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Friday, December 24, 2010 5:52 PM CST Hi Babygirl! I just wanted to talk to you today so badly and remind you how much I love you. I didn’t make it to the cemetery this year to put anything on your grave. I know that many people cannot miss putting something on the grave of all the people they love, but for me, it just breaks my heart into little pieces and this year I couldn’t do it. Got all the stuff and planned to make you a butterfly wreath… When I am there, I get flooded with so much emotion and mixed up thoughts. You see, I cannot bear the thought that you are in the ground and if I go there, I have to push that thought away. I know that you are in Heaven with all the other wonderful Angels and not under the cold ground, but something about going there makes me sadder than anywhere else. Believe me, I am sad enough and miss you with every ounce of my being. The other feeling I have is guilt. When I don’ t decorate your grave, I feel like you might look down and wonder why you don’t have a pretty wreath like I usually make for you. I’ve convinced myself this year that you really couldn’t care less. Heaven is more beautiful and fulfilling than anything I can even imagine and you couldn’t give a hoot less what people put there.
Can you read my mind and see my tears? Do you know how much I want to shop for you? It’s funny, you are always 8 in my head.. Have you grown up in Heaven? I look at Michelle and Lauren and Em and Lyss and see how they grow and change and just cannot imagine what you would be like now if you were with me… Would we be best friends or would we argue and bicker because I am not cool enough? Would you be a rebel or a good girl? Long hair? Girlie-girl or tomboy? Whatever you would be, however we got along, I would love you more than you can imagine. What I wouldn’t give to hold you again. I remember holding your hand while we fell asleep and thinking to myself that there was no way you could leave me if I just kept holding your hand.
I’ve been asked what would I do if I had you for one more day.. One more day would never do. I want to relive all that your life was. Fix all my mistakes and do everything right.
I love you Kay. I miss you so much I ache. Save a seat for me in Heaven. Merry Christmas.
Wednesday, July 7, 2010 2:28 PM CDT So, here we are coming up on the day that marks the worst day of my life and the best day of Michaela’s. See, I have to say it that way to make it more bearable. Every year, usually twice a year, I sink into the pit of sadness. Directly after Christmas, near or on her birthday, and the weeks leading up to July 15th, I fall to pieces. It's ironic how much I love that Patsy Cline song... Anyway, each and every time I get to this point, I wonder why I let myself get this way. Today isn’t any different than any day last week, but today I feel like I just want to fall apart. Go to bed, bury my head and ignore the life that is going on around me. Nothing can make this better and today I can’t pretend that I haven’t lost my precious child.
On Saturday, Dave and I are going to see a clairvoyant in our area. I actually clean her home and after learning of her gift, asked her if she would do a reading with us and she agreed. I am hoping and praying that something will come through her to us that can bring us some measure of comfort.
Now, please people… I haven’t lost my mind and I don’t even know what I believe when it comes to someone’s ability to tell me about my baby’s after life, but if there’s a chance that I can have some contact with her, I want that chance.
Could I hurt worse than I do now? I doubt it.
Saturday, May 30, 2009 3:16 PM CDT Hi! Long time, no write. I should give up this page, but I won’t… I only hope that my use of caringbridge doesn’t keep someone in treatment from having one for themselves. I doubt that, so here I will stay.
So much has happened since I’ve last written. It’s not that we’re super busy, but rather that some much time has passed. So it’s time to catch up..
Dave is still working at Metso Minerals. He generally works at least 56 hours, but often more. The pay is great, especially in this economy, and we are very lucky. He took over as boyscout leader at the end of this year and really enjoyed it! He’s going the be the leader again next year and I am so glad that he and the boys have this together time without Mom in the way. I know that the boys are proud of their daddy and so am I! In Dave’s spare time, what little there is, he enjoys playing video games with the boys and just relaxing and watching TV. He actually has his own facebook page now and I’ve been surprised by some of his postings. It’s a great tool for me because he’s not big on having deep conversations about his feelings and he’s shared some there that I wouldn’t have know were going through his handsome head.
I recently got hired at Aldis and was so excited! I’ve always wanted to work there because I knew the pay was great for retail and was thrilled and quite proud to have gotten hired! They are pretty choosy and getting hired was quite the feather in my cap! However, it was not meant to be. I’m not big on passing the buck or playing the victim, but I worked there for 9 hours and came away rather beat up from the experience. I’ve not shared all that happened during the 9 hours with many people, but those that I did understood why it’s definitely not the place for me.
SO… on with Premier I go. I wasn’t planning on quitting them, but I was willing to put them on the back burning for a bit. That would have been a huge mistake! Where else do you make 50% to snack and chat with wonderful ladies?? Thank God for Premier! It’s an amazing company and I intend to build my future there! It’s been 2 years and with some increased effort on my part, I believe it will make a tremendous impact on our financial future! By the way,,, anyone wants free jewelry?? :O)
Nicholas and Daniel are my sun and my moon! They are so loving, kind and good hearted and I couldn’t ask for better kiddos! I am so glad that the dark cloud of grief has lifted for me, at least enough that I am able to see their love for me. Their last day of school is Friday and it can’t come soon enough for any of us! I hope their report cards don’t reflect the difficulty the four of us have been having fitting homework in… whoops… Both of my smarty pants boys were on the honor roll last marking period and I’m really hoping that they remain there for the last…
Well, that’s all I got about us.
Now, onto Michaela. My precious angel.
Please don’t think I don’t miss you every single minute of every single day.. There’s nothing in my life that would be better, brighter and more enjoyable if I had you here with me. However, you can’t be here. For whatever reason, God only knows and I hope to someday, your place is in Heaven. I accept that there’s nothing on earth that can compare to what you’ve got goin’ on “up there”. I pray that Jesus isn’t disappointed that I run passed him to your arms when I get to Heaven. Everyone better get out of my way cause I need my Michaela hugs!!! I have to admit that along with the acceptance I have found, I also have a relief. I’ve watched so many angels gain their wings and what was the hardest was the unknown. How much pain would be endured before they, and you, pass? I’m glad, really glad that there is no unknown anymore. It’s all very clear to me and I know I’ll be with you and I truly am grateful for that peace.
I love you, Baby Girl!
Momma
Friday, July 11, 2008 8:20 PM CDT Part one
Well, here we are. July 11th. True to form, the days leading up to losing Michaela are the worst. I’ve spent a lot of time in bed… and I do mean a lot. Sleep is my drug. It’s my coping mechanism and no matter how much I beat myself up, it remains my comfort. I haven’t been feeling very well and have had a sick belly, but well,,, I think it’s more of a sad heart than a sick belly that makes me seek the solitude of my bedroom.
I find it very funny when someone who has not watched their child die, tells me, in essence, to “suck it up”. They mean well. After all, it’s been 4 years, almost. After all, she’s in Heaven. After all, she’s not suffering. After all, I will see her again. And after all I have my sons and hubby to think of. It’s that bad habit that we all fall in that tells us we need to fix things for others. Listening doesn’t seem sufficient, but is more than that. It’s all we need. I safely feel that I can say this for all who have lost such a precious gift. Be it your parent, spouse or child, when someone suffers a loss so deep, all you can do and should do is listen. Don’t compare, judge, suggest or criticize. If you must do something, a hug would do well..
I just re-read all that I’ve typed and honestly, I didn’t know I was that frustrated..
I feel it’s safe for me to say that bitterness can sometimes creep up when you least expect it.. especially when you are remembering the last days of your precious child’s life.
Having read all that, you may find it surprising to read that I am doing much better. I’ve been reliving the last days with Michaela and the last few years without her and I can honestly see just how far we’ve all come as a family.
The biggest joy in my life these days, finally, are my boys!! How beautiful, loving and special they both are. They are growing and changing so fast and I am so sorry to have missed so much of their young lives. Whether due to their prematurity, Michaela’s cancer, or my grief, they have definitely been dealing with so much in their young lives and it’s all affected them. BUT, I think they are going to be just fine! Better than fine, they are going to be awesome! I see them maturing into such loving little men and I am so grateful! Every single night, when they run to me to give me a kiss and a hug goodnight, I thank God that he’s carried them through the turmoil and grief to a place of confidence and compassion that you don’t often see in other kiddos their age… Am I a little biased?? Perhaps, but most who know them would agree. Dave and I make beautiful little people and I’m so grateful that these two are here to stay. No matter how much I miss Michaela and feel a loss without her by me, I am filled with such a glad heart for having my sons.
Tomorrow, Aunt Kath and I will go get ourselves a pedicure in honor of Michaela. Last year Aunt Kath got her toes purple..or was it blue?? Either way, I’m not that bold. Kay and Kath can carry the wild colors… I go with a milder wine color. It’s a nice chance for us to set this time aside to think of Michaela and her love of all things girlie. Maybe I’ll get a flower or a butterfly painted on my toes… I could do that. We’ll see and I’ll let you all know in Part 2.
Thanks for still caring and still checking in on us. Sorry to be so blunt and cranky in the beginning. As usual, I never know what I am going to say/type until I do it.
There’s much to say, but it’s time to fold laundry and hit they hay. Gotta get up early tomorrow for my girlie date with Aunt Kath.
Blessings!
Tuesday, April 29, 2008 3:48 PM CDT
I want to leave you something.
Something much better than words or
sounds. Look for me in the people
I've known and loved or helped
in some special way.
Let me live in your heart as well as
your mind. You can love me most
by letting your love reach out to our
loved ones. By embracing them
and living in their love.
Love does not die, people do.
So, when all that's left of me is love,
give me away as best you can.
Monday, February 18, 2008 11:54 AM CST
I am in the pit now. At least I guess I am. Sometimes I wonder if the pit isn't just an excuse to be less than I should be. Anyone ever feel that way? I mean really.... do I want my child back only to suffer? No. So what do I want?? I can't quit life, but I sure have been sleeping through more than I should be. Literally, I can sleep upwards from 16 hours....
I try to be positive.
Think positive thoughts.
Say positive things.
Be proactive in my life.
But, most of the time, I am faking it. Some days I can even convince myself that faking it might lead to living it. It hasn't yet. At least not for any stretch of time. Yet.
I don't cry as often. I can laugh from the bottom of my heart. I love my kiddos and can enjoy my job, but quite often I don't chose to.
Getting out of bed is difficult. Wanting to get out of bed is impossible. I feel lazy and old and pathetic.
I prefer not to answer the phone, even when it isn't bill collectors which isn't often.
So I don't answer it much.
If you saw me you'd never know I feel this way and who knows maybe I wouldn't at that precise moment....
I comes and goes. I wish it would stay away.
I wish Michaela were here.
Sunday, October 14, 2007 4:32 PM CDT A dear friend of mine wrote this for another mom, but I have edited portions and taken it as my own. I know she doesn’t mind.
alone
in this room i sit
quietly
for who knows how long
with busy family
and busy mind
across from me
i see shadows
i know that they are always with me
waiting
ever waiting
for me to address them
to allow them to have their say
feelings
of such profound loss
and sorrow
are NOT
so easily embraced
while the world
loves me
when i'm smiling
and so do i for that matter
because then
i am too busy
i am the artful dodger
but even then
the shadows weigh on me
weigh upon my heart and soul
they cling to me
whispering always
a truth
i am too frightened to know
if i can drive myself
into oblivion
then i may not have to face
that i have lost one of my babies
it should be profoundly obvious to me
going through
every step with her
her walk
her burden to bear
childhood cancer
i watched her from infancy
i revelled in this beloved to me
i watched her live
i watched her fight to live
and then
i watched her die
but still
if i can stay ahead of it
i do not have to think of it
perish the thought
i have pictures in my heart
of her when things were all joy
i do not want to walk into a room
and take all of the sunshine out of it
for indeed the shadows cling
and they wait
people do not understand
nor to most even wish to
for the loss is too profound
too unimaginable
parents should not have to bury their children
children should have to bury their parents
but still the shadows wait
they call like the siren songs in the mist
so here i am
sitting across the room from them
because i have locked them out
my very being
shrieks at the shadows
to leave me alone
to not make me sit under their counsel
for if i do
my beautiful one will be lost to me
and it feels so final
to be cut off from one
who was once joined to me
so intimately
i held her within my own body
and then with out
how can i begin
to accept the finality of her being gone
how can i face
the howling broken thing
that i am become
how can i let the grief have me
and bring upon me insanity
though truly i know
that pasting a smile upon my face
and continuing on
is the true insanity
the insanity that society demands
pleading
who will make this right?
this that is so wrong to me
such an offense
to everything within me
if i embrace the shadows of grief
there shall i be
like so many other souls
crying out
How Long O God
How Long
the truth too horrible to bear
that my beautiful one
now resides in another land
one i cannot get to
until my time
and now it is she who leads me
while i wait
in the hope
that the day will come
when i shall close my eyes in this world
and wake up in hers
Monday, July 9, 2007 3:05 PM CDT I’ve confessed before that this is now my sounding board. It should be about Michaela, but has been about me and my feelings for quite some time now.
This is what I refer to as Hell week. I don’t know what to do with myself. I don’t know how to stop the rollercoaster. I don’t want to feel this way, like a broken toy that only sometimes works. I can have fun and add joy to my world most of the time, but not lately. How can I keep feeling so much heartache and continue? I argue with myself, chastise myself and try to make sense out of my feelings, but I feel like I am a constant contradiction.
I love my sons, but don’t want to deal with them.
I love my job, but don’t want to go there.
I love my home, but don’t want to clean it.
I love my friends, but don’t want to be near them.
I love to talk, but don’t want to answer the phone.
I’m equally grateful to Dave for being so strong as I am jealous.
I don’t want Michaela back, because I know the pain that she suffered, but can’t stop missing her.
I feel like a cosmic joke. Why did God bless me with 3 children? One he took back after such an excruciating battle with cancer and twins that only have half of a mother. Sometimes they have a fun mom… a cool mom that tries to give them a happy life. Other times they have a mom that they know has a broken heart because of missing “Sissy”. It’s so unfair that they have to live with this for the rest of their lives. Hell, they struggled to live too for the first 6 months of their lives. We’re blessed to have them, but so often,,, I just want to bury my head in the pillow until the rollercoaster stops.
Why can I be so OKAY sometimes and so lost another? I’m sick of the pity party that I give myself, but I hate too when I am reminded ~as if I could ever forget~ that I still have Nick and Dan and Dave that need me.
Dammit, I don’t want to be needed. How about that? Selfish enough for ya? I don’t know what to do. Who am I talking to? Are you all wondering if I’ve stepped over the edge? No, I’ve been here before, just never put it down for viewing. You don’t need to call crisis intervention… I’ll come around… We, those with angels, always do. I just want to know how to be me all the time.. the me that I like to be. Even when I am doing well, I am still sad. I still cry and suffer and feel like I lost my best friend, but I manage. What is so different now and why can’t I just deal like I am supposed to.
Yup, it’s been three years on the 15th since I held my baby girl. I miss her and I love her and I want to make her proud. I know I’m not doing it today. I’m tired of being angry and empty. I’m tired of faking it.
You witnessed Michaela’s suffering and now you are witnessing mine. Neuroblastoma is the gift that keeps on giving.
I’m sorry. I’m sure I’ll regret posting this. I’m almost ashamed to share this. It is what it is, but luckily most never know such pain.
God give me strength to get through this quickly and give back the mom the boys deserve to them.
Tuesday, June 5, 2007 5:00 PM CDT Hi All! This has been a long time coming, but I still struggle with the fact that this is supposed to be Kay’s page and she’s not with us… I guess, if I’m honest, it’s always been mostly my musings anyway… Anyhow, the lack of updates isn’t due to lack of happenings in our life. I’ll try to catch you all up…
The boys have one more day of school and then it’s summer vacation! Dave is, as I type, out leveling out the ground so he can put the pool up. I guess we are getting a bit of a late start, but it seems like every time Dave would get an opportunity to work on getting the ground ready, it would rain! :( He also had to patch a hole in it so join me please in crossing my fingers that the patch will hold! I’d hate to shell out for another pool, but not as much as trying to make it through a summer without one.
I am very anxious to see the boys report cards tomorrow. All year I have received nothing but glowing reports and we are so proud of them. Nicholas was actually referred to as a role model for his friendly and kind behavior. They had a slow start in reading this year and received extra help until this last marking period, now they are both where they need to be. Hopefully, we can remember to make time to read regularly this summer so they can stay on track. If you have an opportunity, please remind me that I just said that… I have the best of intentions, but almost never do as I plan to. Both boys played soccer this year too. That was a bit trying… neither one really took practice too seriously and I have a hard time standing silently by when they aren’t showing respect to their coach. The funny thing was that when it was game time, they all really pulled together and did well. They only won one game… but they did play well….. REALLY! :) Honest..
I’m still working at the Dollar Store and I still love it, but I just wish it paid better. I never worked as hard in my life, but I love the customers and my coworkers. I’ll have to cut my hours this summer to be with the boys, but the manager is willing to work with me. That makes it nice.
Dave is working tons of overtime and still likes his job. His hours are long, his work is hard and he is so tired at times. I wish he didn’t have to work so hard, but he never complains. I did spend a good bit of time this winter looking for a good paying job for myself, to take a bit of pressure off of him, but had no luck. I’ll try again in the fall. It gets very discouraging to have so many applications in and not get anyjob offers. I guess I am meant to be home still with the boys and when the right job comes up, I’ll get it.
Missing Michaela is a constant part of life. It’s funny how rarely her name comes up sometimes. Some people talk of her regularly, others.. not so much. I think people don’t want to open up the wounds. The trouble with that theory is that the wounds don’t heal. We learn to live with them, but they never close. I live with tears that are waiting for an opportunity to fall, not for Michaela, but for myself. The void her death left is overwhelming at times and I have to remind myself that I will see her again. We are apart, but a reunion will come. Still, I can’t help but wonder what her report card would say? I should be getting 3 children off the bus tomorrow waving their report cards at me. I remember one of her few parent teacher conferences, we were informed that she was a bit “chatty”. That was our social butterfly. I wonder if she would have been more studious as an older child. I wonder if she would have been a soccer player or a cheerleader? Both??? How would we keep up?? Would she still love cinnamon toast crunch cereal, Dr. Pepper soda and broccoli? I bet she would and I bet we would spend lots of time cleaning cereal bowls and soda cans out of her room too. She was messy, just like me…
One thing I do know is that she would have really enjoyed what we have planned for June 16th. We are having an Alex’s Lemonade Stand on that day! If you aren’t familiar with this, you need to go right now to their webpage and learn about it. It’s a wonderful organization, began by a beautiful little girl that was battling neuroblastoma just like Michaela. Sadly, she didn’t make it, but her legacy lives on and exceeds all her expectations. Here’s the link… check it out please. http://www.alexslemonade.org
The plan was to have the stand on “Lemonade Days” which is this week, but Lancaster is having their relay for life. I thought it better to have it the following week.
The Dollar Store that I work at and the neighboring business, Furniture That Fits, are allowing us to do it in the parking lot. Michaela and I were supposed to do one when she was in treatment, but she just didn’t feel up to it and neither did I. Now, I finally think I am ready. So far, we have the lemonade, the water, the ice, the cups and the location. Now we need to get the word out, get balloons donated and decorations made. Of course we also need as many volunteers as possible. I expect it to be a very hot day and I’m hoping to have enough volunteers to have everyone responsible for ½ hour shifts. The stand will be running from 10-4 , but that’s not counting set up and clean up. If you have any ideas, contacts or time to offer, drop me a line by email, please! This will be a very special day to remember all the lovely and brave children afflicted by cancer. Our stand will be in honor of Brandon Loose and in memory of Michaela Ann.
Well, I guess I’d better close here. Come out and see us on the 16th and tell everyone you know. The kids are counting on it and the angels are watching.
Blessings,
Kim
Monday, January 1, 2007 11:00 AM CST Although I cry a lot, few things make me cry. My tears are usually not prompted by anything that I can put words to. They come when they come and can’t be predicted or controlled. Perhaps I have been numbed some by grief. Maybe I am over-medicated, but gifts and sentiments that would have brought me to tears before Michaela became an angel, don’t now. My tears are a product of my mind. Very little outside of my memory of Michaela can cause a break down.
Today I was checking on one of my cancer kids~ http://www.sydneydungan.com Sydney’s Father began Lunch for Life. After I enjoyed her dad’s diary and his hilarious story, I clicked on the link taking me to Lunch for Life~ http://www.lunchforlife.org/home~. I followed that to the Giving Tree that he uses to track donations made in memory or honor of our kids. I truly expected to find zero ornaments on Michaela’s tree. After all, I didn’t mention the tree or Lunch for Life this year. Michaela’s been in Heaven for over 2 years now… People wouldn’t still, so selflessly, without being asked to, donate in her memory??? Yet, to my amazement and pride, Michaela Ann Mease has 51 ornaments on her tree!
I really don’t know what to say, except thank you!
Thank you for remembering her and contributing to a charity so crucial to finding a cure for Neuroblastoma. Because of these donations in Michaela’s memory, we are closer to saving another child’s life and that’s priceless.
Thank you too for beginning my New Year with tears of gratitude and hope.
Happy New Year to us all!
Love,
Kim
Wednesday, December 13, 2006 11:17 AM CST Wow, this has been a long time coming. Since September, the boys have been doing very well. They are sweet, smart, creative and devilish! Both are getting good reports from school and love going. They are both getting extra help with reading, but I can see amazing improvement since the beginning of the year. Both are Tiger Cubs in the boyscouts and Dave is a co-leader of their pack. All three of them look forward to Tuesday nights!
I guess I am still getting accustomed to being a working mom. I want a wife. As you know I started my job at the Dollar Store in October. I really love working there and I have to say that I think I am really good with the customers. Rarely do I get a rude person and when I do I try to kill them with kindness. The pay sucks, I'm sure I mentioned that before and I have a hard time working so hard and liking a job that pays so little. The ladies that I work with are die hard workers. I have to tell them to take a break! It's crazy. They bust their asses for no money and never really complain. These people work when they are sick. I called in sick the other day and noone knew what to do?? Apparently, noone has ever done that before??
Anyway, here I am. I couldn't wait for Black Friday so that I could officially begin the Christmas preperations. I thought, key word~thought, that I would enjoy Christmas this year. So far, that's not the case. As usual, I've done the minimal amount of decorating and didn't have fun doing it. If I send Christmas cards this year, it will only be to those that send me one and the cookies will be slice and bake at best.
I've yet to make Michaela's Christmas wreath and don't want to. It pisses me off that I am decorating a grave instead of supervising her and her brothers decorating the house. So far it doesn’t appear that my lack of enthusiasm has been noticed by the boys. They are loving everything about Christmas and all the preparations. Dave and the boys even made gingerbread houses while I was at work. I allowed them to decorate the tree. They didn’t know how difficult it was for me to give up that responsibility. When I explained to them that I would have never left their sister do it alone they felt quite special. See, I’ve always been anal about my tree and had to have it my way. I try not to have too many regrets about the way I parented Kay, but that is one of them. I should have let her do whatever she wanted… I’ve also decided to allow the boys to help me wrap this year. It should be interesting. I’m trying to find joy, but it’s a difficult search. I can’t ask for my real Christmas wish, it won’t come true. Thank God, and I do, for all three of my Mease men. If anyone can help me find joy, it’s them.
So.. here I am in the grief pit. I slipped and fell from someone's marbles. Perhaps they are my marbles. I've lost them some time ago and don't recall what they looked like... Perhaps I’ll find they are my marbles and find my way out of the pit sometime before Christmas.
Thank you for caring enough to read my pathetic musings… Sarcasm aside, it’s terribly kind of you to still care enough to check on us. We have been blessed by kindness beyond our imagination and we are grateful.
K
Wednesday, September 20, 2006 1:47 PM CDT Hi,
I've been thinking a lot about Christi and her family. I've felt as though I knew this family. They have been in my heart for years, but I never met them. I'm sure some of you, know what I mean. Even if it isn't Christi, we all have children that we are particularly attached to. All our children are special, but you know what I mean.
For me Christi put me in mind of Michaela every time I looked at her picture. From infancy to death, I could see Michaela in her. They were different in many ways, but similar in many more. I swear I was literally looking at Michaela's hands when I looked at Chrisit's hands in her mother and father's.
For Angela, she is the type of Mom that I would like to be. I admire her for her energy and luster and strength. We too are quite different, but I felt her pain... Literally felt it. Still feel it.
You'd think losing my girlie would make anything else I witness or experience pale in comparison and therefore not hurt... Not so. Each child, each family has the potential to break my heart. Yet, I can't turn away. Where would I be today if you all turned away from me? This isn't exactly a bucket of joy that I am throwing at you with every journal. This is some tough emotional stuff. Stuff I guess we all need to understand so that we can find the sun beyond the clouds.
So today I didn't want to get out of bed. I was emotionally exhausted, but convinced myself to get up. Beyond that, I had no intention of doing anything, but I decided to try to do something that made me happy. I decided to work on my piggies. I've been wanting to build them a new home and started working on that. I had to make a quick trip for some supplies and was shocked by the weather. It's absolutely beautiful outside. A true September day to be cherished. I have to think that the day is so beautiful because the angels are celebrating Christi's arrival. Just like I believe Michaela "paints" the sky for me to let me know that she's okay....
Silly huh? I've always had a strange way of looking at things. This is one that serves me well, so I think I'll keep it.
Now, please bear with me. This is going to get long, but we need to know this. I promise, next entry will be fun. Something about the boys, all three of them and their adventures in Cub Scouts.
September is Childhood cancer awareness month. Did you know that?? I bet some of you didn't even though you obviously care for an angel and her family. See, that's part of the problem. We don't have enough awareness. NO PEDIATRIC CANCER is recognized nearly as much as it needs to be. Here's some info that I've stolen from various sources. I'm sure that they won't mind. They feel like I do. Something needs to change.
Neuroblastoma is more common than you think!One in every 330 Americans will develop cancer by the age of 20 The incidence of childhood cancer has increased every year for the last 25years.Neuroblastoma is the most common cancer found in infants.Neuroblastoma is the most common solid tumor cancer in children.There is no known cause for neuroblastoma.No one is immune.It can strike any child at any time.Neuroblastoma is more deadly than you believe.Cancer is the leading cause of death from disease in children between theages of 1 and 19.Neuroblastoma has less than a 30 hance of survival when evidence atdiagnosis shows that the disease has spread.Cancer remains the number one disease killer of America's children - morethan Cystic Fibrosis, Muscular Dystrophy, Asthma and AIDS combined.There is no known cure for neuroblastoma.It kills every day.And, it doesn't have the funding!The Children's Oncology Group, the world's largest childhood cancer researchorganization, treats about 90 f the children in North America yet itreceived less than half of its requested budget from the federal governmentlast year.The National Cancer Institute's (NCI) federal budget was $4.6 billion. Ofthat, breast cancer received 12 prostate cancer received 7 and all 12major groups of pediatric cancers combined received less than 3 lthough there are 15 children diagnosed with cancer for each childdiagnosed with pediatric aids, the U.S. Devotes approximately $595,000 forresearch per victim of pediatric AIDS, and only $20,000 for each victim ofchildhood cancer.The American Cancer Society spends less than 2.5 f its annual budget onpediatric cancer.For every dollar received through federal grants and private donations forpediatric cancer, less than $.03 goes towards funding neuroblastoma researchgrants, awards, and fellowships.We can do better!
Bruce Prescott's daughter, Shelby, a kindergartner at Gwin Oaks Elementary School, died two months before her sixth birthday after struggling with the childhood cancer neuroblastoma. Prescott says not one drug used in her treatment was designed specifically to fight the disease.
The American Cancer Society's Relay for Life is the world's largest fund-raising relay event, with more than 4,500 events in the United States and additional ones in other countries. In Georgia, there are more than 150 events. Gwinnett County's is the largest Relay for Life event in the world.
More than 3 million Americans will participate in relay events this year in honor or memory of a family member or friend affected by cancer. They will spend countless hours and donate more than$400 million with the expectation that their time and money will get us closer to a cure for cancer.
But which cancers will benefit from that money?
There are roughly 100 different types of cancer; each one takes different drugs and treatments or different combinations of the same drugs and treatments. As with any other financial entity, the American Cancer Society budgets its income (donations) according to the largest need down to the smallest need. There will be about 1.4 million adults diagnosed with cancer this year. In contrast, there will be only about 12,500 children diagnosed. Also like any other financial entity, the American Cancer Society and Relay for Life look for creative ways to promote their cause in order to maximize the inflow of funds.
Gwinnett County raised nearly $2.3 million dollars in its relay last year, with 1,716 cancer survivors participating and 10,000 people taking part. The Gwinnett school system donates the most money — more than $1.1 million. Ninety-five percent of Gwinnett schools participate.
To promote the relay, organizers search for "Honorary Chairpersons" — people who have battled cancer and survived or are still battling cancer, but are survivors! The honorary chairpersons are presented at a large kickoff pep rally with guest speakers, recording artists, testimonials and all the fanfare. They're paraded across a stage for all to see who we are fighting for. We want to help these people! At the 2003 relay, my 4-year-old daughter Shelby was an honorary chairperson. There were 20 that year — 19 children and one adult. Shelby was the youngest.
Shelby was diagnosed with the childhood cancer neuroblastoma on Nov. 30, 2001. Only about 600 cases (some reports say 1,000 or more) of neuroblastoma are diagnosed each year. Half of these children will die within five years. Since Shelby participated in the Relay for Life, I have learned a lot about the distribution of donations within the cancer world.
As I mentioned before, the cancer society distributes its funds according to the greatest need or the greatest number of patients affected. According to the society's funding chart for 2002-2003, $132 million was given to cancer research — and only $7 million of that amount was given to childhood cancer research.
Donations for the same time period were nearly $1 billion. The other $868 million went to cancer awareness programs, group counseling, seminars, resource guides and many other help programs, as well as smaller amounts for fund-raising efforts, salaries and other administrative expenses.
One side note: When we tried to get a brochure on programs for children diagnosed with cancer, there wasn't one.
Anyway, back to the distribution of funds. Based on the above breakdown, if you had donated $100 to Relay for Life hoping to show your support for the honorary chairpersons, $12.50 would have gone to research adult cancers, while only 70 cents would have gone to childhood cancer research. How much of that 70 cents would be for neuroblastoma research? None!
Let's look at this from another angle. Gwinnett Relay For Life's group of honorary chairpersons was 95 percent children, but only 0.70 percent (that's right, less than 1 percent) of the donations would go toward childhood cancer research.
I think there's something wrong with this picture. Don't you?
I'm not trying to get people to stop donating and participating in Relay for Life. The American Cancer Society does a lot of good for the adult world of cancer.
But if you see a bald child suffering from cancer and feel compelled to help cure childhood cancer, please research organizations that put children first and support those organizations.
When Shelby was first diagnosed, the drugs used in her protocol were all "hand-me-down" drugs developed and tested for adult cancers. Once they went through the five to 10 years of testing to be FDA-approved for adults, they had to go through another five to 10 years of retesting and reapproval for use in children. Not one drug that was used in Shelby's treatment was designed specifically for neuroblastoma — or any other childhood cancers.
If childhood cancer is your priority, here are just five of the many organizations I would recommend:
• CURE Childhood Cancer
• The Aflac Cancer and Blood Disorder Center at Children's Healthcare of Atlanta
• CureSearch/National Childhood Cancer Foundation
• The Children's Neuroblastoma Cancer Foundation
• St. Jude Children's Research Hospital
These organizations are strictly dedicated to childhood cancers and other life-threatening diseases in children.
You may think I'm biased because I'm the parent of a child with cancer. I also am the husband of a woman with cancer. My wife was diagnosed with breast cancer in October. Her mother died of breast cancer seven years ago. There is a huge need for funding in all areas of cancer research, but please take the time to pick the right organization to put your money into.
If it's breast cancer research or colon cancer research, by all means, get a team together and walk in the relay. But don't walk in memory or honor of a child. It will only be a waste of your time and resources.
• Bruce Prescott, his wife, Faith, and their son, Steven, live in the Snellville/Lilburn area. The family has lived in Gwinnett for 15 years. Mr. Prescott is a sales associate for a commercial cable TV equipment distributor and an active member of Smoke Rise Baptist Church in Stone Mountain.
The Prescotts' daughter, Shelby, was a kindergartner at Gwin Oaks Elementary School. She died Oct. 22, 2004. She was two months shy of her sixth birthday.
Now, I ask. What do you think? What can WE do? I'd love some feedback.. Please??
Love and Thanks,
Kim
Sunday, August 20, 2006 10:53 AM CDT Long time, no write.
It's not that I don't have anything to say, it's more that I wonder if this is still the place to say it. This is, after all, supposed to be about Michaela. More and more, it's about me. ( Let's just pretend that it wasn't always about me, okay?) Anyway, I wonder what do people really come here to read? Are parents reading to remind themselves how fortunate they are to have not lost a child to cancer? Are parents that lost their child looking for validation in their feelings and struggles? Are parents in the fight with their child here to make sure that they keep their feet planted in the reality that the prayers that they offer up everynite for their child might not be answered the way they hope? Or do you all hope that I might have a funny story to share? Could it be that my family ~hi dad~ check in to see how I'm really doing?
I know we get many visitors, many more than actually sign the guestbook thank God. If only the people that signed the guestbook checked in on us, I'd feel like a complete idiot sharing my feelings here. Thankfully, I can see the hits and hugs go up and up and up and I know that my sweet Michaela isn't forgotten and neither is the rest of her family. It's an awsome gift that I am not ready to give up~yet.
Since I last wrote, we marked Michaela's anniversary in Heaven. Although we didn't have a formal plan to mark the day, I believe she is pleased with the way we spent the day, especially her Daddy. Dave and I decided that her Make a Wish fishtank, that she loved so much was in dire need of attention. We also agreed that, even though it would be expensive, she would really appreciate it if Dave took the time to completely tear down and re-set up the tank. That is how Dave spent the weekend and it still looks amazing! Nicholas and Daniel and I took her flowers and a balloon and talked to her for a while. I don't know if the boys are finally "getting" it or if they took their cue from me, but they were unusually quiet and sad during this visit. On the way to the cemetary, I wondered since it has been two years, if anyone would remember the date. I was torn between the fear of noone remembering her and the sadness I would feel if I wasn't the first one to give her flowers on her day. Turns out I was the first, I don't know if I was the only. It doesn't matter, right? On one hand, I feel "upidstupid" going there when my faith doesn't allow me to believe that she is there. Why then do I leave flowers and talk to her there? Is it so others know I didn't forget her? Round and round I go. See "upidstupid"! I talk to her daily from my heart, but when I go there, I actually make sounds come out of my mouth. What's up with that? Whatever... I guess I kinda went off on a tangent there~sorry.
We also marked my 39th birthday and if I don't soon start looking better I'm gonna be very unhappy! I had come to believe that I would only improve with age. Of course, I was believing this when I was 25. Never mind that. I still feel 17 and wear a size 12. I still think I can turn heads when I enter a room and it isn't because the floor shook. I guess that explains the shock and disbelief I feel when I see pictures of myself. Denial ends when the pictures are developed... ICK! I really am a thin, spunky, sexy, vibrant and strong woman stuck in this overweight, tired, aging body!!!! I have to believe that I will get out. Look at Oprah. That woman was "fugly" and fat, but look at her now. She's only ugly without makeup~haha. Maybe that's what I need.... hmmmm makeup and Jenny Craig.... Anyway, I just really, really wish, my outside would reflect all the growth that my inside has struggled to attain. Or does it? Perhaps that's why I am too tired to put on makeup and my bra?? And why would I want to deny myself the pleasure of eating whatever I please? After all I lost my best friend.... Excuses, excuses... How long until I have the power to be all I can be? My appearance was on the decline long before I lost Michaela. I couldn't stop the train from running off the track then, how can I now? Enough of that boohoo crap.
Nicholas and Daniel celebrated their 7th birthday at ChuckECheese and had a blast! They definately enjoyed it more than any party we've ever had at the house and I was so glad. It's strange because they have never like ChuckE himself, they just love to play the games. I can't believe my babies are 7 years old!!!
Check back to see how my big first graders made out on their first day back to school on th 28th!
Tuesday, June 13, 2006 8:00 AM CDT Last night I made a huge mistake.
Last night I gave the boys their summer haircuts.
The same as I do every year.
This year it turned out to be a shaved heads.
It wasn't a mistake with the shaver, it was the way that they wanted it.
It wasn't the cut I would have wanted for them, but it sure was cheaper. As I shaved their heads they ran into the bathroom to see how funny they looked half shaved, front only shaved, etc. It was a hoot! At one point Daniel looked like an old man with a combover. Too funny!
What I didn't realize until watching my boys sleep is how often my heart would skip a beat and it would take me back to looking at my angel sleeping.
I thought I saw her pouring milk in her cereal too.
They love their haircuts.
I wish I could take it back.
Since I can't I guess I need to thank God that they wanted shaved heads and didn't receive it as an unwanted birthday gift like Michaela did.
They are getting a swimming pool Thank God!
On a more positive note, I have begun a new support group and I'd like to invite anyone who is interested to check it out. The name of the group is Angel On My Shoulder. There is no membership requirement except to have been touched by pediatric cancer of any kind. We are also open to anyone at any place in the journey. If you aren't mourning a loss, that's wonderful and we hope you never do. We'll meet you where you are and it's my hope that we'll be able to help each other along. I've been truly blessed by my Neuroblastoma support group. It was a wealth of information and support for me, but I believe there is room and a need for a more all inclusive group. A place that addresses the fear, frustrations and yes, the blessings that come with a pediatric cancer diagnosis. This isn't only for angel parents either, heck, this isn't only for parents. We tend to be more of an emotional support, but if there's medical advice to be given, we'll give it too. I want to help others through the journey I've already made. I know it's what my angel Michaela would have wanted. If you have a need to share your story, we are here. Please visit us.
http://groups.yahoo.com/group/angelonmyshoulder/
Love,
Kim
Thursday, April 6, 2006 3:02 PM CDT It seems that it takes me longer and longer between updates. I think about posting everyday. To be honest, I've know exactly what I would write today for at least two weeks. It's just like anything else I guess. It's just hard to get started.
We are all doing well. Dave is working very hard, but enjoys his job. I am trying to be a decent homemaker and most days I meet the goal~ if only minimally. I see the boys thriving and would like to think that is because I have the good fortune to be home with them. Not that most working mom's children don't thrive, but I know I wouldn't have nearly enough to give them if I still worked. I'm just not that strong anymore. Not yet anyway. Maybe when they are in school all day I will be able to return to work... that would be good. Anyway, the boys just began soccer last Saturday and they really enjoyed themselves! It was quite fun watching them learning how to play and I really enjoyed watching Dave help the coach. It's awsome the way he just jumps right in and does what needs to be done. He did the same thing at wrestling. I was quite proud of "my boys"! I think I'm gonna love watching them play sports and I hope they continue to enjoy it!
As the boys get older the thought of giving them each their own room crosses our mind and lips more often. Michaela's room is just how she left it. The only change is that is where I keep all the cards, keepsakes and funeral items. I don't know where I will keep them, but it's getting quite close to becoming Daniel's room. The boys need time apart and space to call their own and it's time. I know, without a doubt, that there will be many tears shed as we pack up Michaela's clothes and toys. I've already gathered all the cute little things that she never even had an opportunity to play with and she had some brand new bandanas too. I will be taking these things up to Hershey some day next week. That was easy. I always feel better when her things are getting a new "home". It's the items that I don't know what to do with that cause the most tears so far. Oh and painting over the dragonflies and butterflies that we stamped on her border.... I dread it, but I think it's almost time.
Many people know that I belong to 2 groups that support neuroblastoma families. One is mainly for the children still in the fight and the other mainly provides support to us grieving. Some days it is so hard to belong to either. Too many children die. Too many families missing their sweet children. Somedays it can really be too much and I break down. I've been asked why I don't just "take a break" from these groups, and to be honest, I've considered it. Then someone asks a question that I can answer or a parent feels alone in their grief and I can tell them that I feel the same way and we help each other. I guess that's what it's always been about, but when I was in the fight with Michaela, I used it as a tool. Now I use them both as a coping mechanism. Some days I will admit that I don't cope as well as other days and I know it's hard on the ones that love me to witness this. A dear friend from my angel groups put together a calendar of all the neuroblastoma angels to be remembered. She has an introduction on that page and it's like she took the words right out of my mouth. With her permission, this is what she wrote. Thanks Denise.
The biggest fear of a bereaved parent is that our son or daughter will be forgotten.
It is difficult to put into words the depth and intensity of the pain, hurt, and despair we feel each day the world continues to progress when it feels as everything should have stopped with the life of our child. Not only do we grieve for our child, but also we grieve for the future of our child and all of the "what should have been" of our futures together. Family vacations, holidays, birthdays, the advancement from one grade to the next, dances, high school graduation, college choices, wedding, their children, and the so simple joy of living out our lives together are all denied.
The first year can feel like living "numb", and life takes on a very surreal quality. Everyday we "know" in our heads that our child died, but our heart hopes against hope that somehow it is all wrong and maybe tomorrow we will wake up and find it was all a very horrible nightmare. This incongruity between our head and our heart is very normal. There are so many "firsts without our child" that occur during the first year after our child died, and they are all very painful to live through: our first family photo, first family vacation, first birthday, first holiday, and, even more difficult, the first day, week, month and year anniversary of the day our precious child died.
Some of us struggle with the "right" way to mourn our son or daughter. I have come to learn there is no "right" way. However, I have also come to learn that there is a wrong way, and that is not to mourn our child. Society is very hard on us in that we are expected to "get better" or to "move on". The intensity of our grief on some days builds up to others, until finally there is a small release of some of the pain. However, this "release" seems to be just enough to allow us to carry the rest of it around without succumbing to it completely. On one hand, we can't live with the intense pain of missing our son or daughter every single day, and on the other hand, we cannot live without it. To live without it seems to be "accepting" of the fact that our child died. Although we have to live with the fact that our child died, we rarely "accept" this fact easily. As more time continues to pass we will cope differently, and hopefully better. The best sources on grief teach that although the pain and intensity of living without our child will change, this grief and mourning will remain with us for the rest of our lives.
We share our lives with other families who have also experienced the stunning loss of a child, grandchild, niece, or nephew. We remember one another and "our angels" on special dates, like birthdays and eternal life dates. We support one another as we each make our way through the horrible grief. No one can really understand, except those who have gone through very similar circumstances. We all wait for the day when we can see our loved ones again in heaven. Until then we try to hold one another up in the initial staggering grief, and and we try to encourage one another as we learn to live without our angel, bit by bit, and day by day.
To see the calendar I spoke of or to meet Denise and her Angel please visit~
http://www.ourangels.personspages.com/
Thanks for stopping by and trying to understand. It means the world to know that Michaela isn't forgotten and that our family is still thought of as well.
Happy Spring!
Kim
Friday, February 10, 2006 10:40 AM CST
I think I may have something to share that will seem very, very strange.
I shouldn't feel the need to preface this with disclaimers, and I don't worry about being judged, but I do worry about being offensive.
You all know that I love Michaela and miss her terribly. I have no regrets about the decisions that we made throughout the battle she fought against NB. My only regret is that she had to fight it.
What you all may not know is how many families I follow that are still in the fight.. One family that I've followed the longest, is Christi Thomas'. I remember her trip to Japan and the odds that were against her 2 years ago. Christi's future looked grim then, but thank God, she rallied and has led a wonderfully full life. I know her parents make only the best judgements for her and I can't say I wouldn't make any of the same.
Within the last few weeks, Christi's neuroblastoma has raged back and now she struggles again. It breaks my heart to witness. There are many others still fighting and losing.
Christi is just one of many that I follow. There are so damn many others at different points of disease and I wonder how much more I can take. I've been told to leave the list by those that love me and I've I've considered leaving the list, but I can't do it. These families are in my heart!
I remember Michaela's beautiful smile one minute and the next, I recall the lump between her eyes and the bruises underneath... How fast our lives changed. It breaks my heart to watch these children suffer!
Having said that.
I've been really watching Christi struggle lately. Christi's disease is in her skull and elsewhere, just like Michaela's was. She's had to begin high dose chemo and is now suffering from the side effects. This child wants to live and wants to fight! Now she is in extreme pain from mouthsores and is fighting a fever. Her parents are by her side, reading to her non-stop. They have no illusions and are praying for more time at the very least.
I did too.
What I realized last nite, after checking her blog, is just how grateful I am that I never again will have to worry about Michaela's pain, nausea or neutropenia... It is out of my hands, where I have always felt it belongs, but last nite, for the first time ever, and I mean ever, I had a feeling of relief and peace.
I almost felt guilty.
The day before yesterday, you couldn't have told me that I would ever be grateful that Michaela isn't by my side....
God I miss her!!! I would give anything to hold her again!
But if that meant pain for her....
I'd have to say I can wait.
This is a phase of my grief that I never thought I would reach..
Wednesday, December 28, 2005 12:16 AM CST Hi Sweetie! This Christmas was as good as it could be. I was ready for it to be over, so I could fall apart. Instead of falling apart, I seem to just have a steady, daily allotment of tears that fall for you. Really, I guess they fall for me, because I really do believe you are in Heaven and the only thing that makes you sad is seeing me and the rest of your loved ones sad. Santa was good to us all and I know there’s no place more beautiful than Heaven~especially at Christmas. No gift I offer could compare...
When I think of all the families battling cancer with their children, I think I should be relieved that you are being so well loved and cared for in Heaven. Pain free and living your eternal life in joy and peace with all the other angels. Sadly, my heart misses you too much to allow me that relief. Daddy and I are getting better at finding our way, but never a day goes by without wish that you were here. Not one single day.
HAPPY BIRTHDAY, ANGEL GIRL!
I am having trouble writing you today. You should be here. You should be celebrating the wonderful day that your age becomes a double-digit number.
Then again, you should be here every day and you are so very missed.
Last nite I was remembering when you were safe in my tummy ten years ago. I wasn’t even in any pain and had convinced myself that labor was no big deal and other women were wussies. I thought I knew what life was and just how you were going to fit into mine. Little did I know that you were to become my life. My pride and joy. Daddy’s too. Our family began the day we brought you home on New Years day. I remember looking at you in your little kangarockaroo chair thinking “now what?”. For 2 weeks Daddy stayed home with us and we all got to know each other. Honestly, that was the best time of my life and I am so grateful to have known such joy and peace. It’s the closest thing to Heaven that I can imagine. You were our complete and total focus. It would be 10 pm before we realized that we hadn’t eaten all day! Thank goodness Bubba’s delived until midnite!
Well, I could go on and on, but I think I’ll close now. I just hope you know how much your life meant to me. I am still lost without you, but I’ll find my way. Keep an eye on me and send me signs. Give Mummum a kiss from me.
I love you.
Wednesday, November 30, 2005 1:45 PM CST “My Mom Lies”
- Author Unknown
My Mom, she tells a lot of lies
She never did before.
From now until she dies,
She'll tell a whole lot more.
Ask my Mom how she is
And because she can't explain,
She will tell a little lie
Because she can't describe the pain.
Ask my Mom how she is,
She'll say, "I'm alright".
If that's the truth, then tell me,
why does she cry each night?
Ask my Mom how she is,
She seems to cope so well.
She didn't have a choice you see
nor the strength to yell.
Ask my Mom how she is,
"I'm fine, I’m well, I'm coping".
For God's sake Mom, just tell the truth
just say your heart is broken.
She'll love me all her life,
I loved her all of mine.
But if you ask her how she is,
She'll lie and say she's fine.
I am Here in Heaven.
I cannot hug from here.
If she lies to you don't listen,
Hug her and hold her near.
On the day we meet again,
We'll smile and I'll be bold.
I'll say, “You’re lucky to get in here, Mom
With all the lies you told!"
Dear friends and family:
Lunch for Life 2005 officially began today! Please take a minute to make your donation, spread the word and light up Michaela's tree!
All you have to do is donate $5.00 to put a light on a child's tree. Of course, I put mine on Michaela's... But all these kiddos would appreciate your help!
http://WWW.lunchforlife.org
Please, in memory of Michaela and the battle she fought.... Check it out.
Tuesday, September 27, 2005 8:57 AM CDT Ya know, it’s funny.
Every so often feel like things are coming around.
My grief is managable.
The tears aren’t flowing as freely.
As often.
Maybe, just maybe, I am finally finding my way though life without Michaela with me.
Then one of the pictures around the house, in my wallet or on this page, graps me and takes my breath away. A memory of her comes and I feel her loss as real as any physical pain. I can’t breath. Tears roll and the hole in my heart becomes so raw. How can God expect me to live the rest of my life without the gift of MY Michaela? MY MICHAELA! More than anyone, surely God knows how much hope she gave me. How much joy and promise she brought into my life. How could the God, that I HAVE to believe has wrapped her in His arms, have taken her from me?
After I regain composure, the guilt begins. How long has it been since I allowed myself to feel the pain and really miss Michaela. Had it been hours or days? How could the pain have ever ebbed? What kind of a mom am I if I can go on? How could I, for even a minute, have not longed for her presence?
Then comes logic.
Michaela wants us all to go on. She doesn’t want to witness pain in her family. She knows the depth of my love for her isn’t measured by the tears I cry. I have to take care of her brothers and help them find joy. I guess I really can’t do that if I am constantly crying for her...
I guess the long and short of it is that things are as they should be.
Today the pain is real and the tears flow fast.
It just simply sucks.
Kim
Wednesday, September 21, 2005 10:17 AM CDT DID YOU ALL SEE THE NEW PIX?
THANKS FOR THE HUGS! It’ wonderful to know how many visit and remember...
Hi all! It’s been a long time. I am not ready to give up on Kay’s page, but I struggle with the fact that I don’t often have much positive to say. I don’t like that it’s becoming a “blog” for me more than a way to update Kay’s life. I’d much rather update Kay’s life.... She’d be in third grade. She was so smart and she loved school so much! She took great joy in her school work and loved, loved, loved her teachers!
Having said that, you all can imagine how difficult it has been to watch the boys begin the academic career. They are very proud to be going to “Sissy’s school”. I think I have finally been able to convince them, between the tears, that it is THEIR school now. Nicholas has Mrs. Smith and Daniel has Mrs. Bender. Michaela had Mrs. Bender and they both know that, but so far it hasn’t caused any issues with them. They both enjoy school and are doing very well with being in different classes!
The only problem they have is their behaviour on the bus. They have different drivers each way and both have had problems with my little angels... I say that with a wink.... It’s been necessary to seperate them many days on the ride home and I have learned a valuable lesson. The first time their behaviour was brought to my attention, I wanted to make sure they understood how important it was to be “good” on the bus and not distract the driver. I really drove home the fact that Mr. Peart, their principal, and I would not tolerate anymore bad acting out! This was a serious issue and had serious concequences... They seemed to understand and I was confident that there would be no more problems.
Wrong.
The next day, I got them dressed and ready. That’s my job. Dave takes them to the bus without me. I’m not a morning person, and frankly my bra is tooooo confining before 10 am. Dave is up, fully dressed and functioning and this arrangement usually works very well.
That morning, I decided to check on them from the safety of my livingroom window. Thank goodness I did. The boys took what I had said very seriously and were convinced that some unGodly torture awaited them in Mr. Peart’s office. They absolutely would not get on the bus! Traffic was going to back up soon and no cajoling would get them on the bus..... As I watched, Dave would physically put one of the boys on the steps of the bus and turn to get the other brother. As soon as his back was turned to get the second twin on the bus, the first twin jumped off.
Now, it’s clearly time for mom to get involved. Sadly, I have no bra on yet and I am fairly certain that I can handle this from behind the cover of the front door. I put my coffee down, open the door, stick my head out and yell “You both better get on that bus NOW!!!” I used my best “don’t make me come back there” voice and I was very surprised to see that I have had absolutely no effect on the situation. The only change was that now people want to know who is the voice behind the door and why won’t she come out and help this poor man?
Traffic is backed up by now and the bus driver and Dave are clearly losing their patience with Nick and Dan.... What to do... I weigh my options and in my jammies, without the security of my bra, I walk, not run, quickly to the bus. Not a pretty sight for anyone to face in the morning. Anyway, I attempted to reason with my precious sons, but I could see the looks on the faces of the people in their cars and decided to get serious. I gently shoved both boys on the bus and blocked their retreat all the while promising that Mr. Peart had no torture planned for them.
Fortunately, we haven’t had another incident like that one, but it won’t soon be forgotten. Yesterday, the afternoon driver told me that they needed seperated again. I said that was fine by me and left it go at that. I don’t repeat performance, right?
