Night walk about a month ago. Well, Saturday a friends 2 girls were over at our house playing with the boys. The 9 year old was holding Tinkerbell and I'm not really sure what happened, but somehow either Tinkerbell jumped out of her arms or the girl accidentally dropped her and Tinkerbell broke her right front leg. So needless to say Saturday night was pretty eventful at our house. I took her into the emergency vet and got her all fixed up. She now has a tiny lil' cast like thing on her lil' leg. She looks so pitiful. I just feel so bad for her. Needless to say it wasn't cheap, but she is worth it. She is learning to hobble around. We were trying to crate/housetrain her, but now we can't put her in the crate because the cast isn't supposed to get dirty or wet. So we have gated off an area for her and she is doing really good using the puppy pads. Well, I guess that is pretty much it for now.
Take care and God bless,
Kathy and Brandon
Saturday, November 18, 2006 0:31 AM CST
Well, I am about to go to bed and just wanted to give a quick update on Brandon. Things haven't really changed a lot. We are still having trouble with HHV-6. The level went up from the last time so they changed us back to 3 times a day on his home IV antibiotics until Monday. They have been giving him GMCSF IV meds to up his white count to help heal his sore bottom. He has started experiencing pain as one of the side effects. It was pretty bad yesterday. He was in tears. They gave him tylenol with codeine then morphine then motrin and finally the motrin helped. Anyway, I will update more as we know more.
Take care,
Kathy and Brandon
Thursday, November 9, 2006 5:11 PM CST
Ok so it has been almost 2 weeks since I have updated. Things are about the same I guess. We are now doing the IV antibiotics only once a day. His counts are still awful, but I think they are trying to come up. If we can ever beat this HHV-6 then I think things will get a lot better. We are still going in 3 days a week. Other than that I really don't have anything else to post on here. He is doing pretty good considering. He is still having pain when he goes to the bathroom. We are hoping that his counts will help with that. Well, I hope things are going well with all of you. Please keep those prayers going. We really appreciate it.
Take care and God bless,
Kathy and Brandon
Sunday, October 29, 2006 1:29 PM CST
Well, we got out of the hospital Friday. They did his marrow and spinal and there were no cancer cells in either and there was no HHV-6 in his spinal fluid, but it is in his marrow which we knew because it is in his blood. They did an MRI of his brain, because they noticed that he was being very persistent when he wanted something and seemed to not have much self control in being patient. The doc said that he could be showing some symptoms from chemo, radiation, or the HHV-6 affecting his brain. The next morning the doctor said that he could see some places that have been damaged a little, but there really isn't any way to know what affected it. The doc said that he didn't see any ongoing inflamation. There is no real way to know if it will fix itself or if it is permanent, so we will just have to wait and see. No matter what at least he is still with us and that is the most important thing. Well, we are doing good otherwise. He is on home IV antibiotics 6 times a day. We go in tomorrow, hopefully the meds are doing their job. Well, I will let you know how things go.
Take care,
Kathy and Brandon
Tuesday, October 24, 2006 1:37 PM CDT
Well, Brandon got admitted yesterday. He has been having some pain when he has a bowel movement. There is nothing wrong on the outside so he has something going on inside. The pain has been getting even worse and he is still having frequent BM's. They did a CT yesterday to see if there was an abcess..not sure if I spelled that right. Anyway, the CT showed a little inflamation but nothing else. He also has an ear infection so they have him on 2 antibiotics to clear up the rectal inflamation and the ear infection.
They are going to do a CT of his sinuses today because the doc said he has some white spots on his sinuses that he wants to check out.
They are going to do a bone marrow and spinal tomorrow. His counts have come up some but not as much as they would like. I just really don't know what to think at this point. I try not to worry because honestly what good would it do, but it is hard not to when these things just keep on hitting us and won't give up. Anyway, I'm not going to have a pity party and we are just going to keep our head high and stay positive and fight this out and let the docs do what they need to do. I will let you all know more when we find out more. Keep those prayers going!!
Take care,
Kathy and Brandon
Saturday, October 21, 2006 4:40 PM CDT
Ok so I am awful at updating this...sorry I thought I had already updated it. Well we found out Wed. that Brandon's BK virus is back so we had to go in and start the IV antibiotics 3 times a week. Hopefully not too long though. We went in Fri. and we go back Mon. and if the IV antibiotics have knocked the level down enough they are going to do away with the IV antibiotics and put him back on the oral meds. Well we are about to leave to go to the Light the Night walk. I will try to update again about the walk. I am also going to try to post some pics.
Take care and God bless,
Kathy and Brandon
Thursday, October 12, 2006 3:53 PM CDT
Hello Everyone, Brandon is doing pretty good. We went to the doctor Mond. and everything went well. His potassium was low so they gave him a fluid bolus to get it back up and they told us to start his oral potassium back up. His counts were about the same as they were at the last appointment...WBC 1.9 platelets 25.
I posted a couple new pics in the photo album. One of him with his shirt off so you can see how skinny he has gotten and one of him, Savannah and our dog Rufus. They are so cute. Jordan was at school so he wasn't around for the picture.
The Light the Night Walk is coming up very soon. Just a lil' over a week. We passed the $400 mark on our donation page. If any of you still want to donate the link to the webpage is above R2-D2:) Thank you to all of those who have donated so far...we greatly appreciate you donating to such a great cause. Well, I hope you all have a great night.
Take care and God bless,
Kathy and Brandon
Thursday, October 5, 2006 10:24 PM CDT
Well, hello everyone! Things aren't bad here. We were told Tues. that we didn't have to go back until this coming Mon. But we were told that he would have to have a bone marrow and spinal procedure because his counts aren't recovering and they weren't sure why. His WBC count was 1.6 and his platelets were 25 and normal counts are WBC 4.5-13 and platelets 140-400. The HHV-6 tests were negative a couple times in a row so we didn't know why his counts weren't recovering. Then I received a call from the nurse Wed. saying the HHV-6 was back, which is why his counts aren't doing well. So they canceled the procedures and started him back on the vangancyclovir to get rid of the virus again.
He is also having some problems with lactose intolerance which can be common after transplant. He has been in the bathroom a lot lately which isn't helping him gain any weight. He is so skinny, he can actually wear some of his brothers shorts and those of you that know both of them know this is not normal. I will try to take a picture and post it. I have been calling him skinny mini lol. In all seriousness though, I hate seeing him so thin. He has always been so solid and we normally have trouble getting pants that will fit him in the waist without them being a mile long, we usually have to get huskies. So we had to get him to lactaid tabs to take before eating or drinking any dairy products. I got him some silk milk but I don't think he is real crazy about it. I guess because it is soy milk, because he doesn't mind the lactaid milk. I just happened to get a pretty good price on the silk and thought we could try it...guess it wasn't a good move:)
On a lighter note he made a 2nd wish through the Marty Lions Foundation and it was approved. He has been waiting on this since right after he relapsed in Nov. One of the case workers back in Arkansas told him he could possibly get a second wish but with Katrina most of the places that grant wishes had depleated their funds. So I got an email from her a couple months ago saying that she may have found someone to do a wish for him. She suggested trying the Marty Lions Foundation. So we filled out the paper work and sent it in right after she sent it to us and we didn't hear much after that and he pestered Jen the Childlife girl at Methodist trying to get info because she faxed the paperwork for us. Well about 2 weeks ago his doc told him that the Foundation had contacted him to get some info and that his wish would be granted. Well it came yesterday. He wished for a PSP and some games and movies for it. They went all out for it. They sent him the PSP which came with a game and a movie then they sent him a couple more games and movies and a $100 gift card to Toys-R-Us to get some more. He is such a sweetie and gave the gift card to Jordan so he could put it towards a PSP of his own. So we are going this weekend to get it. He has $35 of allowance saved and we are gonna pay the rest and needless to say he isn't gonna get allowance for a while lol.
Anyway, I guess that is about it for now.
Take care and God bless,
Kathy and Brandon
Tuesday, September 26, 2006 3:29 PM CDT
Well, Brandon had to be admitted Friday night. He was running a fever of 102.7 so I had to take him in. They kept him until Monday afternoon. They gave him fluids and antibiotics and did blood cultures and cbc's and really couldn't find anything. He is doing very well now though. We don't go back to clinic until Friday and he should get to swim this weekend woohoo:) Anyway, it was a pretty boring weekend..I guess that is pretty much all there is to tell. I will let you all know how Friday goes.
Take care,
Kathy and Brandon
Thursday, September 21, 2006 11:35 PM CDT
Well, Brandon had surgery today. They took out his line and gave him a port. He is so glad to have a port back. He can't wait to go swimming. He did very well. It was an outpatient procedure. We went in around 8 am and got out of there by 2 pm. Everything went very well, they tried to put the port on his right side so they could start on a fresh side but couldn't get it to thread right so they had to put it on the left side. He was a lil' sore this evening but otherwise he has done great. The doc said that his blood is negative for HHV-6 woohoo. That means we don't have to go in 3 times a week for antibiotics anymore. We don't go back in until Monday. I will let you all know how things go. Well, I hope everyone has a good weekend.
Take care,
Kathy and Brandon
Friday, September 15, 2006 10:23 AM CDT
Ok so I have gotten really bad at updating this site. But, Brandon is doing pretty good. He has been outside playing with friend quite a bit lately. Last Sunday I went to lunch with a friend and he went out while I was gone and forgot to put on a hat and sunscreen and got sunburned. The poor kid got a lecture from mom and the docs. The sunburn wasn't too bad though. Just made his face a lil' pink.
They are having trouble getting control of his viruses. We are still going into the clinic 3 days a week for about 5 hours each day for his antibiotics plus now he is on 2 oral antibiotics at home. Hopefully they can get control of these viruses soon.
He is scheduled for surgery next Thurs to get his port back and have his line removed. He is very excited, he can't wait to swim again.
Jordan had his first football game last Saturday and did so well. They took turns playing offense and defense. He got an interception once and knocked a few away so the other team couldn't get them. He also carried the ball almost 40 yards before getting his flag belt pulled...if it weren't for that one kid he would have took it all the way. They won the game by about 40 points or so.
Well, I guess that is all for now. Everyone take care.
God bless,
Kathy and Brandon
Oh one more thing..our Light the Night Walk for the Leukemia and Lymphoma Society is only a little over a month away so if you want to make a donation please visit our donation page. So far we have received $225 of our $1000 goal. I am very positive about reaching our goal..we are almost 25 percent of the way there. Even if $5 is all you can afford it is enough to help. Please take time to visit our donation page.
DID YOU KNOW:
* Every five minutes, someone in this country is diagnosed with blood cancer
* Every ten minutes, someone loses the fight
* Leukemia causes more deaths than any other cancer among children
* Lymphomas are the most common blood cancers
* The myeloma survival rate is only 32 percent
Thursday, September 7, 2006 9:20 AM CDT
Sorry I haven't updated his site in a while...I have just been lazy. He is doing very well. We are still going in about 3 times a week for his cidofovir to treat the 2 viruses that he has. His GVH is doing better since they adjusted his anti-rejection meds. We only have 2 visits this week due to the holiday so it gives us a little bit of a break this week I guess. He has gotten so thin within the last month to 2 months. His shorts actually ride low on his waist so that the band of his underwear shows, he was asking me for a belt the other day. He has always been pretty solid so this is a first...well actually probably the second time it has happened counting when he was originally diagnosed. His appetite seems to be going back to normal so hopefully he will start gaining some weight back. Anyway, things are better today...I'm not frustrated or upset, so that is a good thing. Of course the day isn't over yet and we are in clinic right now, so I better not speak too soon:) Well, I guess that is all for now. I will update with any new info as we get it.