As far as how it is going since Michaela’s anniversary, I’ll save some typing and share an email I sent another cancer mom (neuroblastoma to be exact). She wrote and asked my how we marked Michaela’s angel anniversary as she is coming up on one year without her son. This is my response to her and a bit of what the day was like since I’ve never wrote about it here.
Dear S....,
It was very nice to hear from you and I am sorry to have taken so long to return your email...
I've thought and thought to try and find a helpful suggestion to getting through this anniversary that noone really wants to mark. I mean really, it's not one that you can celebrate....
My best advice for this and everyday, is to try to remember where Kaleo is. Remember that there is no pain in his existance and you WILL see him again. He was a gift to you and the world and you were responsible for him for a very short time. In that time, you were done and he accomplished so much in his little life. You now have the burden to try and be grateful for the gift that he was without allowing bitterness to color the truth. Very hard to do. I realize that were it not for my wonderful Michaela and my brief time with her, I would have never felt this deep pain. When I weigh the options, I can't imagine not having been blessed by her. It's hard not to be "greedy"... Is that the word? I want MORE of her. Nothing else will do, so I hold onto the belief that she wants me to make the best of my life without her and try not to just mark time until I see her again. That is the challenge for me....
On the evening of the one year many of the people that loved Michaela went to the cemetary to have a balloon release and just be together in her honor. Michaela was a social butterfly and looked forward to parties and holidays to be with her family and loved ones. It was hard for me because it felt like a celebration when we were planning this get together, but it was a dear friends idea, and she helped me realize how much it would mean to Michaela to see us all together in her honor.
As we drove up to her plot, everyone was already there with their balloons, and I couldn't help but smile. It looked soooo tacky! Just like my beautiful little girl would have loved to be a part of! For Michaela, the brighter and bolder the better, and boy was it! Many of her friends were there and they wrote her letters and drew her pictures and they all blew bubble to go with the balloons. I didn't shed a tear, rather I was so proud that so many people cared enough to mark this day in such a special way. I cry everyday for Michaela, but not at that ceremony. At that time, I felt she really knew we were there and had gathered her new angel friends to catch the balloons and bubbles.
God, I hope I am right.
Take gentle care and keep in touch!
Sunday, July 10, 2005 5:48 AM CDT As we approach the anniversary of our precious angel gaining her wings, it’s been difficult to say the least trying to decide how to “mark” the day. As hard as it’s going to be, I had trouble obligating myself to anything, but I think I’ve made a choice that is a good one. Stephie, my dear friend and Kay’s, called me Friday. She and her kiddos have been missing Michaela too. She is on their minds and in their hearts all the time, but even more now. She planned to take the family to the cemetery and spend time with Michaela and send up balloons. As she was thinking of the day and what they were going to do, she remembered how much Michaela loved parties. Any reason would do, her birthday or not, Christmas, Arbor Day, didn’t matter. She just loved to have everyone that loved her close to her and happy. Happy might be tough, but I think we can be together, right? Steph thought she would really love to see us all together again and I think she is right, heck, I know she is right. I was just very afraid that I will fall apart that day and wanted to do it safe at home. In case anyone missed it, I’ve taken a leave of absence from work, been sticking close to home and my mens. Trying to cocoon myself into some sense of comfort, but this is, in the end, something that would bring joy to Angel Michaela. After all, what do you do for an angel that has everything?
Anyway, if it’s manageable, comforting or helpful in anyway, everyone is invited. We will meet at the cemetery at 7:00 in the evening on Friday. We can share memories, tears, and smiles. For anyone that would like to write a note to Michaela and send it up to Heaven, we will have balloons and markers ready. I’d like to get some bubbles too. I’ll get the kind that doesn’t pop, so we can watch them soar to her.... She’d love that.
I know this may seem strange to some, to some opening a wound that is beginning to heal. We also know that many have vacation plans and if that’s the case, please do what brings you joy that day. There is no sense of obligation here, none at all. Michaela wasn’t like that and neither are Dave and I.
After we are finished commiserating and sending Michaela our love, Dave and I will want to go home with the boys and be by ourselves. I expect we will have some very hard moments and will want to be alone with the boys to help them through that day of contradictions. Balloons, bubbles, laughs, and tears..... All at the cemetary? It’s going to be hard to grasp for them, I am sure...
It’s hard for me to grasp, but I know it’s the right way to mark the day I have had nightmares about.
After all, it’s a party for Michaela, her new life with Jesus and all the other beautiful angels. I can only rejoice for a bit, then I have to retreat, regroup, and continue to mourn.
Please email me if you need directions to the cemetery.
knikdan@comcast.net
akakaysmom@comcast.net
I thank you all for visiting the page. I love you for the hugs you have sent her and given us. This year has been so hard. So sad and so lonely with out Michaela. Wherever you are that day, look to the sky, I promise you will see something that reminds you of Kay, and have to smile....
Love and tears,
Kim
Wednesday, July 6, 2005 12:52 AM CDT Dear Michaela,
Wow, is this hard. I should be doing some work around the house, but your brothers are so out of hand this morning, their little butts were put in their room for a time out. What better time to write to you...
I miss you so much that I can easily cry at the drop of a hat. In 9 days we will be marking your becoming an angel. I can’t believe that it’s been a year. I can’t believe it hasn’t been longer. I know that makes no sense to you angel, but living without my baby girl doesn’t make sense at all. Really, I can’t believe that the world kept spinning, babies were born, people died~too many of them children, but I won’t get into that. I am sure that you met all the beautiful angels with open arms and a loving heart. That’s just how you are. I live my life trying daily to be more and more like you. Fun loving and kind. Kind is much easier. Fun loving can be such a contradiction to what my heart is feeling....
Guilt is a useless emotion, but I certainly feel my share of it. The life we live now is the kind of life that I know you would have loved... We’ve really been blessed by loving friends and family that have never left our sides. If they aren’t physically here, we still know that we are loved and thought of... So many people remember you and they really try to lift us up by sharing their thoughts of you and by allowing us to remember you everyday, in everything we do. I think of you all the time and get so sad that you aren’t here. The boys can go swimming anytime they want to... We’ve had parties, pig roasts, cookouts, and lots of shopping trips that I just can’t help but think you should be with us.... It’s so hard to shop and not buy some of the pretty outfits that you would love.. I didn’t realize how much time and heart we put into the Girls’ Department at K-Mart until I spent this last year avoiding it. Holidays were hard, but summer... there aren’t words. Sandals, sundresses, swimming suits.....even hats and bandanas.... The Fourth of July might have been the worst holiday... Well, maybe not the worst, but it really hurt to not be watching them with you. Actually, I didn’t watch any. I might have seen some, but really tried not to pay much attention... it’s too hard without you.
July 15th is coming so fast. I don’t want to mark the date. What are we supposed to do? Certainly won’t celebrate it. Can’t mourn anymore than we already do... We should do something to honor your memory, but what? Be happy? Not likely. Another thing, as I mark these last days of your life with us, I remember so many sad things. The day we broke your heart and told you that Neuroblastoma was going to send you to Heaven? The way you wailed “NO” will never fade. The way you stuck up for Daddy when I asked him to start the DVD player and you could barely talk, but found the strength to put together on of your last sentences.... “Why.. Don’t... You... Do ... It?” I teased you that you were certainly feeling brave that evening... all the while I couldn’t get out of my mind the effort it took for you to get the words out. The last words that you said to me will live forever in my mind. You were getting ready for bed. Daddy was waiting to pick you up to carry you to the potty and you said “Good night Mom.... I mean the ‘normal’ one.” If I would have known that you wouldn’t ever speak the next day, I would have never left you go to sleep. I wish I were kidding, but I am not. I miss your voice so much....
Well babe, I guess I’ve pitied myself enough for one day. There’s so much more to say, but I’ll close now. I’m counting on Heaven to offset the sadness in my words to you. It would be unforgivable if I caused you any sadness too....
I love you sweets. I live to see you again and to make you proud until I do.
Momma
Sunday, June 26, 2005 1:26 AM CDT Hello My Angel Baby! I miss you so very much and don’t know how to express what I feel. For some days now, I’ve spent my days teetering on the verge of tears. If someone asks how I am, it’s hard to know how to answer. At that moment, I might be fine. Or I might want that person to think that I am fine. Or I could be breathless with missing you. Often that isn’t something that people are comfortable hearing. I’ve needed to spend this time with you for so long now and have had a hard time getting to this. Daddy is still working at Metso in York, but he is now on 3rd shift. I am still off of work, on a leave of absence, and the boys are staying with me instead of going to daycare. It’s all working out pretty darn well, but it’s hard to find time to write to you and let some of these sad feelings out. The boys don’t like to see me cry. They try to understand, but can’t. They want to know when you are coming back. They want to see you again and they talk about you all the time. They love you so much. I don’t think we ever have to worry about them forgetting you. They tell me things Sissy did all the time.... They still like to tell llllooooooonnnnnnggggg stories, but sometimes they are pretty funny.
Our lives have changed yet again to accommodate Daddy’s new job. He is doing very well, but 3rd shift is very hard to get used to. He is working 10-hour days, drives 45 minutes to get there and back home again. In order to get a good amount of sleep we have to really try hard to keep quiet enough for him to rest and we all have family time in the evenings before he leaves again for work at 8:15. It seems like he is working all the time, but he still really enjoys what he’s doing, so I can’t complain. Slowly, I am taking on more of the work around the house. I even cut the grass in the backyard last week! I don’t think I’ve done that since you were a toddler... I’m sure you would have gotten a chuckle out of watching me. You know that I don’t like to do outside work very much, but I think I will try to do more and more so that Daddy has more time to just relax and be with his boys.
They are mastering riding their bicycles without training wheels! I have been so pleasantly surprised by how quickly they are learning! They still have a few crack-ups here and there and they often need medical attention from dad or mom, but all in all, they are very brave. I know you would have loved to learn to ride bike. There wasn’t much that you didn’t like to do before that shitty cancer held you back and took you from my arms.
Another new thing around here is that we got a pool! Oh Kay, you would have loved it! It’s inflatable, with a filter, ladder, net, and all the stuff to keep it nice. It’s only 4’ deep, but it’s plenty of room for lots of fun! The boys can swim between Aunt Kath’s legs, and mine. They can do flips like Nicole and they love to do cannonballs off of the 2nd step of the ladder. There’s room enough for 2 grown ups on rafts and 2 busy boys fooling around. The life we are living now is the life I wanted with you. The sad fact is that if you hadn’t been taken from me to be in Heaven, I wouldn’t have needed a leave of absence. It’s ironic. Daddy and I would be working. You and the boys would be in daycare all day... If I think too much about it, I can get very, very sad. I have to hold on to faith that you are happier than I could begin to imagine. Faith is hard some days.
I can’t believe that it’s so close to the anniversary of losing my baby... I really never thought I would be able to survive with out you. I probably couldn’t have. I know you are sending me signs and loving me from Heaven. I know you will always be with me, I just wish it was closer. I haven’t done any big projects to help other kids with cancer. We’ve done some small things, but I hope I can get into something even bigger when it falls into place. I also haven’t written that book that I was considering. I started it. Got the introduction and chapter one. It hurts so badly and I wonder just whom will it help. What difference can we make? Cancer just sucks. It kills the most beautiful people. Breaks hearts all over the world... You pray, plead, bargain, and the miracle you want isn’t always to be had. I wanted to keep my miracle. You are my miracle. I’m not angry, just so very sad. Do you think we could make a difference, you and I? I only really feel good when I am helping someone through this cancer maze.... But oh how painful it is when their story ends the same as yours did.. Do you know that there are families out there, they have the best intentions, but feel if their child dies, they didn’t pray hard enough? On top of missing their beautiful warrior, they put that kind of guilt on top of their grief? I hear it time and time again.... A doctor will tell a family that their child is in grave danger. You need to prepare, pay attention to quality of life, pain control, and special moments. These families believe that they need to pray harder, keep treating.. These families are often afraid to NOT take extraordinary steps to save their child’s life. Extraordinary steps often mean more suffering for their baby, but they are afraid of what God will think. Will he think they gave up and then not give them a miracle? I think not, but what do I know. It upsets me so because I believe in miracles and I believe that God does answer prayers, but they aren’t the way we want him too. Way too often it’s not what we ask for, but what God feels is right. HEAVEN shouldn’t be looked at as a punishment, but a blessing to the child.
I hope you like the way your page has changed lately! Two very talented ladies have been helping me out with it. Connie and Colleen have really dolled it up with pictures, butterflies and your favorite color! I loved it and I know you do too.
Well, that’s all for now. I love you so much and I would give anything to feel you or see you in my dreams. If you get bored.... come to me.
Forever in love with my baby!
Kim
Sunday, May 15, 2005 7:28 PM CDT Hello everyone! It’s been a long time between updates and there’s a lot to
be said and it’s hard to know where to begin. Today has been 10 months since
Michaela became an angel. Often it seems like a lifetime since I’ve held
my baby girl, but most often, it hurts as though it was yesterday that we
laid her to rest. She is missed so deeply, words are insufficient.
Dave began his new job at Metso Minerals in York. He is a machinist
there and while he is getting acquainted with the job, he is on
first shift. Once he can be independent, he will go to third.
Third shift is his least favorite shift, but first isn’t available and
second would keep him away from the family too much. I believe that if he
is disciplined about getting the proper rest, he’s going to adjust just
fine to third shift. He’s only been there a week, but I haven’t seen him
so alive and happy in a very long time. It’s a pleasure to see him walk
through the door at night and watch his eyes light up talking about his new job!
I have taken a leave of absence from my job. I have missed a lot of work
since I returned and it is just not fair to the company. I know they are
disappointed in my decision, but it’s one I had to make. I am missing
Michaela so much and been feel very low. It’s been difficult to get on
with my life. I know everyone that loves and cares for me wants me to be
better. I want to be better and I’ve said that I am getting better. Not
exactly a lie, but not entirely the truth. Honestly, I have been existing
to get through this life and to Michaela in Heaven. Suicide isn’t a
thought that crosses my mind, please understand. Living is just so hard
without her I am just biding my time and that’s no way to live. It’s
confusing, especially to Dave, because I try to act fine. I believe that if
you think it, then you say it, and hopefully, you become it. I can think
it, I can say it, but I am not fine without my baby girl. I had so much
hope wrapped up in her life. I need to find my way through life without
her. I can’t just exist, I have to live and live well. I have to figure
out how to do that. I’ve been called strong, brave and amazing. I feel
weak and disappointing at best. It’s time to work full time on getting
better. I have to focus on my mental health, heal my broken spirit and love
my family while they face their struggles. While I do that, I am not
strong enough to work….At least not yet. I have sought counseling and
like the gentleman that I am seeing. I’ll see him on a weekly basis.
Patti and I were able to gather a number of books that Michaela either
read with Patti or would have enjoyed. We donated them to Hambright
and they were received by Mrs. Hess from 1st grade and Mrs. Adair, from
2nd grade. They loved the books and got special bookplates with Kay’s name
and picture and they will be put in the books soon. It was what I’ve
wanted to do for a long time and I am so grateful for Patti helping me get
it done. Kay loved her teachers so much! She loved school and reading.
I hope the books give other kids the joy that they gave her.
Hambright also dedicated a plaque in her honor and placed it in the
courtyard. I didn’t even know that they had a courtyard, but it is quite
nice. They have a tiny pond and there are 2 ducks that won’t be shushed away. They send them away and Kay
brings them back. It’s a very nice, quiet place and I am proud that they
cared so much for her to remember her in such a permanent way… Hambright is a family…
Mother’s Day was painful for Dave and I both, but we were very honored by
special friends. Brandon Loose’s family included Michaela in their day
at the convoy. They made a beautiful banner for the side of the truck and
on the front. They made this banner by hand. They even made us t-shirts
with Brandon and Michaela’s picture on them to commemorate the day. I could
describe these banners, but it’s my hope that Daddy Dave will have the
pictures on the webpage very soon. As heart breaking as it was that she
wasn’t with us, I can’t help but be so proud of her. She touched so many
people that didn’t even know her all that well. Heck, by the time many of
my dearest friends met her, she was so sick. She couldn’t be bothered to
even talk to people.. I can only begin to imagine what an impact she
could have had had she been allowed to remain on earth with us, feeling good
and loving life.
Nicholas and Daniel are learning to ride their bicycles without the
training wheels! Dave is exhausted, but pleasantly surprised by their
quick learning! I am very pleased too! I had no idea that they would do
so well!! Uncle Bob is chomping at the bit to get them to the club and on
dirt bikes. Looks like Alma will have to teach me how to handle my little biker boys!
Well, I know there’s more to report, but I am bushed.
I’ll end here and thank you for visiting again.
Kim
Monday, April 4, 2005 6:55 PM CDT Hello dear friends~
I usually write to my angel girl, but I think I am ready to share a very special story. Some of you already know the story, but I want to tell it again. I had some things happen to me, all in a row, that left me dumbstruck and confident that my Michaela was telling me that she was alright. I'll try to explain what happened in order....
Saturday, Halloween nite, my good friend, her friend, and I were watching scary movies. Dave had gone to bed for the nite. It was about 1am. My phone began to ring. Having caller id, I checked to see who it was. The id said "no data", but I answered, thinking it may be an emergency. There was noone there. More than that, it was like in the old days when 2 people picked up different phones in the same house to make a phone call. No outside connection, but you can hear each other.... This happened no less than 5 times. Finally, my friend, confident it was Dave, stalked into our bedroom only to find him sound asleep and the phone on it's base. She came back to the livingroom pretty spooked. Not scared, just curious you could say. I said, only half joking, "that's my girl."
Sunday evening, I went out to my van, for some reason that I can't remember, and found that my interior dome light was on. I was quite irritated! I was sure that the boys were playing around again, like they used to do with Michaela, and told them how lucky they were that I caught it in time for their Daddy to re-charge my battery. Dave went out to check out the damage, so to speak, and the darn van started right up! Now, noone had been outside since that morning! Very strange, but this one I didn't blame on Kay.
The following morning, when I went to start my van, it started right up but my radio presets were gone and my clock was flashing 12:00!!!! It was as though it had suffered a drained battery....
Tuesday, Election Day, I came home from voting and headed straight to bed. I had a stomach ache and never left the house, I hung up my purse and keys and that is where they stayed until the next morning.
On Wednesday morning, feeling better, I headed to my van.
My ignition key, the only one I have, is bent to the point that I can't even get it in the ignition. It can't be bent back and no ~living~ person could have done this. I wish I could show everyone. I felt as though she needed me to know that she's there and had to give me, the synical one, proof of her well-being.
That day I knew that Michaela is watching me. She was telling me that, not only is she happy in Heaven, but I am doing well. Well enough.
I hold that key like a "worry stone" and even have a note on my desk. It simply says "REMEMBER THE KEY".
and I do.
Love,
Kim
Angel Michaela's Mom
just doing alright!
Thursday, March 10, 2005 7:14 PM CST Hello, Angel of mine! I sure do miss you! Let’s just get that right out of the way, shall we? Your name continues to be on the lips of all your friends and family and I am so proud of you. I just love to hear, say and type your name, Michaela. Your brothers talk about you all the time too and everyone knows that they have their very own angel!
I am doing better than I was the last time that I wrote to you. I was very scared, sad and sick all at the same time, but I think things are coming around. I definitely don’t feel as bad as I did. I know that I will never be the same, but I really have to try.
Mrs. D and I went book shopping yesterday. When you died, I couldn’t bear to think of all of your Ramona books going to waste and told Patti that I wanted to donate them to your school. She and I decided to add a few more books to the collection and present them in memory of you my angel girl! I remember how much you loved Captain Underpants and Ramona! They really helped us pass the time in clinic and kept your mind off the nasty side effects from chemo. We only bought a few books and I emailed your other 2 favorite teachers and asked for their suggestions. We want to make sure that we get them what they want and or need, right? Mrs. D is also considering beginning a program, in the future, where we donate books to the hospital. One thing at a time for me though… I am so sad that you aren’t here with us. It was bitter-sweet remembering all the books that you loved so much…
Tracy Musser and I are also planning a basket bingo to help raise money for Brandon Loose’s family. That’s going to be a ton of fun and it’s going very well. Tracy certainly has more energy than I do, but I do what I can to keep up. It’s on April 30th and I’m going to advertise on your page when we have the tickets printed up.. We got so much help when you were sick and we always said that we wanted to give back. Hopefully, I will always be able to help other families like ours because I know that this is the way you would have lived your life. No doubt about it!
Tucker is in “transplant” now. He’s doing good so far and received his cells back today. He has the beginning of the mouth sores, but hopefully he won’t get as bad as you were. I so wish you never would have needed to go through that crap, but we didn’t know… We had to try. I think that’s the way you wanted it to. You would have done anything to live, I know it. Keep an eye on him sweets! He needs ya and so do his mommy and daddy.
There are way too many NB kiddos losing their fight for life. I feel so close to them and it breaks my heart because I know the pain that is coming their way. I can’t shield them and it hurts to watch, but I feel that I have something to add. Some sense of hope that I have from you and I keep hearing Pastor Lavina saying that sometimes all you can do is show up. I guess that is what I am trying to do, just be there. I know you are in Heaven. As I said the day that you died, our loss is Heaven’s gain.
Keep painting the sky for me. I see it, and I believe.
Love,
Momma
Wednesday, February 23, 2005 11:14 AM CST Well, my dear angel. I has been a very long time between updates and for that I am sorry. You are never ever off of my mind, but sometimes I just don’t have the heart to let it all hang out with you. Deep down, I guess you already know everything I have to say before I type it, but I worry that you will be disappointed in the way I’ve been handling things lately.
New Years, Valentine’s Day and another anniversary has passed. By far, that anniversary has been harder than I ever expected it to be. This was THON weekend. It’s been one year since we were there watching you have the time of you young life. The impact of remembering that time with you and the loss of not being there with you this year has hit me like a truck. Honestly, I didn’t think anything could sneak up on me and break my heart ever again. I was oh so wrong. I say it all the time, and I really believe that I mean it, you are in Heaven and this world has nothing to offer compaired to that, but oh dammit Kay, you should be here. All those kids, big and small, dancing their hearts out. Squirting each other with water guns and blowing bubbles at each other. It was the last good time that you had on this earth. Yes, I know we tried to have fun, but really, that was it wasn’t it. After that, your spirit couldn’t rebound. I didn’t know that weekend was it. The beginning of the end of your life with us, but it was. Tears are rolling freer than ever and all I can say is “SHE SHOULD BE HERE!!” Your loss is so tremendous to me that it takes my breath away. Shouldn’t I feel better by now? I know that I will never, ever stop missing you and longing to be with you, but when does the physical pain stop?? I feel you slipping from me and closer to God with each minute that passes. I should be grateful for my faith, but instead I mourn harder.
I’ve made a decision that is adding to the agony. Perhaps it isn’t adding to it, but allowing me to feel it. Anyway, when you got sick, when you relapsed and finally when I faced that fact that you were dying, I went to the doctor and asked for help. The help came in a capsule called Effexor and with each plea for help the response came to increase the dose. I am grateful to have had that pharmaceutical assistance, but as we move further from the fast pace cancer world, it was doing things to me that were less than ideal. I have some blame here, but I just wasn’t myself. I counted on Daddy to cover for me in so many ways. Even shopping lost it’s appeal. It was way to easy to say to heck with it, and I said it way too often. There is something to be said about priorities changing after a crisis, but it was more than that. I was letting everyone down, including myself. It was brought to my attention that I was making very simple mistakes at work and it was way to hard for me to go to work. Much easier to stay home until I felt better and that wasn’t happening. Ya know how the pantry was always full of snacks, soup and cereal? Not now. All the shampoo options in the shower? Not so much. Every where I look I can see the mom, wife, “Kim” that I knew changing in ways that I didn’t like.
Anyway, I made a return trip to the doctor and stopped the medicine “cold turkey”. Now, it’s not like I need to go to a hospital or anything, and the doctor prepared me, but I have been feeling awful for a week now.
Better in some ways than I expected, but much worse in others. Today has been pretty good, but I just woke up so who knows what the rest of the day has to offer. I know you are looking after me and I sure do keep you busy, but I really want to come back to who I was. I surely can’t make you proud of me from under the comfort of my blankets, now can I? Your brothers and daddy deserve so much more from me and I know I can do it. I’ve made a huge step and am paying the price for the assistance this drug gave me, but I have a long way to go. It won’t be easy and I have a lot of work to do. I have to relearn discipline, you’ll enjoy watching that won’t ya? See Kay, I still feel so close to you. To you I can say things that I can’t begin to say to anyone else. I hope you feel loved from that and not sad.
I guess the real bottom line is that my battle with cancer is over. I don’t like the way you won the battle. I’d much rather have you with me. I’d just love to rub your hair and pray for hair just like I did when you were a bald beautiful baby, but that’s not for me to do. God has cured you, made you whole and well. What I have to do is remember you, the good times and the bad, and realize that my eternity will be with you, not my life. Meanwhile, I have to rub your brothers’ heads and raise them up to be strong, loving men. Just like their daddy. I’ve got to raise myself too. I’ve got a lot of changing to do and it will be done. You’re just gonna have to help me out here and there. Send me signs, paint my sky and remind me that my job is to live.
I love you, my Angel!
Momma
Thursday, December 30, 2004 1:52 PM CST Dear Beautiful Michaela Ann!
How wonderful Christmas must have been for you in Heaven! You were sorely missed here and there were many tears shed from missing you! I am very glad that the holidays are almost over… I’ve never wished Christmas to be over, but this was so hard without you. The first of many Christmas’ without your sparkle and joy. We did our best and I know the boys had a wonderful day! They were very good and enjoyed visiting everyone and opening their gifts. We got a really small tree this year. Your brothers asked if it would grow if they watered it!! J Thank goodness they asked and didn’t just run that experiment on their own! It was a pretty tree and certainly good enough this year. I couldn’t bear to go through all of our ornaments and see the ones that you got for your first Christmas, or all of your Barbie ones, or especially the ones that you made yourself. Anyway, I got a 3 feet tall tree at Kmart and it did the job. Daddy liked it because he didn’t have to put any lites on it…it was pre-lit. I didn’t put out too many decorations, but we did make cookies. They were slice-n-bake, not the good ones that we normally would make, but they were tasty and the boys didn’t seem to mind at all! I made sure to sing Christmas songs with them too, just like we used to. I know they sense my sadness and they have seen me cry, but I think that’s okay. You know I don’t believe in hiding my feelings. I think it’s better to explain things as they occur not to just brush everything under the carpet. Besides, it would probably really freak them out when they grow up, have a family of their own and realize just how huge your loss is for Daddy and I. If we hid our emotions they’d really wonder about us. I trust you’re looking out for us all and if I’m wrong you will let me know somehow.
You know how loved you were, but I must tell you to please look out for Michelle and Alyssa. They are both feeling very, very sad and they miss you so much. They’ll be alright, but this has been very hard on them. Both girls are talking about their feelings and I am very proud of that. It’s hard enough for an adult to accept this loss, but for friends and family your age…ugh…
Now, most of your readers will think this is silly, but I have to say this. Lenny Brisco, from Law and Order died recently. I know this is strange, but I thought right away that you would be greeting him and telling him all about how much you and I loved watching that show together. I remember when you were barely walking, if you heard the theme song begin, you would come running from whatever room you were in and just stand there in front of the television until the comercial started! As time went on you learned the words to the introduction and you even said the “BUM-BUM”S… Now you get to meet the real Lennie!
Did the angels sing “Happy Birthday” to you? I can’t believe you would have been 9 years old! I wonder what kind of party you would have wanted… probably rollerskating. That’s what Michelle had. It’s so nice that I can watch her grow up and know that one month later you would have been having your party. I know Heaven holds beauty and joy that I can’t begin to grasp, but what I wouldn’t give to be responsible for your joy again… I miss you so. I got many email messages of support for Christmas and your birthday and it carried me through. It’s strange though, because your birthday wasn’t too hard for me. I think New Years will be though. That was the day that we brought you home. I remember being so scared of doing something wrong! I’ll never forget the drive home. Your daddy avoided every single bump and pot hole. I think his eyes were on the rearview mirrow more than out the windshield. God blessed us with such a beautiful baby! So sweet and perfect and scary all at the same time! The two weeks that Daddy took off to be with you when you were born will always be a treasured time for me. The whole world revolved around you and I am so grateful for those memories. I remember our first trip to ParkCity! We had more gear and baggage than we’d need now for a weeks vacation at the beach! I just couldn’t be caught without anything that I might need… How funny! What I wouldn’t give to time-travel back to those days! Just to feel that joy and uncensored pride!
Well, that’s all for now sweet angel of mine. I love you!
Mom
Sunday, November 21, 2004 7:50 PM CST Dear Michaela,
Hi hunny! I know it’s been a long time since I have written to you, but you are never off of my mind! It’s getting to be the holidays and Daddy and I are feeling pretty sad and lonely without our girl. It’s been 4 long months since I’ve held you. Honestly, instead of easier, it is getting harder.
The holidays are coming fast and I would rather that they didn’t. I can’t believe that I didn’t tell you about Halloween even, but I just couldn’t. When I write you, I feel so close to you and I cry a lot. It’s not a bad thing, I am not complaining, it just definitely requires a block of time and I didn’t have it. I know you are watching over us, but I still like to write to you. Anyway, they boys had a ton of fun Trick or Treating! They were cowboys and even had genuine cowboy boots just like Daddy! They rode their scooters and we took Sadie Lou with us too. They were polite and said “Thank You” and “Trick or Treat”~ in that order! It was cute. I missed you badly and I know you would have been some kind of princess again! I never could stear you away from those costumes.
That was the first time I realized that you were sending me a sign. I got it, babe! I know it was you and you were telling me that you are fine and I am doing okay too. It was kinda creepy that you picked Halloween to show me, but I’ll take it. I look up every morning and see whay you’ve painted for me in the sky. You do a beautiful job and some mornings I just feel so proud of you! I shared with my group the way that you pain the sky for me and a friend wrote me a poem.
o nce i painted love into your life by my coming
and sharing me with you
now i paint the skies with God's brush
and God's colours
for your eyes only
your heart will see the colours
and know that it is me
because you knew those colours in me
when i was with you
and
now you are
more free
to see those colours everywhere
even on the days
when they are painted on a background
of black or grey
even on a day
when there is only one speck
like you once put your hand on mine
to hold a spoon
and feed myself
to hold a pencil and write my name
now God and i
we sit together
and we love you
and we paint
and surround you with our love
in
living colour
I hope I can remember that more often and find more joy in life. I know that’s what you want and I hate to disappoint you, but it is oh so hard.
I think back to the times when you were very sick. You would look me straight in the eye and I knew you were making sure that I wasn’t crying. I rarely did that in front of you, but there’s no hiding now.
I love you and I will write again soon.
Momma
Tuesday, October 19, 2004 6:44 PM CDT Hello everyone! I am going to just give a quickie update tonite about our family.
Everyone is doing well. We are adjusting to the huge void that Michaela’s death left us with, but we still talk about her and think of her every single day. I feel her so strongly around here sometimes that it is hard to believe that she’s had her wings for 3 long months already.
The reason I am updating tonite is to ask you all to keep a very special family in your prayers and visit his webpage if at all possible. Brandon is a sweet young boy with the Neuroblastoma monster fighting to take over his body. He is now admitted to the hospital for transplant. I am sure you all remember what a scary and difficult time this was for Michaela and all of us that loved her. The sad fact is that this is a very necessary procedure and offers the best hope of a cure for Brandon. What I am asking of all Michaela’s faithful supporters is to check in on them via their webpage and offer them all the support and love that you have to give. I know this family and have come to love them very much! I know Michaela is watching over Brandon from Heaven, but there is a lot that we can do from our place here.
Their webpage is
http://www.caringbridge.org/pa/brandonloose
Blessings!
Kim
Thursday, October 7, 2004 9:45 PM CDT Dear Sweet Angel Michaela,
I hope this works tonite for me. I have so much to tell you and I feel so close to you here. I struggle with the need to journal to you. I feel like an exhibitionist of sorts. (That means someone who needs to show off –haha) Honestly though, I don’t think that’s it. I can get so many feelings out, some on your page, many tears on my shirt, and it makes me feel like I am somehow with you. That you know how much I miss you. I see so many signs from you, yet none are clear enough for me to really know that it’s you. The sun sometimes when it sets looks just like a fireball. I’ve never seen it so brilliantly before! Are you doing that? And the sun’s rays coming through the clouds…. I always saw them streaming down from the clouds. Not any more. Now they stream up! Are you discovering new ways to show me?
I hope you feel the love of all of our family, friends, and community. I am amazed that people still check in. I think people want to make sure that they keep holding us up for you. Everyone knows how much you loved us and they keep coming to us. No one has disappointed us, even in the smallest way. Everyone is keeping your memory alive, and when it’s painful and we need to cry, they hold us. Patience and love surrounds us as I never expected it would.
I’ve had some very sad days and I am still struggling to make my way as you would want me to. We are decorating for Halloween, and I’ve put autumn leaf garland around the door and it looks very nice. I know you would love it and it made me very sad for a while because I wished we had done it together. You were my seasons. Now, I will find a way to define them with your daddy and brothers. We’ll be okay, but sometimes I feel afraid that you are watching me wishing that, like I wish, we could be doing it together. Then I try to BELIEVE, that you really couldn’t care less. You are in HEAVEN. If I can be happy, that’s what you want. If we can be good to each other, smile and remember you, you are happy.
Your friends at Hambright remembered you in a very special way! Yesterday Daddy and I received an envelope in the mail. It was from Principal Peart and all your other friends at school and it had a picture in it. It seems that they all took time to write messages on cut-out handprints about how they feel about you. They arranged them on the bulletinboard and took a picture for us. Dad and I just hugged each other and cried a bit. Such a beautiful expression of love and kindness couldn’t have come at a better time. Sweetie, I think you will never cease to amaze me! The mark you left in the hearts and minds of everyone makes me so very proud! I want to take your Ramona books to the school and donate them to the school library. I think that would make you happy! I have to get stronger for that, but I will do it soon so I can see the bulletin board of handprints in your memory.
I long to hold your hand, hug you, kiss your head, smell you. You’ll never know how much I want to go back for just one more minute. One more nite in momma’s bed holding your hand and watching daddy carry you to your room with your head on his shoulder………..
I will have to admit that working has not been good to me or for me. I thought it would be, but it seems like I have too much time to think there, where at home I would pick up the phone, take a nap, watch a program or chat online when I was getting too far down. Everyone is very kind and patient, but it’s hard to keep my emotions under control there for some reason. I am also on steroids for a bad cold and don't believe that is helping out my mood either. Any excuse will do somedays…. Anyway, I was pleasantly surprised by how good today went. It might have been my best day yet without you angel girl. I really think I felt you with me and I thank you! I heard a song that we would sing at the top of our lungs together in the car. “LESSON IN LEAVIN’” by Jodee Messina was playing on the radio and I was remembering that that was one of the songs that I would always stop at and we would sing together. Not only could I reflect on how we sang it, but I had such a sense of KNOWING that that would be a song that you and I could have and would have sang together when you grew up if a man dared to not treat you right. I know that you would take no less than what you’ve seen your daddy be for me. It was his gift to you. You know that mom has very STRONG opinions on marriages and relationships in general and I felt very sure that you would have been a strong woman and wouldn't have taken any youknowwhat from anyone. Instead of sadness, I felt such pride! I know that already you have that strength in you! At 8 years old, I think you already had a sense of self that it has taken me my whole life to cultivate. I believe, that as an angel, you are propping up and strengthening some fragile creature in need. Perhaps that would be me, because today, I feel good. I feel strong and I have faith that I will see my strong little woman again. My Michaela Ann. I love you sweetie! I love you and I miss you, but I hope you see that I am trying to live the way you would want to. I know I need to live the gift of life that you fought so hard and so bravely to keep, but didn’t get to.
Xoxoxoxo
Mom
Saturday, September 25, 2004 3:50 PM CDT Dear Friends,
I must write to you all first and thank you for continuing to support us and love us by visiting Michaela’s page. I had decided long ago that it was too good for me mentally to stop writing here. It had gotten me through so many hard times and brought clarity to me about my feelings. I often don’t know what I will be typing until I sit here and begin. This keyboard has been such a Godsend to me and I dreaded the day when the counter on Michaela’s page stopped going up…. I thought it would have by now and I am so very glad that it hasn’t. Perhaps I need an audience, could be I just need to be validated more than most, maybe the closeness I feel to Michaela when I type is real and true. Could it be that she can feel what I type? It feels that way to me. Either way, thank you for allowing me this place to come, dump, share and explain things. I truly don’t find comfort like this in my written journal…. I don’t feel Michaela knows what I am writing there and it is too private. When you grieve you hold so much more in than I ever knew I would or could. If you say too much, sometimes, people feel the need to say something to help. It’s a waste of breath because it’s not something that can be helped. I also want to explain the crying. Please understand that if we speak of Michaela and I cry, you did nothing wrong. In reality you are helping. The tears are always there. We push our feelings down so much and it’s a gift when they can’t be pushed down anymore. You did not make me cry, you allowed me to cry and that is better than okay. Don’t stop saying Michaela’s name, sharing memories and putting words to your grief. Many of you are grieving and we know it. Let us help you too, even if just by listening. This is hard work. It takes a village to raise a child. It also takes a village to make a life lost bearable. Listening to the grieving soul and knowing that words can’t help is a painful experience for those that love us. Here, I know I can say what I need to and no one needs to fix it for me. Send us your love, we need it, but don’t feel obligated to be philosophical. I doubt we’d understand it anyway, lol, but what we really need is to know that we aren’t alone. We see that by the numbers going up and up… You still love us, you still miss Michaela, and you want to know what our lives are evolving into.
Thank you for caring so much! Thank you for sending your love! As Pastor Lavina said at Michaela’s funeral ~ sometimes the best you can do is to just show up~….Thank you for showing up and please know that we feel your love. Please always remember that we are here for you too. When we help someone through their grief, it also helps us.
Now, onto my love, my angel…
Dear Michaela Ann,
As you see, Sadie Lou is improving steadily and is quite possible the best dog we have had since Tripod and Bart. I know you weren’t really a dog lover, but I think you would really love her! I told that to Daddy this morning and he agrees. She is truly special. Very calm, gentle and smart. She’s a bit stubborn, but not in a bad way. She just wants to be rewarded and cajoled, kinda reminds me of you. She loves to cuddle in my bed and she loves the cats. It worries me because she will bite at them and I think that we need to stop that habit before she gets much bigger. It’s not going to be an easy behavior to stop because the cats love the attention from her. They don’t know how big she will get and how hurt they could get because she won’t know her own strength. She has already at least doubled in size and it’s only been 2 weeks today that we’ve had her. She is doing well with the potty training and doesn’t often have accidents, but she doesn’t like to go outside by herself… I guess, she needs validation too… silly female…
Bad-ass Bubba and Skittles have not taken into hiding because of her and that is good! They seem to love her and I am confident that she is in the right family! I know how much you loved your kitties and I was afraid that she would upset the balance in the house and they would be lost in the shuffle. Not so, they still sleep with us and hang out with the family. I know you would be happy.
You know that I went back to work. Sadly, I haven’t been there as much as anyone would like. I missed for your 2 month angel anniversary. Couldn’t do it. I missed one day because your brothers were sick….not too sick to drive me nuts, but sick none the less. Add then to add insult to injury, they gave Daddy and I their colds. Daddy, you know how he is, won’t admit that he’s sick, but I knew I was. I went to the doctor right away and he gave me some good medicine, steroids and antibiotics and inhalers so I feel a lot better already. I hope I will be able to go to work on Monday, but if it was today, I know that I couldn’t. I think my body is telling me to take care of it better. I have really gained weight. I have to get myself eating better and maybe even some exercise. Remember when you told me that I wasn’t fat. You said that I was just perfect for cuddling? I’ll always remember that and I promise that I won’t get too skinny because when I get to Heaven, we are gonna cuddle girlie!
I had a very hard couple of days missing you. Even more than normal the tears just run down my cheeks when I remember you. I have two things that I need to say. One is that I never really appreciated just how strong you were. I said you were strong, and I meant it, but I don’t think I really grasped just how much you were dealing with. I am amazed that chemo was your friend for so long. I was so grateful that you were handling it so well, that I didn’t give you the credit that you deserved for coping so well with the side effects and loss of self-esteem that I know now you suffered from. You were just amazing to me, but I wonder if you knew how much you should have been admired by us. I don’t think I got it until just recently. You decided how you were going to live, no matter what you had to do to live. If that nasty chemo wouldn’t have beaten you down and become ineffective, you’d still be on it. Side effects and all. God Girl, you were so strong. I am prouder of you every day. It’s all so clear now when I look in your eyes. I wish some how that I knew that you weren’t disappointed in how much I voiced that to you. It seems to me that I was always busy doing the mom stuff that I didn’t do some of the even more important stuff. I should have let you know that you were and are my hero.
My next pain is the fear as life goes on, and it should go on for everyone, that your memory will be faded. I guess it’s selfish on my part because you’re in Heaven. What do you care, right? I care. I want everyone in the world to know how important, strong, lovely, funny, sweet, inspiring, special, smart, sneaky, caring and true you were. I want everyone to remember that there is a Mease that isn’t in her bed. My daughter isn’t trick or treating this year. My best friend, the light of her daddy’s eye, won’t grow up as she fought so hard to do.
IT DESERVES TO BE REMEMBERED.
I LOVE YOU!
momma
Tuesday, September 14, 2004 4:46 PM CDT the fairest flower of them all
tiniest so sweet and small
arose and lived for time so short
lived life so hard a fearless sort
no time to pause when giving love
gave all to us now home above
and we who linger hearts are torn
still bless the day when you were born
for out of all our deep distress
shall come a peace and thankfulness
that you were here our hearts to warm
to learn from you our lives to form
for greatest teacher smallest thing
you taught your lesson then took wing
This poem was written by a very talented friend from my Neuroblastoma support group.
She puts words to use in ways that amaze me. Sometimes I can just nod in agreement and cry. She says what I feel. It seemed appropriate to share her talents with you all tonite. Her name is Carrie and her husband battles Neuroblastoma. A grown man with children and a loving wife. A childhood disease... the suffering goes on.
Tomorrow marks 2 months since we last held Michaela in our arms.
Tomorrow is a day that I NEVER wanted to happen.
Tomorrow the world will go on as it does, but everyone that remembers Michaela will have a lump in their throat, a hole in their heart and maybe a smile if they are blessed enough to remember a joyful time with her. I look at her picture and tears just stream and the pain is consuming. How could she not survive? I don’t understand. I’ve accepted my fate, but it doesn’t ease the pain, the ache to hold her, the fear of forgetting what her voice sounded like.
Please remember Tucker Haas and his family in your prayers. His cancer has returned. It doesn’t have a name yet, but it never did. His family just built a house and had hoped to begin their normal life.
He faces a biopsy, port placement, a year of chemotherapy and a stemcell transplant before his treatment is complete. This is a strong family, of great faith. They are very dear to us! Michaela and Tucker spent the better part of a year together in treatment. They were able to find joy in between fevers, antibiotics, chemo and radiation. Together they kept us, their parents, thinking positive and they gave us the strength to hope for a cure. They were an “era” at HMC. This time Michaela will look after him from Heaven.
Blessings!
Kim
Sunday, September 12, 2004 9:53 AM CDT SADIE~LOU MEASE
I was born on July 10, 2005. I am a St.Bernard.
I moved into my new home and met my new family on September 11, 2004.
I really didn’t care to check things out or play with anyone because I was sick.
I had my first emergency vet visit that evening. I didn’t have a fever, but I did have an upper respiratory infection, so the doctor gave me fluids and a shot of IV antibiotics. He sent me home with oral antibiotics and I was a quiet girl until about 2am when I decided that I wanted out of my cage now!! That’s when my new Daddy discovered that I can howl! He was proud, I think.... I certainly was..... I went outside to “P” and then he put me back in my cage~~they call it my house, but it really is a cage~~and I rested until 6:30.. I howled again and he came to get me out. I think I know how this works.. If I howl, I get what I want. THANKS DAD, YOU ROCK!
Yesterday, Mom and Dad were very worried about how quiet and calm I was. Mom even wondered if I was deaf, because I ignored her completely. Now, don’t get me wrong, I will still ignore her if it suits me, but I am playing and romping around and really giving them a run for their money. Which, by the way, has been $792.00. That’s just me and the vet visit. They don’t know it yet, but they ain’t seen nothing yet! Wait till I grow up and they need to get the 1000lb bag of food for me every week...
Anyway, I just wanted you all to get to know a little about me. I think something sad happened in this house. There’s lots of pictures of a beautiful little girl on the walls and I haven’t met her yet. I wonder where she is? I hear Mom and Dad talk about her. Her name was Michaela and I know they must have loved her alot. Mom told Dad that she feels like Michaela is happy to know that they have made their first honest to goodness step at being happy. I think that’s where I come into the picture. I hope I am up to the task. I know I can’t replace that little girl, but mom said that she hopes I can bring some joy back into her life. I hope I am up to the task. Mom does get a laugh out of me and so does Dad. Dad said I am doplick. Wonder what that is?
Friday, August 27, 2004 11:45 PM CDT Dear sweet Angel Kay!
I miss you so much. Let’s just get that out of the way. I hope you know how much my life is missing without you! I love you so much and I am beginning to finally realize how long forever is. I know now that I will have to carry on without you for a very long time. I also know that I haven’t begun to feel the entire loss of you yet. I haven’t been back to work and I live my days very care-free. More or less, I am just passing time. Don’t get me wrong, I have some good days. Daddy and I are still strange, crazy and in love. Your brothers make me smile more and more every day, but oh how I miss you. I think when I get back to work and face the day to day life, things will get harder yet. When I don’t have you to come home to, I think my heart will break more.
I have your beautiful picture on my nightstand. The one we took of you out front, dressed in the beautiful blue dress that you wore for your baptism. God, you shined for that day. You were soooo sick and yet you came to life for your ceremony. I was so proud of you and your brothers! I haven’t been back to church since that day. I want to go. I need to go. I just know that I will fall apart completely and I am not ready to do that in public yet. Any attempt to comfort me would just make me sadder. The only comfort I could get is to be with you. That’s how I feel right now. I think it’s normal. Hope it is, anyway. Of course, if you were to send me a butterfly.... that might help....
I look at your picture on this webpage. The one with you, Aunt Jana, and me in bed. How could I smile? I knew you were going to die and I hadn’t told you yet. I just couldn’t face the hopelessness that I knew you would feel. I was a coward and I am sorry for that. Daddy and I tried to protect you and I hope you didn’t miss out on anything that you would have wanted to do if you had known. I think you were too sick by then, but it is something that I’ll never know. When I look in your eyes, I see your innocence and hope. I think I am glad that we didn’t take that away from you too soon. I think we made the right decisions and I hope you’ll forgive me if we didn’t...
Meanwhile, Daddy and I went to a Hospice group support meeting. It was somewhat helpful and I’ll go again. So far all I know is that I am normal. It seems that everyone grieves differently and there is no right or wrong way to do it. I knew that, but sometimes I think it would be nice to have a cut and dry way to behave and feel. You know some religions have certain time frames that families follow. Wear black until____. No social/public contact for____. That would be so much easier. I am really tired of trying to figure this out. Some days I feel like talking to everyone and anyone about you. Some days I can’t even hear your name without crying. Some days all I want to do it sleep. Some days I want to get up and go shopping. I make plans to visit with someone and then the day comes and I can’t face them. It’s not them really. It me. I can’t face how I feel. I don’t want to explain it. I don’t want comforted. I don’t want to be seen at all. It’s like I don’t want to share my feelings. They are mine and it’s all that I have of you.
Somedays I am proud of how we can cope and continue on without you. Other days I can’t believe that we have to.
Through it all, we are trying very hard to help your brothers through this. They miss you so badly!! There really, honestly isn’t a single day that goes by that they don’t say something about you. They want to know if you are bleeding. The wonder if you have toys. They want to know why you don’t want to come home. They are so little and yet they are facing a very grown up loss. I took them to the cemetary to see where their sissy is. They gave you a pinwheel. They had two of them, but they thought you could have one and they would share one. I thought you would approve. They definately want to put an American Flag on your grave. All of the war veterans have one and they don’t understand why you don’t. I expect you will have one next week. Hope we don’t offend anyone.
Well, I will close now. I feel such a pang of sadness even leaving here when I am done talking to you. Please look after us. Help us be strong and make you proud. Such demands on one little angel, but I need you hunny. I really, really need your guidance.
Always~your proud mom!
Thursday, August 19, 2004 4:36 PM CDT Dear Sweet Michaela Ann!
I miss you so much lately that it’s hard to function. You know me though, I don’t push myself too hard. Never have. I just feel like the tears are there all of the time. I can’t seem to cry enough to feel better yet. It’s actually getting harder, if you can believe that.
Last weekend we had a party for your brothers’ birthday! There were 40 people in our house! Imagine that!! It was a bitter sweet time for most people including Daddy and I. Your brothers had a blast and that was what we needed to do for them. You understand I am sure! You always loved a party and that’s what made me so sad.... They had a spiderman cake that Grandma bought, bbq, chips, pretzels, a meat and cheese tray, a taco salad and a delicious chili dip. We played a water balloon game, pin the tail on the donkey and the boys also had a pinata. The boys even got to ride their bicycles after all the other kids left. They got so many toys! You know what that’s like! So much fun stuff you don’t know where to start! By the time you open all the cool gifts, you are too tired to play with anything. Oh, it’s sad how your brothers are deprived! They never have any fun at all!! Just kidding, sweetie, like you they are very blessed by many friends and family! They each got a pogo stick, a web-blaster, cool clothes, a race track, a car shooter thingy, playstation games, computer cds, Mc Donald’s gift certificates, a tent, play dough, spiderman posters, wipe off books, crayons and coloring books, and so much more! I know I forgot somethings, but there was just so much!! Oh they also got one of your favorite books. CHICKA CHICKA BOOM BOOM! I hope I can read it to them with out crying. They ask me why’s my eyes all wet...
Aunt Judy brought Nicholas and Daniel each a balloon arrangement. Each arrangement had a pink balloon in it for them to send to you. We did that when it got dark and I could steal them away from the party. They weren’t satisfied with just sending you 2 balloons, they sent you all of their balloons! Daniel wanted to write a note to you on one of his balloons that said “I love you and I miss you, Sissy!” They really do, you know? I hope you got your balloons, but just in case some bird popped them or if hit an airplane before they got to you~~~ You know my luck ~~~ I wanted you to know.
Yesterday, Daddy and I picked out your memorial marker for your grave. It’s strange that I felt such a need to get that done, but I did. I have been to the cemetary and I know you aren’t there and I feel silly going there. But if someday you get bored with floating on the clouds and riding your bicycle over the rainbow, look down, I’d like you to see flowers on your grave. The marker is very nice. It has doves on it and your name. We asked them to put Michaela Ann Mease, Our Miracle on it. I hope you like it.
I was supposed to go back to work last week and I just couldn’t. I just cry way to much and I can’t face trying to concentrate on anything right now. I asked to start back after Labor Day, on that Tuesday. Ready or not, I have to go on. I really don’t want to. I want to go back. I want to watch you paint in the clinic, steal Dr. Neely’s palm pilot, give the nurses a hard time only to hug them in the end. I miss everything about you. I want to look at the school clothes that you should be wearing and buy you way too many school supplies. Remember 1st grade when I sent you to school with that big ol’ Trapper Keeper with Bratz on it? You got off the bus and told me right away, that Miss Wiltrout said you don’t need that yet. Maybe next year. Remember when I didn’t have the exact change for your lunch money and you would always leave the change on your lunch tray and throw it out with the trash? Silly girl, you never understood what the big deal was and you were right! I do anything to see you on to the bus and see you run to me with open arms after school. You could definately come in the door and throw your stuff anywhere you wanted. I’d never say a word again.
I know these things won’t happen and I know we did the best we could. We can’t change the ending and you probably wouldn’t want to anyway, now that you’ve experienced Heaven. I will be alright and so will Daddy! We are taking care of each other and the boys too! I thank God for them! I know now why I had twins. It wasn’t God’s little joke on Daddy and I. He knew we’d need them. God knows we need a reason, other than ourselves, to go on.
I love you, Angel, and I miss you!!