Take care and God bless,
Kathy and Brandon
Saturday, September 2, 2006 12:00 AM CDT
Well, Brandon was discharged from the hospital Thurs. afternoon. I think they have decided that the bug bite looking spots are just GVH that was inflamed. They have gone down quite a bit. We went back in on Friday and got his cidofovir med for the HHV-6 and BK viruses. His prograf and sirolimus (the anti-rejection meds) levels were high so we had to hold those meds and go back in this morning to have them checked. Anyway, we don't go back until Tuesday, unless his levels were high again today then we may have to go back tomorrow morning. I will let you all know how things go.
Take care,
Kathy and Brandon
Wednesday, August 30, 2006 10:00 AM CDT
Well, they are not doing his bone marrow and spinal prodedure today. Monday when we came in he had what looked like a bug bite on his elbow of his right arm, he said that he thought he bumped it on something. I didn't think anything about it until last night when I saw it..it had went from looking like a bug bite to the size of a golf ball, red, and warm to the touch. Since we were coming to clinic today I figured I would just wait and show the doc then. Well, the nurse came in to check him over and I showed her his elbow and he has a couple more bumps that look like bug bites now...so she went and got the doc and he looked at them and decided that we need to be admitted. They want to do a full CT with contrast on him today and run blood tests and start him on antibiotics and try to figure out what is going on with him. I am so frustrated with thinking we are over one bump and then we hit another one. We are just so ready for all of this to be over so we can get back to what we consider a normal life. Well, it looks like they are gonna do the bone marrow and spinal after all. They decided they don't need to do oral contrast for the CT so they can go ahead and sedate him and do the procedures. I know we are still very lucky and that the things we are dealing with are pretty minor considering how bad things could be, but we have been dealing with all of this for almost 5 years and we are just so ready for it to all be over with already. I know it could be worse and we are so lucky to even still have him around, don't get me wrong, but I guess I just need to vent a little bit because I am just tired and frustrated right now. I try to be positive and not dwell on things, but sometimes it is just so hard. Well, I guess I am done with my little pitty party. I will keep you all updated on what we find out and when we get discharged and all that. Keep those prayers going for us please.
Take care and God bless,
Kathy and Brandon
Update:
Well, the doc said that his spinal fluid is clear and so was the CT so that is good. They are sending his spinal fluid and marrow off to have it tested to see how much if any HHV-6 is still there. He now has blood in his stool so I guess it is a good thing we have been admitted. Anyway, I will keep the site updated as I know more.
Friday, August 25, 2006 1:21 PM CDT
Well, Brandon has been doing so much better. We haven't had to use any pain meds at home. His counts are doing good too. On Wed. his white cell count was 4.6 and his platelets were in the 90s and today his white cell count is 6.3 and platelets are 96. The normal ranges for both counts are WBC: 4,500 - 13,500 or 4.5 - 13.5 Platelets: 140,000 - 400,000 or 140 - 400. His white cell count is with-in normal range now woo hoo:).
Today is a long appointment day. We came in to get his cidofovir IV med for the HHV-6 and BK viruses and they informed us we were due for his IVIG (IV immunoglobulins) and that we would be getting that today too and they can't give them together..fun fun!! He just had a reaction (achey, chills, and fever) to the IVIG because they chose to wait to see if he was gonna have a reaction. He has had reactions a couple times before because they didn't give pre-meds, and it just makes him so uncomfortable and he dreads getting it. He was almost in tears and saying that he hates getting IVIG. I told him from now on that he is the boss to a certain extent and to let them know that he wants the pre-meds. This wait and see crap just isn't working for us. I just don't get why you would want to put a child who has been through so much as it is through more crap when you could just give them a dose of tylenol and benadryl before hand. Anyway, sorry I'm a little frustrated. Other than that he is doing really good. He is napping now that they gave him some benadryl, tylenol, and steroid.
They are going to do a bone marrow and spinal procedure next Wed. to check them both for HHV-6 level. I will let you all know how it goes.
Anyway, I guess that is all for now. I will keep you all posted on how he is doing. Thank you all for the continued prayers and posts.
Delores- I forgot to respond to your question about Christmas...yes we plan on coming to visit around Christmas time. Whenever we come we plan on stopping in at Children's to see everyone. See you then!
Maegan- He missed that one.
Take care,
Kathy and Brandon
Sunday, August 20, 2006 4:59 PM CDT
Well, we are home now woohoo. Brandon is doing so much better now that he got hydrated. We have to go in tomorrow for his IV antibiotic. So I will let you all know how things go.
Take care,
Kathy and Brandon
Saturday, August 19, 2006 6:06 PM CDT
Well, Brandon had to be admitted Friday. The tylenol 3 just wasn't cutting it with his pain. He was also dehydrated. So they put him on a pain pump to help with the pain. He was getting 1 mg of morphine per hour and had a button but he never pushed his button. The hydration did a lot for his pain. So they took him off the pain pump a little bit ago and we are gonna try tylenol 3 for his pain if he needs it. Hopefully he won't need it. If things go well tonight we will get to go home tomorrow. He will have to drink lots of fluids when we do go home. The med they have him on is hard on the kidneys so he will HAVE to stay hydrated...if not we will end up right back in here.
We are still so lucky to be doing so well. His counts are still going up so thats a good thing. I will let you all know when we get to go home. Thanks to all of you for leaving messages for him and thanks for the continued prayers that you all say for him, they are greatly appreciated.
Take care,
Kathy and Brandon
Thursday, August 17, 2006 10:35 PM CDT
Well, a lot has happened this week...we have been to the clinic every day this week. Brandon has some new funky BK virus. It is another one of those things everyone has in their system that lays dormant until the immune system is knocked down. It is sort of like a bladder infection, but he has had a lot of pain with it. More than just a regular bladder infection. He also has blood in his urine. So we have to go to the clinic 3 days a week to get an IV med to take care of it. This was the problem that he had Friday night. Anyway, I need to get to bed so I will update more later.
Take care,
Kathy and Brandon
Sunday, August 13, 2006 12:29 AM CDT
Well, Brandon is doing good. We had to take him in Friday night. He was having pain in his side and wasn't feeling well. At first he said it felt like a catch, but then it got worse and he started vomiting. So we took him to Methodist. They took some blood for labs and gave him some morphine for the pain. He took a nap and when he woke up he felt so much better. They got a urine sample and did a CT of his lower abdomen and the doc said that his kidneys and gallbladder looked fine no stones or anything. They said that his intestine looked like there was some pockets of air and that the contrast probably pushed it on through. We took him back the next morning for more blood work and more fluids. He is doing great now. His counts went up from Monday. His platelets went up from 55 to 80 and his white count went up from 2.6 to 3.2. I am so relieved that his counts are starting to go up now that we have the HHV-6 under control. Anyway, we go back Monday and I will let you all know how things go.
Take care,
Kathy and Brandon
Tuesday, August 8, 2006 5:02 PM CDT
Day 90 We are almost at day 100 which is when they say we can work our way back to a somewhat normal life. He will be able to eat taco bell and go to wal-mart again which is his main concern lol. For the past 3 months we haven't taken him to wal-mart or other stores except on 2 occasions when I took them to blockbuster when no one else was there and the other night we took them to the BX around closing time so not many people were there, both times to get new games for their x-box with their allowance. It is really funny how aware you become of a sneeze or cough around you when you have an immune suppressed kid. Even when he isn't with me, because we don't need to get sick either. You become so paranoid of everyone around you.
Anyway, Brandon's appointment from yesterday went well. His platelets are up to 55 from Fri. at 51. His white cells are at 2.7 from 2.6. The nurse called today and said that the IV meds are doing its job and that Thursday we can go from 3 times a day to 1 time a day. They also said we didn't have to come back until Monday. Woohoo once a week visits.
We were at clinic pretty much all day yesterday because he had to get pentamadine which is a med he gets about once a month instead of taking bactrim which is used to prevent infection. Bactrim hinders his counts so they don't want to put him on it until his counts go up some more. He also had to get potassium because his was low. They went ahead and put him on oral potassium to help with that. The anti-rejection meds he is on depleat his potassium. Well, I guess that is all for now. He is doing so well. Thanks for keeping him in your prayers, they are doing wonders so keep them going.
Take care,
Kathy and Brandon
Friday, August 4, 2006 6:44 PM CDT
Brandon's appointment went well yesterday. It turns out that he does have the HHV-6 in his spinal fluid. They said that the level wasn't as high in his spinal fluid as it was in his blood and marrow. They had already changed him from doing the IV meds once a day to three times a day so they said there wasn't any changes to be made. I guess it wasn't high enough to make him have major symtoms from it...although since they have brought it up I have noticed maybe some little things that I just waved off as him just not paying attention. Anyway, it seems like the IV meds may be working because his white count went up from 1.8 on Monday to 2.6 yesterday and his platelet count stayed at 51 from Monday. His potassium was a little bit low, but nothing we can't take care of at home by him drinking juice or eating high potassium foods.
His hair is starting to come back in a little bit. He says that he hopes that the other kids who are going through what he is going through are doing as well as he is. We are really lucky that he is doing so well. This has been our only real bump in the road since transplant so that is very good.
Well I guess that is all for now. We go back Monday so I will let you all know how that goes. I almost forgot..they got back some of the results from his marrow and said that his marrow is 91% donor and 9% him. They said that is pretty much what they were expecting. His blood is still 100% donor. It is normal for there to be a little bit of his cells in the marrow because the lining of the bone still has some of his cells on it so when they go through the bone to get the marrow they get some of the old cells. Well, everyone take care.
God Bless,
Kathy and Brandon
Monday, July 31, 2006 11:36 PM CDT
Alright...sorry I didn't update after Friday's appointment. We had a lot going on. When we got into the parking lot of the hospital Friday they called me on my cell and asked if Brandon had eaten anything and I told them no but he had drank some juice. Well it turns out that Brandon has something called HHV-6 in his marrow and they wanted to make sure that it wasn't in his spinal fluid too. So we went in and they did a spinal later that afternoon. The doc said he didn't figure it is in his spinal fluid because he would be experiencing symtoms like acting strange, fever and others that he isn't showing any signs of. We haven't gotten the results back from that yet. I will let you know when we do. Going back to HHV-6...i'm sure you are wondering what it is. Well it is human herpes virus 6 which everyone has in their system it just lays dormant in our bodies unless our immune systems are low enough for it to rare its ugly head. Anyway, they have put him on home IV antibiotics to get it back into its dormant state. The good thing about this finding is that now we have an explanation of why his counts aren't doing better than what they are because this can supress counts. So hopefully once they get this under control his counts will start going up and looking better. He is still doing really good though. He did have to have platelets again on Friday. He went in today but unfortunately I am in Little Rock, AR for a court date for a wreck that I had in 2000 (we won woohoo) so I wasn't there for his appointment, but dad says everything went well and the docs said his counts were good and he didn't need anything. I will be heading back to San Antonio tomorrow morning, so I will be back for his Thursday appointment and I will let you all know how that goes.