Momma
Sunday, August 8, 2004 9:46 PM CDT I miss you Michaela! I can’t believe that I can’t just look over my shoulders and see you! Oh baby, you are so very loved! I will never forget your beautiful smile and brave, strong spirit!! I wish I could see you again. I know I’ll see you in Heaven, if I live my life right, but I don’t want to wait. It really hurts. We've all been hanging in there and everyone is taking good care of us, but tonite, I miss you so much! Daddy and I seem to be on the same page too. Everyday we are amazed that we managed another day without you. I've never ever wanted to be away from you! Honestly Kay, I would have probably moved in with you at college. You would have needed to beat me off with a stick! You were such a beautiful daughter and the glue that made us a family. Now we have to somehow find a way to live without you and I think it's going to get harder before it gets better....
Keep sending me signs, Please Michaela!
Love,
Mommy
Sunday, August 1, 2004 12:14 AM CDT Wow, it’s been a long time since I’ve updated! Things are much calmer on Joseph Road than they’ve been in a long time!
The boys made it to the beach with Aunt Kath and Aunt Lori and they stayed the entire week! I really expected them home by Tuesday, but despite the bad weather that they had for a few days, they did great. Nick and Dan did well too!! Haha!
Either Dave or I spoke to the boys every day and we were kept up on all the fun details! At first, Nick was a bit frightened of the pool and wouldn’t leave the step! Kay was like that too, at first! Daniel got right into the swim of things, so to speak. That must have helped Nick because, by Tuesday, Nick was very excited to inform me that he wasn’t a “step baby” anymore. That means that he ventured off of the step and into the pool. From there, he wasn’t to be stopped! He was jumping in and swimming under the water in short order! He actually swam under water before Daniel did...
When it came to the beach, Nicholas was not scared at all! He went right in and it was hard to get him out! Daniel wanted no parts of the ocean, but he enjoyed the sand immensly! These boys continue to surprise and amaze me! Just when you think you’ve got them all figured out, they go and change the rules on ya...
Nick and BJ, our beachcomber friends, were very prepared for and excited to meet the boys! They were very close to Michaela since she was a baby but they had never met the boys! I am told that BJ wants the guys to come and visit her in West Virginia! BJ is a 3rd grade teacher and, according to Aunt Lori, has the patience of a saint! I believe it! The boys couldn’t get enough of Nick and BJ and really enjoyed being with them! Nicholas and Nick are from this point on known as “Big Nick” and “Big Nick”. I think it started as “Big Nick” and “Little Nick”, but my Nicholas changed that. He doesnt’ like to be called my baby boy either! Oh, but they are growing up!
I am so glad that they had this wonderful opportunity to spend such a wonderful week with their new friends! I am amazed at Lori and Kath’s bravery! This could have been a very ugly week, especially with the weather in the beginning, but everything went great! The guys got to swim, fish, shop the boardwalk. They saw horses and dear at Aseteque and truly had a blast! Lori and Kath told me that Nicholas and Daniel were very polite and well behaved! The boys came in when asked to, ate lunch, took naps and came in for supper without a fuss. Other parents were asking Lori and Kath how they were able to get the boys out of the water without World War III.
Please, thank you, no thank you, and excuse me, were words used all week!!! I am very proud of Nick and Dan!
Now, they are home and bored! Poor boys! Home is never as much fun as vacationing with friends, but at least they get to go to school! I bet their teachers will hear all kind of stories about the O.C. adventures!!
Dave and I are doing okay. I think we are still relieved that Michaela isn’t suffering! She is definatley letting us know that she is around us. The sun is brighter when it is setting then I have ever seen! The clouds are prettier and the butterfly stories keep coming!!! Thank you Michaela! As long as I remember where she is, and have faith that I will see her again, I am able to cope. I don’t think I’ve seen the worst of my grieving and I expect I will spend many years coming to terms with all she was, is and went through. I believe God will let these thoughts and emotions come to me in good time. Right now, He is being very gentle with me and allowing me to touch the pain, cry, and recover myself. When He thinks I am ready, He’ll let me feel the extent of my loss.
Please pray for Alex and Simon. They are dying and their parents are just beginning to feel the loss.
*%^(^&%)(^*%
(use your imagination)
Blessings,
Angel Kay’s Momma
Kim
Sunday, July 25, 2004 2:54 PM CDT Hi sweetheart! How’s Heaven? Didn’t I tell you it was better and more beautiful than I could describe? I told you that I would never lie to you....
I miss you so much! So does everyone else, I am sure! I did buy that journal, but I still have the need to write in your webpage. It just helps me so much.
Your brothers went to the beach with Aunt Lori and Aunt Kath. They left Friday and I honestly expected them to be back by now, but they are having a good time. The weather hasn’t been good for them, but they still took a ride over to see the horses that you loved! They also peed in the sand and thought that was really cool. Now, I don’t know why or where they did this, but they were delighted to tell me that they did it.
BJ and Nick are helping Aunt Lori and Aunt Kath keep them busy and happy! I know the entire Beach Comber crew misses you, but I am glad that the boys are getting a chance to have fun too. They never minded that you got to go where they didn’t, but now that they’re older, they are ready to do some fun stuff too.
Did I tell you that I miss you! I just can’t believe that you aren’t here! It’s like someone took my right hand... my better half...., but I am feeling more faithful and sure that you are finding Heaven to be more than I could ever tell you too. At first I was afraid that maybe I was wrong. It was more than I could bear, then I heard all the butterfly stories from so many people and I am able to believe. Thank you, my love!
Yesterday, Nicole and I did a road trip to Big Lots and I really felt lost without you. Shopping is hard, but you know me, I will keep trying and in the end I will make you proud. Last night Daddy and I took Papa and Nicole out to eat. I can’t bear to go to the Lone Star without you, so we tried the Texas Roadhouse. I was still feeling very misty, but I had a few pinacoladas (3), and a few Corona’s too (2). That helped. You would have enjoyed it there! It’s a very busy place with lots of people to watch! You always loved to people watch! Remember when we got a pretzel from Auntie Anne’s and watched people in Park City? That was fun! Just you and me!
Today Daddy went to see Angel and Chris. Angel had a stroke and we haven’t seen him since. I didn’t think I could handle visiting today and decided to stay home. I thought I would surprise Daddy and get at least the living room clean. I’m still not done, and he’ll be home soon. Oh well, I really needed to “talk” to you. I was thinking...Do you remember when you would see me cleaning and ask me who was coming? That kinda peeved me off sometimes, but you were usually right. Someone was coming over or I wouldn’t be cleaning....
I am listening to the music mix that Nicole put together for your celebration of life. I was cleaning off the refrigerator and found the note that you wrote to me on Mother’s Day this year. It said ~ Happy Mother’s Day Mom
I will be nice to you and my brothers all day,
I promise.
Love,
Michaela
Well, that did it. The dam broke and I was finally able to yell, cry and carry on. I’ve been waiting to be able to do that and hoping that I could be alone when it hit. I was and I feel better. It washed me clean for a while, hopefully. I don’t think I’ll ever stop missing you and wishing I could have just one more night with you to cuddle. One more road trip with you. You are always on my mind and I am grateful for the good memories and I really do feel blessed to have had you in my life. I just wish you were still here and that you didn’t have to hurt the way you did. I wish I didn’t have to take away your hope of surviving. I really wish the last words that you had for me weren’t “goodnight...I mean the normal one”... Did you know and not want to upset me? Did the cancer finally make it to the point that you could sleep? I know you didn’t give up, but I wish I knew that you weren’t mad at me... Would ignorance be bliss? Could I have saved you some sorrow? I will keep looking for signs and pray for you to come to me in my dreams. I guess that will have to hold me over until we meet again. I promise that I will be good so I can get to Heaven too. I couldn’t bear to think I would be denied my eternity with you.
I love you, my angel!
Momma
Tuesday, July 20, 2004 10:01 PM CDT Dear friends, I have this terrific urge to get some feelings out. They are mainly things that I want to say to Michaela and I plan to journal. Tonite, I don’t have my journal yet so if you won’t mind, I will write to her here.
Dear Michaela,
You were quite a beautiful girl! Daddy and I were so proud of you. WE KNOW that you are in heaven and watched from there, but if you had to really be in the casket, you wouldn’t have any room. So many people wanted to make sure a piece of them went with you. Just like a piece of you stays with them. I am included in that need. Tammy went and got a Lone Star menu for you. Silly huh? But I just had to have one and she got it for me. They were going to give her a rinkydink paper one until she told them the story about how much you loved their food....then she got the real deal! I was so happy to put that there, as silly as it seems. Tucker and Taylor were not there, because they are too little, but Lisa and Chad put 2 sweetheart roses in. You had your favorite rosary that Aunt Lori and Aunt Kath bought you and a picture fo you and Aunt Lori making cookies this past Christmas! I put your sandal pendant on you and Daddy and I bought you a gold cross necklace that the nice funeral lady, Lisa, put on you for me. You also wore your ID bracelet that Uncle Bob gave you and your “Hope” bracelet too. I hope you don’t mind, but I took the charms off of your bracelet and put it on mine. I will take good care of it. I promise! You also have your crystal birthstone angel with you. Brandon and Carrie placed coloring book pages in there for you. They did a great job, you would have enjoyed it. Brandon and Carrie are both very sad, but know you are at peace...Amanda and her whole family came today. Amanda was beautiful, she had on very fancy shoes, but like your mom, they didn’t last long and she was barefooted... Cristian and his family were there for both days and Cristian was so sad! It broke my heart, it really did. You know how much he loved you! He asked the same question that you did when Amy died. Remember? “why are all my friends dying?” I surely hope that changes in my lifetime. It just must! Dr. Neely says he is now working in the lab trying to come up with some new things to help the neuroblastoma kids! He didn’t wear his pink shirt. I teased him about that.... I know you would approve. Some of the special nurses that you love were there. Hilarie, Amy, Heather, Holly, Becky from LPA too.... Heather is such a pretty pregnant lady! It would have been nice if you could have met her baby and fed her a bottle or two.. There’s so much that I wish you could have done. I know that all these things are really meaningless to you, you’re in Heaven and no earthy joy could compare. I only know earthly things though so I still do a lot of wishing...
Alot of yesterday and today are a blurr... so very emotional.... but I felt that you would be pleased with the way everyone pulled together and in three days tried to adequately celebrate and well lived 8 year life.... I missed you so, but could feel your spirit.
Mrs. Adair’s husband, Josh, played guitar and sang “The Dance”. Aunt Jana made a movie of you and so did the funeral home.... Aunt Jana also wrote a poem and she too was able to share it with all the people that you loved or that loved you. Everyone did their absolute best to show you how loved you are. You know that though, I know...
Oh baby, there were so many people there. I know you watched and gave us all strength and I thank you! I know you were right there when I gave your eulogy. I couldn’t have done it without you and you give me the strength to go on....
Aunt Lori, Aunt Kath and Mummum made you proud, I am sure. Mummum feels so much and is so quiet. Not like Aunt Lori and Aunt Kath. She keeps it in as long as she can, but I promise that it will come out and Aunt Lori and Aunt Kath and I will be there for her and help her through.. Aunt Lori and I will be doing lunch just the two of us soon and guess who is going to the beach this year. Freak of Nature #2 and #3. Do you think they’ll keep Nick and BJ busy enough? I know they love you very much, but I hope that your brothers will be able to bring joy to everyone’s vacation. I will miss them alot!
Everyone looked so nice,, in your honor again. Mr. Ghee was there and he looked so sad. He thought you were something special, that’s for sure! Maybe you could send a butterfly to tickle his nose some day.... Just to let him know you are thinking about him and that you are okay. Lloyd was there too...he’s know you your whole life and introduced you to shirly temples at the club... He is keeping an eye on PaPa for us. I know he’s very, very sad. We all are..... How can this be???? Someday we’ll know.
Grandma and Grandpa are being very brave. Aunt Sandy, Aunt Judy, Uncle Bob and Uncle Mike will help take care of them for you... Daddy and I will too... as soon as we get squared away with your brothers...
Your Daddy and I are trying very hard to move on with your brothers....I know I don’t have to tell you, but we wish we didn’t need to. Your brothers have alot of questions and sadly I don’t have many answers. What we tell them is that you are an angel in the clouds. That you can see us and hear us, but we can’t see or hear you. The part that made you so very wonderful was already in heaven and what they said goodbye too was what God allows to stay behind for a few days to say goodbye to. They don’t understand and that is okay. We’ll work on it and they’ll know how much you love them every single day! I miss you so much and I know Daddy is just waiting for you to knock on the wall and send him to get you more chocolate milk. His evenings are going to be very empty without you.
. Send me some signs too, okay? I think you are, but I don’t want you to get too busy with your new home and friends to remember dear old mom. Boy, do I feel old! You know how tired I get crying. This is hard work sweetpea, but nothing like you were able to do!
Well, I have rambled long enough, but I do feel better. You are a great listener, but a better hugger. I miss you.
Forever loving you, my angel Kay!
Friday, July 16, 2004 2:14 AM CDT Hello friends!
I have to thank you all for the tremendous out-pouring of love to our family! We have been so blessed by so many kind hearts holding us up at our hardest times! I promise that the blessings shown us will be passed on. It won’t stop here.
Michaela’s arrangements were made today.
All services will be at Groff’s Funeral Home
The address is 234 West Orange Street
Lancaster, PA 17603
We will have a viewing for friends and family on Monday, July 19th from 6-8pm
On Tuesday there will be a second viewing beginning at 11am. At 1:00, we will celebrate Michaela’s life and proceed to Conestoga Memorial Park for her final blessing and burial.
In leau of flowers, we would ask that, in Michaela’s memory, donations would be made to either The Four Diamond Fund or Children’s Neuroblastoma Cancer Foundation.
There will be envelopes and brochures available at Groff’s for anyone wanting more information.
CNCF
PO Box 6635
Bloomingdale, IL 60108
The Four Diamonds Fund
Office of University Developement ~A120
600 Centerview Drive, PO Box 852
Hershey, PA 17033-0852
Both organizations are wonderful and have been a blessing to our family. We would be proud to have Michaela’s memory honored in any way you feel appropriate.
Blessings,
Kim
Thursday, July 15, 2004 0:47 AM CDT Michaela flew away this morning to be with Jesus and his Angels.
Our loss is heaven's gain.
We will never be the same.
We will always with she had better.
We will always be grateful for the gifts she gave us.
She was at peace and free of pain.
She died with the dignity and control that she lived with.
My heart is broken.
Blessings.
Kim
Wednesday, July 14, 2004 12:04 AM CDT Michaela is still with us and very comfortable. We are satisfied that her pain is very well under control. Too bad there’s not a pill for all the broken hearts coming.
Hospice is on the way with a doc to better give us an idea of what’s happening and how long it will be before God’s angel, my best friend, flies to heaven. Dave and I know it may be as soon as tonite.
Blessings!
Kim
PS
Keep praying...
Tuesday, July 13, 2004 2:15 PM CDT This is not the kind of entry that I would normally border with balloons, but they are Michaela's favorites and this is all about her...
Although we will continue to pray for a miracle for Michaela, it is very clear that her time with us is very limited. Only God knows how long we will have to hold her, but it could be as short as a week.
Needless to say we are absolutely devistated and can’t believe the conversation that we had to have with Michaela today.
God, I love her name. I will never stop saying it.
Michaela knows that she is dying. As we promised, we told her when we knew. She knows that we will continue to pray for a miracle, but that medicine has done all it can. She knows how sad we are, but hopefully knows that Heaven only holds beautiful days for her. Pain-free, pill-free, tumor-free, and tear-free days. That will be her Heaven. Lots of Cinnamon Toast Crunch cereal and Dr. Pepper soda. Long flowing hair on top of a scarless body. That is where she will kiss her boy or at least have the joy that it will bring.
Please pray for us. Please pray that Michaela will live her last days in comfort. Please pray that angels come to her and take her fear. Pray that she knows that her name will always be said in memory of her and she will always be a part of our family. Death can’t change that.
Cancer didn’t win, but we are losing Michaela.
Sunday, July 11, 2004 8:58 AM CDT Good morning everyone! Can you believe that I am up and typing? Wow, I might have had you all fooled.... Bummer, now you know that Dave almost always handles the morning shift around here. Sometimes, he also needs to handle the afternoon shift. Ya know what, lately, he’s handled a lot more than any one man should. He is very good to the kids and me and we are all very grateful, even if we don’t always tell him so.
Michaela’s last trip to the clinic was on Thursday and she only needed platelets. We are going to try to stay home until the next Thurday and see if we can possibly get away with only one trip a week to the clinic. Thurdays is a better choice than Monday because we are more likely to avoid an ER visit for blood. So far we haven’t ever needed to go to the ER for blood or platelets, but it has been close...
We did begin giving the oral VP16 every day, as oposed to every other day. I haven’t seen any changes~good or bad~so I think that’s the way we’ll continue.
Sadly, we have seen some new symptoms that tell us that the disease is progressing dispite the chemo. There really wasn’t much hope that it would do much, but I was secretly holding out hope that it would help slow down the disease. Maybe it is in some ways, but certainly not in all ways. Michaela is having a hard time lately putting thoughts into sentences. The words are there, but they don’t come out very organized and you can see, and hear, Michaela struggle. It is frustrating for her and us....
Her pain is relatively under control and the pump is being adjusted to accomodate her changing needs.
We had the hospice nurse here last evening to adjust the pump and to check out the rash that threatens to take over her face. It started as 3 small blister type things on her right eye lid. It started Monday nite and was still there on Thursday when she saw Dr. Neely. Who knows though, she might not have allowed him a good look. Anyway, it has now spread to a flat, splotchy rash over the rightside of her forehead. Her eyelid, where it started, is now practically swollen shut. In addition to the rash, she has been picking away at her lips and the bottom one was beginning to look swollen. If you remember, we had that issue before and it responded very well to antibiotics. The nurse was able to talk to Dr. Neely and he prescribed the same one as we had last time. I woke this morning hoping to see a much improved Michaela, so far it hasn’t improved at all, but she isn’t complaining either, so we’ll see.
I thank you all for all of your supportive messages and emails! I feel very confident that whomever wrote that letter now knows where they stand and it isn’t among our friends! I will waste no more time on it, but I promise to let you all know if I find out who it was.
My latest project is to find a suitable poem, that expresses our love of Michaela. The funeral arrangements are mostly made and there are just a few things that I need to get done before we need them. As I have said before, I am hoping that if I get it all arranged the way we want it, she’ll live through this relapse and we won’t need it. However, I know I won’t be worth my salt if I lose Michaela before accomplishing these things. If anyone knows of a poem or verse that might be suitable, please email me privately.
I have to tell you one more example of the love and support that we have been blessed with. During this battle with cancer, we have been blessed to be surrounded by the best of friends~new and old. A long time ago I began an email friendship with someone from Allentown. Her name is Sylvia and her family loves Penn State! We bonded when I talked about going to a football game with my Dad. Our friendship grew through emails and snail-mail. Well, a few weeks ago my friend Sylvia offered to drive from her town, about 2 hours away, and bring us supper. Things at the time were very rocky with Michaela’s pain and I never took her up on the offer. When the offer came again this week, I gratefully accepted. Sylvia and her daughter drove the 2 hours and brought us dinner and we were finally able to meet. She couldn’t stay more than a few minutes but brought us an amazing meal. The food was delicious and we always appreciate the gifts of food that we are fortunate enought to have offered and delivered to us, but for someone to drive 2 hours to drop it off and then leave immediately, well, that just blows my mind! Thank you Sylvia! You are a blessing!
That’s all for now. I don’t know if it’s time for a nap or time for laundry and grocery shopping.... Your guess is as good as mine, but I will let you know how it turns out.
Hazel, I mean Dave, is already tackling the dishes, so I really should make an attempt do do something worthwhile,,,,,,but,,,,,,,
Blessings!
Kim
Tuesday, July 6, 2004 4:54 PM CDT Hello friends!
I say hello friends, knowing today that all the people that read this aren’t our friends~at least not the kind of friends that I need in my life! I found that out a few minutes ago while opening my mail. I was quite behind in that task and there was, in amongst the bills and junk mail, a sweet little envelope. It was very eye catching because the sender had cut and pasted sweet little flowers on the envelope. It had no return address, but that’s not unusual, and I was expecting something that would lift our spirits and remind us that we are cared and prayed for. That was not what this letter was about. On very pretty strawberry pot stationary the author wrote this note to Dave and I. I will type it here exactly as it reads.
6-26-04
Dear Mr. and Mrs. Mease:
I am one of the people who helped in the fundraisers for Michaela. We also had a daughter who died from an illness.
There comes a time when parents need to wise, important decisions. Are we truly loving this child by prolonging her/his life-and pain- when medical treatments no longer bring relief? Are we being fair to-or selfish- to the insurance Co. and other families in similar situations, by demanding/suing for procedures you were informed were not covered?
Our suggestion: Trust Hospice, Drop the lawsuit, Trust Almighty GOD to heal your dear Michaela according to His will. Sometimes healing and/or pain relief comes through death; then the suffering one is safe in the arms of Jesus and free from pain where you will someday again be with her forever.
Blessings to you.
I have no option, but to write my response here.
Dear Anonymous writer:
I will not discuss any insurance issues, as I cannot. I will say that you don’t know what you are talking about. I have faith that the right remedy will come to be.
I won’t discuss how cowardly an anonymous letter is. I can’t fathom why you wouldn’t include a return address. You felt strongly enough to write the darn letter. Don’t you feel strong enough to debate me? I am just a Mom that is trying to do what’s right by her daughter and entire family. For you know, when a child is dying, it affects the entire family and community as well.
I won’t ask whether your child dies as an adult or a child. Honestly, I wonder, but it would be unfair to judge your loss~whoever you are.
I will not explain my understanding of God’s healing. I don’t guess my beliefs would ever be adequate in your opinion. If you knew me, really understood my beliefs as a Christian, you never would have put pen to paper. That, I am sure. If you were a good Christian yourself, you would not have added to my pain. That too, I am absolutely sure.
I hope that you have regretted sending your note, even before you read my response, but I don’t expect you did. You seem very sure of yourself and of my selfishness. Shame on you for being judgmental.
Sincerely,
Michaela’s mom~Kim
Her God Appointed Advocate~
Thanks for letting me get that off of my chest. I have enough to do with my Burger King cup holder issue and all.. but when our writer underlined selfish, well, let’s just say I felt compelled to respond. Sadly, this was the only way to do that.
Michaela is feeling pretty darn good. She isn’t complaining of pain very often, but is sleeping a lot. Not a problem! As long as her pain is under control. We have a day off from Hospice and Hershey tomorrow as long as she continues to do well!
Thank you very much to all of our friends, family and community for checking in on Michaela and signing her guestbook! We are truly blessed!
Blessings!
Kim
Monday, July 5, 2004 6:23 PM CDT Hi! Happy Monday!
Today was a pretty good day! Let’s start there...
It was decided that Michaela would get her chemo, VP16, everyday for 21 days total.
After that, we will take 7 days off and then do it again. I don’t think anyone expects big things to happen, but I am hoping that the full dose might shrink the tumor enough to ease some of her pain. If she gets a fever, we will treat her at home and pray for the best. If she gets neutropenic, Dr. Neely said that they can probably formulate the GCSF from shots to an IV dose.
Michaela got platelets and blood today. Other than being rude to Dr. Neely, she had a pretty good day.
I felt better until supper. That’s usually what makes me happy, but get a load of this!
Tonite we had Burger King for supper. I loveBurger King, and even though it isn’t a Weight Watchers meal plan, it works for me. I hadn’t eaten all day, except for watermellon, and I was starving! A whopper wouldn’t do. I had a double whopper. I ordered it kingsized, of course, and was smiling from ear to ear as I pulled away from the window.
My smiles turned to words coming out of my mouth that would make a sailor blush. Let me explain, when you “king size” a value meal, you get a soda so large 2 small children could swim in it. Those pools, or cups, don’t fit in the handy dandy cardboard holders they give you. Unfortunatley, you don’t know that until after you tip the cup over 4 times, eventually spilling the entire 48 ounces of soda in your husbands clean car...( which by the way is the last clean thing in our lives)
I was furious! I was screaming words that should never come out of a Mother’s mouth and when that didn’t make me feel better, I made up words.
What is wrong with these people? Don’t they know that something so top-heavy isn’t going to ride in a flimsy carrier? Maybe I should have known too, but it’s their job, not mine. My job is to order, pay, check the bags for the always missing item, and drive home to my starving loved ones. Do I have to consult with Burger King on the cup holder construction?
Do I look bored???
Blessings!
Kim
Sunday, July 4, 2004 5:46 PM CDT This is an email that I just sent Amy and Dr. Neely.
They have been through a lot with us, and I will let you know the answers that I receive...
Hi Amy,
I hope you had a great holiday! Even though you should have off today, I am glad that you don't.
I have to tell you that Michaela's pain, knock wood, has been under control since Saturday. However, she is losing strength on her right side. Her arms and legs feel heavy and hard to use periodically. I am guessing that this is from the neuroblastoma lump on the left side of her head. Either that, or cord compression. Neither one is good.
I have been having a very hard time with this. I know it isn't meant to be easy watching your child detiorate, but I think it's more than that. I think we are making a mistake in letting her go this way. A mistake is the last thing I want to remember from this time in her life.
It has dawned on me that we have been here before. We have had the hospice/ let her go talk months ago and chose not to. Right after THON, she was in the same state that she is in now. We gave her chemo and she had good days...topo/cytox...gave her comfort even if it did do a number on her counts.
What would be wrong with giving her vp16 everyday or even topo/cytox? Should becoming neurtropenic really keep her off of a chemo that gave her symptom relief? When she has been admitted with fever and neutropenia, honestly, from the symptoms that I remember, I think that would be an easier way to die. And really, who says she would die if given antibiotics at home and managed without a hospitalization. Her blood pressure drops, she's sleepy, but really, so what? And to be frank, why couldn't there be a compromise on not giving neupogen shots? When we are in the hospital, the medicine goes right into her line. Why not at home~now that we're near the end? What is more inhumane??
This is coming off agressive, and that's not what I am trying to communicate. I know, really know that you, Dr. Neely, everyone really, has Michaela's best interest at heart. I don't mean that you don't...I just am not sure that we made the correct decision....
Maybe, I am not supposed to, but I honestly don't see where she is much worse physically then when she needed chemo in February and March?
I am sorry to greet you with this email first thing after a holiday, but I was hoping to give you and Dr. Neely a heads up. I trust you both to help me understand or make the changes accordingly....
I guess I am thinking that we aren't even giving Michaela, a child that doesn't want to die, a fighting chance now. We always did before.... As her mom, I think if the choice was hers to make, that is what she would want....
Since it is a Monday after a holiday, I will send this to Dr. Neely too....Maybe you got a well deserved Monday off....
Thanks for helping us through this...
Blessings!
Kim
Saturday, July 3, 2004 6:51 PM CDT Well this update is going to be a real rollercoaster ride. Brace yourselves..
Everybody, keep your hands in side the car at all times!
Thursday and Friday were quiet days. I did very little around here and that includes the bedroom....Oh well, who cares?
The evenings were a completely different story. Both nites, Michaela was in excruciating pain for about 2 hours. Hospice came out both evenings and upped her pain medicines. We also began 2 new medicines. One is a steroid and one is for neuropathic pain. Neither did much good last nite. Last nite was the worst! I won’t go into details because words can’t describe her pain or our helplessness. Her pain lasted for the longest last night and was the most intense. I’ve never seen a drug overdose, but if I had to guess what one looked like, I would say it looked like Michaela last night. Her pupils were sooo small and she could hardly keep her eyes open. Despite that, the pain kept a hold of her! Finally, the medicine cought up with the pain, shortly after the hospice nurse got here, and she rested quietly for about an hour and a half When she woke again, it was like she was a different girl. Like it never happened. She asked for a bowl of frosted flakes, ate that, then asked for another. I asked her if she remembered the pain and she said that she definatley did. I guess it’s too much to ask for her to foget something that intense.
As twilight comes tonite, a feeling a dread is rising in me.
Today though, I woke to a pleasant surprise. As soon as Michaela and I woke up, she asked to go shopping. Yup! You read that right! Well, I couldn’t get ready fast enough! I called Tammy quick and she grabbed Lyss and Em and off we went. Those sweet girls have been waiting so long for Michaela to feel good enough to get together! I am so glad that Michaela was able to spend time with them finally. So, off we went! Hind sight is 20/20 and honestly, I think it was a bit more than Michaela was ready to handle, but what a joy to hear her ask that we had to try! We went to Kmart and shmoozed around the girl’s section looking for sundresses. Couldn’t find anything there and Michaela was getting frustrated, so then we went to shoes because Nicholas needs a new pair of sneakers.. No luck on that either! Can you believe it? Now, I am frustrated! On to toys. They boys had asked specifically for a dumptruck and a bulldozer. Now you know it doesn’t get simpler than that, right? WRONG! I couldn’t find them either! I made due with a towtruck and a backhoe and crossed my fingers! Michaela got twindoll babies that came with bottles and a baby bowl and spoon. Tammy also managed to sneak another doll in the cart for Michaela when I wasn’t looking, so now she has three!!! We were having a very good time and then it hit. Out of the blue, Michaela starts crying and screaming! I am still not sure why, but we left and Tammy took care of paying for our cart load and met us outside. Michaela calmed down rather quickly and when she came home, she took a nice nap. She is napping again as I type this and I hope that the extra rest will keep some of her nightly pain away...
While Kay and I went shopping, Nicholas and Daniel went away with Aunt Lori and Aunt Kath. Aunt Kath’s brother has horses and Kayla went there last year, so it was the boys turn this time.... They were very good boys and each took turns sitting on the brown horse. They don’t remember the horses name, but it didn’t have a saddle...
Okay.... You know how the boys like to tell their stories. That’s as much as I can get out of them for now. At least, that’s as much as I can make sense out of...
Oh, I have to tell you all about Nicholas’s glasses! They are blue wire frames and he looks like very intellectual in them, just like his mommy...Yah, right! Anyway, he was a very good boy for Aunt Kath while I got my eyes examined. When the doc was done, he told me that my eyes had changed, but not too drastically at least. I was happy and said that I was glad that I didn’t need bi-focals yet. He said “oh no, you’re still too young for that!”
That deserves it’s own line...
He said “oh no, you’re still too young for that!”
Well, I just jumped out of that chair and gave him a great big hug! I asked him to come home with me and tell Dave, but he wouldn’t. He was late for a meeting. Then I asked him to repeat what he said in my hidden pocket taperecorder and again he said no. So, sadly, I have no proof. As I sached out of the exam room, I had to slow down and make sure my fat head would make it to through the door.
Happy Fourth of July!
Kim
Thursday, July 1, 2004 8:52 PM CDT Hello all.
Yesterday, Dave, PaPa and I kept an appointment that we hope will be a waste of time. We made Michaela’s final arrangements. We, of course, didn’t want to do it, but if it’s needed, we know that we won’t be able to make good decisions. It was best to get as much of the details planned and decisions made.
Maybe, like the hospital, if you are prepared, you don’t go....
Yesterday was a very quiet day for Michaela. She had an incident with her pump running dry around 1am and by the time hospice came and corrected it, it was 3am. While waiting, Michaela suffered a good deal of pain. It wiped her out and she and I spent most of the day in my bed. We even managed to convince hospice that we would be okay without a visit. They are truly a blessing and I am thankful for their expertise, but it is still very hard for me to have someone different in the house every day. We’ve never been like that.... Luckily, we had Michaela’s pain under control and had the day all to ourselves.
Aunt Jana and Michelle came and stayed with the kids while Dave and I kept our appointment. After that we went out for a bite to eat at the Lucky Dog. If you’re local and haven’t been there, go! There food is very good and the patrons and owners have been very good to our family. They deserve all the business and success they can get!
I enjoyed my chef salad and 2 bottles of Corona. When I got home I was feeling a bit silly. I am normally not such a cheap date, but with all the stress, I think my metabolism is changing. ~I wonder if they’d buy that at Weight Watchers? ~ Well, that’s neither here nor there is it? Aunt Jana had tidied up the house for me and when I thanked her she said that she didn’t do much and was going to tidy up my bedroom. She said that she opened the door and closed it right away.... SISSY!
Today was another sleepy day for Michaela. She didn’t wake until noon for the hospice nurse. They drew labs for blood counts and we got the results and I am confident that it will be okay for us to wait until Monday for a transfusion. Fortunately, they are open and Dr. Neely will be back. A second nurse came to evaluate Michaela’s pain and adjust the amount of dilauded that she gets. Michaela was feeling pretty good, but had needed to push the button for break-through pain a good bit. The nurse upped the dose and was on her way again. Michaela and I headed back to bed. I just love to cuddle with her, but all I can really do is lay next to her. I am afraid of hurting her.... She loves to hold my hand and that suits me fine. It’s these times that I think I will miss the most. Bedtime has always been our special time....
The calm ended suddenly around 5:00 when Michaela was in the bathroom. She suddenly said that she had no control over her body and she was so upset. She said that her left side wasn’t feeling right. As we calmed her down, it seemed to improve. We almost called hospice, but we thought perhaps she had slept funny. She had just woken from the nap and it made sense. So there we are. We’re all in the livingroom discussing supper and she begins to scream. I mean at the top of her lungs with such a pained look on her face! It was horrible. I called hospice, who called Dr. Powell, who called me. He didn’t know what was causing it and really didn’t want to make us come to the ER. (Good thing, because we wouldn’t have.) He told me that hospice had his permission to give Michaela as much as was needed to control the pain. Back comes another hospice nurse. Just as nice as the others. Michaela does have an “attack” while she was here, but not as severe as the others. While we don’t know why Michaela was in such pain, I am happy to say that she is now pain-free again.
Her dilauded is now running at .8ml per hour with .4 permitted every 10 minutes as needed. So far, so good.
If everything goes well, Nicholas and I will be ordering new glasses tomorrow. I am anxious to see how he handles it. For now, he seems excited, but who knows what will be when we get there....
Blessings!
Kim
Tuesday, June 29, 2004 6:37 PM CDT NEW PIX!!! NEW PIX!!! NEW PIX!!! NEW PIX!!! NEW PIX!!! NEW PIX !!!
Hi everyone! Everything here is going pretty well, I must admit. It’s been quite a shock to be told how little time that we have with our love, but I have been pleasantly surprised by how well she is doing.
Hospice has been here every day except Monday and each time we meet someone new. It’s a little nerve-wracking, but each and every one has been wonderful. Michaela does seem to shy away and hasn’t really warmed up to any one person more than the other, but she says they are all nice. That’s good enough for me. Her pain medicine has been increased steadily, daily actually, and we are up to 4.0 ml of dilauded that runs continuously. If at any time the pain breaks through that amount, she can push the button and get a bolus of 2.0 immediately. She can push her button every ten minutes if she needs to and it is all recorded on the pump. The nurses check every day and adjust the hourly rate accordingly. The goal would be for her not to need to push the button and still be awake, alert and pain-free. Over a 48-hour period she pushed the button 37 times......
Sunday we had a Mease Family work party. I didn’t have to do a thing. Sandy and Judy took care of everything. We had barbeque, chips, and veggies with dip, deviled eggs, brownies, and meat and cheese cubes! It was all yummy, but I probably gained back the weight that I lost last week~might have been the last 5 brownies... The party began at 1:00, but Kay and I didn’t participate in the beginning. We were napping together until I woke up at 5:00. I am ashamed and proud to tell you that Sandy, Judy, Christine, and Nicole managed to clean Michaela’s room and get tons (and I DO MEAN TONS) of wash done for me. All I have to do is put it away. Yeah, Yeah, it’ll get done....
Anyway, the men of the family, worked diligently at assembling the swingset. ( I have the empty beer cans to prove it.~just kidding guys) When Nicholas and Daniel woke from their naps, they helped the men while the ladies moved on to their room. I am told that they only reason that my room didn’t get done is because Michaela was still sleeping in there. Let’s just say I am glad that they didn’t. The humiliation would have been too great. I can only let the skeletons out of my closet a bit at a time and Lord only knows how much their little hearts could handle. I have to admit I am the messiest girl in this family....and was even when cancer didn’t disrupt my life, I just hid it better then.
Before Grandma and Grandpa Mease left for home, Michaela came out to say hello and goodbye. Grandma went in for a hip replacement yesterday and will be out of commission for a while. Hopefully, Michaela will have more good days and we’ll get to visit them when Grandma is up to it.
Later in the evening, Jana, Bill, Alec and Michelle came over to visit too. Michaela and Michelle had fun swinging for a while before Michaela was ready to call it a night. It was a very good day and will always be a bittersweet memory for me. I think I will have quite a few of those bittersweet days to remember.
Monday we went to clinic and Michaela really wasn’t feeling all that great. It was a long day because she needed platelets and red blood. We were there from 11am til 4:30. When we got home she did perk up a bit, but she was in bed very early. We got to see some very special friends and it was a very emotional day for me. Thankfully, Papa has been very good to me and comes up to spend time with us in clinic when he can. Monday, he did and I needed it. The tears were just waiting to fall. Sometimes I do so well, and others I can’t stop the pain and the tears just fall.
Today we both slept in. I was up by 9 and Michaela slept until noon. The hospice nurse came at 1:00 and she brought our social worker with her. The visit went well, but Michaela was a bit shy and wanted to cuddle while she talked to the nurse. You all know how much I hate to cuddle? Yah, right! After we were all squared away, Michaela and I took a nap together. Another bummer deal! I really wanted to put the laundry away and I think the grout on the tub needs scrubbed too.....teehee....
When Dave and the boys came home Michaela and I woke up and I gotta tell ya, she was in a terrific mood! She has steadily looked better to me. The pain was making her look terribly tired and cranky. Tonight, she looked and sounded like a million dollars. She gave her brothers a hard time, sat on the kitchen counter while I’m making supper, and was exceptionally sweet. She wanted to cuddle and talk and I am thanking God for every minute.
It’s hard to believe that this friggin’ disease is raging inside her.... I am so grateful for all of our blessings, but I know that the end is coming and franky, I am pissed! There is no more use in fighting anymore and I just wonder what am I supposed to do with this rage inside me? It used to fuel my fight with cancer. Michaela can’t know the fear and anger inside me. Everything left for me to do requires a calm heart. I want to give her as much joy and comfort as I can. I want to hold her close and lead her to her next life without fear and pain. I have to hope and pray for a miracle while accepting our fate. I am the Mother of three children and only two will grow up. My blessing, my dream come true is going to Heaven. I know she is a child of God and her home will be beautiful. All she ever dreamed of will be. All the pain that she’s felt will be forgotten. She will watch us and send us signs to let us know she’s all right. But damn it...why can’t she do that after she grows up. Why can’t she be a mommy, a grandma.....it so damn sad. I wanted to help her be a mommy......
I am so afraid that she’ll be mad at me too. I always told her that I would tell her if I found out that she was dying. Trouble is, we don’t know when she’ll die. Right now, thank God, she is living. I hope when the time comes and she needs that knowledge, she’ll be forgiving of my deceit. If I tell her too soon, I know she’ll be so afraid. It would be a waste of precious time... It may be selfish, but I can’t do that to her.
Pray some more, friends.
Kim
Saturday, June 26, 2004 7:19 PM CDT Hi everyone! I have to thank everyone again for the love and support that you’ve showered us with! I am so proud of my daughter and the way she has touched so many people!
Hospice has been a true blessing to us all! Michaela was hooked up to her pump on Thursday evening and it has been titrated twice since. She is walking better and not sleeping all the time. She has met 3 different nurses so far and talked to them all. Now, don’t get me wrong, she didn’t jibber-jabber, but at least she answered questions appropriatly and didn’t ignore them. She is still eating fairly well. Her favorite thing to eat right now is frosted flakes and homemade peanutbutter crackers. I’m satisfied with that.
Aunt Sandy, Christine, Aunt Judy, and I went shopping for a swingset today. We met at ToysRUs and I was about 15 minutes early. Well, it seems like that is all the excuse I needed to be blue. I just can’t believe that we are traveling this road. I’ve watched so many, too many, other children on this path and my heart broke for everyone of them. Cierra, Austin, Princess Amy, Jared, Jordon, Christopher, Theresa, Christian, Michelle, Jordan Luke, Lance, Luke, Madison, Syndney, Cryton, Hunter, Becca, and Jake. I know there are many, many more that can’t come to mind. Maybe I just can’t handle the thought of any more. Now, here we are. My angel will join many others. She will be in good company and I know she will finally be cancer free, but I feel like I am going to fall apart soon. When I am smiling or laughing, it seems obscene to me. How can I feel anything but dread? Do people see me carrying on and wonder what kind of Mother am I? There is no right way to do this. I have to believe that people will be forgiving of me. I am not supposed to do this. No parent should. It’s quite simply not fair. I wouldn’t wish this on anyone. Yet, I am fortunate to have people that bring out the sun in my life. If just for a bit, I can forget that I am losing the best thing that has ever happened to me.
For example today, Tammy dropped off some goodies that she picked up at the Dollar Tree. The boys got plastic fish and seashells to play with in the tub, Michaela got a septer because she’s a princess, and I got a pen.
I love pens!! This pen is a real hoot. It says “ Yo Momma’s so......” and then as you click it the phrase changes.
Yo’ Momma’s so old I told her to act her age and she fell over dead.
Yo’ Momma’s so hairy Big Foot took a picture of her.
Yo’ Momma’s so short she has to cuff her underwear.
Yo’ Momma’s so ugly that she went into a hauntedhouse and came out with an application.... That might be my favorite.
Then on the way from ToysRUs to Walmart, I discovered that that a local radio station was playing all music from the 70’s ~ lots of Disco! I LOVE DISCO!!! So for our trip we played karaoke with the radio. Donna Sommer, Rick James, Lou Rawles....Christine got a big kick out of it and frankly so did I.
Tracy, my lawnmower fundraiser friend, gave me a present today! It is a beautiful bracelet that has each of the kids names on it. It’s beautiful and I am very touched!
A gentleman dropped a card off today that had an adorable kitten on the front of it. It said that the “friend” realizes through their children that cash is always a good gift, so they sent Michaela $50....Just to cheer her up.....I am amazed.
Tomorrow we will finally have the swingset that I’ve promised the kids for years now. I was not allowed to pay for it either. While the men are assembling the swingset, the ladies and I will be tackling the house. I am still way behind on everything and although it’s embarrassing, I am accepting the help happily. I hope that after tomorrow Sandy and Judy still respect me and don’t refer to me as “the messy one”...
For now we will all just do the best we can to stay positive and thankful for the blessings and the time that we have.
Michaela’s pain is under control. The boys are full of fire. And Dave and I are being surrounded by a very caring support system. Things are as good as they are going to get.
Unless, of course, that miracle happens~
Blessings!
Kim
Thursday, June 24, 2004 8:11 PM CDT Hi everyone! I am so blown away by the wonderful, loving and supportive notes being sent to Michaela by email and this webpage! I am so proud of her for touching so many!
I bet you are all surprised to see me update so soon. I have been a bit lazy and I will be trying to keep a journal everyday for Michaela’s supporters. I also fear that things will get so crazy and I will forget something special that happens. I have to remember everything.........I just have to.
I have to warn our friends that because Michaela’s care is taking so much emotion and time that we probably won’t answer the phone all the time, we often won’t return calls, and unannounced visitors will be shot. No they won’t, but you get the drift. Just had to add a bit of humor. If you were to come unannounced, I don’t think you would like what you see. I’m not always the most “put together” person. The moms reading can probably relate. Remember when your baby first came home from the hospital? You had a tough time getting dressed; much less showering first...wearing a bra was considered dressing up? That’s me now. Hopefully, Michaela’s pain will be under control quickly and we can pretend to be a normal family again for a while. That’s my hope, but meanwhile, please understands that we are doing all that we can and might not be up for even quick visits or phone calls. Email is always a good choice for me. I almost always can respond, but if I don’t please understand.
Today we were at clinic and got a transfusion of platelets for Michaela. She didn’t need red blood cells, but her white count had already dropped without receiving chemo yet. That means that they neuroblastoma has now taken up residence in her bone marrow. Not good news, but there you have it. (Another bit of news is that the x-ray taken on Monday did show deteriorating bones in her arms, thighs, and calves. That explains the pain when we pick Michaela up at least. I think they thought I was told, but I wasn’t.)
The next thing we did was radiation to Michaela’s calf. The one with the most obvious tumor. It was a one shot and done deal and I have great faith that it will help her with the pain in that leg at least. Our wonderful friends at radiation worked very hard to keep Michaela comfortable and moved things at a rapid pace! Not a normal happening at the hospital! Thank you Maria, Linda and Dr. Thomas. Once Michaela’s pain is under better control, if we can pinpoint another area that is giving her trouble, we can return for more radiation.
The next thing that we did to get us one step closer to pain control is meeting with our new hospice nurse, Jesse. Michaela is all hooked up with her PCA pump and I sure hope it does the trick!
Last, but not least. We began the VP16 tonight. It’s a pill that Kay will take it every other day for the next 21 days. I hope it helps with the pain, but I don’t hold much stock in it. It will be worth a shot and I don’t want any regrets, so we’ll do it. It is said to be an easily tolerated chemo, but Michaela will probably lose her hair~again. Luckily, that never seems to bother her anymore.
Well, that’s all I got tonight. Thanks for the prayers and keep em coming!
Kim
Wednesday, June 23, 2004 7:21 PM CDT I am going to try something different tonight. I am going to write a fantasy.
Ready?
Here we go....
I got this idea from my friend, Deb. She just lost her beautiful daughter, Amy, and has been updating her webpage like a fairy tale.
We are going to pretend that this is the update on Michaela and the news that I had hoped to share with you all, had she not relapsed in December.
Hi everyone! Sorry that I haven’t’ updated in so long! It’s been crazy here. Michaela just graduated from the 2nd grade and I must brag. She made all A’s and B’s! This would be impressive enough, but keep in mind; she had started school late waiting for those pesky stem cells to engraft. Her classmates were all very supportive all year and they made her feel very welcome and loved. She caught up with the smartest of her friends in no time flat!
Now that school is over and we don’t make trips to Hershey except every three months, we will spend our days at the swimming pool. Nicholas, Daniel and Michaela are all taking swimming lessons that they really enjoy! Nicholas and Daniel are also learning to do some gymnastics and Michaela is taking dancing lessons. She can’t decide if she likes tap or ballet better, so we do both! It gets expensive, but after all she’s been through, it’s worth it to see her happy and healthy.
The July 4th celebration is going to be wonderful! We have so many picnics and barbeques to attend! I bet we won’t be home at all!!! Michaela loves the fireworks!!!
Hopefully, the boys will too this year~last year, not so much!
We will make a family trip to Ocean City, Maryland in a few weeks too! This is something we are really looking forward to! We all love to go over to Asateque Island to see the ponies on the beach! The only down side is the 4 hour drive in bumper-to-bumper traffic! Oh well, with the joy we have at having our family all together and happy, I think we’ll do fine. Gotta keep it in perspective, right?
Life is sweet.......................................................
Now for the real deal. With tears in my eyes I have to type the hardest news yet. Michaela never got to school this year and it looks like she won’t. She hasn’t had any desire to dance and the boys don’t have many fun activities to look forward to this summer. Without friends taking them, they probably won’t make it to the pool. It is still a goal to go to O.C., but I fear it won’t happen. Michaela is in a terrific amount of pain. She can’t bear weight on her legs and it hurts her body to be lifted and carried as well. She has complained of headaches, backaches and pain that is so intense that she can’t pin point it’s location. Can you imagine anything worse than that? Her body is changing daily as neuroblastoma takes control.
Michaela’s cancer is growing so fast, that her bonemarrow can’t keep up. Her body hasn’t had enough time to recover from receiving her stem cells and there is nothing that Dr. Maris can offer at this time. The only resort we have is an oral chemo called VP16. Kay will receive this chemo, at a decreases dose and we have hope that it will help with pain control. She will also receive spot radiation to the tumor on her leg that appears to be causing a large portion of her pain. Dr. Neely, Amy~his wonderful nurse, Dave and I had a meeting today while Michaela finished up her 2nd day MIBG scan. Tammy stayed with Michaela and scratched her itches, read Ramona and chatted about her new favorite movie~The Three Musketeers. We will not be doing a 3rd scan. It isn’t necessary. We won’t do an MRI or a bone marrow biopsy. We are at a place where any un-necessary tests and hospital visits would be a waste of precious time. Time is probably short for Michaela.
Our beautiful daughter will die from neuroblastoma unless God answers my prayers for a miracle. Dr. Neely and all the loving care from everyone else will not save her life. It’s a matter of time until the neuroblastoma takes her from us.
I have no true idea of how long we have to love and cherish her, but it could be as little as a few weeks.
It could be more. We will not specifically tell Michaela her prognosis. There is no sense in her wasting her time worrying about death. She needs to concentrate as much as possible on living. Hospice, as I've said will be described as the people that help her pain. Unless Michaela specifically asks, I don't intend to burden her with scary predictions. I might not even if she does ask. We've always been honest, so this is a very difficult decision for us. My hope is that she'll never have to be afraid to ask what she truly wants to know. I believe in heaven she will forgive us any mistakes that we make.
Many people have commented that they appreciate the updates to her journal because they can target their prayers. With that in mind, I will ask you to remember to believe and ask for a Miracle for Michaela. I don’t think God minds multi-part prayers, so if he chooses not to offer up a miracle, please, please pray for her comfort as she gains her angel wings....
Blessings,
Kim
PS:
Did you see the article in the paper? Wasn’t she beautiful and vibrant? I wish she still looked that good........
I hope Health Guard is as embarrassed as I am sad. I really do.
Sorry for being bitter....
Monday, June 21, 2004 9:34 PM CDT Hi all! I am sorry it’s been so long without an update. I think I was waiting and hoping I could have another good day to tell you all about. Unfortunately, that isn’t the case tonight.
We have begun what I like to call “Hell Week”. I refer to it that way for many reasons. The first is that we must be in Hershey by 8:45am everyday. That, frankly, stinks. I am not a morning person and Kayla isn’t either. Her mornings lately have begun somewhere around noon. The second reason is that I don’t think I want to know what the tests show. Ignorance is bliss right? Well, I’d have to be blind to not see what is happening to Michaela. NEUROBLASTOMA IS BACK......
After the wonderful day Monday, I thought that I must have worn poor Michaela out. After all, it had been a long time since we had been out socializing and it seemed possible that she just needed a little extra sleep on Tuesday. Okay, Maybe Wednesday too. Well, when she hobbled into the bathroom Thursday and I looked at her leg, I knew I was very wrong in the assumption I had made about her just being worn out.
You know what they old saying is? Assume = assoutofyouandme.....
The tumor on her calf is back. It’s quite large too. She was having a terrible time walking and her pain medicine has been increased accordingly. By the time we arrived for our appointment she was crying in pain and said that her elbow was hurting too. That day we saw Dr. Neely in clinic and we went and did an x-ray on her leg and elbow area, just to be sure there were no fractures. There weren’t. There was actually nothing visibly wrong with the elbow, but the tumor on the shin was quite visible. Dr. Neely wants us to complete “Hell Week” and then talk to Dr. Maris about possible treatment options.
The weekend was not too bad, but it had a sad start. A dear boy passed away and Tucker’s mom, Lisa and I went to the funeral on Friday. Not a nice experience, but it was such a beautiful ceremony and it was hard to be too sad. The funeral home was full of friends and family. Everyone doing his or her best to be brave and celebrate his short, three-year life. There must have been close to 300 people in attendance and I was proud to witness such a moving service. His parent’s are wonderful, dear people and I know their son is in heaven blowing movie star kisses. That’s what he did to say hello or good-bye. Lovely, sweet, heart felt, movie star kisses. I will miss him, but I have been blessed to know him and his family.
Friday evening was spent with Roberta, Sara, and Danielle. We had a nice visit and had supper together. Michaela was somewhat subdued and complaining of pain a lot. Then Tracy stopped by for a visit. She was on the way home from a get together and wanted to meet Roberta and the girls~and of course~see Michaela. Then Chad, Lisa, Tucker and Taylor came by. We had a little party going on for a while. Michaela had a slow start, but eventually rose to the occasion when she saw little Taylor. I don’t know about my girlie. She has no time for anyone, but put that little Taylor in the room and she’s swept away....
It was nice to see Michaela happy for a while and honestly, we all were quite taken with Taylor. There’s just something about a little girl that age, I think. Lisa said that she would bring Taylor over anytime Michaela needs a pick-me-up.
Tucker is doing great too! He has a check up every month and scans every other month. So far so good. I am sure he’s going to be fine because he is destined to do great things. He really is!
Saturday was pretty quiet and we had a tougher time getting Michaela’s pain under control, but by Sunday Michaela felt pretty good again. She is/was clearly not herself. She is uncomfortable and definitely affected by the pain medicines. She hung out in the house with me most of the day while Dave and the boys planted some flowers.
Yup....that’s how Dave wanted to spend his Father’s Day. He planted flowers, pulled weeds and grilled supper. What a guy!!!
Today at clinic Michaela was feeling yucky again. Dr. Comito is considering putting Kay on a PCA pump. (PCA= patient controlled analgesic) The pump would be worn in a fanny-pack around Michaela’s waist and it would deliver a steady stream of pain medicine. She would also have a button to push for her break-through pain. The control would be hers and theoretically it would be much more effective than asking for, then taking a pill. It would go right into her bloodstream and straight to work. Sounds good.
Dr. Comito wants us to call hospice. She feels that they would be very helpful in getting Michaela’s pain under control because they would come out to the house and make any adjustments needed immediately.
I will be making that call as soon as I can, but we need to be in clinic for the rest of the week until Friday. I hope to speak to Hospice without Michaela present. I want her to believe that they aren’t to help her die. Really, they aren’t yet, I guess. Unfortunately, that time is probably coming. When she meets them I want her to see them as a positive in her life. Someone that never hurts her, only helps her and wants nothing more than to make her comfortable.
Did I really just type all that with no tears? As my lovely friend Tammy says “oh my”
Now, on to my friend Deb and her princess Amy. Amy made it home without incident. I haven’t spoke to Deb since Saturday, but Amy was then quite comfortable. On Sunday, Deb and Rob got married and Amy watched and smiled. I know her Father was coming to see her, but I haven’t heard how that went. I try not to call, because I think this is time when a family circle must and should tighten around the loved one while they gain their angel wings. Please keep praying for their strength. They are holding up bravely and I am in awe of their strength and composure.....it’s incredible.
Blessings!
Kim
Michaela’s very sad and scared mom.
Saturday, June 12, 2004 7:54 PM CDT Well hello! I guess you are all a bit surprised that I am updating already, huh? Well, here it is!
Michaela came home from Hershey Medical Center yesterday, Friday, at about 7pm. She was exhausted and I was disappointed. When I spoke to Kay on the phone Friday morning she was wonderfully chatty and cheerful! It was glorious!!! Her good mood passed as the hours did and by the time she came home all she was interested in was her bed. Actually, she wanted a cup of soup then she wanted bed. Her and Dave retired to my bed and watched Jaws until they fell asleep.
Today was a pretty good day for everyone except Dave. He now has what began 2 weeks ago when Nicholas was sent home from school. He is so sick. As sick as he is he’s still sitting around the house fully dressed down to his boots. Go figure. I hung my bra up on Wednesday last week and didn’t bother with it again until today. Such opposites we are! It works though; I am one lucky woman...
Now I have to tell you an adventure that I had today. I went shopping. Now, I know you all are thinking, “So what else is new?” Well, I was really only intending to grocery shop, but when I got on the road, I decided to try and find a new (to me) coffee table. Ours is broke and just waiting to fall apart. I don’t want to spend a lot of money, of course, so I decided to check out the Goodwill in the area. No luck. I was bummed, but went on about my business and grocery shopped. I was in my van, on my way home, minding my own business, and guess what I found.
Give up?
I found a sofa.
Now, you might wonder why I am happy about finding a new sofa and I’ll tell ya. We need a new sofa, but that would definitely cost more money than I want to spend, so I put it on the back burner until I am able to go back to work.
So here I am driving along....I turn on to the road that leads to my street.....and there it is. My “new to me” sofa. It is perfect! It was cheap!!! It’s a green sectional sofa with 2, not 1, but 2 recliners!!!! With this sofa Michaela can cuddle up and the rest of the family will still have a place to sit! I am so excited!!!
I had to have it.
It only costs $40.00
It matches the furniture that I intend to keep.
But~
Dave is sick.
We don’t own a truck.
I had a car full of groceries.
I rallied the troops! I came home, woke Dave, called my Dad. While they went to get the furniture, I put groceries away and got the livingroom ready. In a half an hour I had a new livingroom! VOILA!
What’s that saying? One person’s garbage is another husband’s back ach???
That’s all for now!
Blessings!
Kim
PS~
I still need a coffeetable!
Wednesday, June 9, 2004 12:59 AM CDT UPDATE June 10, 2004 8:05pm
Michaela was admitted today from clinic. Dave had taken her in for blood counts and a check up because I am still sick.
Last this morning Michaela began to complain about an earache, but fell back to sleep easily and didn’t complain again. When they got to the clinic she was running a fever and her blood pressure was lower than they liked. Her oxygen sats were low as well and she was receiving blow-by oxigen. Dr. Neely felt it was best to admit her.
Hopefully, this will be a quick visit and arrangements can be mad to administer her antibiotics at home!
When I last talked to Kay she was feeling okay and sending Dave to get her a video to watch. She is very tired and I hope both her and Daddy get a very good nites sleep! They both need it!
Blessings!
Kim
Here’s the long awaited update! It is said that no news is good news, but I won’t try that one on you all. It never works for me either, really. I want news! Sometimes I just get too lazy to give it. Well, Lazy might be a strong word since the boys and I have been sick for over a week. That leaves Dave to do everything. I had asked him to update, but he won’t. I think I’ve taken over the role of keeping everyone informed. As my father tells me, I’ve got a big mouth. For this purpose it serves me well.
Michaela has shown improvement in many ways. I am thrilled to tell you all that on Monday, Michaela had her first clinic appointment since December that didn’t require a transfusion of platelets or blood. The fact is that she could have stood to get some platelets, but I think the docs want to give her body a fair chance to make it’s own. We’ll see tomorrow when we get counts again if it worked or not. In the mean time, she isn’t showing us any of the normal signs that she is suffering any ill effects from the low platelet count. You remember those topics....bloody noses, bleeding gums, huge bruises. Thankfully, she has had none of that.
Michaela’s appetite is coming back slowly. She was started on an appetite stimulant and I am sure it’s not working to the fullest effect, yet we can see an improvement already. She was down to 48lbs on Thursday last week and by Monday she was still 48lbs,but on the high side. I hope that by tomorrow she will be up to 50lbs again.....
As a woman that always reads labels looking for low calories and fat grams, I never realized how difficult it would be to gain weight. It’s truly a struggle for someone like Michaela that prefers broccoli to potato chips, diet to regular soda, doesn’t add sugar to cereal, hates gravy, and doesn’t much care for cake and icecream. Whose kid is this????
Thank God maternity can’t be questioned or Dave would be looking for a blood test on Jerry Springer! Anyway, I am trying to find ways to fatten up her favorites and it’s not as easy as it should be. I do feel like I am getting a bit of headway with her favorite drink~chocolate milk. Did you all know that all chocolate milk in the free world is low, or worse yet, fat free? How crazy is that!!! Well, I’ve found a way around it. I buy whole milk at the dairy and mix it with Ovaltine. Not only do I save about $1.30 per gallon, the kids get all those yummy vitamins and minerals from the Ovaltine!!! Go MOMMY!!! Now, how can I get gravy into those icky broccoli spears???
It would appear that Michaela has her days and nights mixed up. Now I know that it’s not good for an 8 year old to sleep during the day only to wake for primetime television and Nick at Nite, but I gotta admit I haven’t tackled this yet. At least is happy when she is awake. She doesn’t look like she hates us all, she doesn’t pull away from hugs and God love her, she even smiles and giggles from time to time! I know that we’ll need to bite the bullet and get her back on a normal sleep cycle, but I just don’t have the will to do it yet. Dave is enjoying her company when she allows him to watch John Wayne movies and American Chopper and I can’t say that I blame him....
As I tell you all these wonderful things, it’s hard for me to realize just how far from the old Michaela we are. She still spends most of her awake time wrapped in a blanket on the sofa. She doesn’t care to get dressed or go anywhere. We are satisfied for now that she doesn’t mind company anymore. She will talk and smile and be social. It’s a good thing. We’re getting there, but we can’t get there soon enough. She doesn’t ask to go shopping. She doesn’t care to stay overnight anywhere yet. She even turned down a chance to go swimming...
But there is a light behind her eyes again. Her spirit shines through every now and then with a giggle or a twinkle in her eye. She wants to live again, but clearly is unsure about how to get there again.....
She has a goal. She wants to go to THE BEACH COMBER in OC Maryland. She knows that we will only go on this vacation if she is up to enjoying it to the fullest. We have 45 days to build her up while keeping neuroblastoma at bay. You see, we can’t go sooner. We can’t go to just any ol’ beach motel. It must be that week, that place, with those friends. It’s the whole ball of wax that makes this a vacation of a lifetime.
45 days is probably long enough for her to recover fully from her treatments, but sadly with neuroblastoma it’s also long enough for the disease to regroup and attack again.
We need all the prayers that we can get.
We need Michaela to build up her body and spirit so she can fully enjoy this vacation.
We need to pray for the doc’s wisdom in maintaining her good health.
We need the Lord’s intervention if this evil disease begins to attack her body again.
Now, as much as I need all our praying friends to ask for these things for my girl, I have to ask you to keep another special girl in your prayers as well. Her name is Amy. She is fighting for her life right now. She is in grave danger of losing this battle. She has fought bravely, and sometimes loudly, for far too long! She suffers from AML and had a stem cell transplant that appears to have been successful. Sadly, she has a disease called Graft vs. Host disease. When you receive cells from a donor, as Amy did, those cells sometimes attach the host~that’s Amy. She is literally bleeding out daily! She is losing the will to live and she is too exhausted to fight. Her family is heartbroken and scared to think about where this path might be leading. Her Mom is a good friend of mine and always looks out for Michaela and I when we are in the hospital. She is questioning herself in everything and needs strength. Please pray for the entire family, but especially Amy and her mom Deb. Pray for their comfort, peace and strength to get them through this terrible time. Honestly folks, we’ve been through many scary things with Michaela, but nothing like this. I don’t know how to explain their desperation....
She has a webpage and Deb updates it in “Cinderella style”. Amy is her princess; the dwarfs are the docs and nurses. Michaela is the princess in training, and I am the P.I.T. Mom. Deb is the Queen and her hubby is the King.....
Please visit their site and encourage them if you can...
http://www.caringbridge.org/pa/ourprincess
Blessings!
Kim
PS
Keep an eye on the Intelligencer Journal for Michaela’s MIBG story and the insurance company’s refusal to pay for it....
Thursday, May 27, 2004 7:47 PM CDT Wow! I’d say it’s time for an update! Let’s begin with the real reason that you all stop by, shall we? Michaela, Kay, or Kayla. My first born, my dream come true, the most beautiful daughter, best blessing and shopping partner. Well,,,,,I wish I could say that she was doing better with her depression, but I can’t. Sadly, there has been no improvement on that front, but I will say that we will be making changes ~ again ~ that I hope will assist her in the journey back to her bubbly, vivacious self. Yesterday I decided that I needed to “do something” to help Michaela. So, unbeknownst (is that a word?) to her, I put a call in to Hershey Medical center. I had hoped to speak to Amy or Dr. Neely, but neither of them was available. Luckily, another nurse named Denise called me back. She tries to cover for Amy so that when she is unable to be at work, she isn’t overwhelmed as soon as she reaches the clinic. I was fine with talking to her because, although I haven’t dealt with her much, I find her to be very caring and friendly. Just what I needed. I explained Michaela’s depression. The fact that she had to stop taking Zoloft just as it was beginning to work. I told her that today was the last dose of the antibiotic that made us stop the Zoloft and asked her to put a bug in his ear about getting Kay back on Zoloft or anything else he deemed appropriate ASAP! She listened to my description of Michaela’s behavior, her being tired all the time, not wanting to eat, visit, bath, shop.....basically, the only thing Michaela wants to do is sleep. She was very sympathetic and let me ramble on, in tears, until I was verbally spent. I suggested that perhaps Michaela needed to hear from someone, other than Mom and Dad, that she really IS DOING WELL. That she ISN’T DYING. And that she MUST BEGIN TO LIVE AGAIN. The sooner the better.
By the way, it’s a good time in this journal entry to tell you all that we have had good news on a test that was ran on Michaela’s urine when we were in the hospital for pneumonia. The VMA and HMA levels in her urine are now in the normal range. This indicates to us that the neuroblastoma is not active right now. Before MIBG treatment her levels were around 100 for both of these tests (that’s very, very high). Now they are both below 10!!! So!!!! Not only do we see the tumors are gone, but these tests confirm what we believe to be true.
Okay, now let’s talk about the clinic visit with Dr. Neely.
I won’t waste your time telling you about the incident before we left for the clinic when I tried to get a hug from Michaela; she pulled away, far away, and made me cry. You know without my typing it out that I lost a piece of my heart this morning. Of course Michaela apologized, but of course it is something I will never forget. I got a very sorry glimpse of someone that doesn’t like me very much sometimes. I never saw that before.
Back to the clinic. Dr. Neely examined Michaela thoroughly and told her that she was doing wonderfully, but that he was worried about her. He knows that she isn’t feeling very well, but basically he told her that she didn’t need to be afraid of the cancer right now. He told her that we needed to work on getting her back to her old self. She was rude and rolled her eyes once or twice and told him “I know, Mom told me.” After Dr. Neely explained that she might have heard it from me, but he was the doctor and she had to listen to him, she was allowed to leave and go to the “quiet room” to begin her video
Dr. Neely and I got down to business then. I have no problem with what the child psychologist suggested. It was difficult for me to parent the way he suggested, but I did try. Really, I did. It just didn’t help her and it basically drove me %$@^%$#! I found myself getting more and more sad and dare I say pissed? Dr. Neely and I both feel that he was making his suggestions based on a terminally ill kid. Kayla doesn’t fit that criteria....yet. He reiterated (how’s that for a big word?) that although Michaela probably won’t beat this cancer, he feels that she will be living for quite some time and we needed to get our Michaela back.
He suggests that Dave and I set some ground rules and expectations. Reasonable things like eating dinner with the family, not by herself in her room. Not sitting in front of the television for hours at a time. We need to form a united front and, even if she kicks the whole way, follow through.
He also feels that her self-image has taken a hit. He thinks it would be good for her to get pampered a bit with some sort of makeover. It seems to me that this might be something that they often help cancer kids through. Especially, kids in Michaela’s age bracket. Child life will be looking into that for us and I hope that it will help Michaela see someone in the mirror that looks good to her. To us, she’s beautiful. To her....I am afraid that I don’t even want to guess.
We also need to do something about the weight loss.
~ Unfortunately not mine, Michaela’s. I was going to go to Weight Watchers tonight, but I couldn’t. Really, I couldn’t. Dave making chocolate chip oatmeal cookies has nothing to do with it! What!!!!~
She is down to 51pounds. At diagnosis, she was 60+ pounds. She should have been gaining weight all this time. Lately, she has no appetite for anything. Nothing sounds good and all she wants to do is sleep! I met with the nutritionist and got some ideas on how to get some extra calories in her. I have set a goal of seeing Michaela gain at least 1 pound by our next clinic appointment on Tuesday.
Here’s what’s up with the boys! Actually, most of the news is about Nicholas. Daniel is doing pretty darn good for now. Yesterday, I got a call from the person that does vision screening for the Lancaster Day Care Center. Apparently, Nicholas is going to need to visit the eye doctor in the near future. The screening tests indicated that Nicholas’ left eye has significantly poorer vision than his right. His right eye is 20/25, but his left eye wasn’t even able to read the 20/80 line. Hopefully, he will be accepting of his glasses, if he needs them, and we can get his squared away.
Today the teacher called and said that Nicholas couldn’t stop coughing and she asked that he be picked up. We knew he had a bit of a cough, and we gave him some medicine before school, but by the time we got him home, he was really coughing! I was at the clinic with Kay, so Dave took him to the pediatricians. He is now getting breathing treatments every 4 hours and doesn’t seem better yet.
~by the way, that’s why I couldn’t go to Weight Watchers. Nicky needed me. Really! WHAT?????~
Looks like the boys will be home with Kay and I tomorrow.....
Yippee skippee!!!
1 depressed
1 asthmatic
1 bored.
Whoops, make that 2 depressed.
Pray for us, seriously, really.
What????
Blessings!
Kim
Sunday, May 23, 2004 11:40 AM CDT We are having a wonderful weekend and I hope you all are too! Friday was a quiet and Michaela spent most of her day sleeping. The antibiotic and anti- fungal that run at 10:00pm don’t finish until after 1:00am. I think that leaves her a bit worn out because she does get disturbed by us while we hook and un-hook her. Even though she is exhausted, she hasn’t needed any extra pain medicine and I feel that that’s a good sign that she is well on her way to recovery.
Saturday was an exciting and emotional day for us. Our friend Tracy did a fundraiser for us. She raffled off tickets and Daniel pulled the winning name. Michaela was awake and visiting with Tracy and Nannette (that’s Tracy’s sister-in-law), but she didn’t want to pull the winning ticket. Don’t know why, but we didn’t make too much of a deal out of it and Daniel was thrilled to do it.
AND THE WINNER IS.................DRUMROLL PLEASE........................
Jackie Fisher! Congratulations Jackie!
Thank you all so very, very much for continuing to support us! We can’t being to describe the gratitude we feel! Tracy explained to us, that many people didn’t even want a chance at the lawnmower, they just wanted to help us. And help us you did! Again! Because of Tracy’s efforts and the generous nature of our family, friends and community, we will be making a deposit of $4079.00! This will go a long, long way in keeping up with our bills. If needed, it will also be a gigantic help in paying back CHOP for the MIBG treatment that has afforded us with the last 5 weeks of life with Michaela.
Uncle Bob’s lady, Aunt Judy invited me out to lunch on Saturday. Of course I never turn down lunch right? Anyway, I never expected Michaela to want to go with us, but I invited her and guess what? She wanted to go!!!!!!!! Can you believe it?? I can’t tell you the last time that Michaela left this house with me to go anywhere other than the clinic! I was thrilled and Aunt Judy was too! We girls decided to enjoy lunch at Friendly’s and then to head over the river to do some shopping in York. While we munched lunch, Michaela admitted that she wanted to stay closer to home, so we ended up at the Burlington Coat Factory. We had alot of fun and I am slowly teaching Aunt Judy the joys of bargain hunting. She made out quite well and will look wonderful at her new job. Michaela did well too and got a new dress for clinic on Monday. At the end of the trip, it was clear that Michaela was exhausted and she fell asleep on the way home. She never did wake up and went straight to bed when we got home at 5:30. Thanks to MIBG, I look forward to many more shopping trips with Michaela!!!
I must go now and get some laundry done! Aunt Kath, Aunt Lori, and MumMum will be joining us for supper tonite and I hope that since Michaela is still sleeping, that she will be able to enjoy the company!
With Gratitude!
Kim
Thursday, May 20, 2004 11:01 AM CDT Much has happened since I last posted. Luckily, Michaela will be coming home today. The unusual part is that she will be coming back home with a fever and no white blood cell count. Who knows how long we would need to be in the hospital waiting for those issues to resolve. Dr. Neely, in his wisdom, is allowing these exception to be made for Michaela this time. He feels that we can accomplish the same things at home for Kay that are being done at the hospital.
Here’s her medical situation~ right now.
Michaela does have pneumonia. It hasn’t been determined if it’s viral, bacterial or fungal. The medicines that she is on covers all these possible causes though.
She also has a condition called VRE. It is basically a “bug” that is resistant to vancomiacin. She had to change her antibiotics and go off her anti-depressant, Zoloft. Zoloft and the new antibiotic don’t get along and can cause a very serious side effect that I was told can be pretty darn bad. Unfortunately, it reacts with all anti-depressant drugs in the Zoloft family.
Before being discharged, she will get 2 units of blood and 1 unit of platelets. This way she’ll be “tanked up” we can stay home~ hopefully, until Monday.
Her twitching has stopped for now and when it was causing her problems it was controlled very well by Ativan. We will have a prescription for that at home.
She is eating and drinking enough that I don’t expect her to need fluids at home, but we will have an IV set up for the anti-biotics and a nurse will visit and teach us how to use it.
Oxicodone and IV morphine are controlling her pain, when she has it. We will have the same at home, except the morphine will now be IV. Yesterday she only had 2 doses of morphine in the morning, so possibly she won’t need it at all when she’s home.
Now let’s talk about her emotional health.
Michaela is still very down in the dumps. This makes me very down in the dumps. Probably even more so that her physical health. Remember that we had to stop the Zoloft? I am sure that doesn’t help her mood. Thank God I am still on my medicine! As Mom Mease says, “take another pill, Kim”. Maybe I’ll need to do that.....
I have spoken with the child psychologist on staff at Hershey and tried to sort out my feelings about the new Michaela. He has been somewhat helpful, but it is going to be very challenging for me to parent Kay, the way he feels she needs to be parented. Her behavior, for months now, has been a sticking point between her and I. I keep telling her that she is wasting time being angry and missing out on many things that could be bringing her joy. Guess what????? SO AM I!!! Every minute that I spend telling her that she’s rude, reminding her to be polite, attempting to get her to talk to me, is time that I could ~ and should be spending listening to her and validating her. More than advocating for her medically, I need to be her advocate in all things. Just because I think she should want to talk to her friends, doesn’t mean she will. When I feel she is up to company that doesn’t mean that she is. If she doesn’t want to hold a conversation with a nurse, doctor, or anyone really, she should not have to.
I wish she would giggle, talk and play, but would I want to if I were in her shoes? Probably not. Heck, I don’t now a majority of the time.
Here’s my plan. I will now apologize to everyone that Michaela might be rude to. I will explain to you here, that I now understand that she is doing that best she can to live her life. Her energy is being spent fighting a devilish infection and keeping neuroblastoma at bay. She loves everyone now, just as much as she did when she was talking and playing with you. Maybe even more. The fact that she has gone inward with her thoughts doesn’t necessarily mean that she is depressed. She might be, but quite possibly she may just need to be quiet now. I have to believe that when she can have fun, she will. I have to stop fighting her. I have to let her be how she needs to be and love her while she does that. I have to give her room to be healing in her own way and hold her close while she does that. Basically, I need to be Dave. Who knew he was doing it right all along!! God I love him!
Now, for my sanity, I have to ask your patience while I adapt myself to my new style of parenting my beautiful daughter. I will ask that if you come to see her, you understand and remember that she does love you. She won’t tell you, you just have to know it. She might not want to talk, but you can try~once. Please don’t bring her gifts. She has told me that she’s overwhelmed and doesn’t know what to say any more when she is on the receiving end of presents. It’s become a stressor to her. Strange, but true. The best gift you can give her is love. It may need to come from a distance, but she knows she is loved. Prayers are still needed. After this entry you have a lot to ask for on our behalf.
My hope is that if she is given space and acceptance from me, she’ll open up and talk about things that may be scaring her or making her angry. Instead of defending herself, perhaps she will find me to be a source of encouragement and strength.
I have a new purpose.
Blessings!
Kim
Sunday, May 16, 2004 8:11 AM CDT Let’s start on Friday’s activities. Michaela had a positive result for gram-positive cocci from blood taken from her port. She is on 3 different antibiotics, can't spell them, anyhoo, she has been spiking a fever and the doctor ordered a chest x-ray. After her sats dropped to 90%, I agreed. It showed a probable small pneumonia in one lung. Nothing changed in her treatment, but now we know it's probably not fungal. Didn't look like it anyway. That’s a good thing! Her fevers aren’t going as high and Dr. Unger feels that Michaela is responding to treatment. Hopefully, her blood samples will soon be negative for the bacteria soon!
Now, on to Saturday....Michaela had a period of "twitching" when she was trying to dose off for a nap. It only irritated her at first, so I crawled into bed to comfort her and realized that it was getting worse. As the intensity increased, she became more and more upset. The resident actually listened to me and, after examining her, ordered some ativan. By the time the ativan was running in, Michaela seemed to have improved on her own. These "twitches" are difficult to explain because they vary in intensity and locations. It's not just her arm or her leg. It's not just one side or the other. The description that works best for all of them is that it looks like she is being startled from a fevered sleep. She's terribly jumpy and yet I know that that isn't what it is. These periods happened at diagnosis, and then went away with her first chemo. She had plenty of inconclusive tests and it was passed off as the phenomenon of "dancing feet/dancing eyes syndrome". A short while after relapse it happened once again. It lasted for a short while and, once again, passed before the ativan could have affected it. I have to say that I hate these "spells". They are terribly upsetting for her and, although I really don't care why they happen at this point, I just want them to stop. At this point in Michaela's journey, the last thing she wants is more tests. I would have been very disappointed at this lack of definition a few months ago, but now, I just hope it doesn't happen again.
It was my turn to be with the twins and I looked forward to cuddle time with them last night! Dave was with Michaela and I was hoping for no more drama. I know she's in good hands, especially Dave's, but I am such a control freak, I feel like if anything's going to happen, it should be on MY niter! Anyway, the boys and I went to Aunt Jana and Uncle Bill’s house for a visit. I really didn’t feel like leaving the house, believe it or not I was doing laundry and didn’t want to stop, but Jana knew better and talked me into it. The boys had a great time and Jana and I had a nice time in the smoking lounge in her garage. It’s always a good place to get into special talks and last night was no exception! Sometimes I get to feeling like no good can come from talking about my feelings and our life with cancer. It’s almost a vicious circle. When I talk, I cry. When I cry, so does whoever I am talking to. Then I feel bad not just for Michaela, but for the person that I make cry. That’s my logic, but it is true that I feel better after talking. It’s exhausting, but good to get those fears and sadness out. I just wish I didn’t have those things to get out. I hate cancer. I hate what it does to my beautiful daughter. I hate what it does to everyone it touches. I want our life back. I want a future for Michaela. I want Michaela in my future. I want, I want, damn it, I want!!!
Well it’s Sunday morning and I just talked to Dave. Dr. Unger was already in and confirmed that it is definatly pneumonia and we are continuing with the same course of treatment for that. Michaela has had numerous bouts of twitching after I left and through the night. Fortunately, because the resident wrote a standing order for ativan to be given every six hours, and she was never too traumatized before the ativan took effect. Dave said she didn’t seem as dopey as I witnessed her to be yesterday, so hopefully she will be able to stay on it without being loopy-doopy all the time. How’s that for a descriptive word?
Dave should be, as I type this, chasing down Dr. Unger to answer the question of how long we can expect to be guest at Chez Hershey Med. It’s my feeling that the doctors need to know how we feel about being in-patient at this point. Dr. Unger isn’t one of our usual doctors and he might not be aware of how badly we want Michaela home. I believe if he knows, from what I hear from other parents, he will work towards that goal when ever possible.
Blessings to all,
Kim
Thursday, May 13, 2004 8:00 PM CDT Hello! Tonight’s entry begins with our Tuesday visit to the clinic. We had decided to give Michaela her stem cells back to help her recover her bone marrow. It apparently took quite the hit from the MIBG therapy in CHOP. It turned out to be a very nice day for us because we got to see many faces that we haven’t seen in a very long time. It’s like going home. The kindness and love we felt seeing so many very important friends made our spirits lighter. We knew that this was closing a door behind us that we never wanted to close, but being surrounded all day by our friends from Hershey made it more than bearable. We had a good day. Unfortunately, we forgot the intensity of the side effects that come with receiving stem cells. Michaela had a very upset belly for a while, but she got through it with a little help from her friend Ramona. Michaela’s favorite books are about a second grader named Ramona. She is quite the character and gets her self in some definite predicaments. Michaela loves her! Dave and I took turns reading to her throughout the transfusion and it seemed to help her not to focus on the nausea.
Yesterday was a quiet day and Michaela only woke up around 12:30. She was in a very good mood and just puttered around the house happily while I attempted to attack the mountain of laundry in my laundry room. By 3:30 though she was tired again and went back to bed for a “nap”. She never did get back up again though, and when Dave and I were getting her evening medicines in her, we noticed that she was very warm. She said she felt fine, just tired, but when we took her temperature it was up to 103 degrees. Finally, she admitted that she was a bit achy all over......
While I got ready to take her to the hospital, Dave called and talked to a doctor. I don’t know whom he talked to, but he said that she could stay home until clinic today, as long as she didn’t get any worse. He said that since she is on anti-biotics any way there wasn’t much different that would be done last niter. We gave Michaela Tylenol and microwaved some popcorn and happily, we settled in for the night.
This morning when I woke up I had a splitting headache and had to have Dave come home from work to take Kay to the clinic. Her fever was gone, but Dr. Neely felt it was dangerous for her to be home any longer and admitted her for a broader spectrum anti-biotic. Apparently this can’t be given at home. Michaela was upset for a while and when she started to cry Dr. Neely comforted her and then she was okay again. I wasn’t there, but Dave said that Michaela was wonderful the rest of the day in the clinic. She received platelets and teased the nurses while she watched movies and ate crackers. When it was time to leave for her room, Michaela was tired and cranky again. She apparently had just fallen asleep and wanted to be left alone!
The last time that I spoke to Dave, they were both settled in and resting well. Her blood pressure is still good and she hasn’t gotten another fever. Sometimes when Michaela has an infection she has trouble keeping her blood pressure up. Hopefully, this will be a quick trip, but if not, that’s okay. One of my favorite people heard that Michaela was coming and had my cot all ready for me! See what I mean? Amazing! It’s the little things that make these people special and we are blessed to have them looking out for us. They take care of the whole family! Thanks Tom!
Our wonderful attorneys are busy working on our case to try and get our insurance company to cover the MIBG therapy that Michaela received in April. I am so impressed with the amount of time and hard work being spent on our case. Our blessings just keep growing! Now all we need is a cure........Life would be perfect. As it stands now, it’s still pretty damn good. Thank you all for caring! Please keep praying!
Kim
Monday, May 10, 2004 8:45 PM CDT Hello everyone. I have been avoiding updates lately because we’ve just been chugging along here. No great improvements, but no major setbacks either.
The decision that we made today might be considered a set back though. It is definitely frightening the heck out of me. We have crossed into another phase of our journey through life with Neuroblastoma. I’ll get into that in a bit, but first I should let you all know that there is something that Dave and I are thrilled about. The most positive thing that I can say is the dramatic response that Michaela had from MIBG. The visible tumors on her skull and legs are gone! Completely gone! We have been able to reduce Michaela’s pain medicines once and I expect to taper down even further. She has not needed any break through medicines for pain either, so I am confident that we are on the right track.
She is awake many more hours during the day and isn’t as miserable as she was. There is still room for improvement in that area, but I think that I can see some progress. We have begun an anti-depressant and Michaela hasn’t had any side effects from that. What is perplexing to me is her lack of desire to be around almost any body. She is turning down invitations from her friends. Friends that simply love her and want to visit her when she’s in clinic irritate her. I get eye rolls from her over everything that I say ~ and I mean everything! I have been silenced by a “tell it to the hand” move that she seems to have recently perfected. These are things that I didn’t expect to face until she became a teen-ager. Here we are. I don’t like it. I have to say, and this is hard, I feel that Michaela is trying to separate herself from me. It could be depression too, who knows? I have spoken to the child psychologist at Hershey and he feels that Michaela feels betrayed and down right pissed off. I agree. She believed that if she did everything asked of her, she would live. She still will say things that indicate that she is still holding on to the belief that she will grow up, but her actions don’t match those statements. I don’t blame her for being angry. Not at all, but I feel like all these days spent distancing herself from us is such a waste. Who knows when and if she will physically feel this well again?
Now, on to today’s decision. Michaela has not been able to recover her platelets or her white blood cells. It’s been 3 weeks and she needs platelets twice a week. She has been on GCSF shots to boost her white count and it refuses to climb. We will be giving her stem cells back tomorrow in clinic. Hopefully, in 7 to 10 days her white count will begin to climb and she will have some immunity. She absolutely doesn’t want to be admitted into the hospital again and every day carries that risk until we get that white count to recover. The actual giving of the stem cells is no big deal. It is her own blood product and, unless she has issues with the preservative they were frozen in, she should have no negative side effects.
Here’s the kicker. Once she gets those cells back, she will no longer be eligible for another MIBG treatment. If she could have recovered on her own, we could have done it again when the cancer came back. Now, that door will be closed. Other treatments require stem cells in reserve and we won’t be eligible for those either. You all know how I feel about closing doors behind me. Burning bridges in the fight against neuroblastoma is a scary thing to face. As frightened as we are, Dave and I agree that this is the right thing to do for Michaela right now. Michaela has told us that she doesn’t ever want a catheter again and she doesn’t want to go to the hospital either. She knows her mind and while we must gently make her understand what these decisions mean to her survival, we have to respect her opinions and in many instances read between the lines. Frankly, Michaela is sick of fighting. She needs a break and we just have to keep hoping that her mental health catches up with her physical health before it’s too late.
Please, continue to pray.
Thanks for caring.
Kim
Sunday, May 2, 2004 9:10 PM CDT Well....we’re almost done with the painting! It was worked on diligently all day Saturday and quite a bit today too. My banana cream isn’t exactly what it looked like on the little 1 inch square sample. It never does though, does it? Kinda like life. It’s never the way you thought it would be. It’s sometimes better and sometimes not so good. Either way, you learn to love it because it’s yours. My banana cream is like that. It’s a sunnier shade than I would have asked for, but watching Lori and Dave work so hard on it makes it perfect. It’s not what I ordered, it’s actually better!
We still have to hang the mirror and vanity lights. Dave ran into a snag today when he went to install the light. It seems that everytime he has to replace a light he finds another fire hazard hidden. Today he revisited an old favorite. When he removed the light fixture he found plain wire coming through the wall and into the light. He’s dealt with this before and will fix it properly. Unfortunatly, this leaves us to wonder and worry what other little wiring issues we have and how are we going to discover them?
I have to say that Michaela is coming along slowly, but hopefully, surely. She still isn’t quite herself. She isn’t sleeping as much and she does have some good conversations with the adults in her life. Michaela stayed overnite at Aunt Lori’s and Aunt Kath’s house yesterday. She surprised me when she actually asked to go and even more when she made it through the night! I think she was very happy to get away from her brothers and the dogs. She doesn’t like either of them these days. . But her brothers? Forget about it! Everything they do and say is annoying to her. It’s easy to see a marked change in her attitude from last year at this time, to now.
It’s sad really and very hard to impress upon her how precious this time is. The lumps are shrinking, her pain is well under control and she doesn’t have to have any treatment for a few more weeks. Who knows when this will happen again~ If ever? I am trying to impress upon her the fact that, although she doesn’t have alot of control in her life, she can choose to be happy and that I want to help her.
I am so very proud of her and I don’t know that I could handle all that she has. I just don’t want her to miss out on this time, this good, pain-free and potentially happy time.
Even though this is a “good time” as far as treatment goes, she’s still taking so many medicines every single day. What could they be doing to her ability to find joy? That’s what’s missing...JOY. Her happy moments are very spaced out.
I think I will seek help tomorrow. Maybe there’s someone that I can talk to about how to guide her without asking her to deny her anger and just put on a happy face for me. I also hope that there is someone out there in Hershey that can help her get out some of her thoughts and fears. Someone safe to allow her to ask questions and get some of her fear and anger out in the open. I am too close and I want to do what’s best for her. I want to be what she needs and I don’t think I am right now.
We go to clinic tomorrow and I hope we have a good day! I really need one.
Did someone change the name of this page to Kim’s Korner? I am sorry~I can’t wait to tell you all funny stories and hopeful news about a Miracle for Michaela very soon....
Please keep praying.
PS~
I must correct 2 items from the journal page from before when I was talking about the fundraiser.
1) It is a TROY BUILT mower....not TOY BUILT
2) Tracy Musser’s email address is Tmusser36@aol.com, not Tmusser366@aol.com
Damn acrylic nails!
Thursday, April 29, 2004 6:59 PM CDT Hi! Catch up time again! Before we get into our family adventures, I must tell you about how you can get a new lawnmower, if you’re interested. As usual, this story has more layers than an onion, so bear with me.
A few months ago, Aunt Jana, Dave and I went to a basket bingo that Kim Geyer was holding to raise money for the Leukemia/Lymphoma society. ~yup, Dave went too and I must tell you Mr. Mease really enjoys a rousing game of bingo! I’ve even caught him scanning the Merchandiser looking for bingo games! Anyway, Kim rode in a fundraiser last year in Florida called CYCLEFEST CENTURY RIDE. It is a 100-mile bike ride and this year she will be riding in Lake Tahoe. She must raise a minimum of $3500.00 to participate in the ride and 75 f that money and anything beyond the $3500.00 goes straight to the Leukemia/Lymphoma Society. At the basket bingo a woman came up to me and told me that she heard that Michaela liked veggies and wanted to invite us to her family’s vegetable stand. She said Michaela could pick out whatever she wants whenever she wanted to come over. They have a stand on Donerville Road and we had intended on taking her up on the offer. Before we could though, Tracy contacted us again. She wanted to do something more for us and had a plan. She purchased a toy-built, self-propelled, mulching lawn mower and had tickets printed up. She is raffling off this lawn mower for us. The money that she raises will go into Michaela’s fund at the Bank of Lancaster County and help us continue to pay our bills and quite possibly medical expenses if our insurance company doesn’t have to pay. Her name is Tracy Musser and her email address is Tmusser366@aol.com
We dearly appreciate all the help and know that we would not have our home if it weren’t for our friends.
Michaela will be in Hershey tomorrow for blood counts. I know she’ll need platelets because her counts were low on Wednesday. We usually get a transfusion of platelets when she dips below 30,000. She was 15,000 on Wednesday and I suspect that she didn’t get a transfusion that day because they wanted to see what she could do on her own. Her gums began to bleed today, so that’s a sure sign that she’ll get at least platelets.
Dr. Neely, Dr. Comito, and Dr. Maris all agreed that it would be in Michaela’s best interest to begin Zoloft too. So, on Wednesday evening we began that medicine. It will take up to 2 weeks to see if it’s effective. Until then, we just wait and see.
Today was a very good day for Michaela. She was up by 6:15, took no naps and is just now heading to bed! She wasn’t very active and even turned down a trip to feed the ducks at Long’s Park. She mainly spent the day watching videos and chatting with me about all the toys she sees on television and wants me to buy her. We had some very good conversations and she even ate fairly well. Not like she used to, but hey, one step at a time.
Hopefully, tomorrow will be a quick trip to the clinic! My bathroom is getting painted by Aunt Lori and Dave! I guess I was wrong and it isn’t my destiny to have a crappy bathroom after all! I picked up the primer and paint today. The walls will be painted “banana cream”! I am so excited! I can’t wait to have my new bathroom!!!! After clinic, I need to scrub down the walls and ceiling to get them ready for Saturday!
Well, I need to get the boys down for the night and give Kay her meds! Keep the prayers coming! Also, please, consider sponsoring Kim on this years ride. Email me, and I’ll get you in contact with her.
Blessings!
Kim
Sunday, April 25, 2004 4:47 PM CDT Hello! Happy Sunday!! I sure have allot of catching up to do, so I’ll get right at it.
Thanks for all the prayers for Michaela and her family! We have really had a pretty good week and I believe that would not be the case without our friends and family praying for us!
The week began a bit shaky. By Wednesday Michaela’s lip was obviously infected and her jaw was swollen. She had a bruise under her lip and it was very difficult to look at. It just looked so sore and it truly was. We were “soaking” it three times a day in peroxide and applying Neosporin, but it wasn’t improving. Dr. Freiberg prescribed an antibiotic that we could give her at home, but was concerned enough to warn us that there was a chance that, by Thursday, she would need to be admitted for IV antibiotics. We really hoped that wouldn’t happen, but I promised that if it got worse, we’d bring her right in.
After she got platelets, we were on our way to the lawyers.
Our insurance company has denied us coverage for the trip to CHOP. So far that bill is up to $40,000. They have denied us 3 times so far. This includes the time that the PA Dept. of Health was assigned our appeal. They hired a company to oversee our case and their own pediatric oncologist told them it was medically necessary and should not be considered experimental. Sounds good right? Not in this case. The company still decided to uphold the original decision because MIBG is a clinical trial.
I am no expert, but it seems to me to be a game of words with these suits. The first and second decision we received to deny her coverage was based on the fact that the treatment is considered “experimental and investigational”. Now an impartial oncologist, of their choice, tells them it shouldn’t be considered experimental because of it’s proven track record and they stop using the words experimental and investigational, and choose now to deny based on it being a clinical trial. They must not realize that MOST pediatric cancer treatments are a clinical trial. Especially for neuroblastoma.
Essentially, they are saying that if we participate in a clinical trial, where information is gathered for all other neuroblastoma patients, they shouldn’t have to pay. If that’s the case, they should be ashamed of themselves. Not only would we have not gathered information that would benefit many children and their families, but also they would have had to pay for some other treatment that isn’t in the best interest of Michaela. The covered treatments that they would have happily paid for weren’t what the esteemed neuroblastoma doctor, Dr. John Maris, recommended for our child. Even our wonderful doctors at Hershey knew of the promise this treatment offers.
I have always argued with people that blame HMOs for our current insurance problems in the United States. I have always been extremely grateful for the outstanding coverage and care allowed to my children and myself. I still can’t believe that we are in this battle, yet, here we are!
Anyway, I have to tell you about our attorneys and how they came to our rescue. Aunt Jana has a friend, who is a lawyer, and she always told Jana that she would do anything that she could for Jana, and essentially, us. Up until now, her friend was able to help best by being a good friend and a shoulder for Jana to cry on. This lady has been very understanding and supportive and when Jana found out about our predicament, she called her friend. Unfortunately, her friend wasn’t able to help because of a conflict of interest, but she did have someone that she thought would be very helpful to us. She was right and although she will stay in the background and remain un-named she paired up with another attorney named Jack Robinson. This pair of brilliant minds isn’t new to this battle and asked to meet with me on Wednesday, having only heard about us on Monday! Now that’s amazing to me. They are attacking this issue on many different fronts. They are on it and I am thrilled! I won’t go into many details because I have gone on long enough, but I am feeling very fortunate to have these people in my corner, fighting for what is right for Michaela!
Okay, now I have to tell you that Michaela is doing wonderful! Her lip looks wonderful and she isn’t in any pain. She is sleeping a lot more than I am comfortable with, but I’ll talk to Pat in CHOP to be sure that this is normal. Michaela is sleeping just about as much as she does when she is sick, yet she says she is fine. Her red blood cell count has been good since Monday, so I’ll just touch base and make sure this is to be expected.
Other than sleeping too much, she looks wonderful. She hasn’t been sick and I just hope her energy level improves so she can enjoy this “good time”.
Nicholas and Daniel are doing great! They had a wonderful time on Saturday! Aunt Lori came over to help Dave with the yard work that has been piling up and the boys “helped” too. Michaela slept through it all sadly, so she missed out on that fun. Kath, MumMum and I went through some kids clothes that I had been saving for a yard sale that will never happen. It was nice to get so much work done and the yard looks great! May 5th we are getting a dumpster and cleaning out the garage, basement, shed and entire house! The kids better keep moving and not make me mad, or they’ll go too!!! Just kidding!
Maybe, if we can get Dave to finish the sanding, the bathroom can get painted!!!! Whoooohooooo! We’ll see....it seems like I am doomed to have the ugliest bathroom in the world.....
Anyone need a new, self-propelled, mulching mower????
Gonna leave you in suspense and explain later!!!!
Blessings!
Kim
Tuesday, April 20, 2004 10:39 AM CDT HI!!! Sorry about the “technical difficulties”, but thank God; they are with the webpage and not Michaela. Dave is trying to put music on Michaela’s opening page and somehow wiped out her journal page. There are some beautiful caringbridges out there with music and we just can’t seem to figure out how they do it....
Michaela is doing terrific! She had a rough day yesterday though. She hadn’t had platelets since Friday at CHOP and was in dire need of them by yesterday morning. She woke up covered in blood that was seeping off of her lips. It wasn’t pretty, but she didn’t lose too much, because her red blood cell count was still above 8. Apparently, it looked worse than it was. We had directions from CHOP to take Michaela to the ER in Hershey on Sunday to have her counts checked and we probably should have done that, but she was feeling and looking so good on Sunday that we didn’t go. She didn’t want to go either. That, coupled with the lack of bleeding, convinced me to let the ER trip go since we would be in Hershey’s clinic on Monday anyway. Wrong! Mother of the Year, with her tarnished crown, needs to learn to follow directions.
Right now the biggest issue that Michaela is dealing with is her lip. It is swelled up like Fat Albert and looks like raw liver. We are soaking it in peroxide and we keep Neosporin on it. Michaela’s white blood count is down to .03, which is neutropenic, so we have to be vigilant against infections. She is feeling good enough that she doesn’t put up much of a battle about the mouth care, but she is anxious for it to be healed. We also have to keep a close eye on her to be sure she isn’t picking. It seems to be more of a nervous habit and I don’t think that she knows that she’s even doing it most of the time. The second biggest issue we have is her lack of energy. She is awake much more than before MIBG treatment, but she doesn’t really want to do anything more than watch television. That’s okay, I still see my Michaela shining through when she’s talking to Scooby Doo on TV, or when she’s telling me to “watch this commercial, Mom, I really want that”. The most recent request is a Praise and Worship CD. Can’t go wrong there, I might have to get that!
The boys are doing great! They seem to be growing up so fast! Since Michaela doesn’t want to do anything, they have accompanied me on a few shopping trips. It’s not the same without Sissy, but they have been very well behaved, and I am enjoying their company. They don’t ask for everything in sight, thank God, but they can be a little more adventuresome than Michaela ever was. Yesterday, I went to Wal-Mart to buy a couple of fans. It’s been very hot here, the house was up to 85 degrees yesterday, and our central air conditioner isn’t working. Dave said that we couldn’t even call a repairman until he creates a path through the garage. With that as the case, who knows when we’ll get it fixed? Anyway, the boys were very good and it was time to check out. We got into line and I was putting the fans on the belt and noticed the clerk was looking at me funny and Nicholas was nowhere to be found. Daniel was giggling and looking behind the clerk, where Nicholas was getting ready to play with the cash register. The poor clerk didn’t know what to do. I guess she thought I saw him there and was not going to make him leave. When I finally did see him, I couldn’t help but laugh at him! I made him get out from there and asked the clerk if her if employees got a discount. She said they did, but only 10%, not enough to put Nick to work. Now, if she’d said 30%, I’d have to consider it.
We return to Hershey for counts and a transfusion tomorrow. Hopefully, we will have Michaela’s lip improved, if not, they may want to give us an oral antibiotic. I also have a call into Philly, to find out if we need to start the GCSF shots again, to help boost her white blood cells. I expect we will, but Hershey didn’t seem to know, so we’ll see what Dr. Maris says.
Did I tell you how wonderful it is to see Michaela improving so rapidly! Even she can now see the improvement on the lump on the back of her head! She doesn’t have nearly as much pain and rarely asks for break-through pain pills. She is eating and talking and just plain being my Michaela!
Blessings!
Kim
Saturday, April 17, 2004 10:38 PM CDT Good Morning,
Hopefully there will be an update later today. We are experiencing some technical difficulties and trying some advanced techniques. Please be patient. Thank you.
Saturday, April 17, 2004 11:11 AM CDT We finally all made it home by 9pm last night and we had a sweet homecoming! The boys were very good and made me so proud! I got nothing but good reports from everyone! They are amazing little men and I truly feel blessed! They give me lots of funny material for the webpage, but honestly, they are such wonderful boys and I am so full of pride that I could burst!
Michaela got two transfusions of platelets yesterday and one transfusion of redblood cells as well. She was very tired and slept most of the way home and went straight to bed once in the house. It was a wonderful surprise to me to find her in the bathroom cleaning her face this morning. She still has bleeding issues and when she rubs her booboos in her sleep, they bleed. It looks worse than it is, but today was the first time she actually cared to clean herself up. Lately, it has been a battle with her to allow us to clean her up and put medicine on the cuts. We have tried to stay on top of it and we are always putting neosporin on the tiny cuts, but when she sleeps, she doesn’t realize what she is doing and she is constantly re-opening the cuts. Last night she slept with socks on her hands to give her face, ear and nose some protection and I think it worked out pretty well. I don’t think she is trying to do this to herself, but it has been a constant battle. Today is a good day! She is not 100% yet, but it’s coming! She is happier today than I have seen in weeks, maybe months. I am so grateful to Dr. Maris and all the people that made this trip to CHOP possible. I have nothing to say about our insurance, except that we will fight this wrong decision with all the energy and passion we can muster. It’s not only about Michaela. It’s about all families that may not be as fortunate as we are. Dr. Maris could have turned us away and I can’t bear to think about where we would be now. This may not be the cure that we ultimatley need for Kay, but it’s going to give her the will to continue and time to find the next step. There would be no way that, in the condition she was in, she could have lasted much longer. Heaven is beautiful and God is great, but isn’t ready to call it her home. Hopefully, He will be willing to appreciate this angel on earth for a long time to come!
Tomorrow, we may need to go to Hershey’s ER to have her blood counts checked and receive any transfusions that she may need. It would be very nice if we could tell, without a doubt, that she can hold out until Monday for our clinic appointment. I can’t wait for everyone to see her in Hershey! They desereve alot of credit for arranging our CHOP trip for us! I know our friends in Hershey will be thrilled too! These families are the greatest! Through all their battles they still pray for us and give us unbelievable support!
I feel so blessed today! I just feel light-hearted and peaceful! It’s so nice to have my family under the same roof, and more important than that, they all feel good! Thank God!
Blessings to everyone for praying, sending positive thoughts, and uplifting messages!
Kim
Friday, April 16, 2004 10:30 AM CDT Well it’s official, WE ARE COMING HOME! Kay’s radiation level was 3 this morning and it needed to be at least a 5! Way to go, girlie!!! She will get platelets, which are already running, and blood before we can go. It may be necessary to have counts done at home over the weekend, but I am not sure. Hopefully not, because that will pretty much guarantee a trip to the Emergency Room at Hershey. Oh well, not a problem. At least we will be sleeping in our own beds and I get to hold my little mens! I miss them so!
Aunt Lori and Aunt Kath said that the boys have been wonderful and when they come home tonight from school there is a surprise on the kitchen counter for them. Aunt Lori and Aunt Kath left them each a dollar bill and a note that tells them that they were very good boys. How sweet! They will be thrilled.
Before we leave we might be giving Kay a tour of the hospital that she hasn’t been able to see yet. When we arrived on Monday she could have looked around, but she was too tired and didn’t even want to get out of bed. Now, she can see how big and fun CHOP is. She also said that she wants to see the Ronald McDonald house is so she knows where Daddy slept. Time will tell if she’s interested when we are discharged or just wants to get on the road to home.
We lost another child to Neuroblastoma last night. He is an only child of a couple in Texas and loved dearly. He was a beautiful angel on earth and now in heaven. Please remember all our families in your prayers. The brave children fighting, the blessed children in heaven and all their families who watch with little control as their life spins seemingly out of control.
Love,
Kim
Thursday, April 15, 2004 10:36 PM CDT Hopefully this will be the last journal entry from CHOP! It has been an interesting and difficult week, but today, Michaela woke smiling and in good spirits. It was sunny outside the hospital and inside her room. Her radiation level was down to 13 and she was able to have her catheter removed!!! At first she was a bit afraid and almost insisted on leaving it in, but eventually she was convinced to let it be removed. It hurt/stung for about ½ hour and then she was fine.
There’s a good chance that we will be able to be discharged tomorrow. Her radiation level has to be a 7 or lower before we can go, but I am cautiously optimistic. If she does get discharged, it won’t be before she gets platelets and redblood again. It’s a good idea to get her “tanked up” for the weekend. We had the MIBG scan today to see that the MIBG got to the cancer and it sure looked like it did to me. I actually think the tumor on the top of her head is already shrinking. Did I tell you all that already? I’m sure you don’t mind reading it again even if I did.
Aunt Jana and PaPa came to the hospital today to visit Kay! It was wonderful to see family and gave us something to look forward to. Aunt Jana and PaPa seemed as impressed as I was with the size of the hospital. It’s an impressive place, but it’s hard not to get sad when you think about the fact that it’s all children being treated here. Many of them, I’m sure are worse off than Kay even. It’s very sad.