Maegan he got that one right without me even giving him any answers to choose from...boy he's good:)
Well I am gonna get off here and go to bed. We had a very long day in court...didn't get out of there until after 7 p.m. But the outcome was a very good one so I am not complaining. I had an awesome lawyer. God bless you all.
Take care,
Kathy and Brandon
Wednesday, July 26, 2006 9:59 PM CDT
Brandon's procedure went well today. They are going to be running 3 types of testing on the marrow that they aspirated. One of the results we should find out tomorrow...but the other two will take a week for one and about two weeks for the other because they have to be sent off. As soon as we find out the results from the tests I will update his site with the results.
He is doing pretty good. His platelets are 29, white count is 1.5. They lowered his prograf to 0.5 mg 2 times a day on Monday and today they told us to cut it down to once a day because his level was still too high. Well, I guess that is all for now. I will let you all know how Friday's appointment goes.
Maegan, he didn't get the first question but he did get the second one.
Everyone take care,
Kathy and Brandon
Monday, July 24, 2006 2:11 PM CDT
We are at clinic and everything is going pretty well. Today is a long clinic day because he has to get IV immunoglobulins to help boost his immune system. All the transplant patients have to get them every 3 weeks for a while after transplant. His counts are pretty good today. His platelets are 56, his white count is 2.1 or 2100, his red count is 4.04 which is in the normal range of 4.00-5.20, and his hemaglobin is good as usual at 12.4 which is in the normal range of 11.0-16.0. Hopefully his body will hold steady with the platelets that they gave him Friday.
We come back on Wed. for a marrow draw. They want to check his marrow and see how much is donor and how much is him. I think there is a little concern with his white count not going up any faster than what it is. If things don't look the way they want they may have to adjust his anti-rejection meds to try to help things along. They usually don't do a marrow until day 100 and we are at day 75, but they want to check things out here at Methodist before they start sending us back to the base clinic. Of coarse as much as I hate to admit it I am a little on edge, but who wouldn't be. It is very scarey going into procedures. I know he is doing really good and hopefully I am worrying for nothing, but I would rather go into it prepared for anything than to be surprised, which has happened to us before.
Anyway, please pray that everything goes well for us on Wed. I am not sure how long it takes to get the results of the tests that they have to do, probably at least a week. I will let you all know how the procedure goes.
Take care,
Kathy and Brandon
P.S.- I posted a couple new pics in the photo gallery.
Saturday, July 22, 2006 11:25 AM CDT
Well Thursdays appointment went good. His platelets were 22 and his white count was 2.0 or 2000. His chemistries were good so we got to go home. They called us later that day and said that his prograf (antirejection med) level was a little high so they told me not to give it that night or the next morning and to bring him in to have blood drawn to do another level. They adjusted his prograf to 1 mg a.m. and 0.5 mg p.m. Well they also went ahead and did another CBC to check his counts so we waited just in case and sure enough he needed platelets. The first time in about 3 and 1/2 to 4 weeks.
Anyway, he is doing really good other than that. His red blood count is awesome, it is almost at a normal level and his hemaglobin has been at a normal level for a couple weeks.
Well I guess that is pretty much all I have to report right now. I will update again after Monday's appointment.
Take care,
Kathy and Brandon
Monday, July 17, 2006 10:27 PM CDT
Brandon's appointment went great. His platelets went up from Fri. appointment. Fri. they were 21 today they were 24. They went ahead and lowered his steroids again so he is no longer on steroids. Hopefully after he is off them for a little bit they will be able to take him off the blood pressure meds. They changed us to 2 day a week visits now, we don't go back until Thurs. I guess that is all I have to report. He is doing really really great.
Maegan he got that one right. He is on a major winning streak.
Well I will update again after his appointment Thurs.
God bless,
Kathy and Brandon
Saturday, July 15, 2006 9:29 AM CDT
Brandon's appointment went well yesterday. He didn't have to get platelets. It has been almost 3 weeks since he has had to get platelets. He is doing so well. You never know what to expect going into something like this..all kids are different. I didn't realize how well he would be doing at this point. I don't think the doctors expected him to be doing as well as what he is. We are very lucky. He is a tough little boy, such a trooper.
Well I guess that is all for today. Don't forget to pray for Kaitlyn's family.
Take care and God bless,
Kathy and Brandon
Wednesday, July 12, 2006 5:45 PM CDT
I am very sad to say that our friend Kaitlyn lost her fight and earned her beautiful wings yesterday morning. Please please keep this family in your prayers during this very difficult time.
It is so hard to see these kids go through all of the things that they have to go through. I know how lucky we are to still have Brandon with us, and I do not take that for granted. He has had a long and tough journey, but he is doing good. Today's appointment went well. His platelets are still holding on, they were 28 today so we go back Fri. and then next week we get to go back to 2 days a week. His white count is still holding on at 1.9 or 1900. Well, I guess that is it for today. Don't forget to keep Kaitlyn's family in your prayers.
Take care,
Kathy and Brandon
Tuesday, July 11, 2006 10:18 AM CDT
Sorry about not updating Brandon's site after Fri. appointment. For some reason I thought I did. Anyway, his appointment went well Fri. He didn't need anything. His platelet were 25 so they are still holding on. I just wish they would start going up but I am satisfied with our progress. He had his appointment Mon and his platelets were 25 again so he didn't get anything. They lowered his steroid again..so now he is on a morning dose of 5 mg and that is it. He is doing really really well. His GVH is very minimal so his body is tollerating it well. His white count on Fri. was 1.8 or 1800. He still isn't allowed to go anywhere, but that isn't too big of an issue. I guess that is all I have to update on for now.
Maegan he got that one right:)
Well I hope you are all doing as well as we are. We will update again after Wed. appointment.
God bless,
Kathy and Brandon
Thursday, July 6, 2006 3:38 PM CDT
Well, Brandon's Wed. appointment went great. His platelets are holding on. They went up from 24 on Mon. to 27 on Wed. So we didn't have to stick around for anything..just had blood work done and waited for the results and got to come home. He is doing really really good. His white count went from 1.3 on Mon. to 2.5 on Wed. and his hemoglobin was hovering around 11 and on Wed. it was up to 12.2. So all his levels are pretty good. Now if the platelets and white count will get in normal range everything will be great. That will come in time...no rush...as Kaitlyn's mom says, "slow and steady wins the race" :)
We didn't do a lot for the 4th. We BBQed in between the rain. Then around 9 we went out to do a few lil' pull and pop fireworks. We can't do real fireworks on base. The kids enjoyed what lil' we got to do. We didn't go and watch any fireworks though, because we didn't want to take Brandon and Brennen around any other people, plus it was storming.
Brennen and his family have been spending a lot of time with us so they don't go stir crazy in their lil' hotel room. The kids love it. So do I..it gives me an adult to talk to which is nice since we really can't go anywhere besides home and the clinic.
I guess that is all for now. I will keep everyone informed on how Fri. appointment goes. I hope you all had a wonderful 4th.
Take care,
Kathy and Brandon
Monday, July 3, 2006 6:59 PM CDT
Brandon is still making his own platelets. They were low though...they were 24 so they want us to come back Wed. to check them and make sure he doesn't need any. Hopefully his body will kick in gear and produce more. They lowered his steroids again from 15 mg once a day to 10 mg once a day. Other than that everything is pretty much the same. He is doing very well. Not sure if I every really said why he is on steroids but it helps keep the Graft VS. Host disease under control...so it is a very good sign that they are lowering his.
Maegan he got that question right:) If it is okay with your parents Brandon would love to see a picture of you so he knows what you look like. Be sure to check with them first. My email address is poohbear24too@hotmail.com if they say it is okay.
Well we will keep you all updated on how things go. Don't forget to keep our friends in your prayers. Our friend Brennen had to have some extra blood work done and we are praying for good results. Bailey is here (I don't have her website) getting a transplant and was on outpatient care, but had to be readmitted for fever. Paxton is still in the hospital and needs prayers..they were admitted before we were. Back in Arkansas, Chase has been dealing with radiation and the side effects. Another friend that we found through Chase's site is Katie...she needs lots of prayers..I hope to have her name included in those above, but I want to wait and make sure her mom doesn't mind...so please keep these kids in your prayers.
Take care,
Kathy and Brandon
Friday, June 30, 2006 12:02 AM CDT
Brandon is making his own platelets now woooohoooo! We went in yesterday and they drew his blood and we got settled in for a long day. Then about an hour of so later the doc came in and said well his counts look good you can go. He made sure we weren't having any other issues and sent us on our way. His white blood count was only 1400 or 1.4 but the doc says that his body is just doing things backwards and making the difficult cells first and that is a very good sign of good marrow. He is doing really really good. Thank you all for the prayers they really mean a lot to us. Keep praying for him.
Maegan he got that one right...looks like he is on a streak:)
We will keep you all posted on how things go at his next appointment.
God bless,
Kathy and Brandon
Monday, June 26, 2006 4:24 PM CDT
Brandon's appointment went well today. He got IV immunoglobulins and platelets. His platelets weren't as low as I thought they would be...they were 22 and they usually don't infuse until they are below 20 but they went ahead and gave them today instead of having us come back tomorrow. Hopefully this is a sign that his body is starting to make its own platelets. The doc told him today that they would try to take out his line and give him a port within the next month. He can't wait for that because he can't swim with the line and the line makes me nervous because I am afraid it is gonna get yanked out. Anyway, all is going good.
Maegan he got that one right. I tested him on it without giving him the options because I knew he would know that one. He had to think about it for a lil' bit but he got it.
Well we will keep you posted on how things go on his next visit.
Take care,
Kathy and Brandon
Friday, June 23, 2006 9:34 AM CDT
Brandon is doing so well. He had his clinic appointment yesterday and things went well. He got platelets again which we expected. His platelets were 10, white blood count was 1800 or 1.8. The doctor says that the levels that he is concerned with being produced are doing good. They lowered his steroid again so now he is only on 20mg in the morning and that is it. They lowered his prograf (one of his anti-rejection meds) to 1mg last Friday because the level of med in his blood was to high which is good because that means his intestines are healthy and absorbing it too well, they told us to keep it at 1mg yesterday.
Maegan he didn't get that one right either:( That is ok though...like you said he has gotten more right than wrong.
Well I will keep you all posted on how he is doing.
Take care and god bless,
Kathy and Brandon
Monday, June 19, 2006 10:59 PM CDT
Everything is going pretty good. Brandon's appointment went well...he had to get platelets because they were at 9, but his white count is at 2200 or 2.2 so that is good. His blood pressure med wasn't helping so they upped his dose from 2.5 mg/day to 5 mg/day..his nurse said that his blood pressure just laughed at the dose we were giving him:)
They lowered his steroids down some more so that is good...they are slowely weening him off them. Once they get him off the steroids then hopefully his blood pressure will return to normal without meds. He is doing really good though. His doctor says that kids at his stage are usually getting platelets 3 times a week and he only gets them 2 times. They are trying us on 2 visits per week now instead of 3, since he is doing so well so we don't go back until Thursday.
Maegan he didn't get that one:) It was a little bit harder.
He asks me everyday if he has any messages so keep them coming and keep on praying for him. Your prayers mean a lot to us.
Take Care,
Kathy and Brandon
Saturday, June 17, 2006 6:40 PM CDT
Hello everyone,
Sorry it has been a few days since I have updated his page. He is doing pretty good. His last 2 appointments went well. His counts were pretty good Wed. and then Friday all he needed was platelets. They did decide to put him on a blood pressure medication because his blood pressure has been kinda high the last few times we have been in which is normal. The other two parents that I talk to a lot say that their kids are or were on it. Otherwise he is doing really good.
Delores and Michelle, he really misses you guys. He asked me this morning if he was ever gonna get to see you all again:( Of course I told him yes.
Maegan he got that one right. He knew it was either Qui Gon Jin or Obi Wan so I said well just pick one and he picked the correct one:)
Well he goes back to the doctor again on Monday and we will let you all know how it goes.
Take care and God bless,
Kathy and Brandon
Tuesday, June 13, 2006 1:53 PM CDT
Brandon had a clinic visit yesterday and things went pretty well. His platelets were 13 so they gave him a platelet transfusion but everything else looked pretty good. His white count has leveled out at about 1200 or 1.2, but the doc says that at this point it isn't uncommon. He is doing really good and it has been pretty uneventful around here.
Maegan I think he got that one right only he didn't say Palpatine he said Lord Sideous which I believe is the same person. I'm not sure though lol.
I will keep you all posted on how things go within the next couple days. He goes back to the clinic tomorrow.
Take care,
Kathy and Brandon
Sunday, June 11, 2006 4:15 PM CDT
Hello everyone,
Brandon is doing very well. He went in Friday for his clinic visit and things went pretty good. His platelets were in the 30's, normal is 140 to 400 but they transfuse at 20 or less with these kids. His hemaglobin was 10.6 normal is 11 to 15 if I remember correctly, they transfuse around 8. His white count was 1200 or 1.2 which is good at this point...the normal white count is 4500 to 13000 and white cells can't be transfused the body has to build those. Anyway everything is going very well at this point. His potassium was a little low so they gave him a potassium bolus. We go back to clinic on Monday. He will probably need platelets again so we will see.
Maegan with a little help he got it right. I had to give him a hint telling him that they glowed a certain color then he got it. We do let him watch all of the Star Wars movies..actually we have all of them.
Well I will keep you all posted on how things go.
Take Care,
Kathy and Brandon
Wednesday, June 7, 2006 11:46 AM CDT
Hello all, Brandon is doing really well. He had a clinic appointment Monday and everything went very well. We had to go back yesterday to get an antibiotic and platelets because his platelets were borderline on Monday, but everything else was great. He doesn't have to go back again until Friday, we just have to call in daily to let them know how he is doing.
Maegan he got the question right again before I even finished it lol.
I will keep you all updated on how things go but for now things are pretty uneventful which we are very greatful for.
Take care and God Bless,
Kathy and Brandon
Saturday, June 3, 2006 11:58 AM CDT
Well Brandon "Tyler" is home and doing very well. His white count was 1.9 or 1900 yesterday. His platelets were low so he got platelets yesterday before he came home. He is on several meds; 2 antirejection meds prograf and rapamune, magnesium, prednisone, zantac, diflucan, and valacyclovir. His bulk dose is in the morning when he has to take a total of 9 and 1/2 pills, but he is just glad to be home.
Maegan he didn't get the age of yoda when he died but once he found out his age when he died he figured out how long he had been training jedi. He got the color of the lightsaber right with no problem. He guessed the age that anikin thought he was when watto got him. Thank you for taking time to give him trivia questions.
We are so glad to be home. He will start out going to the clinic about 3 times a week unless they need us the come more for some reason, then it will go down to 2 visits a week in a couple weeks. I will keep you updated on how his visits go.
Take Care,
Kathy and Brandon Tyler
Friday, June 2, 2006 0:04 AM CDT
Hello and sorry it has been a couple days since I posted. Brandon(Tyler:) is doing soooooo good. He has been eating very well and as long as he drinks enough they are going to let him go home Friday which is tomorrow woohoo. That is why I haven't posted. I came home to clean the house really good. His father finally came down yesterday and is at the hospital with him.
His white count is 1.6 or 1600 today. Hopefully he will get to come home tomorrow and go back and forth for outpatient care.
Maegan he got the last question right before I even finished asking the question. I will have to wait until tomorrow to ask him the latest question but I'm sure he will know the answer because he talks about the color of all the lightsabers all the time but we will have to wait and see.
Well I am going to bed now. I have cleaned house like crazy today and I am tired. I will keep you all updated on how things go.
Take care and God Bless,
Kathy and Brandon Tyler
Monday, May 29, 2006 6:44 PM CDT
HE IS EATING...WOOHOO!!!! Well yesterday he drank a little of the broth from his chicken noodle soup for lunch and then for supper he ate the mashed potatoes off the tray they brought him. Today he ate a bowl of cereal for lunch and for supper he just ate pizza and half a breadstick. I am so excited and he is very proud of himself. He started eating just in time too because the doc told me this morning that he was going to cut his TPN down to half what they have been giving him. Now if I can get him to drink plenty then everything will be great.
He is doing really good today. He has been playing games today on his xbox and a gamecube they brought in for him. We raced again today and of course he kicked my butt again. He is in a good mood..someone asked earlier if he always has a smile on his face. They started him on steroids today to tame the GVH and it has already helped. His white count went down a little from yesterday, it was 0.7 or 700 today it is 0.5 or 500 but they say that is normal that it will go up and down like that. Maegan...sorry I think I have been spelling it wrong. He didn't get the answer to that one. He said nerfherder which is what she called Han I believe. He still loves the trivia though so keep them coming:) Keep those prayers going they are doing wonders.
Take Care,
Kathy and Brandon
Sunday, May 28, 2006 4:53 PM CDT
Well today is day 18 and his WBC is 0.7 or 700. His little body is covered in the skin GVH(graft vs. host) rash. I posted some new pics in the photo album so everyone can see what I am talking about. He is doing ok with it though. It itches a little but not too bad. I think the GVH is affecting his intestines now too. He has had some bathroom issues today. He still isn't eating, but I am trying to push him to eat more. He is actually eating some mashed potatoes right now:) woohoo lol. They always try to make you out to be a liar haha. Well he can keep doing that as long as he eats.
He is having a pretty good day though. We played a racing game on his xbox earlier and he kicked my butt. Now he is playing Rayman 3 or something like that lol. Meagan he got the last trivia question wrong so he is 2 out of 3 right now:) Keep sending them though he loves it.
I went to the house to spend some time with Daddy, Jordan, and Savannah yesterday and after I got back we had a movie night. We watched "Pirates of the Carribean". The nurse laughed when she walked in because I was laying in bed with him and we were both relaxed and enjoying our movie. Anyway I will keep you all updated on how things go. Keep him in your prayers.
Take care,
Kathy and Brandon
Friday, May 26, 2006 7:37 PM CDT
Today is day +16 and we have a white blood count of 0.3 or 300. He is showing slight signs of GVH of the skin..he has little spots here and there. That is a good thing though, we want him to get some GVH...sorry GVH is graft vs. host disease, which means that the new stuff is fighting his body a little because it sees his body as foreign, which is why he is on anti-rejection meds.
He is doing pretty good. He still isn't eating. I did get him to drink the broth from his chicken noodle soup today so that is a start. He played some basketball in his room today. We got the OK today to walk out in the hall as long as he wears a mask and gloves and if he sits down we have to wipe the chair down first.
He has been watching Star Wars all day. He brought all of them with us. Meagan he got the answer right again...I didn't even finish the question before he blurted out the answer lol.
I will keep you all updated on his progress. Keep the prayers going.
Take care,
Kathy and Brandon
Thursday, May 25, 2006 0:55 AM CDT
Today was day +14. He is doing pretty good. His lips are getting better. His platelets were very low at 9 yesterday so they planned on giving him platelets. They wanted to try giving them to him without pre-meds(benedryl and tylenol). They aren't big on pre-meds here for some reason..personally my thoughts are, why wait to see if a child is going to have a reaction..why not just give the pre-meds before hand. If they do have a reaction then the platelets or whatever they were getting goes to waste because they won't use them. Anyway they gave him blood the other day without pre-meds and he did fine, but with the platelets he had a reaction, nausea and vomiting, so they stopped the platelets and gave him benedryl to stop the reaction. I guess since they saw that he had a reaction they will give the pre-meds from now on. Anyway they waited until today to go ahead and give him platelets again.
His WBC(white blood count) was 0.1 today so I am hoping that it goes up tomorrow instead of going back down to less than 0.1 and teasing us like it did last time.
Keep those prayers going for him and thank you for all the messages that everyone is leaving for him. To all of you Arkansas doctors and nurses we really miss you and love that you care enough to check on him and leave him messages. He really does miss all of you, ok I'm tearing up now. Friends and family we love getting your messages and miss you all sooooo much. Hopefully we will get him healthy soon so we can come home to visit all of you. To those of you we don't know personally thank you for praying for him. He thinks it is cool that people who don't know him and live so far from him are checking in on him. Meagan he doesn't think that it is strange that you are a girl and you love star wars he thinks it is very cool. I had to make him think a little bit, but he got the answer to your question right lol then he asked me to put that movie on for him:) All of your messages mean so much to us. I check his guestbook several times a day for him. Thank you all so much!
Take care and God bless,
Kathy and Brandon
Monday, May 22, 2006 12:11 AM CDT
Today is day +12 and things are going pretty well. They have lowered his pain meds down to 10 micrograms plus the button. He is doing pretty good, but he still isn't eating. His mouth and throat are healed up pretty well..his lips are still bothering him some. Last night he got sick so I think that inflamed things a bit.
He is going to be getting a blood transfusion today. His hemaglobin is 7.6 and they like to give blood around 8.4. His white count went back to less than 0.1 yesterday like the doc figured it would and it is still at that level today..but that is ok we still have time for it to start. They say it usually takes about 2 weeks and we haven't hit the 2 week mark yet so all is fine.
He is getting anxious and ready to go home. He misses Daddy, Jordan and Savannah...and so does Mom:) We are doing pretty good though. It has gone by a lot faster than I thought it would. I'm glad we decided to transfer down here, otherwise we would be living out of a hotel room for a couple months after we were released from the hospital instead of going home and being with the rest of our family. We are very lucky that we had that option to relocate.
Well we are going to play a little basketball. They have a little goal in here for him. I will keep you all informed on how things go.
Take care,
Kathy and Brandon
Saturday, May 20, 2006 4:19 PM CDT
Well today is day +10 and things are going pretty well. Brandon's throat, mouth and lips are getting better. He can actually smile today and it doesn't hurt. They have started lowering his pain meds. He got up to 40 micrograms of fentanyl every hour plus the button that he could push every 15 min. Now they have him down to 20 micrograms every hour plus the button which he hasn't been pushing very often.
His white count this morning showed up as 0.1 instead of less than 0.1. The doctor said it could go back down to less than 0.1 so we will see how that goes...hopefully it will go up instead of down since that is what we are waiting for. It would be good if his white cells start producing this early. I'm not gonna get my hopes up though. We will just wait and see. I will keep you posted on how things go. Keep the prayers going.