Michaela cried this morning for her brothers and I think she finally misses them. We hung pictures of them cheesing for Aunt Lori after their bath. I got them in my email and printed them out for her. When I talked to the boys tonite to say goodnite, they both said they missed me and Nicholas wants me home to hold him. Daniel wants to come to the hospital to see us, but he knows that it’s too far away. This was the first day that the kids really expressed any type of sadness over being separated and it was hard to hear. I am hoping so much that we will be together again by tomorrow evening!
Thank you all for the supportive messages and email! We appreciate every kind word you send and every prayer you say!
Blessings!
Kim
Wednesday, April 14, 2004 5:53 PM CDT Hello! Our second day in Philly ended reasonably well. Michaela did have a fever of about 102 and had some trouble keeping her bloodpressure up, but these issues resolved themselves with Tylenol and a bolus of fluid. Today was fairly uneventful as well. Michaela did have some issues with urinating out and around her catheter, which I didn’t know was even possible until she woke up in a soaked bed. That kind of put a bad start on things this morning, but by the time she was cleaned up and had her sheets changed, Dave was here to give me a smoke break. Unfortunatly, she still hasn’t eaten anything except a few saltine crackers and they didn’t stay down long. She was fighting nausea until she got some medicine to help that out. She also said she was fairly achey, and I am hoping that means the MIBG is breaking down the neuroblastoma in her bonemarrow.
I think I forgot to tell you all that Dr. Maris talked to us on Monday and told us that the neuroblastoma has definitely spread since the last MIBG scan. It is basically everywhere. Her skull, shoulders, upper arms, her pelvis, calves, and her entire spinal column. He said that the spinal column might not be entirely tumor, but that there may just be so much in her bonemarrow that it is radiating out and showing up on the MIBG scan. All of this is bad news, but luckily we are in the right place and receiving the right treatment for her. Now, all we have to do is wait for the good news….thinking positive…….
Dave and I are fairing well. It’s exhausting and difficult being away from Nicholas and Daniel. I got an email with a picture of them after their bath last night and it is hanging in Kay’s room. I talk to them every day and they are doing wonderful!
Michaela, for the most part, is quiet and content in her bed. She still isn’t her friendly, fun loving self and has no time for any of the staff at all. She barely speaks to Dave and I unless she needs something. She hasn’t asked to go home since Monday, but I know that’s where she’d rather be. She is still picking at her lips, ear and nose. She is constantly bleeding and it’s a complete mess. I can’t convince her to stop no matter what I say. Tonight I put socks on her hands to try to keep her from picking in her sleep. We’ll see. She did get platelets today, and everyday since Monday, but it doesn’t seem to help much.
Tomorrow Pa-Pa and Aunt Jana are coming in to visit. Hopefully this will cheer her up. Time will tell, I guess. It would be nice if she could get her catheter out tomorrow, but we’ll have to wait until morning when they come to read her radiation level. If she is at 15 or less, it can come out. This morning she was at 25. 7 is the magic number for discharge. That’s the one that I am anxious to see.
Until tomorrow, please keep praying!
Kim
Tuesday, April 13, 2004 2:04 PM CDT Hi everyone! This will be a brief update to let you all know that Michaela is doing very well! We are adjusting to CHOP life and having to remind ourselves to give it a chance. It certainly isn't HMC! Everyone in general is kind and caring, but they aren't our "family". It takes forever for anything, including meds. We have decided to just give her our home meds while we're here.
Michaela is doing very well. She had her catheter placed bright and early this morning. It was very uncomfortable for her, but she has the pain under control now and is doing much better. She had platelets and blood yesterday and again today and she is more like herself. Not so worn down. In about 1/2 hour she will get the MIBG treatment and it will run in her port and take about 1 1/2 hour to complete.
I have lots more to say, but very little time. I'll get back on later and update her room number and phone number for anyone that wants to give a call. I just want to make sure she's feeling well first!
Keep Praying! Let's get greedy and shoot for a cure this time. Enough piddling around.
Love,
Kim
Tuesday at 7:30PM
Well, the infusion is done. The close monitoring is finished. Michaela is ready to play "Guess Who" with Daddy while mommy catches you all up. We have seen no side effects and from now on all we do is wait for the levels of radiation in her body to get to a point where she is safe to be around people. Go MIBG, Go!!!
I have to let you all know that the most resent appeal to the PA Dept. of Health did not go in our favor. The PA Dept. of Health hires another company to make their decisions for them. They felt that the MIBG was not experimental and was medically necessary, but Pennsylvania always upholds an insurer's contract. Our company does not cover Clinical Trials. This is a clinical trial. So....even though the pediatric oncologist that reviewed our claim sided with us....we're still screwed.....We have another appeal to go through and I will begin that when we're done with the treatment. Right now I don't need the frustration!
When you all say your prayers tonite and ask for Michaela's Miracle, please remember Dr. Maris. He could have refused us treatment. He could have taken away our hope. He didn't and we need to thank God that he is such a good doctor and person...
That's all until tomorrow.
Blessings!
Kim
Monday, April 12, 2004 6:27 AM CDT Hi! I hope everyone had a wonderful Easter! Ours was very nice and busy! We saw most of our family and Michaela did the best she could to enjoy herself. She is ready for treatment and I hope it works fast!
The boys know that we will be gone for a week, but they don’t really understand how long that is. They are excited to spend time with everyone that will be taking care of them and haven’t put up any fuss at all! I am so proud of my little men! I will miss them terribly!
The house is a wreck and it’s very hard to leave, but we do what we have to. Aunt Kath will be sleeping in the messiest room she’s ever seen, but at least we washed the bedclothes and they are snuggly fresh and smelling like downy! My favorite! I won’t discuss what she has to maneuver around to get to the bed....YIKES!
We will be in CHOP until at least Thursday and possibly until Sunday. I will post her room number and the address as soon as I get it and have access to a computer.
We are already late, so I will end this update! Keep praying for us all and most importantly for this treatment to make Michaela well again! We need a miracle and have to believe that it is ours for the asking!
Blessings!
Kim
Friday, April 9, 2004 7:10 PM CDT Hello! We spent the last two days at CHOP~Childrens’ Hospital of Philadelphia. The place is huge! They even have a Mc Donalds inside!!!! Despite feeling like fish out of water, Dave and I have found everyone to be warm and welcoming. I have dreaded this for weeks and now that we have faced the new environment, I have to say that I am pleasantly surprised.
Michaela, however, is having a hard time adjusting. It’s been a tough couple of weeks with the last two days being extremely stressful and tiring for her. I remember her acting this way at diagnosis. Everything is scary again and she just wants to be left alone most of the time. She is able to give a few smiles, but she’s not her normal, happy-go-lucky self.
I felt the need last night to explain in a bit more detail about how serious her cancer is. We told her that the treatments that she has had so far haven’t stopped the cancer and that she was enduring all of the tests and procedures this week so that she could receive a new treatment that might help. I gently explained that she was in charge and that if she was too tired of fighting that we could stop because I want her to be happy. I expressed that I wanted her with me, but that I knew heaven was a beautiful place with no pain, and that if she wanted to we could just focus on keeping her comfortable and allow her to rest without anymore treatments. She handled the conversation well and admitted that she was having a hard time. I explained that there was medicine that would help her feel not so sad and she said she’d like to try that. She said that she wants to be happy, but no matter how much she tried it wasn’t working. I talked to Dr. Maris and I will talk to Dr. Neely about beginning some type of anti-depressant.
Our insurance company denied us coverage for the MIBG treatment. We had an expedited review on Thursday, which involved a conference call with members of the insurance company, the president of the insurance company, Dr. Maris, and Dave and I. Dave and I were on the side of the road talking on cell phones.
They turned us down again.
Now, it goes to the PA Dept of Health for the last appeal available to us. We hope to hear sometime Monday. We will already be admitted to the hospital and their financial counselors told us that we shouldn’t worry about the financial issues until the last appeal is decided. If we are ruled against, I intend to contact our state representatives. This is unreasonable. To deny a dying child hope for a pain free future and possible cure is unbelievably cruel.
Today in Philly, Michaela met Dr. Maris, had her MIBG treatment, a blood transfusion, and a platelet transfusion. We arrived in clinic at 8 am and never made it home until 7:30. Long day.
Nicholas and Daniel had a lot more fun today than we did. The spent the day with Aunt Kath and visited her work and saw tons of people that hadn’t seen them since they were little babies. After that they visited Aunt Lori at her job, where I worked, and saw more friends, got more candy, and had more fun. Then it was lunch at Mc Donald’s and nap time. After that they had supper at Aunt Lori and Aunt Kath’s house and then came back home to wait for Mom, Dad and Michaela. It was wonderful for them to do something special today and they really had a good time! It’s not even 9’oclock and they are asking to go to bed!
Tomorrow, we will paint Easter eggs with Aunt Lori and Aunt Kath. After that, we will be making popcorn and hopefully watching CHEAPER BY THE DOZEN on video. It’s going to be a wonderful break and I hope to have fun stories to share!
Until then, As Grandma Mease says, Keep stormin’ heaven!
Kim
Wednesday, April 7, 2004 4:37 PM CDT Hi all! Yesterday Michaela has her bonemarrow biopsy and head MRI. I usually drive because I think I am a better driver and Dave likes to play with his imaginary brake pedal on the passenger side. Anyway, I made a mistake when I was taking my morning meds. You know, birthcontrol, bloodpressure, vitamins, anti-depressants (not that they do me any good) and I accidentally took my sleeping pill. Dave drove to clinic. I slept.
Anyway, we arrived at clinic around 8:30 and received platelets and redblood cells. We were supposed to begin her MRI, under general anesthesia by 2:30, but we were held up in clinic with yet another bloody nose. We reached the Same Day Unit by 3:00 where we signed the consent for the anesthesia and she was off for the bonemarrow biopsy by 4:00. By 5:30 the MRI and biopsy were finished and she was taken to recovery. There we waited for another bed to open back in the Same Day Unit. By 6:15 we were back in the Same Day Unit, but no one really knew why we were there. Michaela was fine. Sitting up in bed, munching on pretzels and sipping a Sierra Mist. The nurse came in to remove her IV around 6:45....but she had one problem. Michaela didn’t have an IV and she didn’t know how to de-access a mediport......Unbelievable. We were on the road and heading to pick up the boys, finally, around 7:20....
Grandma and Grandpa Mease watched all the kiddos while Dave and I got our taxes done. Normally, they’re done by 2-2, but things have been hectic lately around here.
Tomorrow we will be in Philly by 12:30 for Michaela’s MIBG injection. At 3:00, we will be on a conference call with our insurance company. They are denying Michaela coverage for the MIBG treatment. They feel it is “investigational and experimental”. I don’t know if I am beat down or what but I have handles this very calmly. Speaking to the company on the phone, telling our side of the story, I realized how lucky we have been up until now. Our insurance has been wonderful and I think it’s reasonable that we explain why they are dead wrong. This is not experimental or investigational. It is classified that way, but it has been a very important part of treating relapsed neuroblastoma since the 80’s. The classification is due to the fact that MIBG is like an orphan drug. It has very specific, limited uses. They don’t mass produce it because of that. The more specialized a drug is, the longer it takes for FDA approval. Hopefully, we will be able to be approved. Dr. Maris has already penned a letter; Dr. Neely was calling the insurance and seeing if they need any more verification. Even the contact at the insurance company is in our corner and warned the PA department of Health that they may receiving the next step in the appeal process. She was very kind and supportive.
Now on to the results that you all have been waiting for. Unfortunately this is not the news that I want to give.
The CT scan last week shows a new tumor. It is at the top of her pancreas and measures 2.5 X 1.5 cm. Everything else was unchanged, therefore non-existent.
The official bonemarrow biopsy results are not in, but Dr. Neely took a bonemarrow aspirate and he was able to identify clumps of neuroblastoma cells.
The MRI results showed great improvement on the tumors that were radiated. There is still the tumor in her mouth noted and the new lumps on that back of her head are officially now to be known as neuroblastoma lumps. I say that because they are obvious. We just hadn’t put a name to them. There is about as much inside her head as there is visible on the outside. That makes this tumor about the size of an egg. Small grade...
It hasn’t infiltrated the brain, but it is pushing up against it. It will be a problem if it isn’t treated~~ effectively~~ soon.
I am at a loss for words now. I feel beat down and plain sad. There really were no surprises, I guess, but I guess I was in a bit of denial.
We still have hope, it’s hard to hold on to, but it’s there.
Thank you so much for the prayers! I can’t say enough about how important they are to us.
Blessings!
Kim
Sunday, April 4, 2004 5:08 PM CDT Damn, I hate to be right! This morning, at about 5:30, we got the call that Michaela’s nosebleed was pretty much out of control and that the blood must have been going into her stomach while she was sleeping and she was vomiting as well.
Again with the toothless triage nurse from Lord only knows where. I call and deal with her ridiculous questions, but meanwhile Dave was on the way to Hershey ER. They do a blood count and she is down to 12, 000 platelets. Michaela is usually kept about 40,000 because she has bleeding gums and other unpleasant symptoms if she goes lower. Nothing like this morning has ever happened before and hopefully it never will again! Her redblood cells were still fine, so she was able to squeek by with just a platelet transfusion, thank goodness! Tomorrow morning I’ll call the clinic and I am sure they’ll want to see her and do another blood count and possible more transfusions. There goes her “day off”! Poor baby!
Let’s recap, shall we? On Thursday, Michaela had her platelets transfused. They were at 46,000 without the transfusion. On Sunday morning, she is down to 12,000! Who is taking her platelets? I want the culprit cought and prosecuted to the fullest extent of the law! This is an outrage! She needs them. She feels terrible and looks worse! Her nose, mouth and lips are covered in dry blood! I think a fitting punishment would be to make whoever is taking these precious platelets has to clean her up! She is miserable and doesn’t want water or a washcloth anywhere near her! Let them put up with her wrath! I feel so bad for her, I really do and this isn’t funny, but I need to vent I guess! I just wish she would enjoy a nice warm bubblebath with some soothing music. She could soak as long as her tired little body wanted to and after I would lotion and powder her like when she was a baby! I could hold her and rock her after while she napped in my arms! I can promise that these things will not happen. She is exhausted and wants no parts of anything except the sofa right now. Maybe later she’ll let me rock and cuddle her, but the bubbles and music are not in the picture, that’s for sure!
I guess if you put up with having your weekend ruined and you can’t do seem to get by for more than 2 days away from the hospital, you can be stinky if you want! Poor angel!
Please, if you need a focus for your prayers tonite, ask God to guide Dave and I down the correct path with Michaela’s treatment. Ask for her comfort and some more good days for her and make the tests and clinical trials worthwhile. We want good time, not just time. We have to be careful not to be selfish.
Thanks for listening, caring and encouraging us!
Kim
Saturday, April 3, 2004 9:09 PM CST Okay, let’s see where we left off....
Friday, Michaela had a long day at radiology for her CT scan. She did a great job at drinking the contrast and was very still during the test too. We went back to the clinic to have her port de-accessed and saw Dr. Neely. He looked at the CT himself and, although the official report wasn’t done, said that he saw nothing on the scan. He said he would call if he heard otherwise and we haven’t heard so I expect that he was correct. The CT wasn’t really the test that is going to tell us much really, but it was good to hear that it was still okay.
Friday nite Michaela went to stay overnite at her Aunt Kath’s and Aunt Lori’s house and although she was tired, she was very excited to go. After she was there for a short while, she fell asleep on their couch and had a very restless nap. When she woke up she was complaining to them about her back hurting and said that she wanted to come home, so of course, they brought her right home. What I saw was like a flash back to when she was first diagnosed. She was having very exaggerated twitches in her legs. It was almost as if she was startled and was jerked awake. It was very upsetting to her and she wanted to go to the hospital. We gave her a pain pill and took her temperature. Her temperature was 100.3, but I kind of put that off to her being bundled up and quite upset. I called Hershey’s nurse triage and while I was being jerked around with the toothless nurse from Alabama, she dozed off on the couch and actually looked very peaceful. By the time Dr. Freiberg called us back, I was feeling alot better about Michaela’s status. The nurse had me pretty irritated, but that’s another story....
Dr. F agreed that Michaela was probably not in any danger and with a white blood cell count that wasn’t in the toilet, she was fine to stay home. He told me if she was having trouble later resting that I could give her an ativan. He felt this was more of a nuisance than anything.
When she came into the livingroom this morning, it looked as if she had been awake for quite sometime and spent that time picking her lips until they were bleeding. It’s a nasty habit that she has and I can’t seem to get her to stop. Both Dave and I were very upset with her about this and talked to her pretty severely. It very hard to watch her pick and pick and pick until her fingers are bloody and her lips look like hamburger....It’s disgusting and upsetting to see her hurt herself. When her platelets are low, which is pratically always, it doesn’t take much for her to bleed badly and she just can’t seem to stop herself. Anyway, she felt alot better that last nite and wanted to go back to Aunt Lori’s. We made a deal that she could, but she had to promise not to pick anymore. So far she is keeping her promise, but now her nose is bleeding everytime she blows her nose. Poor thing. This really isn’t fair! She told Aunt Kath and Aunt Lori that she is sick and tired of the lumps on her head. They told her that hopefully the MIBG treatment will take care of that and she wasn’t convinced. She’ll believe it when she sees it....Don’t blame her! I thought we had off from a trip to the clinic on Monday, but it looks like I will need to make an appointment and head on up anyway.
Nicholas and Daniel and I went spring sneaker shopping. Their sneakers were getting pretty ratty and they needed new ones. They were very good and they both got the same pair. They light up when they walk, so they think that’s pretty cool...
I went to see The Passion of Christ in the movies tonite. It was extremely emotional for me. I spent most of the movie crying. If it weren’t about Jesus, I would say it was overly violent. It is very sad that people should do something like that to such a peaceful, good man. I was shocked at the hatred and sad too.
We’d like to try to get to church tomorrow, but we’ll see how Kay is. It seems like the nose bleeds keep coming. We might not even make it til Monday. Might have to go to the ER.
Sh..!
Kim
Wednesday, March 31, 2004 8:11 PM CST Hello! Not much to write about tonite, despite the 2 days between entries. Michaela had a pretty good Tuesday. Unfortunately, Daniel went to bed with a fever on Monday nite and woke up pretty yucky on Tuesday too. Nicholas was a big, brave boy and for the first time ever he went to school without Daniel. He was very proud of himself and we made a big deal out of his new independence! He told us on Monday nite that he would go to school by himself, but he’s said that before and then gets scared in the morning and stays home with Daniel. Actually, they both have done that. Anyway,he spent the day with Michaela and I and was a very good boy in Hershey. He even wore a mask so no one could catch his cold.
When we got to Nuclear Medicine I got a lesson on why it’s not good to forget to check your answering machine. Todd said that he had called Monday nite to the pharmacy to order the MIBG injection and was informed that it wasn’t available due to a quality control issue. He said that he called and left a message to try and save me a trip, but never heard back from me....whooopppss. No problem, really I was very excited to head back home. I think I gave Amy a heart attack when I called her to tell her what was going on. She hadn’t heard anything and was very upset because she knows how important this MIBG treatment is and she knows from making all the arrangements for the tests that, without an MIBG scan, Michaela can’t get her MIBG treatment. In all the times that Amy has fielded my many questions and calmed me down, there probably never was a time more deserving of my panic and I just didn’t have it in me. For some reason I am confident that Michaela will have whatever needs to be done. It’s not worth my hysteria and I was actually quite happy to not face waking Michaela up for the rest of the week for this scan. It’s not a difficult or painful scan, but this hasn’t been a very good time for Michaela and I very much enjoyed the fact that she could sleep for as long as she wanted today. By the way, on Tuesday night, she went to bed at 6:00 and slept until 10:30 this morning. She enjoyed her free schedule and so did I. Does this mean that I have found a new inner piece with this battle my beautiful girl is fighting or have I finally given credit where credit is due and decided to allow the people with the skills to do their jobs without me looking over their shoulder? Nah,,,I think I was just looking forward to sleeping in. No matter who takes care of Michaela, and no matter how good they are at their jobs, I will probably never be able to let my guard down. Quality time and NO regrets are still my ultimate goals. I still have a mission and a job to do. I am Michaela’s mom!
Tomorrow we go to clinic for counts and will see Dr. Neely. He has been away and I look forward to seeing him. He has been with us since the beginning and I have to admit I am afraid of how he might react to Michaela’s decline. Or maybe he will be unphased. Maybe she only looks bad to me....I look forward to his opinion on possibly changing her pain medicine to a fentinyl patch. I am thinking it might be a better choice than the oral oxicodone and oxicotin that she is taking now. There are times when I feel she could use some pain medicine and although she is limping, she won’t take it. I hope he agrees and we are right.
We also have to hope that her kidney function blood test improves tomorrow. That may be another roadblock in our road to MIBG.
On to Michaela’s mood and I have to say it isn’t much improved. She has had some good time today when Mrs. D. came over to read to her. Her favorite read now is Beverly Cleary’s “Ramona books”. She loves the character and can relate because she is an 8 year old girl. At first she didn’t want Mrs. D. to come over. Her leg was bothering her pretty badly, but after enough oxicodone, she was up for it. Mrs. D. stayed and read to her for about 2 hours. Her brothers still irritate her to no end, but honestly they are being very good and trying to stay out of her way.
Tonite she was talking to Aunt Lori and Stephy and actually smiled a few times.With any luck at all she will get to spend time each of them over the weekend. If she has the will, we’ll find a way. It would also be nice to get to church this weekend as a family, but this is all still just written on the calendar......in pencil.....
Blessings!
Kim
Monday, March 29, 2004 8:10 PM CST Hello everyone! Today was quite the challenge all the way around! Michaela woke up early, probably around 6:30 and was feeling pretty good, but when it was time to leave for the clinic@8:30, she was tired and cranky again..
On the way to the clinic Michaela was getting chilly and asked me why the windows were open in the van. I didn’t know they were, but the boys must have opened them yesterday when it was warmer outside. I pulled off the road and proceeded to climb back to the back of the van so I could close the windows. Should be simple, shouldn’t cause dirty words and phrases to pass my lips, but alas, it wasn’t simple. I don’t know why it was so difficult. I can’t even honestly tell you how I was able to get the 2 of them shut, but I did. It took 10 minutes. ~~~unbelievable, but true!
Back on the road and running on time~I must add. We arrive in the clinic’s parking lot, and even though I have a handicap parking permit, we had to park in Bumfukedegypt. Have you heard of it? Ever been there? It’s quite the walk to civilization.....
Time to get the wheelchair out of the back of the van. No problem. Seen it done by others, have done it myself, should be simple. And yet....not so simple.....the darn thing wouldn’t unfold. I asked Michaela how to do it. She tells me it just opens really easy for Daddy. OF COURSE IT DOES, I call Dave. I yell at Dave. I tell him I don’t know why he has to do everything so darn right. (you see I am assuming there is a secret latch that only anal husbands know about) why couldn’t he just stick it in the van and be done with it. Now how in the world am I going to get it to open. There are no instructions and he’s about 45 miles away!!!! He tells me that there is no secret latch and he just usually bangs it on the pavement. He blames my crazy driving and says it gets stuck somehow because of all my sharp turns....I bang it on the pavement and eventually it opens.
Now, we’re late.....
We check in to clinic, have her blood drawn and Michaela falls asleep. Okay, now we’re cooking with gas. In comes Dr. Comito. She wants to examine the sleeping child. She’s a mom and knows what she’s in for. She braces herself and goes in for the exam. Noone gets hurt, but I was worried, I truly was. I like Dr.Comito.
Someone kindly arranges for Michaela to have the quiet room so she can sleep. She’s so tired and it’s a nice quiet room with a sofa and a t.v. and you don’t need to wear earphones because you just shut you door. I am so grateful to have the room. Poor Michaela is so tired and now she can get at least an hours sleep while her platelets transfuse.
She’s not tired anymore.
Our appointment for radiation is for 1:00. It’s 12:55 and we’re “almost” done with Michaela’s transfusion. Surely my fat arse can run the length of the hospital while pushing a wheelchair through the late lunch crowd. RRRiiiigggghhhhtttt.....
We’ll drive.
Up the hill to Bumfukedegypt we go. I am fat. I am out of shape. We get to the car. Michaela’s seatbelted in. I wrestle the wheelchair into the van. I get in the driver’s seat and realise. I left my purse in the quiet room.
Now we’re really late.
We are fortunate enough to have a parking space in radiation and it’s not too far to the doors. Michaela decides she can walk, so off we go. We get to the door and I realize that I forgot the sonogram order that I need when Michaela finishes her last radiation treatment. I leave Michaela in the lobby while I run back to the car for the order. Did I mention that I am overweight and out of shape?
Her last radiaton went without a hitch and I hope Maria and Ed know how much we appreciate the special effort that they put into making Michaela comfortable. We really can’t say enough! Unfortunately, Michaela by this time is extremely cranky and didn’t really appreciate how far she had come and accomplished. This happy ending was very anticlimatic for her. Maria had a beautiful gift bag for her.....again......and Michaela loved it, I know, but she just didn’t even have the energy to enjoy it like she should.
Now, onto some medical news. Michaela has had some difficulty urinating since the beginning of March. Dr. Comito has kept an eye on her renal function through blood tests. The last blood test, today, came back doubled from one week ago. That’s why Michaela had to have the sonogram of her kidneys. Fortunately, there was no blockage detected and no tumor seen. Unfortunately, we don’t know what is causing the problem. Some days it can be very agitating to Michaela. She will sit on the potty for up to 20 minutes, insisting that she has to go, yet she can’t. We’ll have to wait and see what comes of this and Dr. Comito said that she will retest her blood on Thursday. Hopefully, this will not disqualify Michaela for MIBG trial in CHOP.
All this was funny, now, but what’s not so funny is Michaela’s spirit lately. She is very agrivated and down in the dumps. She has plenty of gifts and she knows that everyone loves her, but she is simply sick of cancer. I’d like to request that our praying friends and family ask that Michaela find her spirit again. Ask, please, that even though she has many tests to endure this week, that she can find some joy, somewhere in her day....
Blessings!
Kim
Sunday, March 28, 2004 8:02 PM CST Hello everyone! Michaela, Nicholas and Daniel are now officially Christian Children! They were baptised today at the Faith United Church in Christ by Pastor Lavina with family and friends sharing in the blessings. I can’t say that everything went without a hitch, but sometimes you just have to keep the plans flexible. Thankfully, everyone that knows us is always understanding and flexible. The kids were supposed to be baptised today after Sunday services, but when Michaela woke up she was way too sick. We talked to Pastor Lavina and made arrangements for her to come to our house at 5:00 and baptise the kids even if Michaela was too sick to get dressed. I was very sad to do it that way, but grateful that we could...Anyway, by 11:00 Michaela was feeling much better and we decided to change plans yet again and do the baptisms at the church. Luckily, Michaela continued to feel good and was actually anxious to get dressed up. The boys were excited too and everyone looked so nice!! I was one proud mom! At 5:00 we arrived at the church, made our introductions and the children were baptised. Michaela Ann, Nicholas David, and Daniel David, were wonderful and behaved beautifully. The felt very special and proud, as they should.
After the ceremony, we decided to stop in at the Lucky Dog and get something to eat and visit awhile. Michaela was still feeling good and it seemed like a good idea to spend more time with everyone and I hadn’t prepared to have anyone over to the house. The Lucky Dog was busy, but not too crowded and the kids all behaved themselves and had a good time. We were there about a half an hour before Michaela started to feel badly again. She was very quiet and by the time our food arrived she was ready to go home. She was so exhausted and just wanted to go to bed. She had had enough, so I left and took her home and she went straight to bed. I am so grateful that she was able to feel “good” for the ceremony and at least some social time. She is amazing!
I wish I knew that she was going to have some more good days before we go into MIBG, but I just don’t know. It’s hard to guess because this is the first time that she’s had this chemo and the radiation will end after tomorrow. Normally by now she would be coming around from the side effects and start to have some good days, but this seemed to hit her harder and later. I guess we will just wait and see.
Tomorrow we have to be in clinic by 9:30 and have blood counts. Michaela was low enough on Friday to get platelets, but didn’t, so I am quite sure that she’ll get at least a platelet transfusion tomorrow. She got blood on Friday, so hopefully she won’t need that. As I said her last radiation is tomorrow too, so hopefully we will be done with Hershey until Thursday.
Please keep Michaela in your prayers as we travel this difficult and unclear path!
Blessings!
Kim
Saturday, March 27, 2004 8:44 PM CST Happy Saturday! We have some catching up to do, I guess. I’ve been lazy again! Sorry!
Friday when Michaela went to clinic Dr. Comito examined and talked to Michaela. From what Michaela told her, Dr. Comito felt we could skip radiation to her leg. She is now able to walk on it most of the time and uses her wheelchair mainly because she is very weak and tires easily. While she was there she had a blood transfusion and was back on her way home by early afternoon. When she got home she helped Dave clean out the van and enjoyed the sunshine for about an hour before she needed a nap.
It seems like the Michaela may be having some late hitting side effects from the chemotherapy. She isn’t able to eat without getting sick and the dreaded D-word has hit full force. Luckily, she is able to keep fluids down/in or I think we would be in deep trouble. She is also quite tired and gets up late, naps alot and goes to bed pretty early.
Today we met Sally, our next door neighbor, at Park City. It is Sally that introduced us to our church and she wanted to buy all the kids their clothes for their baptism. We were shopping for about 2 hours and had a very good time. Michaela didn’t want the trip to end, but I could tell that she was getting pretty tired, so we headed home. She is such a trooper and it’s hard for her to admit when she needs to rest. Her mind is willing, but her body is weak. It’s hard to see and I am so looking forward to her feeling better. It’s terribly sad to think that she might not. I hate the limitations that cancer has created in her life and wish I could take some of her pain away. Children should not suffer like Michaela is. She says she’s fine, but you can see that she’s not. She’s just brave and strong! After a long day she can be grumpy and short-tempered and I know she has had her limit.
After shopping with Sally, Tammy and I went shopping for a bit and brought pizza back home for supper. Tammy commented that I didn’t have Michaela’s baby picture up so I brought out the photoalbum. My heart hurts looking at my beautiful baby girl. So healthy, happy. She is my dream come true. We were so in love with her. Her every move was something to discuss. Every sound she made was beautiful to me. Our whole world revolved around our beautiful, bald, 8 pound princess. I am so glad that she was my first born. That we were able to take the time. Things weren’t so rushed. The boys were so sickly for so long and we were so busy. It’s amazing to compare the time spent just holding Michaela with the time we spent just holding Nicholas and Daniel. They missed out on so much! Obviously, we love all of our children, but things get so hectic after your first child. I am so grateful that we have the memories with Michaela that we have. I am so glad that I can look at these photos now and I am there again. Still entranced by her beauty. My perfect girl. OH this hurts to watch her deteriorate. God help us get her through this time and give us more precious moments. I’m still oh so in love with her. And I am scared to death.
Blessings!
Kim
Thursday, March 25, 2004 7:52 PM CST Hi everyone! Michaela continues to hang in there. She had 2 radiation treatments today and a transfusion of redcells. Dave has been handling everything around here again, because I have been very sick with a cough, body aches and an earache. Now, before you all give me h e double hockeysticks for dancing barefoot outside of the Knights of Columbus, let me remind you all. Colds come from germs, not from being cold. Don’t ask me to prove it, I guess I would be playing for the team of old wives tales if I were asked to give evidence one way or the other. Anyway, Dave has stepped up and taken beautiful care of me and the kids. No small deal...
Nicholas and Daniel have had very good weeks in school and are very proud to tell us that when they come home. All in all they have been very sweet and loving. Michaela is not in excruciating pain anymore. Dave carries her around most of the time or she’ll use crutches, but she isn’t suffering at all. Radiation on her skull will be finished on Monday and we will be talking to the Radiologist about hitting her leg with some radiation too. It seems they believe it would only take one “shot”. Michaela is in agreement that this should be considered. I haven’t seen any side effects from the radiation that she is currently getting except that she is more tired than normal.
Dr. Maris responded to my email with an email to Dr. Comito and I am very glad. I have a confession to make and I don’t know if it will come out correctly. Here goes...I have had concerns that everyone involved in Michaela’s care isn’t focused on the same goal. Notice the past tense in that sentence. Sometimes I am so worried about not being heard that I stop listening. I believed that on Monday, when Dr. Comito was talking about Michaela’s pain control, it was being discussed with the assumption that she wouldn’t make it to the MIBG treatment. I have always looked towards Michaela’s chemotherapy as a way to control her pain. And it is, but this time we have to look into more narcotic options. This is not instead of MIBG treatment, this is until and during MIBG treatment. In other words, we will do what we need to do to controll Michaela’s pain without another course of chemotherapy because another course of chemotherapy would make her ineligible for the MIBG treatment. I know this is very confusing. I am living it and reading what I just wrote made me dizzy.
Here’s the bottom line. The ultimate goal that everyone is focusing on getting Michaela into this MIBG clinical trial. The issue that concerned me the most would be pain arising from tumor growth as I am not sure that I have seen much response from the chemotherapy that we used last week. Regardless of the response, or lack of response, everything that can be done to control Michaela’s pain will be done. Radiation to her leg is one good place to start. An increase in her oral pain medicines is another. She could also be placed on a PCA pump. This pump would deliver a steady stream of narcotics and Michaela would have a controller with a button to push if and when that stream of medicines wasn’t holding her. Dr. Comito and Amy were very comforting to me when I talked to them today. They understood what I was saying and helped me to understand what they were saying. I left both conversations with a weight lifted off of my shoulders.
I hope that tomorrow I will be able to go to Hershey with Dave and Michaela. Dr. Comito will be on and would like to see Michaela again. That way she can ascertain whether the chemo has been of any benefit to Michaela.
Please keep praying!
Blessings!
Kim
Monday, March 22, 2004 6:19 PM CST Dr. Maris,
I am writing to inform you about Michaela's current condition. She has received 8 radiation treatments to 3 places in her skull and has responded very well. The irinotecan so far has not had much of an impact, from what I can see, on her tumors. Her legs are hurting more and I see new lumps developing on the back of her skull. On Friday I was informed that her scheduled 10 days on the irinotecan would need to be cut short and end on Tuesday. Honestly, I don't see her making it until April 13th without some type of treatment since the irinotecan didn't help as I am sure you hoped it would. After I voiced this opinion to Dr. Comito today, she suggested that we give her no more chemo until Monday and re-evaluate where we are then. Perhaps the irinotecan will have had an effect by then and we will be able to make it until April 13th. If not, she proposes to return to topotekan/cytoxan, Monday thru Friday, because that did seem to give Michaela some relief. She also told me to look into radiating Michaela's leg. From what I understand, she is hoping to get us to MIBG trial during the month of May, if that would be possible.
I apologize for communicating with you this way, I know you are extremely busy, but I feel we are at a very important turning point in Michaela's treatment. I want to make the best, most informed decision that I can. I want to be as aggressive as possible and I am not sure that that is what we are doing.
Is topotekan/cytoxan what you would recommend? Would oral VP16 be a better option? I am hoping that Michaela's doctors at Hershey would call and ask your opinion, but if they haven't yet, would you be comfortable offering one to me? I am feeling desperate and out of my depth with the situation as it is.
I will be home tomorrow until 10am and again after 4pm. I would be very grateful if you could call and speak to me. I would also welcome it if you could talk to Dr. Comito as she seems to be planning our treatment at this point. Bottom line, any way you help would be very much appreciated.
Sincerely,
Kim Mease
-- 717-393-6753
That's where we are now folks! Let's pray that some phones start ringing and some great minds begin to work together and bring this scared mom some hope again....
Blessings!
Kim
Sunday, March 21, 2004 6:39 PM CST Happy Sunday! Wow! We had a wonderful turnout at the Miracles for Michaela Dance!!! Traci and Roberta were guessing that close to 200 people came out in support of our family~especially Michaela! Dave and I arrived very close to 7pm and there already were lots of people there, but they just kept coming! It was such a special evening for us and tons of fun! A time for us to let our hair down, so to speak, and enjoy most of our friends and family all together under one roof! Aunt Jana and my dad were unable to attend because of their work schedules and Aunt Lori was crying over the toilet, heart-broken because she was so sick and couldn’t come! We missed them all, but we know how much they love us. We were missing a few special hospital friends too, but I hope they are all okay and just weren’t able to attend for reasons other than cancer!
I wanted to get around to to looking at all the wonderful baskets and auction items and I know I didn’t see all of them, but the ones I saw were gorgeous! Everyone was very pleased with what they won, I hope. It seemed so to me! Of course, I did partake of some beverages so I know I don’t remember everything. Thank you everyone for your generousity in participating in the dance and for bringing your friends and family, and for donating such beautiful raffle items! You are all wonderful and priceless friends to us!
I don’t have the exact amount of money raised, but it is close to $6000.00. I am so speechless! It’s impossible to find adequate word to express our gratitude!
We are truly blessed by a community that really cares for us and understands, as much as it is possible, what we are going through! You all have rallied around our family for so long and without fail, you have met our needs before we’ve even expressed them.
We are a part of many families’ prayer life, churches offer pray for us weekly, prayerchains accross the nation have Michaela on their lists and it was especially moving when the wonderful DJ PHATMAN, aka~Chris Halter offered up prayers for Michaela and our family yesterday. Everyone was silent and prayerful as he offered up our prayers for Michaela’s strength and peace during this horrible battle that rages on inside her sweet body. Chris lost a brother to cancer, lymphoma 5 years ago, and provided the entertainment free. He also donated 3 prints that his brother drew before he died.I thank him and you all for collectively sending that special prayer up last nite. I know God heard us all and will answer with only the best for Michaela. Whether we understand or not, we have to have faith.
The only truly sad part yesterday was the end of the night. I really didn’t want it to end! I did have some emotional moments, but for the most part I was gloriously carefree! I had such a wonderfully fun evening! It was so much fun dancing and singing and visiting! I didn’t even get to eat! I was too busy being a social butterfly! Now, it’s Sunday evening and it’s time to brace ourselves for the week to come.
On Monday and Tuesday, Michaela will get radiation and chemo. Probably on Monday her bloodcounts will be checked too. Tuesday will be the last chemo, as I found out on Thursday, because chemo must end 21 days before the MIBG treatment begins. Radiation must end 14 days before MIBG begins, so there is some more leway with that. I have to admit that I am not thrilled with her not getting the remaining 3 chemos that were originally scheduled and I intend to talk to Dr. Comito or Dr. Neely and see if there is something else we can do to “hold” Michaela until April 13th. I can see where the radiation is clearly improving the tumors on Michaela’s forehead and temples, however, I do see new lumps on the back of her head. Dave seems to think that they were there before, but I disagree. I am very scared that if we aren’t able to do something more after this chemo, that Michaela will be very sick as she enters the MIBG treatment. Scared is putting it mildly, really I am petrified. We just have to wait and see! Ya’ll know that’s not my strong suit....
Michaela is feeling pretty good. I think she had a very good time with Tiffiny last nite! She tried her best to wait up for us, but in the end fell asleep at midnite. She woke up when we came home though, but luckily the boys didn’t! Today she did get sick once, but asked for breakfast immediatly after so no biggie. Michaela rested on the couch most of the day, sleeping on and off. She just woke up as I am updating and looks very good. She isn’t sick, in pain or cranky! I always feel better when she feels good and I worry when she sleeps alot. She just asked me when does she get to go back to radiation....I said tomorrow and asked her why, did she have doublevision, and she said “no, I want to see Maria!” THANKS MARIA!!!
Until tomorrow, Blessings!
Kim
Wednesday, March 17, 2004 4:59 PM CST HI! Today was a very trying day. Nothing major went wrong, I think sometimes we just handle things better some days than others. Today was the type of day that I don’t handle things very well. Let’s start at the beginning, shall we?
Michaela woke up fairly easily, but we were running late before we even thought to look at the clock. I didn’t allow enough time when I set the alarm for everything that we needed to do. It’s my fault. So...we began the day in a mad dash toward the front door.
Now, keep in mind that b.c.~before children~ I was always early for meetings, appointments, etc. and I still haven’t accepted that I am not that same girl. I am now a middle-aged woman who can’t seem to get her sh.. together. I haven’t found the solution and I am beginning to wonder if I ever will....You’d think, that as upset as I get, I would do something to correct this problem. But nooooo. I think it’s like my never ending battle with the laundry. It’s a love/hate relationship, but I digress. We’ll hit that topic later. Anyway, we leave the house at 8:15 for an 8:30 appointment with radiation. I load the car with our supplies, my purse, her medicines and crutches, then I come back and carry Michaela to the car. I didn’t drop her and she was very relieved. We get down the block and realize that we need gas. Okay, next stop~Hess’s. Tra-la-la down the road we go...and then I hear it.....it’s coming from the backseat....from inside a purple coat......I hear “BUCKET”. After emptying her stomach of the pain pills and (this is funny) antinausea meds, Michaela announces “that was supper, I’m okay now” I am glad she’s okay, and luck would have it that we need to stop for gas anyway. Up until today, Dave has handled the disposal of the vomit while we’re on the road and I am thinking “now just what am I going to do with that?” I know the trashcan at the gaspump has a tiny little opening and my bucket won’t fit down into it. Am I to pour the vomit into the little circle and hope the wind doesn’t kick up??? Oh my....it doesn’t look like it’ll pour very well...
I pump the gas and drive around the back of the station. Surely, noone will be there right? Wrong. The Comcast Cable guy witnessed the dumping of the bucket and the fact that I wiped it out with a pain of Nicholas’ underwear that for some reason are in the van. I thought as I drove by him that I could see him writing my liscence plate number down, but I am not sure....
I called the radiation dept. to let them know that I was running late and would be there by 9:00. Well, I was close. It was 9:30 when we finally rolled in for radiation. Michaela had not gotten another pain pill, but still did terrific. Honestly, that was the best part of the day but, the shortest as well. We were out of there and had driven back to the clinic by 10:00. The clinic day was a short one too, but so very nerve wracking. The “infusion room” is the size of my livingroom. Not very big, by any standard. There is 6 large reclining chairs for the kids to receive their treatments in and about 8 normal chairs for the moms and dads to sit in while we wait. Each treatment chair has a televion/vcr combo for the kids and obviously each chair also has the IV pump. With 3 nurses, 7 parents, 6 patients, and 1 sibling, it gets abit cramped in there. We were across the room from the bathroom and Michaela has to go often. Each trip requires the patience of Job when it comes to navigating through the cords, feet, pocketbooks, and tubes. Michaela did a good job and never fell, but it was slow going for her and she was a bit frustrated. She made no less than 6 trips to the bathroom in the 2 hours we were there......fun,fun! Not!
But hey, we’re home now. Everyone is sleeping in their own beds and so far everyone is still feeling pretty well, so who am I to complain. We’ve got it good compared to some other families! Gotta remember that. I can whine and complain all I need to and type it all her, but please, never forget that at the end of the day I have a deep gratitude for just that day with my girl. Priceless.
Blessings!
Kim
P.S.
Don’t forget about the dance! I still am hoping that Dave and I will be able to go. We need a nite out, but we can’t do it unless Michaela is feeling up to par. She comes first!
Tuesday, March 16, 2004 6:56 PM CST So, how is everyone doing? We are doing alright here, but things certainly haven’t been boring! When Dave left you all yesterday because of Michaela’s cries, it was no small issue. It turned out that Michaela was suffering from intense pain in her left shin. I guess since the neuroblastoma is so VISIBLE in her skull and we are constantly guaging the changes in the bruising around her eye and the broken blood vessels in her eye, we tend to brush off the fact that she also has neuroblastoma lurking in her legs too. Up until last evening, it was the area that caused the least problems. Not anymore! It was clear this morning, when she wouldn’t bear any weight on her left leg, that we had to address this area right away. Dr. Unger examined her and decided to send us for an xray to make sure that nothing was broken~that’s how much pain she was and is in. We went and nothing is broken, but the neuroblastoma now shows up on an xray. This wasn’t the case back in December. I have to ask someone to check, but I am almost positive that it didn’t. That’s not good.
After the xray, we went to radiation therapy. By that time Michaela had had several, but by no means too many, oxicodones and radiation went extremely well. Maria, radiation therapist extraordinair, had continued to work on Michaela’s mask yesterday after we left and today it was much more comfortable. I asked today if Maria would be able to see Michaela through to the end of her scheduled treatments and she will! She normally doesn’t work on that “machine” but has made it her mission to make Michaela (and mom and dad) as comfortable as possible! In case you’re counting out there, that’s another blessing for our family! Not just Maria, but especially Maria~does that make sense??
Back to the clinic, our travels continued. Michaela received dose 2 of irrenotecan. I am very happy to report that so far Michaela has had no problems with the dreaded d-word. Her belly is upset though and without warning she has had to vomit 4 times today. Immediately after, she begins to eat again. It’s strange and the nurses are amazed at the way she handles it. She’ll yell “bucket”, receives the bucket, throws up in the bucket, identifies what she sees in the bucket ~ you know...celery, chicken, goldfish cracker~ passes the bucket to someone to clean out, and continues to eat as though nothing happened. That’s our girl!!
After the xray, we talked to Dr. Unger and he prescribed crutches and lessons for Michaela. He doesn’t want her to bear weight on her leg and has doubled her pain medicine. Michaela wasn’t thrilled about getting crutches or learning how to use them. She said that she was scared, but I honestly think that she is just sick of the changes that are happening to her body and are out of her control She wants to be getting better and who can blame her really? It seems like we take one step forward and two steps back sometimes. It’s very frustrating to us all. I am happy though that I can say that her pain is managed fairly well and I am very grateful that her needs are being met with little resistance from the doctors or insurance people. I know that isn’t always the case.
Tomorrow should be an easier day and Dave has Michaela’s permission to return to work. We must be at radiation for her treatment by 8:30 and then we will head to the clinic for the chemo. It would be wonderful if we could be home by 1 or even 2, but I am not going to risk the disappointment brought on by making such a goal. As of now though, we won’t have to see a doctor, have blood counts, have an xray or go to physical therapy.
Wow, we were busy today.....
Blessings!
Kim
Monday, March 15, 2004 8:57 PM CST Hello to everyone from the Mease household,
Today Michaela completed her 2nd radiation treatment and her 1st chemo treatment. I will say that radiation went a little better today than on Friday, but I’m not sure exactly how much. Kayla was crying and upset about wearing “The Mask” for radiation today before she was even dressed. We got to clinic,not too far behind schedual, and got her port accessed. From there we went down to radiation for treatment. We didn’t think radiation would take as long as Friday, but, they wanted to take some x-rays they weren’t able to get on Friday. Kayla did cry and want the mask off, but she was alot better today, hopefully tomorrow will be better yet.
After radiation we went back to clinic for chemo. Kayla handled the new formula without any problems. We were advised to stop on the way home and get some Ammodium. The one side effect from this chemo is diarehea, oh boy! They watched for any immediate onset of it for an hour after the chemo while Kayla got platelets. So far, we have seen no signs of the onslaught. I have to cut this short now, Kayla’s crying in bed that her leg hurts, it’s time for some pain meds. And a little cuddle time till she falls asleep..... or I do, whichever comes first................ Later.
Friday, March 12, 2004 4:58 PM CST Here we go folks! The long awaited update! We have had a pretty good week...until today. Unfortunatley, that’s what I will be typing about today first. Maybe I’ll get to the good, fun and happy stuff, but I can’t guarantee it.
It has been decided that Michaela would benefit from radiation given to her skull area, mainly around her eyes. She had a special mask made so she won’t have her face marked as a guide for the radiation. It was quite truamatic for Michaela, to say the least. They take a sheet of plastic mesh, that measures about 20’’X20’’, and “cook” it in hot water until it is pliable. Then it is placed over her face while she is laying on the table. It is screwed into the table so that she can’t move and it is formed and shaped to her face. It was very frightening to us all really! She was terrified and it really looked barbaric. It is barbaric, but necessary. The wonderful nurse doing the procedure is one of Michaela’s most favorites and I KNOW she would be nothing less than gentle to Michaela without it being absolutely necessary. Poor Michaela just wanted to cry and scream and wasn’t even allowed to do that because it would distort the mask!!! How do you tell a terrified child that they can’t cry, move, and no....I can’t take the mask off you yet??? It is hell!
Michaela was very forgiving when she was allowed up. She knows that noone wants to put her through these things, and she bounces back pretty quickly, but it is so very hard to watch her pleading for help and not being able to give it. After the mask was fitted we had to get a Ctscan for planning the radiation. Michaela, again, had to wear the mask. Thankfully, we talked through this with alot less trauma. It was still very unpleasant for her, but she seemed to do better. The CT techs said that they had a grown man earlier in the day that didn’t do as well as Michaela. That seemed to help her feel validated too. Sometimes I feel like Michaela thinks that I don’t believe her when she is crying and asking for help. God knows I do, and I tell her how proud I am of her strength, but when you can’t change what is happening to your child, even helping the nurses to complete the horrible task, how can she do anything but question my loyalty to her?
Cut to this morning~
Michaela woke at 6:30 and promptly threw up. She said she was feeling feverish and guess what? She was feverish. Normally, and if neutropenic, we would have called the hospital right away, but she has some whiteblood cells and the clinic was opening in 1 hour so........
We fall back to sleep until 9. She still has a fever and we are told to come on in! Well heck yeah, it’s Friday! Everyone knows how much we love the hospital over the weekend!!! NOT!!!! Home comes Dave and off we go~bags packed of course~ Michaela got sick twice on the way, but her fever came down and she felt much better by the time Dr. Powell examined her. He was satisfied that she would do well with a long acting antibiotic dose, some fluids and platelets. Then she can go back home....But wait....radiation worked very hard to have her plan set up and they are ready to go TODAY. You can torture her a bit before you go home. No really, you can even have the antibiotics running while they do it. Go ahead, start the three mile trek from one end of the hospital to the other. Now don’t let your nerves get the best of you because we will give you an IV pump that begins to beep as soon as you hit the mile and a half mark..
It’s all good. Let the trip begin.
You all have noted my sarcasm, right?
Radiation is terrible!! Michaela is having the hardest time! I can talk to her through an intecom and I can see her, but it doesn’t help much. The mask HURTS her!!! Oh my goodness!!! The tumor between her eyebrows seems to have grown overnite!!! My poor baby has the mask on for maybe 20 minutes and the marks it left were there for an hour!
I am sorry everyone, but I have to say it. Remember that I know that radiation is going to be good for her. I know nobody wants to make her cry. I know distance between the clinic and radiation was not decided with Michaela’s fat mom in mind. I never claimed that they close the cafe at 1:45 in the afternoon because Michaela will be hungry at 2:00.
I am grateful for the dedication of all the staff at Hershey. I will never payback the kindnesses of friends, family and strangers. I am so grateful for prayers and I know God is hearing us.....
But I have to say this......
CANCER SUCKS!!!
Saturday, March 6, 2004 9:56 AM CST Yippee Skippee!!!!! Michaela Ann will be discharged today!!! Her counts are rising and although prepaired to plead their case, Dr. Neely decided this all on his own and needed no prompting or bribing!!! I don’t know why I am so excited, but I really am! I know Michaela likes being in the hospital and always has fun with her nurses and doctors, but as time goes on with this disease it is harder on us as a family to be seperated! It seems so often, that once they get ya in there, they don’t want to let you go! I know this is all in the best interest of Michaela, but when she’s not sick, she belongs home!
The boys are still going to Aunt Lori and Aunt Kath’s house today and staying overnite. They are all packed and ready to go! They have asked since Wednesday, how much longer, and now that it’s almost time, they are more than a little excited! And guess what! So am I!!! I hope they can manage to behave themselves so they get invited again! Michaela has handled it very well and wasn’t upset at all that she has to stay home with Mom and Dad. I think she likes the time that she has us all to herself and I know we love it too!
Until next time~ Keep praying and please know that we appreciate you all!
Blessings!
Michaela’s thrilled mom!
Thursday, March 4, 2004 10:18 AM CST This will be a short update today, but I want to let everyone know that Michaela is being admitted to the hospital for a fever. She woke up fine, and is still feeling well, and Dave took her for her usual appointment at the clinic for bloodcounts. Somewhere between home and the clinic, she got a fever of 101.
Dave will be coming home so he can go to work tomorrow and I will be staying with Michaela. She doesn't have a room yet and I don't know if I will have access to a computer to keep everyone up to date. It seems the laptops at the hospital have grown legs and left the hospital without permission. That's another subject all together.....
Keep Kay in your prayers and Know we appreciate it!
Blessings!
Kim
Tuesday, March 2, 2004 3:59 PM CST Hi! I hope everyone is having a good week so far! We are doing much better than last week at this time, that’s for sure! Let’s get you all caught up!
On Saturday we spent a quiet day around the house for the most part. Daddy and the kids did take advantage of the mild weather and spent sometime outside cleaning out the van. It almost got done, but while they were doing that I went grocery shopping and needed help unloading and putting away all the goodies! It had been forever since I had been shopping and I filled the van from Amelia’s, Dollar Store, and Weis Markets. It felt good to have our food and cleaning supplies replenished! It honestly took us all to unload the van and put it away!
On Sunday the kids went with Brad and Traci to Penn Manor High School where they attended a reading program. The theme of the day must’ve been Dr. Seuss because they all came home with a Cat in the Hat hat, and pencil and tattoos! They all had a wonderful time and for the most part the boys behaved themselves. Daniel got a bit angry when Sissy was offered a ride in a real firetruck and he wasn’t. I am not clear who he addressed it to, but he yelled out “you s..k” as she walked away with the fireman.....Needless to say, I wasn’t pleased and he knew it when he got home. Hopefully, he learned his lesson.....
While they were away, Dave made homemade meatballs and spaghetti sauce. It was delicious and we enjoyed dinner with Tammy, Alyssa, and Em. After dinner we had icecream and watched Spy Kids 3D. We haven’t had much opportunity to spend time with Tammy and her girls and it was wonderful to be together again!
On Monday Michaela and I headed to the clinic for her bloodcounts and without waiting for the bloodtest results they went ahead to order platelets. It was clear that she needed them and I am glad that we got a head start on getting them in her. When the counts came back she was at a 6. 20 is normally where they transfuse and she was a 22 on Friday. I talked to Dr. Comito about lowering the standard for her to get platelets and hopefully she will. It seems she does best somewhere around 40. She drops so fast and when her platelets are low, internal bleeding becomes a concern. Her red count was still at 8.1. Normally they transfuse at 8 or lower, but they decided to go ahead and give them to her in the hopes that we could stay home until our next appointment on Thursday. Her white count is .4, basically leaving her defenseless against infection. We will be doing very little outside the house until they rebound.
It was a long day in clinic and we were both very tired when we arrived home.
Today was another good day for Michaela! Mrs. D came to work with her on schoolwork and was pleased with what they were able to accomplish. Mrs. Adair, Michaela’s teacher at Hambright, brought Michaela’s workbooks home that they usually worked in. This way she and Mrs. Adair are following the same curriculum. Mrs. Adair is having her baby girl soon and with Michaela’s health issues, it hasn’t been easy to get much done in the way of school Mrs. Adair has been more than wonderful and we will miss her when she is off with her little sweetie. Through this all, Hambright and Michaela’s wonderful teachers, have been so accommodating. Hopefully, we will find a way to get Michaela back to school or on a homebound schedule soon.
Thankfully, Michaela is pain-free and feeling good. Her eyes are still bruised, but she is seeing normally. Eating isn’t an issue right now either. She is able to but doesn’t seem to have the best appetite right now. We’ll work on that!
I have talked to the Pastor at Faith United Church in Christ and she is very happy to help us get all the kids baptized. She will come over to visit and talk to Michaela and the boys about what that means next week and if all goes well, we will have them baptized very shortly. It will be a private, quiet sacriment because we don’t know how Michaela will be feeling or how the boys will be behaving. Aunt Lori and Aunt Kath will stand for them as God Parents and are thrilled. They have taught the kids more about Jesus and God than I have and they boys can’t drive by a church without telling me that Jesus lives there. Faith UCC is where we will attend church when we can attend again. They have been very kind to us and it is a very small, caring congregation in which we feel welcome and comfortable. I am so glad to say this is going to be done for my kids. It has been a nagging in my heart and one failure that I was most disappointed in myself over.
Keep praying, please!
Kim
Friday, February 27, 2004 5:35 PM CST Well, we were hoping for good news and I believe we got it today at CHOP!!! We began our day on time, which is very unusual, and had the boys to school before 7am. On the trip to Phili we each had plenty of time to think, hope and pray. We didn’t get lost and the traffic wasn’t too bad. We got a call from Aunt Lori at about 7:45am and they had just pulled off the side of the road for Michaela to get sick. Nausea hit her without much warning and she was very upset to have had an accident in the car. Aunt Kath and Aunt Lori convinced her that it was not a big deal and they gave me a call to let me know what had happened and to let Michaela know that everything was fine. They finished the trip and landed at the clinic right on time. Michaela’s clothes got washed while she slept from the antinausea medicine. She received her chemo and slept thru the day until it was time to get her blood transfusion, and she only got sick one more time. She wasn’t home until 5:00 and is a bit cranky and very tired, so we’ll do lots of cuddling tonight after supper.
Dr. Maris was a very nice doctor and he took plenty of time to talk to us and explain his recommendation to us. He answered our questions with patience and understandable language. At this time, he is offering us 2 options. Both are MIBG infusions. One is a single infusion with a 5-day stay in the hospital and it is possible that we would need to receive her stem cells to “rescue” her. The 2nd option is a double infusion of MIBG. There would be a 5-day hospitalization for each infusion and 2 weeks between them. She would definitely receive her stem cells back because this would be a much larger dose of MIBG.
The single MIBG option, although a clinical trial, has been used approximately 200 times in the nation. The following is not exact, but aproximate..25% of kids have no response, 25% have minimal response, 25% have good response, and 25% have complete response. It is most effective on older children, over 5 years old, with bone disease. THAT’S US!!! The side effects are low counts about 6 weeks after treatment. That would be where it would be necessary to give back her stem cells. She would not have nausea, pain, or any more hair loss. During the 6 weeks before her counts drop she could very well feel wonderful and have great quality of life.
The double MIBG option is a clinical trial too, but it is a phase one. Phase one trials are used to determine safe dosing and toxicity of the drug. There usually isn’t much information and it is given usually to children with little hope with of getting a good response with conventional treatment or they have exhausted the phase two trials. In the case of MIBG, it may be more practical for us to go straight to the double MIBG, because we have stem cells in reserve and are dealing with a rapid acting neuroblastoma in Michaela. All these details need to be decided by Monday, if possible. The side effects are still minimal and basically are lowered counts....
Bottom line, Michaela is feeling better, although tired and Dave and I have a lot of thinking and talking to do. Thank you all for seeing us through this very trying time and giving us the love and support to stay hopeful.
Blessings!!
Kim
Thursday, February 26, 2004 9:42 PM CST Hello Everyone,
Michaela had a good day at clinic today for her chemo treatment. She is more like her old self personality wise. I think it is fair to say that she is rebounding again!!!! Thank you God!! She still looks quite sick because her eyes are still black and blue, her eyes aren’t tracking well and the swelling in her face actually makes her eyesockets look crooked. Unfortunately, she is still swollen inside her mouth and it is difficult for her to eat some things. All in all, she looks far worse than she is feeling and I am grateful for that!
Hershey is opening sattelite offices in new locations and Michaela and I were working on some paintings for Child Life to frame and hang there. She really liked the idea of making these so that maybe children would feel less afraid at the doctor! What a sweetie we have!!!
Tonite she is staying overnite with Aunt Lori and Aunt Kath and from what I hear, still doing wonderful! She’s being silly and having lots of fun! They had her favorite supper tonite....Ribs and Filet Mignot! Aunt Lori cut everything up tiny for her and she ate a good bit! Tomorrow, while we are in Philly, she will have Aunt Kath and Aunt Lori, catering to her every need!! Lucky Girl!
We have decided, as of now anyway, that Michaela will not be attending “Hat Day” at Hambright. It was a very tough decision and we could very well change our mind if Michaela finishes chemo in good time and is feeling strong. It’s difficult to know that chemo will even be finished in time. I know Michaela would love to see her friends and Hambright has the absolute best kids, teachers, secretaries, bus drivers and ...well....every one there is just great! We have to make a point to get her back to visit and spend time with her friends as soon as possible!
I hope we’ll have good news to report tomorrow after seeing Dr. Maris! It would feel so good to have some encouraging news!
Blessings!
Kim
Wednesday, February 25, 2004 8:03 PM CST Today’s clinic visit for chemo was much better than yesterday’s. Michaela had gotten up before she needed to and had a bowl of cereal and then she fell back to sleep. Unfortunately, she wasn’t ready when I told her that it was time to get dressed and get moving to Hershey. At least there were no tears today....no vomiting either, that’s always a good thing! She still looks very bad to me, but she behaved much more like the Michaela that we all know and love. She was pain free until we were at the clinic for about an hour. By the time she let me know she was hurting, she was in tears. Dr. Freiberg examined her and we discussed the best way to deal with her pain. He wasn’t comfortable doing too much for us because he didn’t want to step on anyone’s toes, but he did prescribe oxicoton and oxicodone for Michaela. She takes the one every 12 hours regardless of her pain and the other she uses for “break through pain” and it can be taken as much as 1 hour apart. She is starting on a minimal dose and it will be adjusted as it needs to be. My hope is that as the chemo works, we will need less pain medicine.
The plans to go to CHOP are coming together for Friday and Michaela will show Aunt Lori and Aunt Kath the ropes at Hershey where she will receive the last of the chemos in this round. She will probably stay overnite Thursday with them and leave for chemo right from their house. She seemed to like that idea.
Michaela is having a very special thing done in her honor at Hambright Elementary. They are celebrating “kindness week” by having a Hat Day as a way to show Michaela their support. Michaela is invited to attend school anytime she wants, but they are really hoping that she will be able to visit on this day especially. My concern is that Michaela is looking very different than the Michaela most of her friends will remember. I know these are kind, loving, and truly outstanding kids, but I am afraid that her appearance will upset them. I don’t think in my worst nightmare that they would ever make fun of her or make her feel uncomfortable, but I know how upsetting it can be for kids to see someone they care for this much looking so .....sore????.....is that the word? Her eyes look like they hurt, they really do. I am hoping to talk to her wonderful teacher and see how she feels about my concerns. Who knows, maybe I am blowing this out of proportion....
I am a drama queen, ya know....hehe
Thank you for all the supportive emails and journal entries! We are taking them all in and you are all truly lifting our spirits just by saying “hi” even. It still is difficult to find time to talk to many of the family and friends that we know are just dying to tell us how much they care! We are so lucky to have this much support and with or without speaking to you, we know you are in our corner and we love you all for it. I am hopeful that we will be able to beat this da.. (end this word however you care to) neuroblastoma back and have more time with our beautiful girl, but right now things are very emotional, overwhelming and draining to our spirit. What little energy we have at the end of the day must be dedicated to all Michaela, Nicholas, and Daniel.
Until tomorrow,
Blessings!
Kim
Tuesday, February 24, 2004 7:57 PM CST Today’s clinic visit was by far the worst ever for Michaela. Her day didn’t begin well and went down hill from there. I guess we’ve been through worse, but it’s hard to put that into perspective at times. Michaela’s tummy was very upset when she reluctantly woke up this morning. She ended up getting sick before we got into the van. I believe the main reason for this upset was the fact that she was probably swallowing a fair amount of blood from her gums overnite. She received platelets today, so that shouldn’t be an issue again for a few days. She slept the entire trip to Hershey and was quite cranky about having to even wake up enough to slipinto the wheelchair for the walk into the clinic. She curled herself up into a ball and wouldn’t talk to anyone. Her double vision wouldn’t ease up, she was nauseas and weak. She had the nurses concerned enough that they didn’t want to begin chemo until she was seen by a doctor. Miserable doesn’t begin to describe how she felt, and with good reason, behaved. While waiting for Dr. Unger, I was praying that they would just give her the fluids she needed, the anti-nausea meds, chemo and platelets as planned. I honestly believe that she was in dire need of the chemo and we needed to continue treatment today as planned. Fortunatly, Dr. Unger agreed! While they began her hydration, Dr. Unger and I stepped out of the room and had a meeting of the minds so to speak. He isn’t generally the doc that takes care of Michaela and although familiar with her, hasn’t seen her this sick ever before. He has also never seen her rebound from this low either. Please keep this in mind while reading some of the details of our conversation. Dr. Unger urged Dave and I to place Michaela into Hospice care. He felt our time was likey to be short before we would need their services. He reasonably, from his point of view, felt that she was not going to be with us much longer. No one can predict these things, much less a doc that doesn’t really know our Michaela. I didn’t argue with him because he does know medicine and has treated other kiddos with neuroblastoma to this degree. His end of the conversation, while difficult to hear and not exactly what I am expecting to be a good prediction, was given in kindness. He doesn’t want us to be facing the need for hospice at an inopportune time, like 4pm on a Friday. He does recommend that we follow through with our visit to Phily with Dr. Maris and continue treatment in Hershey until we decide otherwise. We did decide that Michaela will not be making the trip to Phily with us. She will stay and receive her chemo and Aunt Lori and Aunt Kath will take care of her until we get home. Dave and I will have an opportunity to openly discuss details with the doctor and really be honest with each other during the ride home. If we chose to attempt a clinical trial in Phily, then Michaela will be seen by the doctor, of course. Until then, we have no decisions made. Hospice will wait. I believe I am not in denial. I don’t think Michaela is done fighting. I feel Dave and I will be able to see when treatment is in vain. I also think Michaela will let us know when she is done. I have faith that we will be able to make the best decisions when the time comes, if it does. In all honesty, I wouldn’t want Michaela to have too many days like she had today. She wasn’t the Michaela that we all know and love. She deserves better and we will do all we can to help her feel better for as long as we can!
I will talk more about our THON experience as soon as Michaela’s medical issues require less discussion.
I have to apologise to any and all friends that we aren’t calling or emailing back. We are so emotional and stressed right now that we barely have enough energy to keep the journal up to date. We love you all and appreciate the kindness that you continue to show us every single day! Right now, the little energy we have must be spent on the kids and that leaves very little left for anything else. At the end of the day, there is so little time for the things that must get done and virtually none for what we want to do. We love and appreciate you all and hopefully when Michaela is improved and finished with chemo on Friday, we’ll be back to normal and returning calls!
Until then, thank you for your prayers! We are counting on them!
Kim
Monday, February 23, 2004 10:02 PM CST Well, it’s been an emotional, exhausting, heart-warming and overwhelming three days for us. THON was amazing!!!! I can’t begin to describe the realm of emotions that were visited this weekend. The pure energy and love that was displayed by the hundreds of dancers was indescribable! Our weekend began on the road by about 1:30 on Friday. We were in the lovely Nittany Lion Inn by about 4:30. We were greeted by bellhops, THON dancers and many of our second family! Our room was beautiful and out of the way. After we unloaded our bags and regrouped we headed to the registration site where we were greeted, given our back page with our “family t-shirts”, our passes, and other important supplies~ waterguns, THON pins, gold ribbons, and bubbles, of course. We met so many wonderful friends and most of their names are lost on me. One young man, named Anthony, took us under his wing and really did his best to make us feel at home and not so lost! He is a member of the organization that adopted our family. They are the Lion Ambassadors. There are 130 members of that group and a finer bunch of people we never met! There enthusiasm for meeting Michaela should have been bottled! They all knew our names and were so proud to be our family! Anthony then escorted us to the dance. Oh My Goodness!!! What a scene to take in!!! We arrived before the beginning of the marathon and all the dancers were sitting down for the last time for the next 48 hours. There was a video showing on stage, on 2 bigscreeens, of past thons and it was very, very moving. Of course, I was crying and Michaela and Nicholas were already sitting in the middle of the gym with the dancers. My Dad was keeping an eye on me and Dave was holding Daniel. We stayed and took it all in and visited with our friends from Hershey for a few hours before heading back to the room by around 10.
There is much more to say about the glorious THON weekend, but I have a bit of medical news to get into now. I have to get it off my chest and get you all praying in the right direction, if you know what I mean. So I will ask you to please Google Search THON, get some idea of the things that I will talk about tomorrow, and I will move on to the medical issues that we are now facing with Michaela. Dave will be adding pictures of Michaela tonite and I must warn you now that she doesn’t always look good. Please understand that when the pictures were taken, she felt better than she looked. I promise.
We decided to extend our planned weekend and stay at the inn for another nite. We were all exhausted and when THON ended, Michaela was totally exhausted. It seems to me that the energy of the dancers kept Michaela afloat. They would tell you, I’m sure that the FOUR DIAMOND children kept them afloat, but when the dance was over, Michaela immediately asked for her wheelchair and slept most of the way back to the room.
This morning, Monday, Michaela woke up with double vision. Both of her eyes are black and blue. The right one is black below her eye and the left if black on the lid. The lumps are growing and new ones are “popping” out. The double vision is very upsetting to her, but fortunately, as she wakes up and moves about, her vision recovers. Another issue she brought to our attention was her bleeding gums. When she woke up, she had blood on her sheets. This is a sure sign of a low platelet count. As long as the bleeding is stopped, it’s not an emergency, just a prediction of a transfusion. Don’t like it, but what can you do? In true Michaela form, she was unphased by this and helped us get packed up and on the road. The ride home began normal enough and Michaela and the boys dosed off and on. When Michaela awoke the first time during the tiip she was upset to find that the double vision had returned. I coaxed her into sleeping some more and we continued down the road. The next time she woke, she was crying. Now she was in pain. The most important goal Dave, the docs, nurses and I have is NO PAIN. I called Amy in Hershey, explained what was going on and she told us to come right in. Fortunatly,we were near Harrisburg and just changed our course a bit. By the time we got to clinic, the pain had subsided, but Michaela clearly wasn’t herself iting to see Dr. Cmito when the pain came back. Michaela was given pain medicine and napped a bit longer on my lap before Dr. Comito came to examine her. The Pain medicine worked, but Kay explained that on a scale of 1 to 10, her pain was at a 9. While Dr. Comito examined Michaela she was able to show me the tumor in her mouth, on her gum at theleft, lower molar. She also indicated that she could see it in her right ear.
While Janease entertained Michaela, Dr. Comito, Amy and I had a talk. Dr. Comito and the other docs had discussed changing Michaela’s chemo. She felt there was clear disease progression while doing our current chemo and they wanted to offer us the option of doing an oral chemo. This would be a less aggressive treatment, hopefully keeping Michaela comfortable, but changing the goal of treatment from cure to comfort. Hospice would be called and we would wrap our minds around her loss. I am not there yet, Dave isn’t there yet, and most importantly, Michaela isn’t there yet. By the way, she was there for our entire conversation. Janease was playing with her, but Michaela must’ve heard much of the talk. She is not being kept in the dark, by any means. With an open conversation and some very good give and take, we all agreed that we would do one more round of our current chemos, beginning tomorrow. Arrangements would be made for us to travel to Philadelphia and have a planning session with Dr. Maris about Michaela’s treatment options on Friday. Friday would be Michaela’s 4th day of chemo and we don’t know how that will work out, but we may need to, somehow, get that dose on Saturday. Please understand that I know, as does Dave, that we have to be very careful to be making decisions based on Michaela’s best interest and not our fear of losing her. I asked Dr. Comito if she felt we were doing too much. If she truly felt further fighting would be pointless and she cautiously said not yet. She did inform us that she recently got more news that we weren’t expecting. During Michaela’s last bonemarrow biopsy, we gave permission to the hospital to take an extra sample of marrow and use it in the developement of future treatments. That sample, although it didn’t have neuroblastoma, was able to grow neuroblastoma. That means that even though her tests have been cancer free, neuroblastoma is still present and working against us in her marrow. Michaela has a very slim chance of survival. We are only buying time. We just want to be sure to get as much, pain-free, quality time as we can.
Your prayers are direly needed.
Kim
Friday, February 20, 2004 9:04 AM CST THON, HERE WE COME!!!!! We will be leaving for THON in 3 hours! Michaela had an appointment yesterday at clinic and her counts were good, so there ya have it. PaPa will be leading the way to Penn State, enjoying the evening with us, staying overnite with us and heading for home Saturday around noon. We have been “adopted” by The Lion Ambassadors and will get to meet them. They are kinda sorta like cheerleaders from what I understand. We received a card that they all signed and a package in the mail from them. Michaela will also meet her “PENN pal”, Wendy. We received our first letter from her and Michaela did write back, with Mrs. D’s help, but I doubt she will have received it already. I have to email her today and set up a time to meet up! She sounds like a wonderful lady and she is very excited to meet Miss Michaela! I am so very much looking forward to this weekend! Lots of our friends will be there like, Heather, Hilary, Dr. Comito, Laura, Guy, Amanda, Lisa, Chad, Tucker, and Marion!!!! What a crew!!! I can’t wait to see who’s going that I don’t even know yet!!! We will be staying overnite both nites at THE NITTANY INN and from what I understand this isn’t your typical Howard Johnsons. Apparently, this is where all the muckymucks stay when they visit PSU!!! Are they in for a treat with our crew!? We are taking 2 disposable cameras and the digital, so we should have wonderful new pictures for the webpage and memories to hold close to our heart for the rest of our lives. When things get tough, these are the times that I try to think about.
I was at WalMart yesterday with Michaela. We had to stock up on snacks and stuff for the trip, of course. We decided to have a soda and sit in the radio café for a while and chat. It hit me like a ton of bricks then and there, that Michaela is racing neck in neck with this neuroblastoma. You see, while she says she feels good, you can literally watch the tumors grow in her skull. You honestly can tell that she is due for chemo, which is scheduled for Tuesday. The tumor between her eyebrows is so large and “ugly” to me! Don’t get me wrong, Michaela is beautiful, the cancer is ugly. Her eye is beginning to get darker as well. I hid it well, and she never knew, but I couldn’t hold back the tears. I hate this disease! I hate that I can see it! There is no way around the constant reminders that we could lose her. All the more reason that THON is so important! Neuroblastoma has opened us up to a whole new world and some of this world can be thought of as nothing less cruel…….and then, there’s THON……
Thank God, and I do.
Kim
Saturday, February 14, 2004 8:28 AM CST Happy Valentine’s Day everyone!!!
Happy Birthday Grandma Mease!!!
Michaela’s wheelchair arrived yesterday morning and Michaela was very pleased to see that it is a small chair that she can roll herself! We went to the grocery store to pick up some Valentine treats to send to school with her Valentine cards and Michaela maneuvered it all by herself! We dropped the cards and treats off in the school office and she was invited up to her class to deliver them herself, but she declined. I am not sure why, but she just said no thank you to the invite and off we went!
Our next stop was Kmart. Mommy needed to pick up some Valentine Cards too and Michaela took this as another opportunity to use her wheel chair and practice. She did very well, but her arms did get a bit tired so I ended up pushing her and pulling my cart. It was a deja-vu of the days when I would take Nick and Dan to the grocery store in their double stoller when they were babies and pulled the cart behind.
Michaela was feeling pretty darn good and I felt like people were looking at her jumping out of the van and skipping around the back to get out the wheelchair. She really tires quickly and isn’t able to walk far, but it’s unusual to see a child skip into her wheel chair. It didn’t seem to phase anyone, but I was a bit uncomfortable. Oh Well! What’s one more oximoron in our life?
Michaela went to stay overnite with Aunt Jana and Michelle last night and had a wonderful time! When I called to say my goodnites, Michaela and Michelle were playing Connect Four and giggling up a storm! Michaela and Michelle are very close. They don’t get to be together as much as any of us would like, but when they do get together it’s like they have never been apart!
Unfortunately, Aunt Jana was awoken this morning at 2:30 to Michaela crying and quite upset by an earache. Aunt Jana gave us a call and I talked to Michaela. She decided to try tylenol and attempt to stay the rest of the nite. Daddy and I went back to sleep too and called to check this morning. Michaela fell back to sleep 15 minutes after the tylenol and was still asleep as of 9:00.
Update. Michaela is still fever free and anxiously awaiting the pancakes that Aunt Jana is making.
Big sigh of relief here!!!
Thanks for checking in!
Please keep praying!!
Sign the guestbook if you have time!!!
Kim
Thursday, February 12, 2004 6:06 PM CST I can’t believe that it has been almost a week since my last update! Sorry about that everyone, but rest easy, Michaela is still doing well. On Monday we spent the day at the clinic getting red blood cells and platelets. Her counts were extremely low and she was definitely in need of a boost! We also had her hearing tested on Monday and I am happy to say that she doesn’t need hearing aids yet. Her hearing problems could be due to the cancer, because Dr. Comito saw something wrong with her ear before chemo last week, and this week it’s gone….I hate to think of this tumor affecting yet another part of her life, but Thank God, it did shrink with the chemo! She was at the clinic again today for counts and she is still holding her own. We didn’t need any transfusions, and her white count is on the rise. She is still essentially defensless and will need to continue her GCSF shots. We have another clinic appointment on Monday and hopefully, by then, we will be able to stop the shots!!! Keep Michaela’s name on your lips when you say your prayers, because this is a critical time and we need to keep her well and out of the hospital.
On Sunday, there is a basket bingo in Columbia to benefit the Leukemia and Lyphoma Society. I can put any local friends in contact with the ticket holders and you can get further information if you email me privately. Dave and I will be there, without kids!!!!
Next weekend is THON weekend!!! We are so excited! When you see the college kids in our area on the corner with coffeecans with signs that say “HELP KIDS WITH CANCER” , please consider donating! These kids are fantastic and help the hospital in providing meal tickets for parents, child life services, social workers and music therapists. Their biggest fundraiser is THON. It is a 48 hour dance-a-thon all for the kids at the children’s hospital. All cancer kids currently in treatment or not, are invited to attend and this is our year to go! If we are able to keep Michaela well and fever free, we will be in Happy Valley from Friday evening until Sunday Evening. We have a room for the entire family at The Nittany Lion Inn just waiting for us. This weekend is all about the kids! So much fun to be had. The information packet that we received explained that often first time families are afraid that their kids will get lost. They advise us not to worry, but to expect it, because the college kids love these brave cancer warriors and will just scoop them up for a dance, or a cuddle or a face painting session!
It is a very safe environment because you need a pass to get in the gym and the security is tight for the kids!! Pa-Pa is hoping to be able to come up for a day with us too! We’re hoping he can get a day off from the club!
Thanks for checking on us and please, please, keep praying!
Kim
Friday, February 6, 2004 11:17 AM CST Hello friends and family! I have to begin this update with an apology. As soon as I read what I had written in my last update, I felt terrible. This forum has become a priceless sounding board for me, but I feel like I went to far with that one. Some days I just sit at the keyboard and the information just pours out and into the update. That happened on Monday too, but it was more information about my fears and struggles than about the facts and I apologize. The problem is that I am in a better place now, and you all are probably stuck where I left you with my fears. I am sorry. I will do better today and hopefully this will leave you in a place of hope. That’s where I am now.
Michaela finished her last day of chemo yesterday. She did very well throughout and showed no signs of side effects. The hardest part was getting the two of us out the door and up to Hershey on time! Neither one of us are morning people you see. As a matter of a fact, I am still in my jammies as I write this entry......not a pretty picture! I sure hope no one stops by for a surprise visit! Michaela is dressed already and looking great, by the way. She beat me today.
Anyway, we were able to see Dr. Neely yesterday and as he examined Michaela, he didn’t feel that the swollen gum around her molar was necessarily cancer. He said not to worry. So....I won’t worry. He also wasn’t able to see the lump on the back of her head and felt that if it were cancer, it would still be there. The chemo couldn’t have taken it away already. So far~so good. Michaela gained 3 pounds since we were inpatient for the last infection. Good again!
I also talked to Amy and we discussed getting a handicapped dohicky to hang from our rearview mirror. This would allow us to park in the handicapped spots and Michaela wouldn’t tire out walking long distances to get to whereever we need to be. Dr. Neely approved and we will be having the application notorized and mailed out tomorrow. While talking to Amy about how Michaela gets tired out, she suggested getting a wheelchair for Michaela. I had thought a few times that it might be a good idea, but I wasn’t ready to discuss it with anyone. It seemed like I was caving in to the cancer. Not so....it will be a blessing to have when Michaela has the mind to go out, but her strength isn’t there. It’s time to take advantage of all she wants to do and to help her accomplish as much as she wants to do. She often won’t need one, but there are times when it would be a benefit. I explained to Michaela that it was coming and she didn’t seem discouraged at all. She has such a good attitude! It was approved by our insurance company and the homehealthcare company should be in contact and delivering that soon. Park City, Ocean City, Baltimore....here we come!!!
I also talked to Amy about Michaela’s hearing. It seems to me to be getting worse and with the relapse, it was put on the back burner. Time to bring it front again. We will head back to Herhsey on Monday to see the Audiologist for another test and I expect hearingaids will be prescribed. Michaela isn’t too thrill about having to wear them, but I hope that once she hears what she’s been missing, she’ll be accepting of them.
On Monday, after the audiologist, we will head quickly to clinic for counts. I expect she will need red blood cells and platelets. She probably could’ve used platelets on Thursday, but Dr. Neely decided to wait. Michaela developed a bruised look above her right eye and I think it is from the coughing that she has been doing lately. The strain of coughing, combined with low platelets can cause bruising. Her lungs are clear, but she has a bad cough from her sinuses.
We look forward to a busy 5 days before we get our normal fever admission. We’ll spend a lot of time visiting this weekend with our loved ones that we haven’t seen in a long time! I hope everyone feels better about the update today. I truly feel better about where we are and will try only to update when I have the proper outlook. Of course if the facts support another update, that is what you’ll get. I will keep you all up to date so you can say a targeted prayer for us! We count on them more than I can express!~
God Bless!
Kim
Tuesday, February 3, 2004 7:42 PM CST Well, Michaela has 2 days of out-patient chemotherapy under her belt! Yeah, Michaela! On Monday, before chemo began, Dr. Comito examined Michaela and was somewhat surprised to admit that there were lumps that she could now see that weren’t there the previous Monday. One was on the right side of her face, slightly above her cheekbone and at her hairline. The other was inside her mouth. Again, this was on the right side of her gums, back by her molars. Not good....
Dr. Comito suggested, and we agreed, that it would be better to cut the chemo from 5 days to 4, in the hope that Michaela’s blood counts will recover quicker. This should allow us to get into round three quicker and not lose so much ground. Ideally, this should be done in 3 week intevals. We had 5 weeks between round one and round two this time. We had a wonderful response with round one, but these new lumps actually popped up overnite. It’s almost as if the disease has taken on a personality and that personality maybe doesn’t feel like it’s being taken seriously. Is that crazy? Could it be? Tests say “remission” neuroblastoma says “surprise, I’m back!” Docs say, “Sure, you can wait until the first of the year. It’ll be fine....” Neuroblastoma decides it’s time to blacken Michaela’s eye and break blood vessels, turning the white to red. “Take that” it says.
We do....we take it. And it breaks our hearts. Now, here we go again. Even last nite, after the shock of Dr. Comito finding these new lumps, Michaela found another new one. It’s on the back of her head...
Relentless. Discouraging. Disheartening. Heartpounding.
I wondered out loud to Dave if he felt that we were putting Michaela through all this crap chemo, blood counts, examinations, dangerous infections and hospitalizations, when in the end we are just prolonging the inevitable. He told me to be strong. I have to be strong. My worry is that, sometimes, not necessarily now, it is the strongest, bravest and most selfless, to let go. Let go ~ Let God. I want to knwo, without a doubt, that we will know when that time is. I am so frightened that we aren’t going to get a warning. It’s just going to take over and that’s going to be it. What if that happens when she isn’t feeling well. Say she’s in the hospital, on morphine for pain, sleeping all the time. What if that is the last time she has with us and we don’t know it. We all have seen how fast an infection can take over her little body. I am so scared. I hate cancer. I have hope, don’t get me wrong. I believe that we are buying her good quality time. I believe that we will have Michaela around for a long time. But I have to admit that I am scared to death.
Tonite, we gave the twins a new hairdo. Michaela lamented on how she can’t wait to do her boy’s hair. She wants to have a boy and a girl, but she knows how much they will fight and she’s not looking forward to that. She’s put a lot of thought into this. It breaks my heart.
I’m sorry.
Kim
Saturday, January 31, 2004 4:11 PM CST Well, in an hour and a half, Brad, Traci and Tiffiny will be here. We have a double date planned tonite and Tiffiny is babysitting the boys and “playing” with Michaela. I should be getting ready now, don’t you think? Well, I can’t rush into anything you know. I have my wardrobe planned out. Those of you that don’t know me might find that impressive, but if you know me, you know that this is no big deal. You see bluejeans go with anything, and all I wear are bluejeans and sweatpants. I plan to be a little dressed up, so bluejeans it is.
I considered going out and buying myself something new for tonite. We never go anywhere and I thought it might be nice to have something new. I changed my mind fairly quickly however when I remembered back to September 13th. We were again going out with Brad and Traci. This time Nicole was going to babysit the boys and Michaela was with Aunt Lori and Aunt Kath. Tammy and I went shopping that afternoon and I was able to find something on sale at Fashion Bug, that I actually liked. Then came the phonecall. Michaela had woke up from an unscheduled nap with a terrific earache and a fever. High-Ho,High-Ho~off to Hershey we went. There we spent 6 days.....Now, you know that I wasn’t angry. Just disappointed. I am actually quite used to cancelling our plans. All parents have this issue I am sure. Our trend didn’t begin with Michaela’s neuroblastoma. It began with parenthood and I wouldn’t change it for the world.
So you see, this is a good thing. I am actually pleasantly surprised to be able to say that WE ARE GOING OUT TONITE. We are going to the movies and then having a bite to eat~hopefully at an establishment that serves alcoholic beverages....teehee.
The kids will have a wonderful time with Tiffiny and we will have a better time with Brad and Traci!!! All is right with the world.
On Monday, we will be going to Hershey for our first outpatient chemo. I am, to be honest, a bit nervous. I love our 7 west nurses and count on them to take great care of Michaela. Chemotherapy, in my mind, is like putting drano in a child’s vein. I know it serves a very important purpose, or obviously we wouldn’t allow it any where near Michaela, but it is frightening to me to hand the responsibility over to another set of nurses in the clinic. I know them, and love them as well, but they’ve never given MY daughter chemo. Until Monday, I have only known them for the good stuff. Blood draws, transfusions, IV antibiotics, and plain ol’ fluids. Not quite the same.....
Michaela is feeling better. No fevers and her earache has passed. She still has the ongoing cough. You remember, the one she’s had since July....Her legs have bothered her. She doesn’t complain, but I could tell by the way that she had to get into and out of the van yesterday. It is very sad to see, but it makes it crystal clear that it is time for this next chemo. We can afford no delays!
Nicholas and Daniel went to school this week since Wednesday and had a wonderful time with lots of stories to tell. Very long, enthusiastic stories, if you know what I mean. Theses tales don’t always make sense, but they are smiling while telling them, so I feel confident that they all have happy endings....even if they are lost to me.....
I heard from the Sweet family and they very much appreciate your kind messages to their precious Luke. He is having a difficutl time now with his moods. His reaction to morphine is much like I’ve been warned about. He just isn’t himself. Hopefully, they will get this under control and he can have some peaceful and painfree time with his family. It saddens me to know that this is the best thing that some of these kids can hope for. Pain control and peace. It is a future that I fear deeply.
Daddy posted new pix!!!! Enjoy!
Blessings!
Kim
Thursday, January 29, 2004 2:40 PM CST Welcome to parenting a child with cancer 101.
There will be no test! Advice will be accepted.
Enter and you will find a beautiful 8 year old girl who is angry that she isn’t allowed to play outside in the snow. Her name is Michaela Ann Mease
You will also find 2 confused adults. One female, referred to from now on as me or I, and one male referred to as him, he, Daddy or Dave. They are confused about the child’s current health and have told her that she may not go outside to play in the snow.
Here are the facts:
1) Michaela woke up at 2am with an earache that caused her enough pain that she was crying and screaming. Red flag#1 She didn’t have a fever, so we medicated her with tylenol and allowed her to take up her sleeping position between us. The child quieted quickly and slept well for the rest of the night.
2) The next time that Michaela woke it was 10am. This is late for her and she said that she was still tired. Red flag#2 BUT her earache was gone.
3) I took her temperature and it was 100.1 degrees. Red flag #3 100.5 is where we begin to think about making the trek to HMC.
4) At about 11:00, Michaela dressed and hungry appears in the living room. She’s not tired anymore and wants fruitloops cereal.
5) Before the fruitloops, I take her temperature again, it is down to 99.8 degrees and she looks good.
6) After the fruitloops, Michaela says she’s cold and wants a blanket. Red flag #4. this usually indicates a fever with Michaela, so I take her temperature again. No fever, but she admits to feeling kinda yucky. I offer her tylenol and she readily accepts my offer. Red flag #5. Michaela never wants to take medicine unless she feels pretty bad.
7) I get the tylenlol, which she may have because she doesn’t’ have a fever
8) Michaela throws up as soon as she sees the tylenol. Red flag #6
9) Michaela takes the tylenol by 11:30
10) After taking the tylenol she has ate chicken and stars soup. She has painted, watched cartoons and been well ever since. She even convinced Daddy that she wanted Garlic Ringbologna. She won't speak to him now though. He agreed with Mom that playing in the snow wasn't the best idea. Hopefully, she's going to forgive him later so they can play some cardgames. He said he wasn't playing with her unless she forgives him....We'll see!
We talked to Amy at Hershey, and she is as confused as we are. She suggested that we keep an eye on Michaela and stay put unless Michaela’s fever rises and stays elevated or she begins to act sick. For the most part we are okay with this, but we know that her temperature usually goes up at night. We also worry because when Michaela has an infection, her blood pressure almost always takes a hit! We don’t know how to take a blood pressure, so we may need to call on Nicole and hope she has her cuff at home!
I really hope we are able to skip this fork in the road because we certainly don’t need another delay in her scheduled chemo that begins on Monday! Neuroblastoma is growing as we speak. It’s up to the chemo to keep those tumors down and shrinking!
It’s been a while since I posted and I apologise. I am very happy to tell you all that we finally got the good news that we expected to hear. Michaela’s bonemarrow is cancer free, as far as her biopsy can show! For this we are grateful, and thank you all for your continued prayers, good thought and positive messages! God Bless you all, as you have blessed us!
There are many beautiful children out there that are fighting neuroblastoma and I would like to invite you to meet them. If you are interested in meeting a beautiful boy, unfortunately near the end of his life, please go to
http://www.caringbridge.org/oh/lukesweet
He doesn't get many "hits" and his family has been a wonderful support to me. Please consider dropping them a line in their time of need. I know this is difficult, but we help ourselves when we help others. Preachy? Sorry. I wish everyone the support that we have. That's all I mean to do.
With a hopeful heart!
Kim
Sunday, January 25, 2004 4:17 PM CST HERE COMES THE SNOW AGAIN!
I was a little nervous about getting to the clinic tomorrow, because, unless the forecast changed, we are going to get about 7 inches of snow overnight and then have sleet and freezing rain tomorrow. Our clinic appointment is for 10:00 and I am sure Michaela will need at least platelets. PaPa was kind enough to volunteer to make the trek with Michaela and me. Here’s hoping that the trip is uneventful and the appointment goes quickly. I wonder if our friends, Laura and Amanda will be there. They travel from St. Thomas and it takes them 2 hours for the trip in good weather.
We are working on taking the Christmas tree down. The gifts have all found their homes and the decorations are off of it. Hopefully, we will still be able to get the boys bunkbeds put together, but the day is slipping away quickly! I guess my 2 hour nap didn’t help that much, now did it! I think I am catching a cold.. I guess I haven’t been sick enough yet this winter. At least this is just a cold. Dave went to CVS and got me some Zycam, so hopefully, we will nip this right in the bud. Until then, I will be keeping a safe distance from Michaela. The boys and Dave still have full blown colds, but the both will be up and at their respective posts in the morning! I don’t think the boys feel sick anymore and I know Dave feels better. He actually took a shower today. Now there’s a good sign!
There is a ham in the oven and the boys are napping. Life is good! I must go and mash the potatoes and add the creamcheese and cheddar cheese and bake them quick before the boys get up! I am cheating a bit. A friend of Aunt Kath’s makes the best twice baked potatoes and always includes them when she sends us meals! It was actually a mistake that she discovered this delicious dish. She was supposed to use sourcream, but by mistake used creamcheese and it was a hit with her family! I am following the same ingredients, but just making them like mashedpotatoes. Hope they’re as good as the are baked in their shells! YUMMY!!!!
Dave is reading Michaela a book that her friends at Hambright sent to us in a sunshine basket. We are so lucky! Life is so good!
Blessings!
Kim ~ Michaela’s content Mommy!
Friday, January 23, 2004 9:57 AM CST Home again, home again, Jiggidy-jig! We got home yesterday around 2pm. We all took a nice nap and ordered pizza!! The van is still full of bags, toys and other stuff that we take to the hospital. The house looks like it threw up toys, dust and doggy hair. Michaela and I are the only ones that don’t have a cold! Poor Dave is sick, but since he missed a lot of work to be with Michaela in the hospital, he went to work today. We need groceries and some essentials to get through the weekend~videos. If Daddy feels well enough to handle the crew, I will be heading out to get the errands out of the way when he gets home. As for today, I am finding myself walking around in a circle. I don’t know where to begin. The kids are having so much fun playing together! I hate to disrupt them, but they are playing in the livingroom and that is the room that needs the most attention. Maybe tomorrow, Dave and I can spend some time in Nicholas and Daniel’s room putting the bunkbeds together. Their toys take up a lot of space in the living room, as does the Christmas tree. Should I just make a Valentine Tree out of it? It takes up a lot of room too, but I sure do dread taking it down! Anyway, until we make bunkbeds there isn’t enough space in their room for the toys either! They don’t like the bunkbeds because they fight over who gets to sleep in the top. I don’t like the bunkbeds because they climb up to the top when they are in trouble and I can’t get to them! Very frustrating for an already frustrated mommy! Ha Ha!! But I do believe that is the route to take with their toys and their beds…..Wish us luck!
As long as Michaela doesn’t get a fever, we will be home until Monday when we must return to get a platelet transfusion and hopefully hear that Michaela’s bonemarrow is cancer free. I am also hoping to get the reports from both the December and January scans. I look forward to comparing the two and seeing the improvements written in black and white! Our friends Laura and Amanda have an appointment to get platelets too, so that will be nice. Gives the girls a chance to play games and Laura and I can cross stitch too!
Thanks for the positive thoughts, prayers, emails, cards, and phone calls! We are very grateful for the support and love that you all have showered us with! This is still scary for us and we never know what the future holds, but we do know that we will never be alone! Thank you all!
Blessings!
Michaela’s happily overwhelmed Mommy
Wednesday, January 21, 2004 10:50 PM CST Well today was a really good day! Michaela was feeling great when I arrived and was in a really good mood! The biggest problem she was having was hunger! Love to hear that! Her white blood count is still hanging at .5 and her neutrophils had actually dropped, so here we are! Day 12, soon to be 13! That's okay though! Days like this are few and far between for a cancer family! Michaela was scheduled for a bonemarrow biopsy and an MRI of her skull and spine today at 2:30. You all remember that this is a terrible ordeal for her and we had decided, with Dr. Neely, that she should be placed under general anesthesia again for the MRI and biopsy. She is scared of that too and it is very difficult not to cry with her when she is getting the "sleepy medicine" but this time we spent alot of time talking about the beach and all the fun we will have this summer and she went off to sleep easier than the last time, I thought. I even asked the anesthesiologist to please continue talking to her about the seashore and he did! Very Sweet! Anyway,,,,,I am very pleased to tell you all that there was a significant amount of shrinkage on the tumor that was on the orbit of her eye and sinus area. These were the areas that we were looking at because the tumor is easiest for us to see there and therefore pick up on the improvement. We will have reports on the December MRI and this one, hopefully by tomorrow,and I am very excited to read them! We didn't go over all the areas that had tumor and look for the changes, but these are smaller areas and harder for a Mom and Dad to pick up on, even with the help of Dr. Neely. I was quite satisfied with the information that we have and look forward for more details. The bonemarrow biopsy report will be back by Monday, I expect, and Dr. Neely doesn't expect to hear that it has cancer in it. These are wonderful things that we are hearing! These are results that I would not allow myself to hope for! I have hope now that I was just giving lip service to before. Now, I have it!!!! I really, truly feel hopeful! We are talking the talk and walking the walk with Michaela! It was so very nice to give her good news! She deserves to receive good news after submitting herself to something so upsetting to her! We still have a long road ahead and the outcome is still undecided, but damn is it good to have hope. I think I've written here about the nurses and how you can tell when a chemo-kid isn't doing well? There is an air of sadness and a stillness that is stifling. Today, many of the nurses and residents saw our scans before we did and there was a different kind of air....It was HOPE! Joy! Happiness! These people have become so precious to us! They cried for us and with us over relapse and now is a time to smile!!!! I told Nurse Heather that I couldn't stop smiling and I forgot how my cheeks puffed up when I did! It's wonderful!!!
Thank You for all your prayers!!!
Keep 'em comin'
Blessings!
Kim
Monday, January 19, 2004 10:40 PM CST Well, hello everyone! I am going to begin by saying that today was day 10 and I think I can see the light at the end of the tunnel! Yippee!!!! This has been the longest stay, other than for stemcell transplant, that we’ve ever had!
It has been an interesting morning, to say the least. It started out wonderfully! Michaela woke up chipper and raring to go. She was up and asking for the computer by 9am. She had a nice bowl of cereal for breakfast while I went out for coffee. When I returned, the nurse informed me that she had bad news for me. I was dumbfounded! She informed us that Michaela was going back in isolation, that she was going to head for an X-ray and they would be attemping, and I mean attempting, to obtain a nasal swab to check her again for the flu and rsv virus. Well…..let me tell you, I was not going to let that happen! I talked to the junior resident, and he said that he was concerned that she NOW had a cough. Get a clue,,,,she’s had a cough since July!!!!! I told him my feelings about these un-necessary tests and the amazing thing was that he agreed. Michaela turned the corner and he was headed to talk to the senior resident to express our opinion that she did not require any testing. She was eating, talking, laughing, BARELY COUGHING, and her lungs are clear. The Junior resident, said that the senior resident, might override him, but he would see what he could do. Guess what I told him???? Give up???? I said, “he might overrule you, but he won’t overrule me!” An hour or so later, the Senior Resident arrives to examine Michaela. He agrees, but says that if she has another fever, we’ll need to do an x-ray and nasal swab. HMMMMMM…..Well….I told him that he could even do an x-ray now, but if she still is acting healthy, eating, drinking, and playing, I still won’t let him do a nasal swab even if she has a fever. This is a painless procedure, but one that Michaela finds terribly upsetting. I see no point and wonder why these tests weren’t done when she was acting sick? I swear….sometimes things just don’t make sense to me. Anyway, the compromise satisfied us all and, this afternoon, Michaela had her chest x-ray. It was fine and dandy!
After breakfast, while all these debates were going on between me and the medical minds, Michaela met her student nurses that were assigned to her. They were wonderful and kept Michaela happy until 3’oclock! They played UNO ATTACK, Crazy 8s, colored, and even drew a picture and gave it real hair that Michaela recently shed. It was very sweet and I loved watching her play up to her audience! They were even able to coax her into eating some lunch and drink about 8 ounces of Hawaiian Punch! This is a great thing because I did find out today that Michaela needs to make strides with her eating. They ran some kind of test that indicated Michaela’s nutritional needs are not being met right not. For this test, a score of 16 would show a problem and Michaela’s score was 10….Not good. We will be concentrating on finding foods that she likes now. Her tastes have changed again, thanks to the chemo, and she isn’t enjoying her meals like she used to. Tomorrow we’ll be trying some Boost to get calories into her.
In addition to her nursing students, we had a visit from PaPa, Aunt Cindy and Hannah! It was quite a busy day and Michaela thoroughly enjoyed herself!
We got new neighbors today. A little girl was just diagnosed with cancer and they are also from Lancaster. The family had the look of shock and sadness that can’t be missed. It is such a scary world that they are walking in to. I felt terrible when I was talking to the mom and told her that we’ve been in treatment for over a year. She looked so overwhelmed and frightened. Her daughter is doing well, but the family is devastated. They have 5 other children and it was very sad when the other children had to go home with Dad. It was clear that this is traumatic to the siblings and parents. I can only pray that they find the same level of love and support that we have been blessed with. I felt so bad for her that I gave her my cot. The best cot that HMC has to offer. I figure, she needs it more than I do tonight. I am going home tomorrow anyway and Dave doesn’t use a cot. I hope she sleeps well so she can begin her new life on a good foot. I wish there were more that I could do. You know, maybe eradicate pediatric cancer….something simple like that should do the trick!
On a lighter note,(or more serious, if you’re Dave) I will not be doing the trash this week. I received a panicked call today. Apparently, I didn’t put the “good” black garbage bags back where they belonged, or worse, used the last one and didn’t tell Dave. The bags can’t be found and now, thanks a lot Kim, Dave will need to use the “back-up”bags! How careless? How rude? How irresponsible? I have no idea where they are and I genuinely feel bad. I didn’t mean to disrespect his territory. I hope he knows that I hold his garbage ritual in the highest esteem….This isn’t because he was doing my laundry today either. I know that he would never mess with my special laundry system. My Dave loves me far to much to be vindictive, right? I sure hope so, but it seems interesting that he decided to help out with the wash AFTER he discovered that the trash bags were missing. Things that make you go “HMMMM???”
Blessings!
Kim
Saturday, January 17, 2004 7:09 PM CST Hello from The Penn State Children’s Hospital at the Milton S. Hershey Medical Center Room 7265. When Nicholas, Daniel and I (Mom) arrived at the hospital, it was about 1:00. Michaela was receiving a transfusion and was in good spirits and feeling well. By the time Daddy was leaving with the twins, around 2:30, Michaela looked exhausted. By 3:00 she was running a fever of about 101.4. I have no clue what happened or why, but she still has the fever. She had a fever 2 days ago too, and she had just received platelets. I don’t know if there is a connection, but it seems suspicious to me. Her white count is up to .3 now and before the fever of today, we were waiting on her count to get a bit higher and then we were going to be discharged. Since this fever hit, they drew more cultures and are looking to find the source of the fever if it is an infection. She is down to receiving 2 antibiotics, but may need to have the 3rd one added back on to the menu.
She has been in the hospital since Friday and I truly expected her to have rounded the corner by now. As disappointed as I am, I am glad that aside from being a bit more tired than normal, she is feeling pretty good. We had Chinese food for supper delivered and ate it out in the hall with our friends Laura, Guy and Amanda. Amanda had a sarcoma and had her one leg amputated from about 2 inches below her knee. I think she has finished her last chemo, but like us, she is fighting an infection and waiting for her counts to rise. She is an inspirational girl! She is trying to get accustomed to her new leg and I am amazed at her spirit! She will do well with her leg and everything else, I’m sure. She plans to be a nurse when she grows up! What a surprise! Her Mom, Laura and I both enjoy cross-stitching and we get along great! It’s nice to be here with friends. I sure do miss Lisa and Chad, but I am so very glad that they can put this part of their lives behind them…. Tucker had scans this week and everything came back A-Okay! Thank you God!
Well, I have to go! It’s time to color in her new ScoobyDoo crayon book!
Blessings!
Kim
Thursday, January 15, 2004 5:48 PM CST Well, the garbage is done! I did it all by myself and no one got hurt! I haven’t received the written report from Dave offering suggestions for improving my performance, but I am sure I will.
Michaela continues to improve at a snail’s pace. Today she walked the halls with Dave, played UNO, and teased the nurses. After all that excitement, her and Daddy took a nap.
Dave put a call in to Dr. Neely, because I have been concerned that her eye is beginning to look worse again. That had me frightened because I was afraid that the chemo wasn’t able to keep up with the tumor’s progression. Dave doesn’t see it and neither does Dr. Neely. That’s good!!!! He feels we need to keep with the plan of attack and give the chemo an opportunity to do it’s job. The one issue we will be facing is Michaela’s counts. They are currently in the toilet. She is at .2 on her white count and has teetered there for the last 3 days. Today, she received a platelet transfusion. Her red count has been okay since last Friday. Her white count must improve before she can come home and she will not be starting chemo as scheduled on Monday. I have some hope that she may come home tomorrow, but Dave doesn’t think she will. He’s probably right, because he’s there and I am not. (I ended up getting sick again Tuesday nite and Dave had to come to the hospital and drive me home.)
Hopefully, I will be up to relieving Daddy again. It is no fun staying there without a break! I am amazed at his stamina! He’s been covering for me so much lately! I just can’t seem to shake this stomach virus! I just hope that he doesn’t get so run down that he gets it next!
Pray for us all!
Blessings!
Kim
Monday, January 12, 2004 5:36 PM CST Today has shown some improvement for Michaela, but let’s first get everyone caught up.