Take care,
Kathy and Brandon
Wednesday, May 17, 2006 11:22 PM CDT
Hello everyone,
First of all for those of you who may have seen a post in Brandon's guestbook where he was called Tyler and were wondering why they called him that...well that is Shellie, Brennen's mom...they are one of our neighbors here in the hospital and Brandon has decided that he wants to be called Tyler so she is not crazy:) I told him that it would be hard for those of us who have called him Brandon for the last 11 years to call him Tyler because we are so used to calling him Brandon and that if it is ok we will all still call him Brandon but that he can start having all his nurses, doctors, teachers and classmates call him Tyler. He agreed to that:)
Anyway, he is doing pretty good. The doctor says that his mouth and throat are looking better..now if his lips will just heal. He still has a little diarrhea but not too bad but his poor bottom is still sore. He got platelets today and they gave him benadryl before hand to prevent a reaction to it and so he has slept most of the evening away. That pretty much sums things up. Not much new to tell.
Keep praying,
Kathy and Brandon
Tuesday, May 16, 2006 11:18 PM CDT
Hello everyone,
Today was a little bit better day. His mouth is still bothering him but they upped his pain meds last night so he did a little better today. Things are pretty much the same. He still is having problems in the bathroom dept. and his bottom is getting pretty sore now. He is still swollen under the left side of his jaw...they think it is related to the mucousitis. Well that is pretty much it for tonight. Take care all.
God bless,
Kathy and Brandon
Monday, May 15, 2006 11:50 PM CDT
Well yesterday Brandon had to get platelets, IV immunoglobulins and some antibiotics. He had a little bit of a reaction to something they gave him. His face got really red around his eyes, nose, mouth and down past his shoulders, but he was feeling a little better yesterday. Today wasn't a very good day though. He hasn't felt very well today. His poor lips are really bothering him...he has a sore on the inside of his top lip. He was hungry today and wanted to eat and he tried to eat a couple of things but his lip hurt too bad. He got blood today and they did a CT of his sinuses and chest because his nose is sore and they wanted to cover everything and make sure it wasn't something serious. The CT was clear so nothing to worry about there. I noticed around 9:00 tonight that under the left side of his jaw was swollen so I had the nurse look at it and she called the doctor to let him know, they gave him benedryl and are keeping an eye on that so hopefully it will go down soon. Hopefully his mouth will get better soon so he can eat. I will let you all know how things go.
Take care and God bless,
Kathy and Brandon
Sunday, May 14, 2006 0:36 AM CDT
Well today was day +3 and Brandon is doing pretty good considering. His upper lip is swollen and his mouth, nose and throat are sore. They have him on a pain pump which for the most part is taking care of the pain...there are times when he pushes his button a little more. He has a little bit of diahrrea, but not bad. He isn't eating and is only drinking a little bit so they have him on TPN or total parenteral nutrition which is nutrients he needs through IV. The doctor says that this is all normal and that usually kids are exhibiting these symptoms, that Brandon is now, a little bit earlier and that the kids who wait a little longer to show symptoms do better so we will see how that goes. Keep those prayers going...he loves knowing that you are all thinking about him and praying for him. I check his guestbook daily and read the entries to him. He really loves it...thank you all for taking time to send him little notes to let him know you care. May God bless all of you.
Take care,
Kathy and Brandon
Thursday, May 11, 2006 11:07 PM CDT
Well it is day +1 and it looks like some symptoms are starting up a little more. His throat is now getting sore so he didn't really eat or drink much today. They say eventually he will be put on a pain pump but for now they just give him morphine when needed. He had some nausea and vomiting tonight. He had an episode with stomach cramps and diahrrea early this morning but that was the only time today. He did feel up to painting a little bit tonight but not for too long. But he is still doing pretty good considering. I will keep you updated on his progress. The doc told him today that if things go well he may be released in about 3 weeks. So keep those prayers going and maybe things will go well for him. Well I am going to go to bed. Take care everyone and God bless.
Wednesday, May 10, 2006 5:15 PM CDT
Well today was the big day. Everything went very well. He had a little bit of nausea and vomiting but not too bad and his blood pressure spiked a little bit but they gave him some meds to take care of both and everything was just fine after that. His pulse O2 stayed at 100 the entire time except when he was moving his finger and playing his xbox so they put it on his toe and that solved the problem. He is doing really really good. Dr. Grimley told him he was boring and that they like boring haha. They say he is doing better than they expected him too. So hopefully things will keep going well. Keep up those prayers, they sure are working wonders for him.
Take care,
Kathy and Brandon
Tuesday, May 9, 2006 10:59 PM CDT
Well tomorrow is the big day. We will be glad to get it over with. He is doing pretty good. He hasn't felt like doing a lot today though. I think the low counts are starting to get to him. He also had more diahrrea along with stomach cramps today so they gave him a little morphine for the cramps and he has been awesome since. He even drew on the window with window chalk a little bit. They moved us into a bigger room today. He is one of if not the oldest kid in transplant so they wanted him to have a big room with plenty of room to play because they want him to be up and playing around and not laying in bed all the time. Well I will let you all know how the transplant goes. Keep the prayers going.
Take care,
Kathy and Brandon
Sunday, May 7, 2006 8:02 PM CDT
Well we just took our last shower for the 4 showers a day. Everything is going well. He is doing pretty good. No problems so far. A little bit of diarrhea but not too bad. He isn't eating the hospital food...except for pb&j sandwiches. I expected that though so that is why we came prepared with canned food and cup of noodles and plenty of snacks. Well there isn't much else to tell. I will keep you posted as things happen. Transplant is Wed.
Take care,
Kathy and Brandon
Friday, May 5, 2006 10:34 PM CDT
Hello everyone,
We are finally in the hospital now. He is doing really good..we are at day -5 which basically means 5 days before transplant. He had his first dose of the Thiotepa this morning then we had to start the 4 showers a day as soon as it was finished. They started the chemo around 10:30 or so and it ran over 4 hours then his first shower was around 3, second shower was around 5:30, third was around 8:30 and we are about to do the forth at 11:00. Then we have to start them again at 7 in the morning. So tomorrow he should get a little more time in between showers..7, 12, 5, 11. He can't go more than 8 hours between showers. The reason we have to do the showers is because the chemo seeps through the pores in his skin and will burn his skin if he doesn't shower often. Tomorrow will be the last dose of this chemo..we will continue the showers until 24 hours after the last dose. Sunday and Monday he will be put on another chemo called Cytoxin which he has had before at a lower dose so hopefully he will tolerate it well also. His spirits are really high right now. Our neighbors in the room next to us are people we know from Arkansas so we are lucky to know someone..then in a couple weeks some more people we know from Arkansas will be coming. He is really having a good outlook on all of this. He does his own dressing changes after each bath...he really likes to be hands on with what has to be done. I have some pics of him doing the dressing change that I will post in the photo gallery probably tomorrow if I get a chance. Well I need to get off here and get ready to give his last shower of the day. Thanks to all of you for posting in his guestbook..he really loves reading the messages. He loves knowing that you are all thinking about him and praying for him. Thank you so much.
Keep up the prayers,
Kathy and Brandon
Tuesday, May 2, 2006 5:17 PM CDT
Well Brandon started his radiation today. The morning dose didn't go so well...as soon as he got off the table he got sick. He threw up again in the van on the way home then he ran to the bathroom as soon as we walked in the door. I gave him his zofran in hopes that it would stop the nausea and vomiting but he threw up about 3 more times after that so I called his docs and asked if I could give him a higher dose. They said that we could do a triple dose first thing in the morning before his first radiation treatment and then give him the regular dose every 4 hours after that and said that I could go ahead and give him a triple dose before his second for today since he was having so much trouble. It worked very very well. He sat up after his treatment and said with a big smile, "I don't feel sick". Thank you God. Poor kid was sick as a dog this morning. I will let you know how the next two days go.
Take care and God bless,
Kathy and Brandon
Friday, April 28, 2006 12:37 AM CDT
Hello everyone,
Brandon is doing really well. His counts are pretty good. Platelets were over 200...ANC was around 600 if I remember correctly...WBC was over 1000...Hemoglobin is still on the rise at over 9. It is funny what we consider good counts...for anyone who isn't going through what he is these are awful. Anyway, everything is still set to go next week. The actual transplant day won't be until May 10th. He will be admitted the night of the 4th and they will start hydration, then on the 5th they will start chemo. There are 2 different chemos he will have..the first 2 days he will be on a chemo that requires him to take 4 showers a day because it comes out of his pores and can burn his skin the other 2 days he will be on one that he has had before but a higher dose..then he will get a day off then transplant day. We will all be glad when this is behind us. I don't think poor Savannah realizes how long we are gonna be in there:( One good thing is that we have webcams so we can see eachother daily. The kids won't really be able to come to the hospital to see him. Anyway, I will let you know if anything changes. Take care and keep praying that everything goes well for him.
God bless,
Kathy and Brandon
Friday, April 21, 2006 5:38 PM CDT
Hello all,
Brandon had a bone marrow aspirate today and it was clear. We went for his radiation simulation yesterday and got all his marks put on him so they know how to line everything up. Next week we shouldn't have much to do...we go Monday to Methodist Children's to meet with the transplant docs again and we will have to go to the clinic one day next week for CBC and pulmonary function test.
Keep praying,
Kathy and Brandon
Tuesday, April 18, 2006 12:31 AM CDT
Hello everyone,
Brandon is doing pretty good. His marrow from last week was clear woohoo. We had to go in yesterday for a CBC and for blood and platelets and chemo. He had a reaction to the platelets(chills and fever) so they had to do some blood work to make sure it was ok to give him the blood. So finally they decided it would be ok to give it to him around 6:30 last night..so we were there from 9 in the morning until 11 at night. Anyway, they have decided to wait one more week to send us to transplant. They want to give his counts an extra week to recover. So we will be starting everything the first week of May if it doesn't get put off again. So everyone please pray that things go well for us so we can start transplant and get it overwith. He is so ready to get it started and be done with it. We go Thurs. for his radiation simulation and for a CT scan then Frid. we go in for another bone marrow procedure. Please keep praying for him.
Take care,
Kathy and Brandon
Wednesday, April 12, 2006 2:38 PM CDT
Well Brandon is doing pretty good. We went in for his bone marrow procedure yesterday and all went well. We should know the results in a couple of days. His counts have gone down quite a bit from last week which is expected because of the chemo. I gave him a neulasta shot Sat. to boost his white count so we can start his total body radiation. We go in next week for his radiation simulation appt. then hopefully the following week we will do radiation and get admitted. We are set to go back tomorrow for a CBC to see if he needs blood or platelets. Thanks to all of you for all the prayers and messages.
Take care,
Kathy and Brandon
Thursday, April 6, 2006 5:59 PM CDT
Hello all,
Brandon's surgery went well. He is doing pretty good...just really tired. It was a long day of waiting, surgery, post surgery stuff, up to clinic then back down for a stinking x-ray they should have done before he left the surgical ward, then back up to get fluids and chemo. So we are finally home now. Anyway, I just wanted to let everyone know how his surgery went...I am tired so I am gonna get off here.
Take care,
Kathy and Brandon
Wednesday, April 5, 2006 5:25 PM CDT
Hello everyone,
Brandon is doing pretty good. He had his 3rd day of chemo today. They had more trouble with his line today so he is scheduled for surgery tomorrow morning to either repair the existing line or put in a new one. He is a little nervous about it but he is tired of having to go through all the trouble of trying different positions to get the thing to work and it not work anyway. Anyway, I will try to get on here to update and let everyone know how his surgery goes.
Take care and God bless,
Kathy and Brandon
Tuesday, April 4, 2006 3:48 PM CDT
Hello everyone,
Brandon started his chemo Monday as planned. I can't remember if I told you all that his line has been giving us trouble and not wanting to give blood. But anyway, we thought we had figured out how to get it to work but today we went in and it wouldn't give anything, luckily his counts from yesterday were very good so they didn't really have to have any blood tests done. It is still useable for fluids and chemo but is stingy when you need to get blood from him. I think they may have to replace it if it doesn't straighten up. I hate to see him have to go through surgery again but we just can't go through this everytime they need to get a CBC. It is just so frustrating sometimes well maybe a lil' more than sometimes but hey what can you do. You just deal with what your given and move on right. I know we are lucky compaired to some so we definately count our blessing it just seems like we can't get a break sometimes, if it isn't one thing it's another. Well, can you tell I am irritated? Anyway, everything is going well with his chemo...2 days down 3 more to go. No nausea or anything so as always his body is handling it very very well.
As far as Brandon's new improved website goes...that is all thanks to Carrie Wellenberger or Chase's mom www.prayforchase.com :) since that is how most of us are known. You know what I mean, once we have children we become someone's mom..we no longer bare the title of our name to most of the world..we PROUDLY bare a new title as so and so's mom lol. The funny thing is that we get so used to it or atleast I do, that we actually introduce ourselves that way to some people...Hello I am Brandon, Jordan and Savannah's mom :)haha. Anyway, she offered to help spice it up and make it more Brandon like and for those of you who know him you know that she did a GREAT job. I just wish I wasn't so computer illiterate haha. Well, I think that I have vented and rattled on about things enough for one day. I hope everyone is doing well.
Take care and God bless,
Kathy and Brandon
Saturday, April 1, 2006 1:31 PM CST
Hello everyone,
Sorry it has taken me so long to update Brandon's page. A lot has been going on. The last time I updated I told you all if his shingles didn't get better that we would have to be admitted. Well, they didn't get better and we did have to be admitted. He was in the hospital for about a week on antibiotics and antifungal meds. They also took out his port and put in a double lumen broviac line while he was inpatient and did his scans to get him ready for total body irradiation. They also gave us some bad news the Monday that he was admitted. His cancer had come back in his marrow. It wasn't that much of a surprise to me since he hadn't been on chemo for about a month. So they started chemo while he was inpatient also. The chemo he is on is once a day for 5 days then on day 7 and 14 he had bone marrow aspirate and spinal with chemo we were supposed to start chemo again on day 21 which was Thursday but they wanted to wait til Monday to let his counts recover a little more. Monday we will start 5 more days of chemo then the following week he will have another bone marrow aspirate then if everything is clear we will probably start the TBI and start transplant.
Anyway, on a lighter side we took the kids to Sea World last weekend. We had a really good time. I wanted to take the kids before transplant. We got to feed the dolphins and we rode the rides and watched a couple of shows. The only bad thing was that Jordan had woke up with a sore throat and didn't tell us because he was afraid we wouldn't be able to go so half way throught the day I noticed he acted like he didn't feel too well and come to find out I took him to the doctor the next day and he has strep throat. So if it isn't one thing its another:) But we are all doing pretty good otherwise. Brandon says he will be glad when we get through transplant so he doesn't have to go through chemo anymore. I think he is getting tired of it all. We miss all of you and he loves that everyone leaves messages on here for him letting him know you are thinking about him. Well, I guess that is all for now. I will TRY to get better at this:)
Take care and God bless,
Kathy and Brandon
Sunday, March 5, 2006 8:23 PM CST
Hello everyone,
We are officially in San Antonio and we are in a house and getting settled. Brandon is doing pretty good aside from the fact that he has shingles again. He started complaining about his leg and limping a little about a week ago and said that he thought he hurt it getting out of truck so I didn't think much about it because it didn't seem to be bad just figured he landed wrong. Then we went to the radiologist to get things set up for his radiation and he noticed some little blisters on his leg so the doctor looked at it and said that it looked fungal then we went to the oncology clinic the next day and they saw it and said it was shingles. It made his leg pain make sense. Anyway, he is on antibiotics for that. Hopefully it gets better. If not we will get admitted and it will postpone his transplant which was supposed to start next week. Otherwise things are going pretty good. We are living on base. We were really lucky and got a house a few days after we got here. I called to see how far we were on the waiting list for a four bedroom and we were 39th but the girl said she had a three bedroom she could give us so we took it. It is really nice. It is 2 story 3 bedrooms, 2.5 baths, and a garage. Things seem to be working out for us since we got here...boy am I glad because they sure weren't going well before we moved. It felt like we were never gonna get to move. Well, I need to get off here and go to bed.
Take care and God Bless,
Kathy and Brandon
P.S.-I will try to update the pic above soon so that it will include both his favorite nurses:)
Wednesday, February 15, 2006 11:21 PM CST
Hello everyone,
I hope you are all doing well. For those of you who aren't already aware, Brandon has been in the hospital for the last week and a half. We got to go home on the 2nd and were getting ready to move to San Antonio on the 7th but he started running a fever again so I have to bring him in around 3 a.m. on the 6th and we have been in the hospital since. When we got here his platlets were 0 and his ANC was 0 also and his WBC was only 0.03 which is about 30 and the normal is 4500 to 13500. He was in a lot of pain because he is having some problems with his bottom because of diarrhea. He has been on a morphine pump for the pain. He had to have transfusions of platlets and red blood. He is doing so much better now though. His ANC is in the 1400's his WBC is in the 1600's and his platlets are in the 40's. He has been off the pump for most of the day. He has only had to push the botton 1 time since about noon or so this afternoon and it is now about 11:30 p.m. They have him on oral Oxycodone for the pain now and they can give him a lollypop that has pain medicine in it that works pretty instantaniously. We are hoping to get to go home Friday. If so we may be leaving for Texas this weekend. We can't wait! We are all really excited about the move. But we have some mixed feelings to because we have to leave our friends and the nurses and doctors we are used to. But I am sure we will get to know and like the new doctors and nurses. If not we will just have to fire them and ship our ACH docs and nurses to us;) Haha to bad it isn't that easy. Anyway, I need to get off here and go to bed.
Take care and God bless,
Kathy and Brandon
Monday, January 30, 2006 11:38 PM CST
Hello everyone,
Thanks to all of you who have left messages for Brandon. He loves seeing that people care about him. We have had a lot going on lately. Sorry it has been a couple weeks since I have updated the site. He has been in the hospital 3 times in the past few weeks. We are actually currently in right now. The first 2 stays were for chemo. This stay was because of fever and neutropenia or at least that is all we thought it was. I brought him in Sat afternoon because he was running a fever of 104.7. We got to the hospital and his blood pressure was really low and his heart rate was really high so they put him in ICU. They put him on norepi and dopamine for his blood pressure. They put in 2 IV's in his arms and a central line in his groin. They also put him on oxygen because his O2 sats went pretty low. They slowly weened him off all that stuff and he did really good so they moved us Gold which is the floor we are normally on when we get admitted. His cultures did come back positive for infection though. He has been through quite a lot in the last couple days, but he is a trooper. Anyway, I need to get back to his room. I just wanted to update all of you on how he is doing.
Take care,
Kathy and Brandon
Wednesday, January 4, 2006 1:50 PM CST
Hello everyone, Brandon is doing really well right now. He had 3 hospital stays during December so it was a hectic month with that and the holidays. We had a very good Christmas and New Year. He goes to his regular doctor for his weekly cbc's then he starts weekly 2 day hospital stays on the 17th for a couple weeks. We should be moving around the end of Jan. begining of Feb. We are all very excited about the move. We will try to keep you all up to date with what happens.
Take care and God bless,
Kathy and Brandon
Tuesday, December 20, 2005 7:10 PM CST
Hello everyone! Sorry I haven't updated in a while but it has been very crazy lately. I have finally finished my semester in nursing school so now I can concentrate fully on getting Brandon healthy and taking care of the rest of us. Brandon is doing ok. We are currently in the hospital for fever and neutropenia(low immune system). He is doing a little better. His counts are starting to come back up now. He can't seem to stay out of the bathroom though...poor lil' guy. His poor bottom is so sore. Hopefully we will get out of here for Christmas but we have to come right back on the 27th for another hospital stay for chemo. They gave him a blood transfusion today so hopefull that will make him perk up some...he hasn't been eating very well for the last few days and for those of you who know him that isn't like him:) Anyway, we are moving to San Antonio around the end of Jan. beginning of Feb. That is where they are sending us for the bone marrow transplant so the air force is gonna go ahead and move us there. From everything that I have heard it seems to be a really good hospital and everyone loves the doctor that does the transplants. Well, I need to get back to his room before he sends a search party after me hehe. Everyone take care.
Thanks for visiting,
Kathy and Brandon
Wednesday, November 23, 2005 3:26 PM CST
Hello everyone, Brandon is doing pretty good considering. His counts are really low right now. I had to take him to the hospital Saturday evening because he was running a fever and they admitted him for fever and neutropenia(low counts). They did blood cultures and they came back positive for staph and strep. He will be on IV antibiotics until Monday to take care of it, so they left his port accessed and we have to give him his meds 3 times a day. He got to come home yesterday around 1:00. We did find out last Tues. that he is back into remission. They did a bone marrow aspirate and spinal and both were clear...no leukemia cells woohoo!!! Anyway, I will try to keep you all updated as much as I can.
Take care,
Kathy and Brandon
Thursday November 3, 2005 7:00 P.M.
Well we found out Tuesday November 1, 2005 that Brandon has relapsed again. This time in his bone marrow. He was put into the hospital that day and started on chemo. We got out today Nov. 3rd around 3:00 pm. He is doing pretty good considering, he just hates to be going through this again. He had 2 leg shots today which he absolutely hates. They are going to attempt to get him back into remission for the next 4 weeks then they are going to look for a donor so they can do a bone marrow transplant. Well, I will try to keep ya updated as much as I can.
Everyone Take Care,
Kathy and Brandon
Monday, January 31, 2005 10:48 PM CST
Hello everyone, Brandon is doing really well. He is finished with his chemo treatments now. He had his last chemo on Jan. 18th, then he had a bone marrow assperate and a spinal Jan. 25th. Everything turned out ok with both. We don't go back to the doctor for a month. It seems really strange to think about not going to the doctor every week. We have been to the clinic every week, sometimes 2 times a week, for the last 3 years and 3 months. It is going to be very different that is for sure. Going to the clinic had become our normal weekly routine. Everyone please pray for him. Him being off treatment makes me a little nervous . It was our security blanket so to speak. Anyway, please pray for him to stay healthy and stay in remission. He has been in remission for 2 years. Leukemia is cureable so lets all pray that he is cured. Everyone take care and may God bless you all.