On Saturday, when I arrived at the hospital, Kay wasn’t feeling good at all. She was feeling very sick and spiking a fever every 6 hours or so. Tylenol would bring it down and she was able to rest, but she was still having to get to the potty quickly because of the diarrhea. Her port is still bothering her and she generally was miserable. We had to change rooms because they tested her for the RSV and Flu virus. As soon as they test for these things, they need to assume the child has it. Our room didn’t have the proper ventilation, hence the move. The rest of Saturday evening went by quite slowly. Michaela was especially uncomfortable with her high fevers and moaned and cried out when she was touched by a nurse or had to go to the potty. You all know how ucky you feel with a high fever….Her niter wasn’t a good one. For some reason, even when Michaela was dozing and I should have been able to, I couldn’t sleep. The last time I looked at the clock it was 6am. By 9, I was up again, and had missed the rounding attending…wonder if I was snoring??? Michaela had slept through that exam as well.
When we were both awake I noticed that her right eye was looking bad again. It isn’t black and blue, but it looks like it is starting to head in that direction. It looks to me too that it is beginning to react differently again. I asked the resident to come back and take a look and he saw it too. He got the attending, and he examined Michaela, and said that he thought that it would be too soon for the tumor to be coming back considering the chemo that she just received, but he wouldn’t say that it wasn’t possible. He said it could be the major tumor breaking up, giving it a worse appearance, but really not being a problem. That would be nice and I am hopeful! I look forward to seeing her tomorrow to see if there are any changes. While her blood pressure has stabilized, her fevers just about had the doctor convinced that she was fighting a fungal infection in her body. The antibiotics would take care of the bacterial infection, she had negative results on the RSV and Flu tests, so the only thing left to try to treat is a fungal infection. They often cause high fevers and can become serious quickly if left unchecked. Michaela also was not responding to me when I talked to her. She was looking right at me, but had a blank look on her face. She often didn’t answer me and gave me no indication that she even heard me. This was freaking me out! That, and the change in her eye really had me in a bad place mentally yesterday afternoon. The doctor ordered that if she spiked another fever he would have to begin the anti fungal medicine. This is a BAAAADDDDD medicine. Very harsh on the system. It is given with Demerol to try and keep the tremors at bay. I have heard it referred to the “shake and bake drug”. I really didn’t want her to have it! By the time the next fever came, she was trying to eat and was not looking too miserable. She was talking to me when it was necessary and I don’t know why she was acting that way…maybe she’s just sick of answering me….maybe she wanted to see if she could make me pee my pants. Whatever the reason, after talking to the doctor about her eye and her communicating with me again, I brought myself back to positive thinking. Don’t get me wrong, she still isn’t talking much. I was clearly working on her nerves and she wanted me to leave her alone, but at least there was light back in her eyes. I could see that she was processing what I was saying at least. That combined with her effort at eating, he let her off the hook again. No “shake and bake” for Michaela at this time! Yeah!
The only time she looked happy yesterday was when her Daddy got there at 5pm. That made her smile! When I called last niter, she was even agitating Dave and the nurse a bit. Much more Michaela-like! It amazed me when I thought back to morning when I wondered if she was all there…..Thank God she is….
Michaela gave me a case of her belly issues and I stayed home with the boys. They didn’t even go to school because I couldn’t stay away from the bathroom long enough to drive them there! I’ve been good since late afternoon, but Dave is allowing me to stay home again tonight…just in case! This leaves me to do the ALL IMPORTANT ~~~~~
~~~~~~~PUTTING OUT THE GARBAGE~~~~~~~~
This is huge in our family. I never put out the garbage. It is a sacred rite of passage that I believe Dave is trying to perfect and pass down the boys~when they’re 30 years old. Can’t start too early. There is a specialized sequence of events when doing that job. I am not privy to that information, but I will do my best because I know that I’ll never hear the end of it if I do it WRONG! When Dave does this chore he spends about 1 1/2hours the niter before and about ½ hour the following morning. I expect to have it done in about 10minutes. Give or take 5.
So, long story huh? Bottom line. Tonight, it’s Dave and Kay~MOM and the boys! Michaela is feeling well. No fever since yesterday and good blood pressure. Dave and her are pretty tired. Her from her illness, Dave from boredom. My belly is better and I’ve decided to test it with Pizza Hut pizza. So far, so good.
I’m off to do the TRASH! Wish Me Luck!
Blessings!
Kim
Saturday, January 10, 2004 11:41 AM CST Just a quick update, as I am getting ready to head to the hospital to relieve Daddy! Michaela’s blood pressure yesterday was extremely low. This isn’t unusual for Michaela. It seems like when she gets an infection her blood pressure really takes a hit. What was unusual is that she had a bolus~large amount at once~ of fluid and 2 pints of blood and it was still low. The doctor told Dave that if that didn’t improve and she needed blood pressure medicine, she would have to go to the PICU. That, we definitely didn’t want! Thankfully, this morning, that is under control, but her fever is still high. It’s running at about 104 degrees and she is vomiting and suffering from diarrhea. She is right where she belongs and doing exactly what she needs to do~resting. Yesterday was quite tiring for her. Because of her blood pressure, the medical people were constantly at her and she understandably was frustrated. She just wanted to sleep. It seems that she is able to do that today and isn’t as frustrated.
The boys and I had a nice evening last nite and I am feeling much better. We got a ton of laundry done and watched a movie with Nicole. Brad and Traci came over for a surprise visit and the boys and I really enjoyed that! They brought Tiffany and her friend too and we had a very nice visit. We are so blessed with such good friends!
The boys and I slept together in “mommy’s bed”. They were so excited about that last nite that they just about kicked Nicole out so we could go to bed. It wasn’t as much fun for me, because they are bed hogs and I had to keep moving them. They kept coming back. Apparently, this arrangement was as much fun for them as it was for me. At about 3am, I asked them if they would go to their own bed….PLEASE!!!. Well,,,,,they couldn’t get out of my room fast enough. By the time I caught up with them they were covered up, tucked in and fast asleep. Wonder if they’ll ask again?
Keep praying friends! We’re counting on you!
Blessings!
Kim
Friday, January 9, 2004 9:23 AM CST Hello. Michaela woke up this morning with a fever of 102.7 and is on the way to Hershey with Dave. I am fine now, but want another healthy day before I go to the hospital. I don't need to expose anyone to my germs and have tons of wash to keep me busy. One more day of feeling well and I'll be with Kay and will be more confident that I can't spread my illness...
They will begin this trip in the clinic because there are no rooms in the inn. Antibiotics must begin immediately to ward off septic shock since her white count is still so low.~see yesterday's entry~. She should begin to feel better in 24 hours, but she will be inpatient until she is fever free for 48 hours and has negative cultures. This hospitalization should last at least 3 days. Say a quick prayer that they get a room quickly and that Dave can get some rest. He really wanted me to go and begin Michaela's stay with her so he could rest, but I just need a day to build my strength and return to her healthy and not in need of that darn mask you must wear if you have ANY cold symptoms! He agreed to give me that, so I will feel terrible if he is left in a clinic chair all day! Oy the guilt.....
Blessings!
Kim
Thursday, January 8, 2004 4:33 PM CST Hey all! Michaela and her Daddy went to the clinic today for counts and a platelet transfusion. He just called will be heading home shortly. Michaela did very well considering this was the first time she had her port accessed. Because her port is under the skin, unlike the broviak was, it is accessed by needle for all her bloodwork, transfusions, antibiotics and chemotherapy. The area around her port is still quite bruised from it’s insertion and it hurt quite a bit when they were cleaning the area before putting the needle in. The needle going in however hurt less than Michaela thought it would. That was good news indeed for Michaela! Her red blood cell count has actually improved and her white count as we expected is very low. That is why she will continue to get her nitely GCSF shots. During the transfusion, Michaela’s temperature had rose to 99 degrees. Hopefully, this is because of the blood product that she received and not due to an infection that would require a hospitalization..We’ll keep an eye on it.
Michaela is looking good and Dr. Neely is pleased with how things are going so far. He has been in contact with Dr. Maris at Children’s Hospital in Philadephia and we will head there for a consultation probably in March. Her next chemo is scheduled for January 19th and we will do a bonemarrow biopsy and an MRI of her head and spine on the 26th. Hopefully, these test will confirm my feeling that we are on the right track and we can plow forward with a treatment that will keep Michaela as healthy and happy for as long as possible!
I have to ask you all to keep praying, not only for Michaela, but for all our brave children that are fighting childhood cancer! On my neuroblastoma group, many parents are receiving the frightening news that their cancer is back or progressing. The children are getting tired and the parents are getting scared. One example is Alex Scott. She is the little girl from Phili that has the famous lemonade stands to raise money for childhood cancer research. She really needs prayers now as she is getting tired of fighting. This amazing child has been through so much and wants a break. Her parents keep her informed of test results and she has a great role in the decision making process that they are about to begin, yet again. Please pray for her and her family to have the strength to follow the correct path. Give them any encouragement you can and read about their story at http://www.caringbridge.org/page/alexscott
She is truly inspirational and right now she and her family could us a little lift. The webpage about her Lemonade Stands is http://www.alexslemonade.com/
Thank you to everyone for keeping up on Michaela and the rest of us Meases! I am recovering and that’s a good thing because Dave is absolutely exhausted. He is taking care of everything while I am holed up in the bedroom. I can’t wait to hug Michaela again!
Blessings!
Kim
Wednesday, January 7, 2004 9:14 AM CST I apologize for not updating sooner. You see, I am fighting the flu. Can you get the flu if you’ve had the flu shot? I thought not, but this sure feels like the flu. While I was at the grocery store yesterday, someone hit me with a mactruck. Or so it felt. I came home, got in bed and stayed there.
I am staying as far away from Michaela as I can, but from what I can tell from across the room, she looks good! From what I could hear from the bedroom, her and her brother’s had a nice evening last nite and got along very well. They are quite sad when Sissy must get her shot and Danny likes to put an icepack on her boo-boo when it’s all done. They don’t understand how something that hurts could possibly be good for Sissy. While it’s awfully sweet to see them so concerned, it’s crystal clear how much this affects them as well. Thank you Aunt Kath for holding and comforting Michaela last nite for her shot. That’s a stinky job, not as bad as giving the shot or getting the shot, but stinky just the same.
We go to clinic tomorrow for blood counts and will hopefully get out without needing a transfusion. I don’t know how we’re gonna do that if I am still this sick. We’ll figure something out.
That’s all, I’m going back to bed. Dave and Michaela are at the store getting me Advil and I’m sure something fun for Michaela.
Blessings!
Kim
Saturday, January 3, 2004 12:39 AM CST WE'RE HOME!!!
Michaela handled this chemo wonderfully! She seems tired, but nausea hasn't been an issue and her hair is still there! Dr. Comito said she might not lose it! How about that!! We'll see, ya never know!
We will return to clinic next Thursday for counts and a probable transfusion. We will check counts twice a week. Michaela will begin GCSF shots again tomorrow evening to help her whiteblood cells to recover. Red blood cells and platelets will have to be transfused. Michaela isn't happy about getting shots again, but understands that it is a necessary evil and is comforted by the fact that we will try this go around to numb the area with ice before the shot. That may numb her arm more than the LMX cream that we usually use.....Again, we'll see...
We will go to outpatient clinic for chemo every three weeks as long as her counts recover sufficiently. If not, we'll go in every four weeks.
Before this next chemo, the plan is to have another MRI of her head and spine. Also, Dr. Neely and Dr. Comito are concerned that since the last bonemarrow biopsy, that was clear, the disease has returned to the bonemarrow. Hopefully, while she is under anesthesia, Dr. Neely will be able to come to us and give her a bonemarrow biopsy. This way she will only face the "sleepy medicine" one time. This terrifies her for some reason. I have to try to find out what exactly scares her. I don't know if it's the going to sleep, not knowing what's happening while she's asleep, or being afraid that she won't wake up. Hopefully, Dave and I will be able to help her through whatever it is that she is so upset by so next time, it won't be so traumatic...And Again, We'll see..
If we see that this chemo is working,in March, we will go to Children's Hospital of Philadelphia ~ CHOP ~ to talk to Dr. Marris. He is a neuroblastoma specialist that can give us all of our options.
If we see that this chemo hasn't done the job yet, but no new areas are found, I believe we'll give it longer to do
it's job. If the cancer is progressing despite our efforts, we will have some difficult decisions to make. I don't expect that.
Here's what I expect....I think we will be in for a long battle that will keep the neuroblastoma under control I have hope that we will have Michaela for a long time and she will feel well most of that time. I don't know that we will ever be free of the fight, but that's okay. As long as Michaela wants to fight, we will be there fighting right along with her. We will be grateful for the chance to spend every moment with her that we can. We will know that noone is promised anything in this life and the best we can hope for is happy times with her. With or without neuroblastoma in her body, my goal is for her to live. Day to day, we will appreciate the smiles that she gives us. The odds are against us winning the war, but we will continue to fight the battles with every ounce of energy we have!
With Hope!
Kim
Thursday, January 1, 2004 9:39 AM CST Happy New Year To All Our Faithful Readers,
I was supposed to update last night but couldn’t bring myself around to do it. We got the results from the MRI back and the news isn’t good. Extensive head involvement! Nueroblastoma sucks, cancer sucks, being in the hospital on holidays sucks, I HATE IT, I HATE IT, IHATE IT, I HATE THIS SHIT. Once again we’re told the treatment would be the same without this disturbing news. The new doctor on the floor seems positive we can still kick this nasty beast in the butt, I hope to God she’s right! I feel kind of crappy right now because two times in as many days I had to look in my little girls scared, sad, pleading eyes and tell her everything was going to be alright as they wheeled her into the operating room and not being able to be beside her to hold her hand and comfort her. Man, this stinks, I wouldn’t wish this on anyone. On a positive note, Michaela is doing extremely well on the chemo so far. She’s eating more than she does at home, figure that one out, maybe she has gotten to the point where she just prefers hospital food. The pain from the port insertion seems to be easing up, yesterday we were out of the room for most of the time till the MRI. You know my little social butterfly has a lot of old friends to see!! Yesterday she wasn’t able to eat after 8:00 a.m. because of anesthesia(she slept till 9:00) and when I wasn’t looking she almost got one of the nurses working a different hall to buy her a bag of pretzels! The nurse is a good friend of Michaela’s and didn’t know she wasn’t supposed to east anything, the little stinker almost got away with it! I have to go now, pick up the boys and head north, talk at ya’s later.
Tuesday, December 30, 2003 6:37PM EST Hello! Today started out early for Michaela. She was on the road to Hershey by 6 am and off to surgery by 7:15. She was given “sleepy medicine” to make it less scary to leave us at the doors to the operating room, but it didn’t work. She came to life full force and screamed and cried. It was not fun at all for any of us. The port was placed without any problem and she was heading back home to 7 west by 10:00. It would have been even sooner except someone forgot to let admissions know that we would be staying after the procedure for chemo…Oh well, no biggie!
It turns out that a port is more painful than a broviak and Michaela has needed some morphine to control the pain. She is very tired and can’t stay awake but at least the pain is under control. Her blood counts are surprisingly good so I hope that means her bonemarrow is still cancer free!
Tomorrow Michaela will go under general anesthesia again to have an MRI of her head. We need to see exactly what’s going on in there so later we will know what effect the chemo is having when we test again. The test is scheduled for 2, so I am hoping that by late evening someone will be talking to us about the results….
I just spoke to Dave on the phone and they are just about to begin chemo. It can start 4 hours earlier each day, so that we will get out in good time on Saturday. For example, if we begin today at 7 pm, tomorrow we will begin at 3 pm and so on…
It’s surprising how fast we are at home being back at the hospital. Thank God the nurses and PCAs are so supportive and friendly. Actually, the entire staff at Hershey is awesome. It’s like we never left in a way. It’s a pleasure to see our friends again, but sad to explain why we are back. It really is like a second family to us and we are grateful! You can see the sadness on everyone’s face when they ask how we’re doing. They know how much Michaela has endured and how brave she’s been and it’s very disappointing and discouraging to them too.
The boys are doing very well! They are happily playing with their new toys and aren’t too sad about sissy being in the hospital. Nicole took them to school today and Aunt Lori picked them up. Aunt Kath brought them McDonalds for supper and they were very well behaved tonite! I am very proud of them! They can be such sweethearts and have been through a lot too! I think school has been a wonderful experience for them and they really seem to be growing up right in front of my eyes! They love their teachers ~ Miss Jenn, Miss Kristen, and Miss Pam! Everyday they have a new story about what they did in school. Today was an IceCreamParty for Miss Kristen!
Keep the boys in your thoughts too! They’ve been through so much too and half the time they have no idea what’s going on. It’s just scary and confusing to them….they don’t know why everyone can’t be home and why they can’t always be picked up and taken to school by the same person. They need all the support, love and prayers that they can get too!
Thanks for checking in and Keep Praying!
Kim
Monday, December 29, 2003 7:21 PM CST Hi everyone! Thank you for all the calls, messages, cards and emails wishing Michaela a happy birthday! She had a good day. We didn’t go with the original plan of dinner out and a movie, but she was treated to a delicious steak dinner and mashed potatoes and wonderful presents! She had a very good day and it did our heart good to see her enjoy herself so much!
Today we went to the clinic to see Dr. Neely and see what he thought about Michaela’s newest symptoms. The lid and underneath her left eye are black and blue. The eye itself has broken blood vessels in it and it isn’t reacting the same as the right eye. It is “lazy” and goes where ever it wants….. Lumps have also become clear between her eyebrows and on both sides of her cheekbones at Michaela’s hairline. Because of these things and the way they popped up so quickly, Kay will be admitted tomorrow after her port is in place. We should be able to come home by Saturday nite and the rest of the chemos should be able to be outpatient. We just need to get this one underway quickly. The neuroblastoma appears to be more aggressive than Dr. Neely expected it to be. We will also have a better shot at getting a much needed MRI done under sedation if we are already in the hospital…We need to see exactly what is going on in there, that way we can see when it goes away!!!! During this stay, Dr. Neely said we can have passes to leave the hospital when the chemo isn’t running and no tests are planned. We can go to Candy Lane, the movies, shopping or out to dinner. It will be nice. Plus, as much as we love being home, we really do miss our nurses! It’s actually fun to be there when Michaela isn’t too sick to clown around and enjoy all the fun activities that they have to offer.
We must be at the hospital by 6am. Surgery is scheduled for 7:10 and should be reasonably on time because we are the second case. Michaela is very nervous and upset about being put under anesthesia and we just called Hershey and asked for something to help calm her down. Dave will be going to get that in a bit and our little lady should be feeling better soon. Please pray that she can get a good nite sleep without thinking about tomorrow.
Good Nite!
Kim
PS~NEW PICTURES IN THE ALBUM!
Saturday, December 27, 2003 8:27 PM CST Happy Holidays! I hope everyone had a wonderful Christmas! The kids had a lot of fun. It is a bit overwhelming, during the best of circumstances, to see everyone that we love and not get stressed out. That being said, I can’t complain. We woke up and opened our gifts at home then we went to Aunt Jana’s and Uncle Bill’s house. We had a delicious dinner, enjoyed seeing family and opened more presents. The boys and mommy were tired so we headed home for a nap before our next visit. Michaela was tired too, but didn’t want to go home, so she stayed and played until PaPa brought her home around 5:30. She fell asleep on the couch and got a little catnap before we were off to Grandma and Grandpa Mease’s house. We enjoyed visiting, gift exchanging and eating again. It’s always fun to see everyone, but there’s never enough time to spend anywhere, including home. We have often said that “next year we are staying home”, but this year, I think we mean it. It’s just too much and that just steals joy that we don’t have to spare. Dave had to work on Friday, so Mom had cleanup duty. It took all day, but when it was done, we had Christmas Pizza and gift exchange with Aunt Lori, Aunt Kath and MumMum! My children honestly believe Christmas is a week long celebration. It really should be, I guess, because it’s impossible to spend enough time with all our loved ones in one day.
On Friday nite, while eating Christmas pizza, we saw that Michaela’s eyeball is now affected. Not only does she have a black eye, a broken blood vessel in her eye but, now she is having trouble focusing with that same eye. It’s upsetting to Michaela and she thinks she is ugly. We’re trying to convince her that she couldn’t have enough wrong with her to be ugly. She is beautiful to us and anyone that knows her! I am just hoping to keep her home for her birthday tomorrow. I don’t want to go to Hershey on the weekend, much less on her birthday. She is tired, her legs are bothering her and her eye does scare me, but I haven’t seen any changes since Friday. That’s good. We are supposed to go to Hershey on Tuesday for the port to be place in outpatient surgery, but I will be calling on Monday and hope to see an oncologist before surgery. I wonder if chemo shouldn’t begin sooner than we planned. I don’t like the changes or the speed with which they are occurring.
I am happy to report that she went to bed early tonite and has been asleep since 8:00. This is very unusual for Michaela, but I am proud that she was able to admit that she was that tired and able to go to bed with out a fuss. She is listening to her new Toby Keith cd blaring on her new boombox that she got for an early birthday present from Nicole. Sound asleep, with “I Love This Bar” blasting! I asked her if I could turn it down. She just giggled and said "no thanks" That’s our girl!!!
We had originally planned to have a rollerskating party for her birthday, but decided to postpone that until her legs are improved. Next, we planned to go out to eat, where ever she chose and go see a movie. She chose The Old Country Buffet. She’s never been there and wants to give it a try. I truly don’t know that we will make it to dinner tomorrow either, but we’ll get there eventually. I will be getting an icecream cake for her and we will at least do that!
I talked to my buddy Cristian tonite! I was thrilled to hear from him and shocked when I heard his voice. He called out of the blue and wished us a Merry Christmas. He has the flu and is still in IMC, but he’s getting there too. He wanted to talk to Michaela, but she was already asleep. She’ll be sorry that she missed him, but maybe we can give him a call tomorrow. We still won’t be allowed to see him, but that will be nice anyway.
Thank you all for all the phonecalls and emails We appreciate the encouraging words and promised prayers. We’re counting on you all to pull us through this most recent setback, as you’ve all done before. We can’t begin to express enough how much you all mean to us. Family, friends, fellow cancer fighters and strangers all give us the strength to carry on with hope and hopefully…dignity and grace.
I will try to update more often, as things are changing quicker here. Hopefully, soon, the updates will be uplifting again.
With Love and Gratitude!
Kim
Saturday, December 27, 2003 8:27 PM CST Happy Holidays! I hope everyone had a wonderful Christmas! The kids had a lot of fun. It is a bit overwhelming, during the best of circumstances, to see everyone that we love and not get stressed out. That being said, I can’t complain. We woke up and opened our gifts at home then we went to Aunt Jana’s and Uncle Bill’s house. We had a delicious dinner, enjoyed seeing family and opened more presents. The boys and mommy were tired so we headed home for a nap before our next visit. Michaela was tired too, but didn’t want to go home, so she stayed and played until PaPa brought her home around 5:30. She fell asleep on the couch and got a little catnap before we were off to Grandma and Grandpa Mease’s house. We enjoyed visiting, gift exchanging and eating again. It’s always fun to see everyone, but there’s never enough time to spend anywhere, including home. We have often said that “next year we are staying home”, but this year, I think we mean it. It’s just too much and that just steals joy that we don’t have to spare. Dave had to work on Friday, so Mom had cleanup duty. It took all day, but when it was done, we had Christmas Pizza and gift exchange with Aunt Lori, Aunt Kath and MumMum! My children honestly believe Christmas is a week long celebration. It really should be, I guess, because it’s impossible to spend enough time with all our loved ones in one day.
On Friday nite, while eating Christmas pizza, we saw that Michaela’s eyeball is now affected. Not only does she have a black eye, a broken blood vessel in her eye but, now she is having trouble focusing with that same eye. It’s upsetting to Michaela and she thinks she is ugly. We’re trying to convince her that she couldn’t have enough wrong with her to be ugly. She is beautiful to us and anyone that knows her! I am just hoping to keep her home for her birthday tomorrow. I don’t want to go to Hershey on the weekend, much less on her birthday. She is tired, her legs are bothering her and her eye does scare me, but I haven’t seen any changes since Friday. That’s good. We are supposed to go to Hershey on Tuesday for the port to be place in outpatient surgery, but I will be calling on Monday and hope to see an oncologist before surgery. I wonder if chemo shouldn’t begin sooner than we planned. I don’t like the changes or the speed with which they are occurring.
I am happy to report that she went to bed early tonite and has been asleep since 8:00. This is very unusual for Michaela, but I am proud that she was able to admit that she was that tired and able to go to bed with out a fuss. She is listening to her new Toby Keith cd blaring on her new boombox that she got for an early birthday present from Nicole. Sound asleep, with “I Love This Bar” blasting! I asked her if I could turn it down. She just giggled and said "no thanks" That’s our girl!!!
We had originally planned to have a rollerskating party for her birthday, but decided to postpone that until her legs are improved. Next, we planned to go out to eat, where ever she chose and go see a movie. She chose The Old Country Buffet. She’s never been there and wants to give it a try. I truly don’t know that we will make it to dinner tomorrow either, but we’ll get there eventually. I will be getting an icecream cake for her and we will at least do that!
I talked to my buddy Cristian tonite! I was thrilled to hear from him and shocked when I heard his voice. He called out of the blue and wished us a Merry Christmas. He has the flu and is still in IMC, but he’s getting there too. He wanted to talk to Michaela, but she was already asleep. She’ll be sorry that she missed him, but maybe we can give him a call tomorrow. We still won’t be allowed to see him, but that will be nice anyway.
Thank you all for all the phonecalls and emails We appreciate the encouraging words and promised prayers. We’re counting on you all to pull us through this most recent setback, as you’ve all done before. We can’t begin to express enough how much you all mean to us. Family, friends, fellow cancer fighters and strangers all give us the strength to carry on with hope and hopefully…dignity and grace.
I will try to update more often, as things are changing quicker here. Hopefully, soon, the updates will be uplifting again.
With Love and Gratitude!
Kim
Tuesday, December 23, 2003 10:44 PM CST We have the preliminary report from the bonescan. Dr. Neely looked at it and it shows the neuroblastoma has returned. It is the neuroblastoma that is causing leg pain, and the black eye that turned up on Saturday…
We don’t have the official “report” and I hope nothing more is found. We were informed of the news by phone by Dr. Neely as he was looking at the pictures. Here’s what we are dealing with. She has a tumor on the tibia of both legs. Her right leg is worst. The tumor there is on the middle of the bone and takes up about ¼ of the area. The left isn’t as bad and begins about an inch or two below her knee. There is also neuroblastoma present on the orbit of her eye and her cheek bone on the left side of her face. Tomorrow I expect a call from Dr. Neely with the official report from the nuclear medicine doc.
The plan, as of now, is to enjoy the holidays and Michaela’s birthday. After the holidays, we will go in out patient and have a port put in. This is somewhat the same as the broviac she had before. This one gets put in under the surface of the skin and is less susceptible to infections. Kayla can take baths and go swimming with it and doesn’t need the daily flushes and three times a week dressing change, which will be nice.
Once the port is in, Kayla will have about a week to rest up and than nasty old chemo starts. This time around, chemo will be outpatient. Traveling back and forth every day for a week sounds like a lot, but it’s nice having everyone home at night. As far as we know right now, there is going to be a three week rest period between treatments. I have to say that Kim and I both feel better now knowing exactly what’s going on with Kayla(well, for the most part) and that a preliminary game plan will soon be in motion. Not knowing for sure has been nerve racking. I know I’ve been a real bear this last week
We are know the odds are not in our favor, but the odds of Michaela getting cancer were slim as well. There are cases of kids reaching NED again. They are few. This is the fight of our lives. Neuroblastoma is relentless, so please, no matter how good things may be going, keep a good thought for Michaela. Remember her in your prayers. God didn’t answer our recent prayers the way that we would have liked, but he’s got a plan for her. Remind him how important and precious she is to us. WE NEED HER. He is listening, I have faith.
Merry Christmas!
Tuesday, December 23, 2003 8:05 AM CST Okay friends! This is a call to arms!!!! Please, if you've ever prayed for us before, it's time again. You've all pulled us through so much already, I have no doubt that you will do it again. The prayer is simple~ NO CANCER SEEN TODAY! NO AREAS OF CONCERN!!!!
We go for a head to toe bonescan today at 11:45 then we meet with Dr. Neely after to discuss any findings, or hopefully, lack thereof....
Last evening's newspaper had a headline on the frontpage that said that medical miracles do happen. A dear friend of ours called to tell me that he thought it was an omen. I agree. Let's hope!
Either way, we will be okay. The "gameface" that I talk about will go on and we will fight with Michaela until we come to the beautiful place called NED again. It can happen. We will be okay.
Love you all and appreciate your caring!
Thursday, December 18, 2003 6:06 PM CST Hello! Well, here we go again. ItÂ’s back. LetÂ’s start from the beginning. It is time for MichaelaÂ’s 3 month check-up and scans. Last Thursday we had a bonemarrow biopsy and on Monday we received the wonderful news that her bonemarrow was clear. Thank God for that, we did indeed. Against our better judgement, we also had MIBG scans on Tuesday, Wednesday, and Today. We also had a CT scan today. After the scans were finished we headed over to the clinic to see Dr. Neely. We were hoping to achieve NED status again, but sadly. That is probably not the case. There are areas of concern on her femor bone in both legs. This showed up on the MIBG scan. Interestingly enough, Michaela just told me yesterday that her leg~femor area~had been bothering her for a few days. She began limping and it was very tender to the touch. She didnÂ’t tell me right away because she didnÂ’t want to go back to the hospital ! Talk about intuition. The area is so difficult to see that Dr. Neely wanted a normal x-ray to confirm. We did that and it showed nothing. This is good. It doesnÂ’t take away the concern, but it could have shown deterioration of the bone or other serious indications of severity. It didnÂ’t. He couldnÂ’t see anything. HeÂ’s the first to admit that he isnÂ’t a radiologist so he wants to do further tests to confirm or dismiss what the MIBG is showing. By the way, the CT didnÂ’t show anything either, but that was just the neck through groin. He will wait for the official Ctscan report from the radiologist. I will call tomorrow. As I run through the day and the news questions are popping up in my head.
HereÂ’s the plan, for now. We will attempt to get a bonescan before Christmas. Hopefully, this will give us good news and if not, at least help us make a plan of attack that we will begin after Christmas and hopefully her birthday too. December 28th. We have plans to party hardy for that one! We will also repeat a urine test to determine if she has levels that indicate relapse.
I am trying not to be negative. I am trying not to cry. I am failing. I am angry, heartbroken and scared to death. I donÂ’t want to go back to chemo life. I donÂ’t want her beautiful hair to fall out. It just started to grow back. Damnit!!! I almost took the medicine chest off of the top of the refrigerator yesterday. CanÂ’t do that now. Man, this sucks! I will get my game face on soon. Now, I am just too shocked. This has been my greatest fear. This is worse than the original diagnosis. We know what to expect. We know the odds are really against us now. Dave is holding Kay on the couch now. He canÂ’t eat. He hasnÂ’t had a chance to cry. He is even more shocked than I am. He was sure she was okay. I had my doubts. He is always, always more positive than me. God love him. He loves her so much. I want to take his pain. Heck, I canÂ’t even handle my own. What can I say. Storm Heaven. DonÂ’t stop. Tis the season for miracles right?
Thursday, December 11, 2003 7:21 PM CST Happy Holidays Everyone!
I hope everyone is enjoying the season without too much stress! All the shopping, wrapping, card writing, baking and cleaning can be overwhelming, but we are trying not to become too worked up here on Joseph Road. We are so grateful to be here, our complete family. Still in our home, all together and ~knock wood~ healthy. December 13th, Saturday, will be our one year anniversary since Michaela’s diagnosis. We have much to celebrate! We have an appreciation of each other, family and friends ~new and old! We can wish that Michaela never would have been challenged by her battle with neuroblastoma and we often do. However, when we think of all the wonderful blessings that we have been given we are extremely grateful! We have an understanding of how precious our children are that we never could have had. Often people speak of us and they feel pity for us. We know they mean well, but look a little deeper and you see the strength and faith that has grown inside us. Without cancer and all the reflection that it inspires, we would not be who we are today. I admit that lately I have been quite down. Very fearful of the upcoming tests and what they will show. I let my mind go places that it should never go. I’m back. I’ve got my gameface on and know that it really is going to be alright. No matter what. God has a plan. He’s carried us this far and will show us the way to take care of Michaela.
Michaela had the first of her many tests today. Her bonemarrow biopsy. She doesn’t have her broviach so she needed to get “stuck” for the blood draw and IV. She didn’t feel anything today! The needle went in and a look of surprise came over her face, then she smiled! “Thank You” she told the nurse, “that didn’t hurt at all, you did GOOD”
She was very upset about the “sleepy medicine” that they use to sedate her. She really hates the feeling of losing control and cried quite a bit when she was being put under. It breaks our heart and is very surprising that this bothers her the most. The nurse said that most kids love sleepy medicine. Especially, teenage boys~haha. The biopsy went well and when Michaela woke up we were on our way home. Actually, The Lone Star for lunch. When we got home there was a message from Dr. Neely’s nurse, Amy, on the answeringmachine. He was able to look at his part of the biopsy and was happy that he found no cancer cells in either sample. Now we wait for pathology to do their part and call us on Monday with the rest of the good news!
Before the biopsy, Dr. Neely examined Michaela and payed special attention to her eyes. She has had deep, dark circles under her eyes for a few weeks and it looks to me that the one eye is worse than the other. I have been very worried about this! Dr. Neely feels that
Everything is as it should be with her and this is just an effect of the accutane. We’ll know for sure after next weeks tests.
Well, this got long quick! Sorry about that!
Check out the new pix!!!!!!
Love and Blessings
Kim
Saturday, November 29, 2003 12:04 AM CST I probably shouldn’t update the journal now. I am pretty shocked right now. A fellow neuroblastoma fighter, just became an angel. I guess I knew it was coming. He had relapsed and fought for a long time. He’d been in the hospital for over a month and things weren’t looking good, but I guess I left myself believe there was a miracle for him. He was a spirited, strong willed young man, who was suffering a lot of pain and discomfort. Ten days ago he was being transported to another Canadian hospital for some therapeutic radiation. It was a very rainy day. The ambulance crew asked if he wanted covered up to keep dry. They wanted to put a blanket over his head until he was in the ambulance. No, definitely not, he said. He wanted to catch raindrops in his mouth. So he did. His Mom and the ambulance crew waited in the rain for him to catch his raindrops. Thank God they did. Pray for his family please.
Today Michaela has 2 birthday parties to go to. One is for cousin Michelle. She is turning 8 tomorrow and is hosting a rollerskating party. The second is for Sara. Roberta’s oldest daughter who is turning 6. She is having a makeup/slumber party! Michaela is thrilled! She is the ultimate social butterfly!
I am not sure that Michaela should be going to 2 parties in one day. To me, she looks pale. To me, she seems tired.
My idea of the perfect day for Michaela would be to stay in the house, watch Christmas movies, and cuddle on the recliner. She could always email or call her friends if she gets lonely. That way, in my mind, she wouldn’t get worn out. She would be “safe”. You know there are a ton of germs at birthday parties, right? No germs in my house. ~Play along, okay! If we do everything “right”, she won’t get sick again. We won’t lose her, if we are vigilant in controlling her environment She won’t live her life, but she’ll be here.
Take your shoes off, friends, and walk the tightrope with me.
Dave and I had a conversation this morning when Michaela woke up. She must have been picking her lips while she slept last nite because they were a bloody mess. Her skin is very dry and she’s pale. I asked Daddy to step in my office (our bedroom) and asked him. “Do you really think she should go? Look at her lips! Doesn’t she look pale to you? It’s not normal for her to sleep until after 10am! Maybe, she should stay home with us!” Here’s what we came up with. Her lips are chapped, it doesn’t mean she’s ill. She just looks bad until it’s wiped off and chapstick is applied. She’s pale, yes, who wouldn’t be. After the chemo, radiation, and current therapy, most of us would have a hospital bed in the livingroom with a cowbell to alert our caregiver of our needs. Maybe I should just say that’s how I would be living. Let’s not assume too much. You all might be much stronger than I am. Anyway….back to Michaela….Dave explained to me that of course she slept late. Dear Michaela was awake ‘til midnite last nite making birthdaycards and telling Daddy how much she was looking forward to them….BOTH!
Thanks to Dave’s ability to look beyond our fears, Michaela is catching raindrops with her tongue today. And tomorrow, And the day after, And the day after that…………
That’s what she’s fighting for!
Blessings!
Kim
Friday, November 21, 2003 8:40 PM CST Hi! Thank God it’s Friday! Too bad all the children in the house are sick! Last week we tried to keep Michaela away from the twins because they were sick, this week~they’re still sick and so is Michaela! She went to the doctors today and was started on an antibiotic for an ear infection in both of her ears! She was in quite a lot of pain this morning when she woke up but that is under control now. We found out that she can now have children’s advil again. Boy am I happy! Tylenol just doesn’t cut the mustard in our family. Sadly though, Michaela is so tired of taking medicine and we’ve added 5 more doses for 3 days. Poor Girl! The boys are also on antibiotics but they like their bubblegum medicine. I don’t think Michaela’s tastes as good as theirs does. Nicholas and Daniel still are suffering from runny noses, a cough and ear aches. Boy that flu shot really did them a lot of good, didn’t it?
Michaela is on the 8th day of her retinoic acid. She takes this medicine for 2 weeks, goes off for 2 weeks, gets a check up, and repeats the cycle. This will continue until April. So far the side effects have been harsh. Her face is extremely dry, red and raw looking. Her lips are beet red and swollen too. It’s tough to watch. Seems like she and I handled the chemo better. Strange, but I think it’s just getting OLD. She’s tired of hurting and I am tired of telling her that this is the way it has to be. I hate feeling this way, but it’s really not fair. We never said “why us” or “why Michaela”. Being in Hershey taught us it’s simple really. Why not? Why should any child suffer? Why should any adult suffer for that matter. It sucks for us. It sucks for them. Cancer just absolutely sucks. It’s a simple and as ugly as that. NOBODY deserves this.
On the bright side, there always is one, I know that not everyone is as blessed as we are with the support, love and prayers as we are. That I do know. On that note, maybe that’s why us. Who else would be as blessed by family and friends. Heck, even strangers send us love and blessings! Today, in the mail, we received a very generous, anonymous gift card for Toys R Us. It came with a note written on the computer that explained that they are Santa’s helpers and had heard about Michaela’s rough battle this year with Neuroblastoma. They wanted to be sure that she and the twins had a beautiful Christmas. Instead of exchanging gifts among themselves they put their money together and got our family that gift! We don’t know who they are, but if they read this webpage, and I hope they do, we thank them from the bottom of our hearts. It will be a wonderful holiday because we know how close we came to not having our beautiful, wonderful, brave, Michaela. We will use the gift card to get many wonderful toys for the kids and they will know that they came from “santa’s special helpers”
Thank You
God Bless
Sunday, November 16, 2003 7:57 PM CST Here we are again. Another week gone by. Thank you God, nothing too exciting here! We had a wonderful time at the brunch and appreciate the support from everyone so very much! Patti has such a huge heart and was able to organize special brunch for our benefit. It will be a favorite memory for our family! We are so fortunate to be held so close by our friends and family! Patti’s efforts were able to raise $3000. for our family! We thank you all so very much. Words don’t express our gratitude~ not just for the financial help, but for the love we felt. I honestly am working on my thankyou cards…and I will get them done. I guess I just tend to procrastinate about things. It does not reflect the sincere thanks that we are feeling.
This was quite a different week at the Mease house. The boys were beginning to get sick on Sunday at the brunch, and it hit full force on Monday. On Tuesday evening Michaela went to stay with Aunt Lori, Aunt Kath, and MumMum’s house. She loves to visit them and it was good for her to be away from her brothers while they were feeling so badly. On Thursday Michaela had an appointment at the clinic for an exam to begin retinoic acid. She had blood drawn for counts and they seem to be holding steady and improving just a bit. Still not enough to get to school yet, but that’s okay. Dr. Neely feels she is right on target and that it may take 6 months to a year for her to be recovered fully. My concern now is that Michaela lost about 3 pounds since October. Her appetite isn’t what it usually is. I think it is because of radiation. She is also a tad more tired than is normal for her. Also a side effect of radiation, I believe. Hopefully, she just needs to pass through this hurdle, but I will be keeping an eye on her eating. We began retinoic acid Thursday evening and were told to expect no negative effects other than dry skin and lips. Retinoic acid is a vitamin A derivative and in correct doses, it attacks and kills microscopic neuroblastoma cells. It is the reason survival rates have been improved to 40% to 50%. So I say “go get em” There are other side effects, but our docs haven’t seen them occur in their patients. We will go to clinic monthly for a check up, blood counts and a refill on the prescription. I expect Michaela to be on this until April. Some kids are kept on it longer, but they still have some minimal disease present. As far as we know, this isn’t the case with Michaela. We will know for sure on December 11th. We will return to clinic for a bonemarrow biopsy then.
Please continue to pray for Cristian. He is still fighting. He had a down turn last week and we returned to PICU because of seizures. Because of the illness in our home, I still haven’t been able to see him, but we did get a card from him in the mail. He continues to amaze me with his bravery. Remember him and Lucy when you say your prayers tonite.
Monday, November 10, 2003 10:43 PM CST Hello to all our friends,
Michaela is finally all rested up from her appearance at the brunch on Sunday. By the time I finally got home with her at about 9:30 P.M., she was fast asleep in the back of the van. Sunday was a wonderful day and it was so good to see some old friends and meet some new ones. Kayla had a good time passing out cookies and visiting with people. The brunch was a really good turnout and we thank everyone who came to eat and those that donated their time to make it such a success. Kayla is done with the radiation treatments now, but she goes back up to Hershey on Thursday to see Dr. Neely for a checkup and to discuss the next step, which will be yet another pill for the next six months. Michaela’s hair continues to grow but she still refuses to go out in public without a bandanna. One of these days… Kayla’s blood counts took a little dip from the radiation but that was to be expected. Hopefully it’s they’re on the rise again. Still no news on when she’ll be able to return to school, but she’s doing great with the wonderful tutors that come to help her out. That’s about it for now, we let you all know when we have more news.
Monday, November 3, 2003 10:01 AM CST Happy November All!!! Boy, didn’t October go by in a flash!?!
Lots of catching up to do here. All good too! How about that? Halloween was so much fun! The kids had a wonderful time and got gobs and gobs of candy! Michaela was a witch~ a beautiful one too, Nicholas was Superman and Daniel was Batman! The boys weren’t scared this year and were actually polite. One funny story though, our neighbors, Ron and Sally, always give out half pints of orange drinks. It’s a big hit with all the kids and parents. I look forward to hitting their house because I am usually parched by the time we do. Anyway, Nicholas stunned poor Sally because he said “no thank you, I want chocolate milk” How embarrassing! I guess if that’s all that went wrong that night, we did pretty darn good!
Michaela is now MASK FREE!!! Yippee! She is so happy! We still need to stay away from anyone that may be sick. I think we’ll be avoiding crowded places and still being very careful. School is still on hold until further notice. We will go to clinic on Thursday for bloodcounts and hopefully we’ll get to see Dr. Comito and get the plans for testing and retinoic acid. Things are pretty hectic at the clinic lately. They are getting new doctors and expanding on their “regular” treatments to include cordblood and donor stemcell transplants. Lot’s more sick kiddos and tons more complications! It’s sad really. Well, enough of that….
Michaela has been working with Mrs. D again and loving it! They do fun stuff with leaves and find interesting ways to learn math and they are working with a calendar and a road atlas. Ways to learn math that I never would have thought of in a million years! God Bless Mrs. D for coming into our lives and reminding Michaela how much fun it is to learn! Michaela also goes to her elementary school for 5 ½ hours a week to work with her 2nd grade teacher, Mrs. Adair. Kay looks forward to spending that time too. One of Michaela’s classmates, Olivia, just had a liver transplant and is also immunosuppressed. Mrs. Adair teaches both girls at the same time and they love it. Olivia and Michaela enjoy the time they get to spend together and I think it helps both girls feel “normal”. They are at different places academically, but so far, it really works out nicely.
Don’t forget that on Sunday, November 9th , Michaela will be chowing down at her brunch! She is looking forward to it and counting the days until her celebration! There are still tickets to be had and we would love to see everyone! It is from 9 to 1 and the menu is yummy! Eggs cooked to order, omelets of choice, Frenchtoast, bacon, sausage, homefries, toast, and……bloodymary and mimosa drinks!!! Please, Please come out to support Michaela. For tickets please call Mrs. Patti Draude at 285-5636 or me at 393-6753. If you would like to volunteer time and serve some tables, we would appreciate the help too. Call the same numbers and we’ll put you to work! HAHA! Tickets will be available at the door on Sunday, but if possible it would be a great help to have a good idea of the number of people to expect. If you know ahead of time, great. If not, and you find you are able to make it, but don’t have a ticket, come on out! Reservations are great, but not necessary. We will be there the entire time! We are looking forward to seeing everyone!
Our sweet Cristian is still struggling for breath. It actually is a struggle for his life. Please pray that God gives him the strength to wait out this virus. He has been fighting so long and being very brave. Hopefully, if he can keep fighting, the virus will go away and he can begin to recover. His lungs are very damaged and breathing is unbelievably difficult for him. Pray for Lucy's strength and peace of mind too. She is by his side every minute witnessing his life and death struggle. She is a very strong woman and Cristian receives comfort from her day and night. She holds him and rubs his back non-stop. I can't imagine the exhaustion and fear that she is living through minute by minute. Pray that God carries them through this ordeal! Thank you!
Wednesday, October 22, 2003 8:29 AM CDT “Lunch for Life” has generated over $80,000 for neuroblastoma funding! This is wonderful news and all of the neuroblastoma parents that I know are so grateful for the help in spreading the word! Like I said, this is so important to us all to know that we are somehow effecting the outcome of future generations of children diagnosed with this dreadful disease! It’s not for us, and yet it is. Sometimes we help ourselves best when we help others! Thank you for allowing me to do this! Everyone who replied to my request is greatly appreciated!
Cristian continues to struggle and is still in the intermediatecare unit. He is making improvements, but the extent of damage done to his lungs is not yet known. I have been in contact with his mom and she is exhausted, but still hopeful. He is able to eat chicken noodle soup and drink chocolate milk. Such a small thing for many kids, but when your as sick as Cristian, it’s great news. Please continue to pray for him and his mom. They’ve been through so very much and still have a long way to go with an unknown outcome. He is a Beautiful child and made being at the hospital fun when he was well. He just has to recover!
Michaela has her first radiation treatment yesterday! She did wonderful! We met with the radiologist before treatment started and were pleasantly surprised to hear that the kidney would not be in the field of radiation as much as they first thought. He was very confident that there would be minimal effects to it! We were told of the side effects to expect and they are nausea, vomiting and diarrhea. She may also have some skin irritation and they gave us cream to use if we see any red, burnt areas. The radiation may not cause an immediate reaction and it may not cause any at all. It does have an accumulative effect, so we won’t be out of the woods with side effects until after treatment is over While we waited in an exam room, Michaela went off to receive the radiation and didn’t even blink! How brave!!! As usual, the nurses made her feel very special and took great care of her. She was done within 20 minutes or so and returned quite proud of herself! As treatment continues they will try to schedule a better time for us so that Michaela can get back to school~after school~with her teacher and we can continue her classes with Mrs. D. too! As other patients finish their treatment, it should be easier to find a time to accommodate her lessons!
I have another invitation to extend to our faithful followers! Mrs. D., Michaela’s tutor and friend, has planned a brunch for Michaela. It is a fundraiser that she has been working on for quite sometime and Michaela is very excited. It is on November 9th at the Lancaster Tennis and Yacht Club on Columbia Avenue. Michaela loves breakfast and socializing so we plan on having a great time! It is from 9am to 1pm and we plan to be there for the entire time. Michaela’s 100 days of wearing the mask is up, so she will be mask free and munching!!! We often go to the club’s brunches and always have a delicious meal! The cost is $10 for 12 years old and up. $5 for ages 8 to 12 and free for any children under 8! Everyone working is volunteering and reservations would be a great help with planning! I have tickets for anyone interested. I need to make sure everyone understands that the funds raised help us take care of the entire family while Michaela continues her fight. It is not for medical bills, because we are fortunate to have great medical insurance. What isn’t covered by our insurance is taken care of by the Four Diamonds of Penn State. We are very careful with the fundraising profits and do not just spend it on non-essentials. It pays the mortage, PP&L and daycare etc. I want everyone to understand where there financial help is being used for. We have been very blessed by everyone and I feel it’s best if I am accountable to our benefactors!
God Bless You and Thank You All!
Thursday, October 16, 2003 7:14 PM CDT MICHAELA IS HOME! SHE IS FEELING GREAT! BROVIACH IS OUT AS OF TUESDAY AND SHE HAS BEEN VERY BRAVE WITH HER BLOOD COUNT CHECKS! WE GO UP MONDAY FOR A RECHECK ON HER COUNTS.
HER INFECTION WILL CONTINUE TO BE TREATED WITH ORAL ANTIBIOTICS.
THE DECISION WAS MADE TO HAVE RADIATION DONE AT HERSHEY. THERE WAS A LOT OF DISCUSSION AND WE WERE FINALLY CONVINCED.
THAT THEY OFFER THE BEST RADIATION FOR NEUROBLASTOMA. THE RADIOLOGISTS AND ONCOLOGIST DON'T AGREE, BUT WE HAVE TO RELY ON THE FAITH THAT WE HAVE IN OUR ONCOLOGIST. WE ARE STILL NERVOUS AND DON'T KNOW EXACTLY WHAT TO EXPECT AS FAR AS SHORT AND LONG TERM SIDE EFFECTS, BUT WE'LL JUST ASK OUR SUPPORTERS TO CONTINUE TO PRAY FOR MINIMAL EFFECTS AND MAXIMUM BENEFITS! THE CTSCAN WAS DONE ON WEDNESDAY AND THEY ARE PLOTTING THE COURSE. I AM TOLD TREATMENT WILL BE 12 SESSIONS LONG, BUT I DON'T KNOW WHEN IT WILL BEGIN. WHAT I DO KNOW IS THAT WE HAVE THE WEEKEND OFF! YIPPEE~~~
WE ALSO FOUND OUT THAT MICHAELA WILL NOT BE ABLE TO RETURN TO SCHOOL IN THE BEGINNING OF NOVEMBER AS WE HAD HOPED. SHE ISN'T SICKER, BUT HER COUNTS HAVEN'T RECOVERED ENOUGH YET. WE ARE HOPING FOR AFTER THE HOLIDAYS, SHE'LL BE BACKK!!
CRISTIAN CONTINUES TO STRUGGLE FOR OXYGEN. THE VIRUS THAT HE SUFFERS FROM IS REALLY TAKING A TOLL. I WAS HEARTBROKEN ON WEDNESDAY TO HEAR THAT HE WAS IN A DECLINE. HOWEVER, HE HAS SHOWN SIGNS OF IMPROVEMENT AND THERE IS STILL PLENTY OF HOPE IN HIS MOM'S EYES! SHE'S NOT GIVING UP AND I BET HE ISN'T EITHER!! PLEASE DO CONTINUE TO PRAY AND IF YOU CARE TO FEEL FREE TO SEND A CARD. HE IS AT HERSHEY MEDICAL CENTER (THE ADDRESS IS AT THE BOTTOM OF THIS PAGE) ON THE 7TH FLOOR. HIS NAME IS CRISTIAN ROSARIO AND HIS MOM'S NAME IS LUCY ROSARIO. CARDS ARE WONDERFUL, BUT PLEASE DO NOT STOP PRAYING FOR THEM!