Kathy & Brandon
Friday, November 5, 2004 0:21 AM CST
Hello all, sorry I missed last months update. Brandon is doing so good. His counts have been awesome. He only misses school on the days he has to go to the clinic for chemo, which is every Tuesday. We had a pretty good Halloween. Savannah and I had strep throat the week before so we didn't get to do everything we wanted to do for Halloween, but the kids enjoyed it.
We are now new homeowners. We bought a house in Beebe, Arkansas. We didn't get approved to move to Texas, for those who missed that update, so we decided to buy a house in Arkansas. It is a really cute house. I posted a picture of it in the photo album for everyone to see. Well, I guess that is all for now. Everyone take care and God bless you all.
Kathy & Brandon
Saturday, August 14, 2004 11:07 PM CDT
Hello all, Brandon is still doing wonderful. There is really nothing new going on with him. We did find out that we are not moving to Texas. The military didn't medically clear Brandon for the move. They said that the hospital that I would have to take him to for treatment was too far from the base. So we will not be moving. We were all upset about it at first, but now we have come to terms with it. It just wasn't meant to be:) Well, I guess that is all for now. Everyone take care.
Monday, July 19, 2004 11:17 PM CDT
Hello everyone, I haven't posted in a while. Brandon is doing great. He goes to his weekly appointments for chemo. We only have 'til January and then we are finished with chemo. Brandon's counts have been really good. We can't wait for January to get here, but then again I think of chemo as our security blanket and I am not looking forward to them taking it away:( Anyway, I just wanted to post on here to let those of you who still check in know how he is doing. I will try to post again in a couple weeks to let you all know how he is. The military may be moving us to Texas in September so I will keep you all updated on that also. We are all really looking forward to the move. The kids are really excited. Everyone take care and I will let you all know when we find out more about the move.
Sunday, May 16, 2004 10:58 PM CDT
Hello all, Brandon is doing great! He is in school and doing very good. He loves being back in school. He hates it when we have to take him out when his counts are low. I don't really have a lot to report which I guess is a good thing. Everyone take care.
Kathy & Brandon
Monday, January 19, 2004 4:13 PM CST
Hello everyone, I haven't made an entry on Brandon's page in a long time. Sorry if you have missed reading about his progress. There was a reason why I wasn't posting, but I won't bore you with the details. Brandon is doing awesome. He has had 10 radiation treatments so far and is doing really well. The only side effects that we have noticed so far is that it makes him really tired. He has only 6 treatments left. He can't wait. He is on steroids right now so he has gained a lil' weight. He has done really good in the last few months that I haven't posted. We are finished with the hospital stays. We have about a year of treatment left. He will have to go in once a week for chemo for that year.
We had a pretty good Christmas and New Year. The kids got way too much. Surprise surprise!!! We held Brandon and Jordan's Birthday party yesterday. Jordan's birthday was December 31st and Brandon's is January 27th. We had a skate party for them and they had a really good time. Well, I hope everyone had a good Christmas and New Year.
Take care and God bless,
Kathy
Saturday, October 18, 2003 8:48 PM CDT
Hello everyone, I know it has been a while since I updated Brandon's page. Brandon has been doing really good. He had a spinal yesterday and everything went well. He has a hospital stay next weekend. He is doing really well with his home bound. He is reading well. We are all doing good, I have just had a lot going on and have forgotten to update his website. Hope all of you are doing well. Take care.
Kathy
Monday, September 29, 2003 11:35 PM CDT
Hello everyone, Brandon is doing pretty good. He had a hospital stay this weekend. Everything went ok until we got ready to go home. He had to have 2 leg shots before we got discharged. We have to wait an hour after the shots to see if he has a reaction to them. He started running a fever and shaking really bad and his blood pressure went down a lot. The doctor had already said we could go, but I chose to stay a couple more hours so they could monitor him closely. His temp never came down all the way that day, but his blood pressure came back up when we made him sit up and get active. I had to give him Tylenol and Benadryl at home that night. I think it was just from his chemo and not the leg shots because he had been running a low temp all weekend because of the chemo. Anyway, he is back to normal now. We are doing the leg shots at home again for 10 to 14 days. Brandon isn't really enjoying home bound at all. He goes up to the school after school has let out because there are too many distractions at home and the teacher can't keep his attention very well. He always tries to say he doesn't feel well around the time he has to go to school. He has become quite the homebody. Anyway, hope everyone is doing well. Take care. Kathy
Tuesday, September 9, 2003 8:43 PM CDT
Hello everyone, Brandon's spinal went well Friday. His ANC was in the 1300's. We went to Hot Springs for the weekend for Brandon's Camp Quality reunion. Everyone really enjoyed it. We got to go to Magic Springs which is a theme park. The kids really enjoyed themselves. We went Saturday morning and came home Sunday afternoon. Brandon is doing really well. Everyone take care. Kathy
Monday, September 1, 2003 3:53 PM CDT
Hello everyone, Brandon is doing really well. His counts were in the 8000 range Friday, so we were able to stop his shots. He has an appointment Friday for a spinal and chemo. Also, a virtual quilt has been made for Brandon by some wonderful people that take the time to do these quilts for many children at no cost. I put the link to his quilt below. Please go and see his quilt and let us know what you think. Happy Labor Day to all of you. Take care, Kathy
Wednesday, August 27, 2003 2:48 PM CDT
Hello all, sorry I haven't updated Brandon's site in a while. He is doing well. His counts have been really good until yesterday when we went in. His ANC was 34 and he had to have blood and platelets. We are still doing his leg shots. We go back in Friday to see if we can stop his shots. I was wrong about not having anymore leg shots after these are finished. We have 2 more rounds of Ara-C which is the reason we do the legs shots, so we will have to do them 2 more times. Well, take care all. Kathy
Friday, August 8, 2003 6:51 PM CDT
I have recently updated the pictures in Brandon's photo album.
Well, Brandon had an appt. today for chemo. His ANC is around the 2500 range. He is doing really well. He gets admitted into the hospital next weekend for chemo. We will have to start the leg shots again, but this should be the last time we have to do them unless his therapy plan changes for some reason. Anyway, everyone take care and have a good weekend. Kathy
Saturday, August 2, 2003 10:21 PM CDT
Well, we didn't go in on Tues. the 22nd. Savannah was very sick running temps of 102 to 104 so Brandon's nurse told us to just stay home and take care of Savy, plus I didn't want to take her around any kids that may have been neutropenic considering we didn't know why she was running a fever. Savy is fine now...it was just a fever virus that had to run its coarse. I had taken her to the ER Sunday morning and they ran blood and urine tests and everything turned out fine, she finally stopped running a temp Thurs. Anyway back to Brandon, he is fine. We had a spinal on the 25th and everything turned out fine. He had an appt. yesterday and was admitted into the hospital for routine chemo. His ANC was in the 1500 range so it was pretty good. I stayed with him last night and Ernie is staying with him tonight. He is doing very well and should be home tomorrow around 5 or 6. Oh in case I haven't already told everyone, we had to shave his head again. His hair was falling out pretty bad, worse than last time. He had some pretty bad bald spots. He shaved most of it himself and I finished what he couldn't get. Well, that is about it so I will update everyone again after his next clinic visit. Take care. Kathy
Friday, July 18, 2003 2:38 PM CDT
Hello everyone, Brandon is doing very well. We went in for a CBC today to see if we should stop the GCSF shots. His ANC is 23,667 so we get to stop the shots. WOOHOO!!! He had to go into the hospital Sunday night because he was running a fever of 103. He had to have another blood transfusion and was able to get out Tues. He has been feeling pretty good and has been playing and acting more himself. We go back in Tues. and I will let everyone know how his appt. goes. Take care. Kathy
Saturday, July 12, 2003 2:47 PM CDT
Hello everyone, Brandon is doing pretty good. We went to the clinic Friday to have a CBC done to check his counts. I had a feeling they were pretty low. He hasn't done a lot lately. He just kinda lays around all day. His ANC was 14 and anything under 500 is neutropenic. He had to have a blood and platelet transfusion. He is running a low temp and is still not feeling very perky. He has an appointment set for Tuesday to have a CBC done and maybe have a spinal if his counts are good enough, if not he will go in again on Friday and have it done. We are still doing our GCSF shots at home. He does really well with them. He is a very brave little boy. I will let you all know how things go on Tuesday. Take care, Kathy
Monday, July 7, 2003 10:11 PM CDT
Hi everyone, Brandon's hospital stay went well. He got out of the hospital on the 4th around 2:00 so we got to watch the fireworks that night. He had to have 2 leg shots at discharge. We started his GCSF shots at home on the 5th and we should be done with them on the 18th or before if his counts are good enough. Brandon has done really well with his leg shots the last couple of days. He is such a trooper. We go into the clinic tomorrow for a CBC and 2 leg shots. I will let everyone know how it goes. Take care. Kathy
Sunday, June 29, 2003 10:38 PM CDT
Hello everyone, sorry I haven't updated Brandon's page in a while. Brandon is doing really good. His counts have been really high the last 2 weeks. His ANC was in the 11,000 range Friday before last and in the 18,000 range last Friday. He is on his steroids and is really swollen. He has lost 2 teeth in the last 2 weeks, his top 2 front teeth. He looks so cute. I took some pics and will try to hurry up and use the rest of the roll so I can post them soon. He goes in Wed. to get admitted for a routine 42 hour hospital stay for chemo. He is getting the Ara-c again and we are going to have to start the leg shots at home again:( and the leg shots at the clinic. The shots at home are once a day for 10 to 14 days to boost his counts back up after the chemo. Anyway, I have to go now Savannah is really sleepy and is very cranky. Take care, Kathy
Wednesday, June 11, 2003 9:33 PM CDT
Well, Brandon missed home and came home from camp yesterday. He called Monday night crying saying he wanted to come home so I went to pick him up Tuesday. Everyone there was hoping that after seeing me for a lil' while he would be ok and want to stay, but he had his mind made up. Jordan on the other hand was just fine and came over to me gave me a kiss and took off again. Jordan stayed, he seems to enjoy camp. Brandon is doing well. I will let everyone know how his appt. on Friday goes. Take care, Kathy
Friday, June 6, 2003 10:15 PM CDT
Hello everyone, Brandon's spinal last week went fine. The fluid was clear of any cancer cells:) We are still in remission. Brandon has been doing really well, his ANC was in the 1200 range today which is pretty good. We went in today for 2 different chemos (Daunorubicin and Vincristine) as part of the reinduction phase. He will do the same chemo for about 3 more weeks unless his counts are too low for them to give it and if that happens then they will just wait a few days and have us come back and check his counts and give it whenever his counts come back up. He will also be on steroids again for a 28 day period as part of reinduction. He was a little grossed out today when he went to the bathroom and noticed that the chemo had made his urine orange lol. He came out of the bathroom and said oh man that is gross and then told me his pee was orange, so I had to explain to him that it was his red chemo they had given him that made it that color. Anyway, just wanted to let everyone know that Brandon is doing great. He and Jordan are leaving Sunday to go to Camp Quality for 5 nights and 6 days, which is a camp for children with cancer and their siblings. They have doctors and nurses on staff to give him his meds and take care of him. I'm still a little nervous about sending them:{ Guess that is part of being MOM:) They are really excited about going, they have been counting down the days all week long. Well, I will update you all next week and let you know how their adventure away from home is going. Bye for now and take care, Kathy
Wednesday, May 28, 2003 3:10 PM CDT
Hello all, Brandon is doing good. His clinic visit Friday went well. The chemo made him sick a little bit, but not real bad. He is doing well with his home schooling. Brandon's energy level is still good. He has been playing with his friends a lot. His counts have been pretty good. He is scheduled for a spinal Friday, then we go into the reinduction period. He will be back on steroids and he will start getting leg shots again:( Well, I will let everyone know how everything goes. Take care, Kathy
Wednesday, May 21, 2003 9:54 PM CDT
Hello everyone, Brandon's hospital visit over the weekend went well. I stayed with him Friday night while Ernie went home with Jordan and Savannah. Brandon and I got to spend about an hour and a half of Friday night in the hall way because of the weather. We had tornado weather pretty bad and they had everyone out in the hall way just in case. Anyway everything went fine, the weather settled down and we got to go back into the room. Savannah didn't let daddy sleep that well so he said I had to go home with her on Saturday:) Brandon got to come home around 6:00pm Sunday night. He has another appt. Friday for chemo. I will let you all know how it goes, until then take care. Kathy
Monday, May 12, 2003 10:05 PM CDT
Hello everyone! I hope you all had a wonderful Mother's Day weekend. Brandon's appt. Friday went well. He had a spinal and his spinal fluid is still clear:) He is doing well. His energy level is high. We went home to visit this weekend and enjoyed ourselves. The kids all had a good time. Brandon has a hospital stay this weekend. I will let you all know how it goes. Take care. Kathy
Tuesday, May 6, 2003 11:07 AM CDT
Hello everyone, sorry I haven't updated Brandon's site in a while. Brandon is doing fine. His hospital stay went fine. Last Friday we had an all day visit for chemo and everything went fine. Brandon's hair is starting to grow back, but we are about to go through the chemo that made it fall out so it will probably fall out again. He will also be on steroids again and will start swelling up again for about 2 months. The protocal he is on repeats itself so we are going to have to start all over with what we have done so far. Anyway everything is going well and I hope to have new pictures to post soon. Take care. Kathy
Thursday, April 24, 2003 4:33 PM CDT
Hello all, sorry it took me so long to update Brandon's page. Brandon had his spinal on Friday and everything went fine. We also found out Friday that Brandon has shingles. He is on antibiotics for it and it is getting much better. They are all dried up now and are almost gone. Brandon gets admitted into the hospital for the weekend tomorrow for chemo and will get out Sunday. I will let you all know how it goes. Take care. Kathy
Monday, April 14, 2003 2:41 PM CDT
Hi everyone, Brandon is doing really well. He had an all day appt. Friday for chemo. He recieved 3 different types of chemo. He had a good weekend. He and Jordan went to their dads for the weekend and seemed to enjoy themselves. He goes in again on Friday for a routine spinal and intrathecal or IT chemo, which is where they replace the spinal fluid they take out with chemo. Everything else is about the same. Everyone take care. Kathy
Sunday, April 6, 2003 10:40 PM CDT
Hello everyone, Brandon is doing well. His hospital stay went as planned. He was released tonight around 6:00pm. He is still doing very well with his school work. He really misses going to school. Not sure on when he will be going back. As far as I know he won't start the school year next year. The protocol we are doing repeats itself so we will have to do the first 22 weeks of protocol all over again then after that 22 weeks he will have to have radiation so he may not be able to go back next year or at least not the first half to 3/4 of the year. Anyway, Brandon is doing well. Thanks for all the prayers. We really appreciate it:) Take care and God bless you all.
Sunday, March 30, 2003 10:01 PM CST
Hello everyone, Brandon and Jordan were with their dad for spring break so I really didn't have much to put on here. Brandon had an appt. Friday for a routine spinal. All went well and the test turned out fine. Boy was that a day. All 3 kids were there with me. It wasn't that bad though. Brandon enjoyed having Jordan there to play with. Brandon's counts are in the 1200 range and he is doing well. We are getting admitted Friday if his counts are still good. I will let you all know how that goes.
Wednesday, March , 2003 10:24 PM CST
Hello everyone, sorry I haven't made an entry in a while. It has been crazy around here. I haven't been on the computer much at all. Ernie just graduated from Airman Leadership School tonight and is now a Staff Seargent so with that going on and Brandon's routine hospital stay this weekend we have been busy. Brandon's dad came to stay with him during this hospital stay and Brandon seemed to enjoy it. Anyway, Brandon is doing really well. His ankle is doing a lot better. His counts are good. He has an appt. Friday for blood work and a round of chemo. Other than that everything is about the same. Thanks to everyone who has left messages for Brandon in his guestbook. Take care, Kathy
Sunday, March 9, 2003 12:50 AM CST
Well, I added a new pic of Brandon with his head shaved. Go and check it out. He is still doing pretty good. He got hurt yesterday, playing on the trampoline. He twisted his foot, but he is doing fine. Not much news to post just wanted to let you all know I posted a new pic. Enjoy and God bless. Kathy
Thursday, March 6, 2003 10:12 PM CST
Hello everyone, Brandon's appt. on Tues. went pretty well. He had his routine spinal and chemo and his spinal fluid was clear, so we are still in remission:) Everything is going pretty good. His counts are decent. His ANC is in the 2000 range. He has a really good energy level. He has been going outside and jumping on the trampoline the last couple of days. He is doing really good with his school work. His teacher informed me yesterday that he has an A in math and reading. So he is staying caught up with everything and is doing really well this year. I am so glad he is doing so well, I was afraid of a repeat of last year. He only gets 4 hours of home schooling per week and we try to make up for the rest. His home teacher is his teacher from his school so she knows exactly where he needs to be and tries to keep us on track with the rest of the class. We aren't scheduled for another appt. until next Tues. so we get Friday off to stay home and enjoy the day. Everyone else is doing pretty good except for the lack of sleep. Savannah is a night owl and thinks she doesn't need to go to bed until around 1 to 3 in the morning. I guess it is a good thing mommy doesn't have to get up and go to work in the mornings. I try to catch up by taking naps with her and sometimes Brandon even joins us:) He is soooo beautiful with his head shaved. I will try to take some pics of him soon and post them on here. But be patient with me on that...those of you who know me well, know how I procrastinate;) Well, night all. Take care and God bless you all. Kathy
Sunday, March 2, 2003 9:43 PM CST
Hello everyone, Brandon finally had a doctors appt. Friday after missing his appt. Tues. due to snow. His counts were good so we were told to stop the GCSF shots at home. So no more leg shots for at least 6 months. Brandon is very excited about that. He hates leg shots. I am also very glad we are done with them...I hated giving him shots almost as much as he hated getting them. We go in Tues. for a routine spinal to check his spinal fluid and put chemo in the spinal fluid. Then if things go as planned he should be admitted this coming Friday for chemo. Thanks again to those of you who are leaving messages for Brandon in his guest book...he really enjoys listening to what everyone has wrote. Take care and God bless. Kathy
Tuesday, February 25, 2003 3:21 PM CST
Well, we didn't get to go to Brandon's doctors appt. this morning. We got about 4 to 6 inches of snow and sleet overnight. We are going to try to go tomorrow if it doesn't snow tonight. Take care, Kathy
Monday, February 24, 2003 5:34 PM CST
Sorry it has taken me so long to update. Brandon's appointment went ok Friday. His new shot had to be done in 2 consecutive shots and he was not happy about that at all. He did really good with it though. He is so brave. The good thing that I found out this morning is that he doesn't have to have anymore of those shots for at least 6 months. I also found out this morning that this round of GCSF shots that I have to give him at home is our last round. We are going into the next phase of chemo and we don't have to do them anymore. I am so glad. I hated having to put him through that. We have a doctors appt. in the morning for blood work to see how his counts are. At Fridays doctors appt. his ANC was in the 6000 range which is good but the appt. Tuesday it was in the 42,000 range so it is going down really fast. Everyone take care. Kathy
Thursday, February 20, 2003 12:58 AM CST
Sorry it took me so long to update the page. I haven't been feeling very good the last couple of days.
Brandon is doing pretty good. His leg is still swollen. The doctor looked at it Tues. and said that he definately had an allergic reaction to his shot. They are going to have to change his shots to a different kind. I am actually glad they are changing to the other kind because it only requires one shot where the other required three different shots be given in a weeks time. Other than his leg being swollen he is doing pretty good. His energy level is pretty good right now, he actually wants to go outside and play. His counts were all good Tues. when we went in. I have to give him shots to boost his system and it looks like they are working. The nurse said that his system will start to go back down soon though. She said that it usually bottoms out around 10 to 14 days after the chemo. The last time, as some of you know, he had to be admitted into the hospital for 5 days for fever and neutropenia and he had to have blood and platelet transfusions...we are hoping that he doesn't have to be admitted again. I know some of you are probably wondering what neutropenia is, well it is where his immune system gets knocked down to the point where his body can't fight off infections.
Well we have another appointment tomorrow and I will try to update the site tomorrow and let everyone know how it goes. Until then everyone take care. Oh yeah, Thank you to everyone who has left a message for Brandon in the guest book. I read all of them to him and he is glad you are all thinking of him:)
Monday, February 17, 2003 10:00 PM CST
Well, Brandon had a hospital stay this weekend and everything went pretty well. His dad and stepmom came and stayed with him. He isn't enjoying his hospital stays anymore. He would rather be home. He is having a reaction to the shot they gave him when he was released from the hospital. He was in a lot of pain Sunday night and it started swelling. He didn't have as much pain today but his leg is still pretty swollen. I am going to have the doctor look at it tomorrow. I called the doctor on call Sunday night and he told me to give him Benedryl and Tylenol so we have been doing that. I will let everyone know how the appt. goes. Everyone take care.
Tueday, February 11, 2003 11:00 PM CST
Well, this is my first entry into Brandon's new website journal. I am creating this website to keep all of you informed on Brandon's condition and how he does on a daily basis. As many of you know Brandon was diagnosed with Acute Lymphocytic or Lymphoblastic Leukemia or ALL on October 22, 2001, and for those of you who don't already know Brandon had a Central Nervous System or CNS relapse on December 17, 2002. He wasn't having any new or strange symptums. We were in the clinic for a routine spinal when they found cancer cells in his spinal fluid. They did a marrow test the next day and there were no cancer cells in his marrow. We have had to start chemo all over from the begining. He is back in remission now and is doing pretty well. He was admitted into the hospital on Feb. 2nd for fever and neutropenia(neutropenia is when his body has a very low ability to fight off infection). He had to have blood and platelet transfusions because his counts were really low. He had to stay in the hospital for 5 days because his fever wouldn't stay down. He was released from the hospital on Feb. 7th. We took a huge step last night and shaved his head. His hair was coming out in clumps and he was getting tired of it being in his face and in his bed and all over him and he asked me to shave it so although I was very reluctant I did. He looks so cute with his chubby lil' cheeks and no hair:) We had a doctors appt. this morning to check his blood levels and his levels are really good. Actually some were a lil' on the high side. We are getting admitted Friday for a 42 hour hospital stay for chemo. He had a good day today, he went outside and played for a lil' bit. He actually jumped on the trampoline a lil' bit. Well, I will keep you all updated as much as possible. Take care and God bless. We appreciate all your prayers.
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