Monday, October 13, 2003 9:00 PM CDT Well, Michaela is feeling very good still! We had a great day! Grandma and Grandpa came up and visited for a while. One of the wonderful nurses, a long time ago, taught Michaela how to shoot a toothette (soft, sponge on a stick that you use when your mouth is too sore for the traditional toothbrush) out of a 30cc syringe, and today Michaela taught Grandpa how to do it too. They had a battle across the bed! I’m not sure who won in the end, I think we all just had a blast watching them sail through the air. Of course, Grandma can’t come empty handed, right! Michaela got a new “Hello Kitty” nitegown with matching panties. Grandma said that way she didn’t have to sit like a lady. We’ll see what Daddy has to say about that! Then we had another visitor! What a busy day!! A friend, that I used to work with years ago, paid us a surprise visit. She brought 4 beautiful red roses that were held in a budvase by a sweet teddybear. We had to leave the roses in the reception area, but the bear is sleeping with Michaela tonite. She also brought some arts and crafts to keep us busy for the rest of out stay! Then….after I went home…Tammy and Alyssa came up for a visit too. I think they brought goodies too, but I wasn’t there to check it out. I know Michaela loves having visitors and it sure helps the day go faster! This weekend was terribly long! Most of our friends are either out of treatment, in isolation for stemcell transplant or too sick to come out and play. BORING!!! Thank God for the nurses! Without them to play with, I think we would go mad!
Tomorrow, at 7:00, Michaela is scheduled to have her broviach removed. It is very convenient that it’s first thing in the morning because Michaela needs to fast before anesthesia. This way she’ll sleep through that part. We almost had to wait until sometime on Wednesday, but luckily there was a cancellation tomorrow! It is a simple, 5 minute procedure and hopefully she won’t be too uncomfortable after! They should put in an IV while she’s asleep and that will be out of the way too! Michaela is very frightened about this removal, but it really is necessary. I expect, eventually, she will handle this with her usual grace and bravery! She just needs to get used to having an IV placed and blood tests done the old fashioned way. Luckily, we are coming to the end of treatment and these won’t be issues for long.
Radiation is still in the planning stages…
I expect once the ball gets rolling, it’ll go fast so we can get this over with and off of our mind. We are running behind schedule at this point and need to get going full tilt.
I have no news on our wonderful friend Cristian, but he is still in the intermediate care unit. He never went to the intensive care unit, that was my mistake. Keep praying though, intermediate is no walk in the park either. Pray for his Mommy to get some much needed support. She is a very strong lady, but right now, she’s struggling emotionally and financially! This has been a major set back for Cristian and her. She’s feeling lonely and overwhelmed and needs your kind thoughts and prayers. Please keep her on your prayer lists!
The LUNCH FOR LIFE fundraiser has raised, as of last nite, day 12, over $67,143.00. I am grateful to all our supporters for seeing through with their 5 friends! We may never reach 1million dollars, but we’ve put a huge deposit into neuroblastoma research and support! My deepest appreciation goes out tonite! We can be very proud that we’ve made a gigantic difference in lives of many children with neuroblastoma in the future!
Thank you!
Sunday, October 12, 2003 9:45 AM CDT Hello Everyone,
For those faithful readers that don’t know, Michaela is back in HMC. She was admitted Friday afternoon for an infection in her broviac. Every time her line was flushed, she would spike a fever, get the chills and ache all over. Blood cultures from Kayla’s tube came back positive for bacterial infection. She is being treated with antibiotics and is feeling good. She’s walking the halls and getting hugs and lovin’ from the nurses who haven’t seen her in so long. At some point during this stay it’s time to take her tube out. This is the second infection Kayla has had in it and the doctors say it won’t be the last if it stays in. Kayla is not happy about it coming out, but she’ll be asleep and won’t feel a thing. Once it’s out, I think she’ll be much happier not to have to get a dressing change every other day, the skin on her chest will finely have a chance to heal up and not be so sensitive on account of all the tape on it all the time. We also had a chance to talk to Dr. Comito and pretty much decided to have Kayla’s radiation therapy done at Hershey. After discussing the pros and cons, we feel it’s the right decision, hopefully we’re right.
As a short little side note, Christian is on the floor with Michaela. He is in for an infection also. He’s in isolation and can’t come out of his room. As I was leaving yesterday, I stopped by his room and was talking to him thru the door. He looked great and was his usual devilish self. Kim called me this morning crying and said they moved him to intensive care. He took a turn for the worse and is having trouble breathing. Please friends, as you’re saying a prayer for Michaela, take an extra minute or two and say one for my little buddy Christian. I have to sign off now before I start ranting and raving about how much it s---‘- for these kids to have to go thru this crap! Later.
Thursday, October 9, 2003 10:38 PM CDT Well, here it is finally! I know…I’m lazy! No excuses here. Sorry though!
Michaela has been working very hard on her schoolwork, and enjoying every minute of it! Mrs. D comes over twice a week and she and Michaela work about 2 hours at a time. I am amazed, because I cannot keep Michaela’s attention for more than 10 minutes when it comes to homework! Then she also began going to school in her 2nd grade classroom 3 times a week with her new teacher Mrs. Adaire! She is very nice and Michaela enjoys her time learning with Mrs. A too! Hopefully, this time and work that she is doing will pay off when it’s time for her to return to her elementary school career! She is working very hard and I can see so much improvement in her reading and math! Her and Daddy are studying for a spelling test that she will take tomorrow!
The radiation is still up in the air. Dr. Neely is checking with John Hopkins to set up a consultation there now. It’s a long story, but to go to MSKCC we would need 2 consultations and it became a big old mess! Anyhow, Dr. Neely hasn’t been able to get in contact with the radiologist that he wants to consult with and is now away for the week. He took the number of the radiologist and us, so maybe we’ll get a call yet….
I am in no hurry to scurry back into treatment, but we can’t start the retinoic acid until radiation is completed. Another issue is school. It would be very nice if Michaela could return to school without still needing to run to HMC for radiation. She can return to school, unless something creeps up, on November 1st! The class also has a fieldtrip planned for Hershey’s Chocolate World and Zoo America in Hershey. The trip is for October 30th I believe and Michaela would love to go! Ironic isn’t it. It’s something that she really wants to do and it’s in Hershey! Crazy~
Sunday, October 5, 2003 7:41 PM CDT Hi everyone! I hope you all have been moved to send your lunch money to CNCR this week! Did you all pass the word to 5 more friends? Did you ask them to pass the word? Someone is doing the deed, because as of Saturday, over $15,000.00 has been committed by email! Thank you so much! We are well on our way! Let’s kick neuroblastoma in the a..! Let’s save another family from what you are witnessing Michaela go through! Please, please, do it for her, in her honor if you will! We are losing another brave chemo kiddo from my neuroblastoma family. He is slowly slipping away and is in terrific pain. It has to stop! If you want to meet some of my neuroblastoma heroes go to www. Beebo.info This cancer mom has a webpage that has pictures of dozens of the brave children fighting this frightening disease. It’s a beautiful tribute to them and gives a little information about each one. Michaela is there….
Now, on to our treatment issues. Health Guard was kind enough to approve 1 visit to MSKCC for consultation only. When I called MSKCC to inform them of the good news, that wasn’t good enough. They need 2 approvals, because they want us to see their oncologist as well. I talked to Dr. Neely and said that he would do what was necessary for us to feel confident, but he really felt strongly that a better approach would be to talk to John Hopkins. We had a good conversation and I think I understand better why MSKCC would not damage a kidney and HMC would. It is a matter of the area covered by the radiation. Do we want to spare the kidney and risk missing some pesky neuroblastoma cells? Or… Do we go after the neuroblastoma cells that might be lingering and risk the kidney? Tough call! Knowing that a relapse of neuroblastoma is practically a death sentence, I am now thinking we need to risk the kidney and get any and all possible areas of hiding neuroblastoma. The reason I am so concerned about the kidney is that if we relapse, what will the chemo do to the remaining kidney. No one knows for sure. Some kids are fine with one kidney. Everyone’s different. So that’s where we are at. Waiting on more info and praying to make the correct decision. Whatever we do, we need to get going.
Thanks for all the support, love, generosity and prayers. Pray for all cancer kids when you pray for Michaela. We are losing the battle one child at a time. Pray for the parents, grandparents, nurses and Doctors. Act on Lunch for Life. It is so simple. So important. So far reaching!
Blessings!
Kim
Wednesday, October 1, 2003 8:14 AM CDT Good morning everyone! I hope everyone is having a great day! We are here in the Mease house! I have a very exciting idea to introduce to everyone, but first I will give you the update on beautiful Michaela!
Michaela had a terrific time with Grandma and Grandpa Mease! She came home with a bag of goodies and something for everyone! It was like Christmas in October! The boys were very happy to see her and, of course, so were Dad and I!!!
The entire family is enjoying her good health and I for one feel like a whole new woman! I feel like the pre-neuroblastoma Kim, maybe even better! I still haven’t heard from Health Guard about New York, but I definitely should find out something today. In the mean time, I plan to continue grinning like an idiot and hugging the kids!!!
Here’s the skinny on this wonderful idea! A fellow neuroblastoma parent, Mark Dungan, came up with this idea in honor of his 2 year old Sydney. She has a webpage and if you would like to meet her go to http://www.sydneydungan.com
The idea is a fundraiser called “Lunch for Life” It is a grass roots effort to raise funding for research and awareness for neuroblastoma. JUST NEUROBLASTOM! Now, don’t get me wrong, ALL CANCER STINKS, but neuroblastoma is an animal all it’s own. It is terribly underfunded and never heard of until someone you love is diagnosed. Leukemia has a cure rate of up to 90nd I believe that is due in part to awareness! We need that for neuroblastoma! Right now the statistics are grim for us neuroblastoma battlers! I understand that at stage 4 the average success rate for our kids is only 10o 30It accounts for only 7f diagnosed pediatric cancer and yet 15f the deaths!! This is unacceptable! I know those of you reading this have already blessed us more than we could ever have imagined and we have felt the love and benefited from the financial support. I certainly wouldn’t ask for any more for us personally, but this is different. It will combine the efforts of thousands of people to benefit the future of children yet to be diagnosed. Maybe their battle won’t be so uphill! Everyone doesn’t have the love and support of friends and family and we can make a difference now!
Here’s my request…to everyone who is able and willing to help us yet again…
Don’t eat lunch out one day this week. Take the $5.00 that you would have spent and send it to the CHILDHOOD NEUROBLASTOMA CANCER FOUNDATION.
You can mail it to CNCF at POBox 6635 Bloomingdale, IL 60108
Or use this link and do it online. http://www.cncf-childcancer.org I promise this is a secure and reputable site. Pretty easy right? Here’s the harder, and possibly more important, part~ PLEASE ASK 5 OF YOUR FRIENDS TO DO THE SAME!!! This is how it will grow. Day 1 1 person asks 5 friends to donate 5 dollars Total: $25
Day 2 Those 5 people ask 5 of there friends to donate 5 dollars Total:
$125
Day 3 Those 25 people ask 5 of there friends to donate 5 dollars Total:
$625
Day 4 Those 125 people ask 5 of there friends to donate 5 dollars Total:
$3,125
Day 5 Those 625 people ask 5 of there friends to donate 5 dollars Total:
$15,625
Day 6 Those 3125 people ask 5 of there friends to donate 5 dollars Total:
$78,125
Day 7 Those 15625 people ask 5 of there friends to donate 5 dollars Total:
$390,625
Day 8 Those 78125 people ask 5 of there friends to donate 5 dollars Total:
$1,953,125
Day 9 Those 390625 people ask 5 of there friends to donate 5 dollars
Total: $9,765,625
Day 10 Those 1953125 people ask 5 of there friends to donate 5 dollars
Total: $48,828,125
Quite a loft goal, I know, but we can do it! Right? The key is to do it. It boils down to that! Let’s do it! Please…
Please send me your feedback! If you were able to help or if I am asking too much, Please let me know! Leave us a message or email me privately!
Please remember, this is in honor of the kids fighting right now. I do not benefit from this personally. I will keep you updated on the fundraising progress regularly as I update on Michaela’s progress.
Sincerely!
Monday, September 29, 2003 6:05 PM CDT Hello everyone! We had a very nice weekend and the high point was Eric’s 16th birthday party yesterday! HAPPY BIRTHDAY ERIC!!! The Mease Family got together and had a very nice time. The ladies had a few cocktails and good conversation while the boys had beer and football and nascar racing! I can’t believe Eric is 16 already! I hadn’t realized how fast Aunt Sandy was aging! Ha Ha, love ya San!!!
Today was a great, terrific, wonderful, joyous~ you get the idea right~ day! Dr. Neely got the results back on Michaela’s bonemarrow biopsy and it showed NO EVIDENCE OF DISEASE! NEDNEDNEDNEDNEDNEDNEDNEDNEDNEDNEDNEDNEDNEDNEDNEDNED
Isn’t that a lovely word? I love typing that! Think I’ll do it again!
NEDNEDNEDNEDNEDNEDNEDNEDNEDNEDNEDNEDNEDNEDNEDNEDNED
Here’s where we are now, as I understand it. Her bonemarrow is clear. Now, that means no EVIDENCE of neuroblastoma. There may be some hiding out in there, but the biopsy couldn’t find it. It is as good as it gets! There will never be a better answer!! It is something to celebrate!!! The Cat scan was also clear. There was no distinguishable tumor. Again, just because we can’t see it, doesn’t mean it’s not there. We have to stay vigilant with our prayers! The news is the best we can get with this disease. I’ll take it without complaint, so you know it’s good!!
Our next step is still radiation and it will hopefully be done at Memorial Sloane Kettering in New York City. Dr. Neely faxed the request for referral to Health Guard today and it was received. I expect an answer tomorrow. Let’s hope it’s a yes.
Michaela is staying overnite with her Grandma and Grandpa Mease tonite. She left around 10:00 this morning and has spent a fun day of visiting friends of Grandma and Great Aunts and Uncles. Michaela is having a super time. I haven’t heard yet, but I think they were going to do some crafts and baking. I hope Michaela brings me some cookies! I wouldn’t be surprised if she ate them all, she loves to snack! Grandma stocked up for her visit today, but I think she’s shocked by just how much our girl can eat!
Well, it’s time for the boys to get their bath and settle in for bed time. Mom and Dad too!
We love you all and are grateful for the love, prayers and support! We never would have made it this far with out everyone’s kindness!
Thursday, September 25, 2003 9:42 PM CDT Well, we had a good day at clinic today! It was quite a busy and crazy day, but unfortunately, that’s not unusual. It would be great if there were slow days, but pediatric cancer just keeps coming it seems. I hate to see new faces. It is especially sad on the floor when you see new faces. Being seasoned veterans, we know what these families are in for. Unlike us, they may not have the support, love and prayers going out daily to them. God Bless them!
Yesterday I received a lot of validation from my online supportgroup for neuroblastoma parents about my radiation concerns. It seems that while some parents were warned about kidney issues, few were told to expect
Eventual renal failure. They gave me the courage and information that I needed to address my concerns. I was given the phonenumber of the head of radiology at Memorial Sloane Kettering, in New York City. I called her at 4:15, spoke to her receptionist/secretary and left a detailed message for her. Her name is Dr. Susan Wolden. She returned my phone call by 4:23…the same day! She was a very pleasant women who sounded as knowledgeable as I expected. She was very willing to consult with us and was willing to do it today. She said that they, as I knew, radiate the neuroblastoma tumor bed and DO NOT LOSE KIDNEYS! I believe she said they’ve done radiation on 186 patients this year in that area with no kidney issues! Imagine that! Dr. Neely was much more receptive to getting a second opinion. He wanted to send us to John Hopkins and wasn’t bothered that I already made arrangements at MSK. He hopes we find a comfortable plan for Michaela there, but if not, will send us to John Hopkins to get a 3rd opinion. He disagrees with Dr. Thomas and doesn’t think the kidney needs to be in jeopardy to the degree that Dr. Thomas
does. Unfortunately, radiation treatment is very subjective to the person applying it. If you believe the kidney will probably be damaged anyway what is the point in avoiding that damage? If you expect not to damage it, I believe, you would try harder to avoid it. Follow me? If you do, I don’t know how. Sometimes my thought circles confuse me!!!
Unfortunatly, we haven’t gotten answers to the questions that I emailed Dr. Neely on Monday, but that’s okay. It was crazy in clinic and who knows what was ahead of us on the calendar.
The bonemarrow biopsy is done in two parts. The first is a bonemarrow aspirate and the second is the actual biopsy. The aspirate is looked at by the oncologist, Dr. Neely, at clinic. It is an indicator of what to expect, but not as exact or accurate as the biopsy. The aspirate looked good to Dr. Neely. He believes he was able to get a good sample and HE didn’t see any neuroblastoma in it. Now we wait for the biopsy. The results should be in Friday or Monday.
Michaela was a little uncomfortable tonite and I did give her Tylenol. She is resting on her heatingpat tonite. Hopefully, tomorrow she will feel back to normal.
That’s all for now folks! Keep praying, God is listening!!!!
Wednesday, September 24, 2003 7:31 AM CDT Dear Group,
Michaela is 7 years old and has completed her stemcell transplant and is on day +63. Our next treatment steps are radiation and retinoic acid. Her MIBG scan is clear as of July and a CT scan from 9-11 detected no cancer. A bonemarrow biopsy is scheduled for Thursday. The previous bonemarrow biopsy, in July, showed less than 1% neuroblastoma in the marrow. Her adrenal gland was removed during surgery and pathology found the edges clear, but neuroblastoma present in the adrenal gland itself. Her kidney was spared.
We met with the radiologist yesterday and were quite shocked to learn that despite the fact that her kidney was spared thus far, she will likely lose it eventually because they need to radiate the original tumor bed and there would be no way to avoid damaging it. This part sounds strange, but I swear it's true, the radiologist was almost disappointed that she still had the kidney! When he talks about damaging it, he means renal failure and the need to remove it later! My husband and I are very upset. To make matters worse, the Radiologist will only be in our hospital for the next 2 weeks. After that, I don't even know who will take care of her and I don't even know if they do! The radiologist now, says that he will plot her radiation and that is the most important aspect, so we shouldn't worry. I am worried!
I called her oncologist after the consultation and told him I was quite concerned. I explained that I agreed that radiation was necessary, but I needed to be convinced that our hospital was the best hospital to be treating Michaela. He was resistant to checking around. He said this is a commom issue with neuroblastoma when it originates in the adrenal gland and he felt any type of radiation would cause the same kidney damage. Reluctantly, he agreed to check out another facility and I am waiting to hear his conclusion. While I know that you can live with one kidney, I am disturbed to just call it a loss after care was taken to spare it during surgery.
I would greatly appreciate any input from parents who faced this issue during radiation. What type of radiation was used and were you also told to expect the loss of the kidney eventually? What did you do? Has anyone lost a kidney after radiation, due to radiation?
Sincerly,
Kim Mease
Mom to Michaela, Nicholas and Daniel (4 yr old twins)
Lucky wife of Dave for 10 years!
http://www.caringbrige.org/pa/michaelaann
Hello everyone! Above is a letter that I wrote to my neuroblastoma support group. They have been a great source of information in the past. I will update as I learn their opinions, the docs opinions and our decisions. This seemed like the easiest way to communicate our issues now with Michaela's treatment. Hopefully, the next journal page will be more light hearted!
Love you all! Keep praying!!
Sunday, September 21, 2003 2:11 PM CDT Hey friends! We haven’t had any exciting news or events lately, thus the lack of journal entries! I know it’s disappointing to check in and see nothing and I am sorry. I have my regular cancer kids that I check in on and I know that it’s a let down not to see new stuff to read.
Michaela is doing wonderful! She is down to one antibiotic at home by IV and she’s feeling great! Her brothers are driving her crazy, of course, but this is to be expected!
The boys are doing great in school and the teacher seems to really enjoy them. Do I sound surprised? Sorry….Anyway, Nick and Dan are thriving! Michaela’s tutor, Mrs. D. was on vacation, but we will begin that this week. I still have no arrangements made with Hambright. This is my fault, I had a meeting scheduled, didn’t write it down, and forgot. Way to go Mom!!!! Meanwhile, Michaela and I do school work here and there. I am not a very good teacher, but she is a great student, so it works out.
Dave is doing wonderful too! He is pretty excited because we had to get a new tv. Ours burnt out when we lost power during the hurricane/storm last week. I was actually able to get a bigger tv than we had before because it was the demo model so it was discounted quite a bit! Ya know I love a bargain! Dave is really enjoying playing with it and discovering all the extra functions!
Luckily, he likes fixing and figuring out things, because now the dryer won’t work. Of course I am EXTREMELY behind in the laundry and was going to start to get caught up today. No, really, I was!!!
Monday the visiting nurse is coming to take blood for bloodcounts. We haven’t needed anything in so long, I am not concerned.
Tuesday we meet with the radiologist. Hopefully, he’ll satisfy my concerns and have a plan that we all feel confident about!
Thursday we go to the clinic for a bonemarrow biopsy. This is the worst thing for a child to endure, that I know of, and the hardest to watch. She is placed under anesthesia and feels no pain and has no memory, but I am unable to leave the room. Just incase she were to wake up, I want to be there. It is difficult, but she has always had an easy time of it and suffered no discomfort after. Other children have had significant pain after the procedure and we need to pray that Michaela won’t suffer.
Blessings to everyone!
Tuesday, September 16, 2003 9:36 PM CDT Well, we're home at last! Thank you God! This was a rough infection for Michaela. The earpain was excruciating and the fevers got as high as 106 degrees way too often! On Sunday nite her blood pressure dropped to 65/30 and we were just about sent to the PICU, before she bounced back yet again!
Her ear has improved and the pain is gone. Her cultures that were positive, are now negative! The specific bacteria, that is in both lumens of her broviach haven't been identified yet and needs to be. We are home on IV antibiotics. They were giving her 3 different ones in the hospital, but were able to get it down to 2 at home. The home nurse came today and set us up. She gets gentamicin and cefapime every 8 hours. They run back to back and take about 40 minutes for each one. Very simple to do. The specific bacteria needs to be identified so that we can get off of the "gent". It is very hard on the kidneys (remember the problems during stemcell transplant when they thought Michaela was experiencing kidney failure?) and it is also hard on the hearing.(remember we already have hearing loss?) Dr. Neely feels they should have the answers within 24 hours. Let's hope that's real time, not hospital time or we won't know anything until next week! HAHA!
Keep praying for sweet Michaela! We now know just how fast she can get sick and just how bad it can get! Thankfully, it didn't get any worse and we are home reasonable quickly considering all the issues that she's faced. This was the first infection she's ever had a possitive culture.
I want to put a bug in everyone's ear and remind them about Kim Geyer and her bike ride for the Leukemia and Lymphoma society! She is so close to reaching her goal and I really want her to go into the ride feeling very supported and appreciated. This is no small thing that she is doing and is very important! Please email me if you would like more information about how to make a donation and show your support! I am ending with the letter that Kim sent out to local businesses seeking their support.
I’d like to let you know on October 4th of this year I’ll be participating in the CYCLEFEST CENTURY ride. This is a 100 mile bike ride. Even at a 15 mph pace, that’s about 7 hours on the bicycle! I have never ridden this much in one day and it will be a big accomplishment to finish this. You are probably thinking “WOW”, that’s a lot of miles to ride, but I am doing it for the Leukemia & Lymphoma Society and what people who have these diseases accomplish on an everyday basis is quite a greater feat. The diseases I am talking about are: Leukemia, Lymphoma, Myeloma, and other blood-related cancers.
Did you know? Every 5 minutes a child is diagnosed with Leukemia. Every 9 minutes an individual dies of a blood related cancer. In one hour, 12 children are diagnosed with a blood related cancer and 6-7 individuals die.
This year, I have the honor of riding for Michaela Mease & Ashley Kaufman. Michaela is a 7 year old girl and the daughter of my friend, Kim. She was diagnosed with cancer on December 16, 2002. When 1st diagnosed she asked, “mommy am I going to die?” She underwent Chemotherapy and lost all of her hair. She is scheduled for stem cell therapy this summer. Ashley is an 8 yr. old who was diagnosed with Acute Lymphotic Leukemia on March 2, 1999. When I think I will not be able to complete the 100 mile bike ride, I just think of what Michaela & Ashley are going through and that gives me the motivation to move forward. Unlike me, they don’t have a choice & have to battle these diseases everyday. I am happy to do this ride for them, and for all the victims, because the Leukemia & Lymphoma Society provides millions in research funding. Along with that, they offer the most comprehensive array of services available to patients & families.
I am personally committed to raising $3500, 25% of which will be used to cover expenses for my participation, and the other 75% going directly to the society. Anything above that amount goes 100% to the society. I have set a personal goal of $7000. That would mean that $6125 would go directly to the society. I feel I can raise this amount through the generosity of family, friends, co-workers, and businesses. I am asking you to join me in obtaining this goal. Please contribute as generously as you can and get the satisfaction & peace of mind knowing you are making a difference. For those of you thinking, “I can’t give very much, it wouldn’t matter,” I want you to know every little bit does matter & aids toward finding a cure for these diseases.
In closing, I’d like to return my pledges by the end of June, this will enable me to focus more on the physical training for the ride, but anything received after that date will be appreciated & sent on to the society. I’ve enclosed an addressed envelope for your convenience. Thanks for helping. If you wish to be kept up to date on my progress, please enclose your email address when responding. Thanks for helping!
Love and prayers to all,
Kim Geyer
Sunday, September 14, 2003 9:28 AM CDT Hi everyone. Unfortunately, I have to tell everyone that Michaela is in the hospital. She was a bit off yesterday, but not running a fever. She was resting and fell asleep for a nap and woke up with terrible pain in her ear and a fever of 100.9. We called Hershey and were sent to the ER. When we arrived, we were taken right away and they examined her ear first and discovered a very bad ear infection. She was still in terrible pain, so they gave her morphine and that made her much more comfortable. She asked for supper and was eating and watching tv comfortably for about an hour. When the pain returned, she asked for more medicine. While they were pushing the morphine she began trembling and became quite agitated. This continued for about another hour, until she vomited. When she got sick everyone became very concerned, to say the least. Michaela was saying things like “I hate cancer” and “I don’t want to be here” and “Why is this happening to me”. All these things are reasonable, of course, yet very out of character for her. Especially, with the hysteria. I felt she was having a reaction to the morphine and demanded ativan. This is a medicine that calms fears and is used often before procedures. It worked quickly and our girl was back. Her temperature was taken and it was now 103. She got Tylenol for the fever, and between the Tylenol and the ativan, she again felt good. Watching tv, eating Doritos, and drinking gingerale. About an hour later we went for a chest xray and finally to our room. The xray is fine and all her cultures, urine and blood, are still clear. She began IV antibiotics and fluids. She spent a comfortable night on Tylenol with codein and morphine.
This morning her temp was 41.8 / over 105. Her cultures are still negative and her pain is under control. After a dose of Tylenol, her temp has come down to a reasonable 38.8 / 101.8. She has gotten sick and will be staying in the hospital until she is under control with pain and fever free. Probably through Monday.
Prayer got us through everything up til now, Please continue. Don’t forget the boys as they are upset by this as well.
Thursday, September 11, 2003 8:27 PM CDT Thanks for checking in everyone! Today was a very busy day! Nicholas and Daniel were sick, so they couldn’t go to school. PaPa Miller watched them until 2, then Steph took over. Nicholas had a very rough nite with a lot of coughing and said he was too sick for school. He had fun with Papa and Steph though!
Michaela did wonderful at the clinic today and her blood counts were about the same. They aren’t recovering as quickly as we’d all like, but we’ll get there. She still is doing all the recovery on her own. No transfusions or neupogen shots! The CT scan, although unpleasant for Michaela, went well. It is computerized so Dr. Neely was able to look at it right away. He sees no change from the last one and is going to consult with the radiologist to confirm. There is still an area of concern on her lymph node and the other area in question is in her chest cavity. It is assumed that that is simply scar tissue, but I am trying to push for a more definitive answer. Michaela gave a urine sample which would also be a good indication that the neuroblastoma isn’t actively growing now. We won’t get the results back for about a week, I think. We will be doing a bonemarrow biopsy next week as well. This is of the most interest, because of the 1% that was still hanging around when we had the last biopsy! Hopefully, the amount hasn’t increased! If it has not, the next step is radiation. Dr. Neely feels we should only radiate the area around the removed adrenal gland. To radiate the entire area that had neuroblastoma would cause too many problems. Curviture of the spine, slow growth overall, and diminished ability to make blood cells. It turns out that 50% of bloodcells are made in the spine. Didn’t know that one…. Since we are already dealing with the issue of slow blood cell growth, that wouldn’t be good! Again, he will be consulting with the radiologist to make a plan and get us going on our next step to completing treatment!
I asked Dr. Neely how he would label Michaela’s disease at this point. He said she is experiencing a good, partial remission. That’s awesome, considering this little girl had them all scratching their heads wondering how to treat her. Her disease was so progressed! Maybe, Lord willing, the next time I ask, we’ll here that she is NED!
(no evidence of disease) That’s my dream, prayer, hope, wish, goal, focus……...
Wednesday, September 10, 2003 8:21 PM CDT Happy Wednesday evening everyone! I know I haven’t updated in a while, but there’s not been much to say. Saturday was so extraordinary, I think we are still a little shell-shocked! So much fun and love in one day! Now we are back to normal! Still lots of love, but not as much fun!
I want to take advantage of this forum and tell my husband how much I love him! We will be celebrating our 10th anniversary tomorrow! I hate that we share the day with such a terrible tragedy! Everyone should be as happy as we are together! So much loss occurred that day and I imagine this is a sad anniversary for too many people. I’ll never forget that day and remember that, like the rest of the nation, it was a time of anger and fear for our family! We didn’t celebrate our anniversary that year, we just watched the television and cried. This year, I will remember the innocence our nation lost and the brave heros who went in while others tried to get out. Too many, didn’t make it and I will remember their families too. We will celebrate our anniversary this weekend and I am so looking forward to it! Our family has been through a difficult year and our marriage has never faltered. I am so proud of my husband and his uncanny ability to pull us through problem after problem! His kindness and sense of humor are priceless! My Dave is a quiet man, but anyone that knows him, knows that he is the head of our family and does only what is best for us. I am the mouthpiece, but he is the heart! I thank God that when Michaela grows up, she will look for a man like her Father. She could do no better. And our sons know what real men are and how they treat their loved ones. Their wives will be very lucky if they aspire to be the man their Daddy is!
Tomorrow is important for another reason too. Michaela has her first Ctscan since before her transplant. I don’t expect any surprises, but with Neuroblastoma, one never knows! Our last scan was clear except for one lymphnode that was questionable. It didn’t “glow” on the MIBG scan so it was dismissed as nothing to be concerned about. Let’s hope that assumption was correct!
Until later, Here’s to no an unchanged scan…..
Monday, September 8, 2003 10:50 AM CDT Hello friends! Boy, did we have a wonderful day!! Michaela was so thrilled and completely enjoyed her day! The total amount received for our family was $13,337.00. That is 16 Mortgage payments that will not be a concern for us. Being a family that has lived from paycheck to paycheck since we’ve had children, this is a very new experience for us! I can’t believed how blessed we have been with our friend’s and family! Your kindness and generosity is second to none! Ever since Nicholas and Daniel, Wreck and Wrinkle to Uncle Bob, were born, we have been astounded by our friends. Sometimes on a daily basis! From fundraisers at Armstrong to anonymous donations we were always looked out for through the twins’ prematurity and complications from it. Now, with Michaela fighting for her life with neuroblastoma, we are on the receiving end again. It’s been said that you find out who your true friends are in times of crisis. A lot of friends, who don’t know how to handle your sadness and daily crisis, fall by the wayside. Not our friends! You took the bull by the horns and did what needed to be done! We’ll always remember receiving meals when we would have been to busy to cook, getting cards and notes and phonecalls on a regular basis to encourage us, gifts for Michaela and the boys to cheer them and remind them how much they are loved! Raffles, subsales, anonymous donations to our fund kept a roof over our head, literally for 9 months now. People say they don’t know how we do it. Having a child with cancer is horrible, but we have been blessed in every other way imaginable. I say how could we do it without all of the support we’ve been blessed with? We couldn’t. Something would have to give. Michaela has continued to thrive! Despite the chemo, surgeries and various hospitalizations, she has remained a spirited child that is full of life. She feels the love and values the gifts. She knows she is special and knows that other people think that she’s special too! All children should feel as loved as ours do! What a gift you have given us. We thank you all from the bottom of our heart!
Now, let me tell you how much fun we had! Have you ever been to a better pigroast? Not me!! How ‘bout the D.J.? Charlie Hager did a beautiful job. He kept us all on track with the activities and still managed to play great music. The auctioneer worked very hard to keep the ball rolling. There were over 80 items, donated by some dear friends! Did the volunteers, that worked so hard all day, look tired to you? You bet! By the end of the day they were exhausted. Some of these people never even met our family before! Beautiful!!!! We thank you all! From the limo to the portapotties, Roberta, Jana and Ken pulled together a glorious event and will never know the true depth of our appreciation.
I know, I am rambling! I can’t help it! I can’t say enough…..
THANKYOU ALL! WE LOVE YOU!!
Monday, September 8, 2003 10:48 AM CDT Hello friends! Boy, did we have a wonderful day!! Michaela was so thrilled and completely enjoyed her day! The total amount received for our family was $13,337.00. That is 16 Mortgage payments that will not be a concern for us. Being a family that has lived from paycheck to paycheck since we’ve had children, this is a very new experience for us! I can’t believed how blessed we have been with our friend’s and family! Your kindness and generosity is second to none! Ever since Nicholas and Daniel, Wreck and Wrinkle to Uncle Bob, were born, we have been astounded by our friends. Sometimes on a daily basis! From fundraisers at Armstrong to anonymous donations we were always looked out for through the twins’ prematurity and complications from it. Now, with Michaela fighting for her life with neuroblastoma, we are on the receiving end again. It’s been said that you find out who your true friends are in times of crisis. A lot of friends, who don’t know how to handle your sadness and daily crisis, fall by the wayside. Not our friends! You took the bull by the horns and did what needed to be done! We’ll always remember receiving meals when we would have been to busy to cook, getting cards and notes and phonecalls on a regular basis to encourage us, gifts for Michaela and the boys to cheer them and remind them how much they are loved! Raffles, subsales, anonymous donations to our fund kept a roof over our head, literally for 9 months now. People say they don’t know how we do it. Having a child with cancer is horrible, but we have been blessed in every other way imaginable. I say how could we do it without all of the support we’ve been blessed with? We couldn’t. Something would have to give. Michaela has continued to thrive! Despite the chemo, surgeries and various hospitalizations, she has remained a spirited child that is full of life. She feels the love and values the gifts. She knows she is special and knows that other people think that she’s special too! All children should feel as loved as ours do! What a gift you have given us. We thank you all from the bottom of our heart!
Now, let me tell you how much fun we had! Have you ever been to a better pigroast? Not me!! How ‘bout the D.J.? Charlie Hager did a beautiful job. He kept us all on track with the activities and still managed to play great music. The auctioneer worked very hard to keep the ball rolling. There were over 80 items, donated by some dear friends! Did the volunteers, that worked so hard all day, look tired to you? You bet! By the end of the day they were exhausted. Some of these people never even met our family before! Beautiful!!!! We thank you all! From the limo to the portapotties, Roberta, Jana and Ken pulled together a glorious event and will never know the true depth of our appreciation.
I know, I am rambling! I can’t help it! I can’t say enough…..
THANKYOU ALL! WE LOVE YOU!!
Monday, September 8, 2003 8:17 AM CDT Hello all! We are having problems!! Please check out past journal entries for sunday's journal entry! Thanks
Monday, September 8, 2003 8:13 AM CDT Hello friends! Boy, did we have a wonderful day!! Michaela was so thrilled and completely enjoyed her day! The total amount received for our family was $13,337.00. That is 16 Mortgage payments that will not be a concern for us. Being a family that has lived from paycheck to paycheck since we’ve had children, this is a very new experience for us! I can’t believed how blessed we have been with our friend’s and family! Your kindness and generosity is second to none! Ever since Nicholas and Daniel, Wreck and Wrinkle to Uncle Bob, were born, we have been astounded by our friends. Sometimes on a daily basis! From fundraisers at Armstrong to anonymous donations we were always looked out for through the twins’ prematurity and complications from it. Now, with Michaela fighting for her life with neuroblastoma, we are on the receiving end again. It’s been said that you find out who your true friends are in times of crisis. A lot of friends, who don’t know how to handle your sadness and daily crisis, fall by the wayside. Not our friends! You took the bull by the horns and did what needed to be done! We’ll always remember receiving meals when we would have been to busy to cook, getting cards and notes and phonecalls on a regular basis to encourage us, gifts for Michaela and the boys to cheer them and remind them how much they are loved! Raffles, subsales, anonymous donations to our fund kept a roof over our head, literally for 9 months now. People say they don’t know how we do it. Having a child with cancer is horrible, but we have been blessed in every other way imaginable. I say how could we do it without all of the support we’ve been blessed with? We couldn’t. Something would have to give. Michaela has continued to thrive! Despite the chemo, surgeries and various hospitalizations, she has remained a spirited child that is full of life. She feels the love and values the gifts. She knows she is special and knows that other people think that she’s special too! All children should feel as loved as ours do! What a gift you have given us. We thank you all from the bottom of our heart!
Now, let me tell you how much fun we had! Have you ever been to a better pigroast? Not me!! How ‘bout the D.J.? Charlie Hager did a beautiful job. He kept us all on track with the activities and still managed to play great music. The auctioneer worked very hard to keep the ball rolling. There were over 80 items, donated by some dear friends! Did the volunteers, that worked so hard all day, look tired to you? You bet! By the end of the day they were exhausted. Some of these people never even met our family before! Beautiful!!!! We thank you all! From the limo to the portapotties, Roberta, Jana and Ken pulled together a glorious event and will never know the true depth of our appreciation.
I know, I am rambling! I can’t help it! I can’t say enough…..
THANKYOU ALL! WE LOVE YOU!!
Monday, September 8, 2003 6:41 AM CDT Hi Everyone,
This is just a test. We seem to be experiencing tchnical difficulties. We wanted to update about the pigroast but couldn't get anything posted. If this works today, an update will follow soon. Thanks for your patience.
Sunday, September 7, 2003 7:39 PM CDT Hello friends! Boy, did we have a wonderful day!! Michaela was so thrilled and completely enjoyed her day! The total amount received for our family was $13,337.00. That is 16 Mortgage payments that will not be a concern for us. Being a family that has lived from paycheck to paycheck since we’ve had children, this is a very new experience for us! Your kindness and generosity is second to none! Ever since Nicholas and Daniel, Wreck and Wrinkle to Uncle Bob, were born, we have been astounded by our friends. Sometimes on a daily basis! From fundraisers at Armstrong to anonymous donations we were always looked out for through the twins’ prematurity and complications from it. Now, with Michaela fighting for her life with neuroblastoma, we are on the receiving end again. It’s been said that you find out who your true friends are in times of crisis. A lot of friends, who don’t know how to handle your sadness and daily crisis, fall by the wayside. Not our friends! You took the bull by the horns and did what needed to be done! Raffles, subsales, anonymous donations to our fund kept a roof over our head, literally for 9 months now. People say they don’t know how we do it. Having a child with cancer is horrible, but we have been blessed in every other way imaginable. I say how could we do it without all of the support we’ve been blessed with? We couldn’t. Michaela has continued to thrive! Despite the chemo, surgeries and various hospitalizations, she has remained a spirited child that is full of life. She feels the love and values the gifts. She knows she is special and knows that other people think that she’s special too! All children should feel as loved as ours do! What a gift you have given us. We thank you all from the bottom of our heart!
Now, let me tell you how much fun we had! Have you ever been to a better pigroast? Not me!! Because of everyone’s donations of time, energy and talents, yesterday was a success! Some of these people never even met our family before! Beautiful!!!! We thank you all! From the limo to the portapotties, Roberta, Jana and Ken pulled together a glorious event and will never know the true depth of our appreciation.
I know, I am rambling! I can’t help it! I can’t say enough…..
THANKYOU ALL! WE LOVE YOU!!
Sunday, September 7, 2003 7:32 PM CDT Hello friends! Boy, did we have a wonderful day!! Michaela was so thrilled and completely enjoyed her day! The total amount received for our family was $13,337.00. That is 16 Mortgage payments that will not be a concern for us. Being a family that has lived from paycheck to paycheck since we’ve had children, this is a very new experience for us! I can’t believed how blessed we have been with our friend’s and family! Your kindness and generosity is second to none! Ever since Nicholas and Daniel, Wreck and Wrinkle to Uncle Bob, were born, we have been astounded by our friends. Sometimes on a daily basis! From fundraisers at Armstrong to anonymous donations we were always looked out for through the twins’ prematurity and complications from it. Now, with Michaela fighting for her life with neuroblastoma, we are on the receiving end again. It’s been said that you find out who your true friends are in times of crisis. A lot of friends, who don’t know how to handle your sadness and daily crisis, fall by the wayside. Not our friends! You took the bull by the horns and did what needed to be done! We’ll always remember receiving meals when we would have been to busy to cook, getting cards and notes and phonecalls on a regular basis to encourage us, gifts for Michaela and the boys to cheer them and remind them how much they are loved! Raffles, subsales, anonymous donations to our fund kept a roof over our head, literally for 9 months now. People say they don’t know how we do it. Having a child with cancer is horrible, but we have been blessed in every other way imaginable. I say how could we do it without all of the support we’ve been blessed with? We couldn’t. Something would have to give. Michaela has continued to thrive! Despite the chemo, surgeries and various hospitalizations, she has remained a spirited child that is full of life. She feels the love and values the gifts. She knows she is special and knows that other people think that she’s special too! All children should feel as loved as ours do! What a gift you have given us. We thank you all from the bottom of our heart!
Now, let me tell you how much fun we had! Have you ever been to a better pigroast? Not me!! How ‘bout the D.J.? Charlie Hager did a beautiful job. He kept us all on track with the activities and still managed to play great music. The auctioneer worked very hard to keep the ball rolling. There were over 80 items, donated by some dear friends! Did the volunteers, that worked so hard all day, look tired to you? You bet! By the end of the day they were exhausted. Some of these people never even met our family before! Beautiful!!!! We thank you all! From the limo to the portapotties, Roberta, Jana and Ken pulled together a glorious event and will never know the true depth of our appreciation.
I know, I am rambling! I can’t help it! I can’t say enough…..
THANKYOU ALL! WE LOVE YOU!!
Sunday, September 7, 2003 7:25 PM CDT Hello friends! Boy, did we have a wonderful day!! Michaela was so thrilled and completely enjoyed her day! The total amount received for our family was $13,337.00. That is 16 Mortgage payments that will not be a concern for us. Being a family that has lived from paycheck to paycheck since we’ve had children, this is a very new experience for us! I can’t believed how blessed we have been with our friend’s and family! Your kindness and generosity is second to none! Ever since Nicholas and Daniel, Wreck and Wrinkle to Uncle Bob, were born, we have been astounded by our friends. Sometimes on a daily basis! From fundraisers at Armstrong to anonymous donations we were always looked out for through the twins’ prematurity and complications from it. Now, with Michaela fighting for her life with neuroblastoma, we are on the receiving end again. It’s been said that you find out who your true friends are in times of crisis. A lot of friends, who don’t know how to handle your sadness and daily crisis, fall by the wayside. Not our friends! You took the bull by the horns and did what needed to be done! We’ll always remember receiving meals when we would have been to busy to cook, getting cards and notes and phonecalls on a regular basis to encourage us, gifts for Michaela and the boys to cheer them and remind them how much they are loved! Raffles, subsales, anonymous donations to our fund kept a roof over our head, literally for 9 months now. People say they don’t know how we do it. Having a child with cancer is horrible, but we have been blessed in every other way imaginable. I say how could we do it without all of the support we’ve been blessed with? We couldn’t. Something would have to give. Michaela has continued to thrive! Despite the chemo, surgeries and various hospitalizations, she has remained a spirited child that is full of life. She feels the love and values the gifts. She knows she is special and knows that other people think that she’s special too! All children should feel as loved as ours do! What a gift you have given us. We thank you all from the bottom of our heart!
Now, let me tell you how much fun we had! Have you ever been to a better pigroast? Not me!! How ‘bout the D.J.? Charlie Hager did a beautiful job. He kept us all on track with the activities and still managed to play great music. The auctioneer worked very hard to keep the ball rolling. There were over 80 items, donated by some dear friends! Did the volunteers, that worked so hard all day, look tired to you? You bet! By the end of the day they were exhausted. Some of these people never even met our family before! Beautiful!!!! We thank you all! From the limo to the portapotties, Roberta, Jana and Ken pulled together a glorious event and will never know the true depth of our appreciation.
I know, I am rambling! I can’t help it! I can’t say enough…..
THANKYOU ALL! WE LOVE YOU!!
Wednesday, September 3, 2003 2:35 PM CDT Hello everyone! Thanks for stopping by! We have had a wonderful week so far! Here are just some of the hi-lites!
On Tuesday morning, Susan Shapiro from WGAL 8 came to the house and interviewed Mom, Dad and Michaela. They got video of the kids playing together with playdough at
the coffee table and of Michaela and Susan looking at and discussing her make a wish aquarium. Susan first interviewed Michaela and I think Michaela was a little gun shy at first and didn’t really do much more than give one word answers. She takes after her Daddy that way! Susan was wonderful and very patient as she sat on the floor in the livingroom, prying answers out of Michaela while the video rolled! She didn’t seem to mind at all, and I was quite relieved! Then came Mom and Dad’s turn to talk. Well, I guess you know already who did most of the talking and just a little crying when Susan asked what we wanted for Michaela. Life seemed the obvious answer, right? I got personal and said my fondest wish was to see Michaela grow up and be a mommy. That’s when I lost it…. I’m sure they’ll edit it out, thank goodness. It was quite a blessing to brag publicly about Michaela and how brave she’s been and to thank everyone we could think of for all the love and support. That, I hope doesn’t get edited out!
Then we were off to our clinic appointment and after some hubbub got video of Michaela getting her blood drawn by Nurse Lois. Dr. Comito then came in and examined Michaela on camera. That really brought out the giggles!!! When Michaela got a passing grade from the doc, it was time for her interview with Susan Shapiro. Dr. Comito was very nice to permit the interview and although very busy, did her best to answer all the questions. We are very grateful!
Michaela, again, was able to leave the clinic without transfusions and she doesn’t need any shots at home either!!!! YIPPEE!! We will go back on Monday and get counts again. It is almost time for the radiation to begin, but first there are tests that need to be done. Michaela needs a bonemarrow biopsy, a CT scan and possibly another MIBG scan. Dr. Comito is working on getting these things scheduled and I expect she’ll have our appointments made when we go back on Monday! Don’t forget, anyone interested in volunteering for the pigroast on Saturday is meeting tomorrow at the Knights of Columbus at 6:30. Michaela and I hope to be there!
until tomorrow…..Love you all!!!
Monday, September 1, 2003 9:52 PM CDT Just a quick update this evening! Thanks everyone for checking in on Michaela over 10,000 times!!! I think you all are wonderful and I appreciate the good wishes and prayers.
The new intoduction is a country music song on the radio now. It is the closest way for me to explain how it feels to watch Michaela when she's not feeling well, for whatever reason, in the hospital. Most recently, the stemcell transplant. She is doing wonderful and I guess the streets are crowded enough, Thank God!! It is a beautiful song and the closest description of what goes through the minds of parents of a child with cancer!
Tomorrow is a big day. WGAL is coming to the house to interview Michaela and then coming up to Hershey to interview Dr. Comito! What a star we have! She's my little diva! I will let everyone know when it will air, but I am sure it will be in the morning news. Say extra prayers again tonite for good counts tomorrow. That would be 4 in a row and maybe we could move along with the radiation soon. Let's get it over with!!!!
Don't forget the pigroast!! We are so excited! Michaela can't wait to ride in the limo and see all her supporters! It will be a wonderful opportunity to thank everyone and let you all know, in person, how much we love you!
Until tomorrow, Good nite and God Bless!
Thursday, August 28, 2003 8:25 PM CDT Hello everyone! We had another great clinic appointment today at Hershey! Michaela didn’t need any blood or platelets and she still doesn’t need to get the shot that kickstarts her whitecell procuction!
We are going back for blood counts on Tuesday! What a nice long break!!!
I want to take some time to talk about the pigroast. The Miracles for Michaela pigroast will be held on September 6th at The Knights of Columbus in New Danville. Tickets must be purchased in advance so there is a good head count. It is important that they have enough food and beer, right!!! Tickets are available and cost $20 for adults, $10 for children and Free for children under the age of 10! There will be an auction, Queenie the Clown will be in attendance, Jack Hubley’s apprentice will be there with animals, a DJ, and of course a moon bounce!!! Our friends have worked very hard soliciting donations and wonderful surprises to be raffled off! I am overwhelmed and humbled by the love and support! This is bigger than I ever dreamed, and to think, it’s all about celebrating Michaela!
I feel awkward about this entry and hope nobody takes offense by this open invitation. My goal tonite is to make absolutely sure that all our friends know about it and are able to be in attendance if they choose to! I am looking forward to seeing all the people that have loved and prayed for us all these months, and many for our whole lives! It will be a terribly busy day, because there are 300 tickets available. I really hope we are able to meet our new friends and spend quality time with our good ol’ friends and family! The party is only 6 hours long! Aren’t we fortunate that so many people love us that I’m afraid that we won’t get to talk to everyone!?
If anyone would like more information, directions or tickets, please email me and I will do what I can to help out.
Until next entry, thank you all and please keep praying!!! God is listening to all of us!
Saturday, August 23, 2003 11:20 AM CDT Hello everyone! I am sorry that we haven’t updated in so long! I have no excuses, just laziness to explain it. We went to the clinic on Thursday and had pretty good counts and were able to avoid the dreaded transfusion! Since then we’ve just been hanging out and pretending to be a normal family.
Most of you know Aunt Kath and some of you know that we are a lot alike. We both ask a lot of questions. The latest batch of e-mailed questions made me think. While I was typing my email and answering her questions the best that I could, I realized that many other people would probably like to know the answers too. I saved the email and today’s entry will be that e-mail. Tomorrow I will have a more Michaela filled entry because she and her brothers are going to a picnic today. I am sure there will be lots of interesting stories to tell about what Daddy and I did while they were gone. HAHA, only kidding. I’ll email people personally about those adventures…..
Kath!
Ask away and I'll do my best to answer.When will they determine if the transplant was a success? It is a success. She lived and is making new blood cells. Just not efficiently. The chemo is what kills the cancer, the stemcell saves her life from the lethal chemo. What makes the transplant a success is that she's alive,ya see?They determine NED by another MIBG scan ( which didn't lite up the last time anyway), by a catscan ( which was clear the last time except for the lymph node which they didn't think was cancer anyway) and by the bonemarrow biopsy. The bonemarrow biopsy was what they had the most concern with. Remember it showed less than 1% neuroblastoma, but it was still there. We can't do another bonemarrow biopsy until her bonemarrow recovers and begins to work efficiently again. That will be a while. There just aren't enough cells to check, especially when the neuroblastoma is such a small percentage of it to begin with. Here's where it gets tricky. The next step (not decided on for sure) is retinoic acid. That usually isn't started until radiation is finished. Radiation can't really begin until the bonemarrow works well again. That is because they will (probably) want to radiate along her spine (the original tumor site) along with where her adrenal gland was. A good pecentage of bonemarrow is made in the spine and radiation would be detrimental to that process. So we wait a little while longer and pray really hard that the neuroblastoma isn't gaining momentum while we wait.By the way, retinoic acid is a taken orally and has no major sideeffects. It supposedly goes after microscopic neuroblastoma cells. We need to have a CT and MIBG and biopsy to determine that it is still only microscopic. If, for some reason, it isn't, then we must be very agressive. These are just a few of the reasons that our fear sometimes takes over. While we wait, as much as possible, we need to hold on to the fact that we are home and together, that she hasn't gotten an infection, she eats and drinks, and isn't in any pain. Some people don't even get this far with out so many other problems. Too bad patience isn't one of my personality traits.....I think I am gonna copy this and put it in her webpage today. Other people probably want to know too or they think we are all done.Don't be afraid to ask me anything. Sometimes I may get cranky, but it's not you. Sometimes I just can't think anymore, Ya know?
Love,
K
Tuesday, August 19, 2003 8:16 PM CDT Hello! All is well at the Mease household! Tonite we had surprise visitors. Emily and Alyssa came over for a while so their Mom could kick butt at a volleyball game. The girls helped us rearrange the livingroom furniture (get em working young, that's what I say!) until their Daddy came to get them. Then, of course, Michaela wasn't ready to say goodbye, so she went to their house for an hour! Oh to be young! Dad and I had to stay here and finish cleaning up the livingroom! Darn....
On Monday, when we went to the clinic, Michaela needed a platelet transfusion. We were there from 1 to 4, not too bad I guess, but it sure seemed longer. Michaela must be in an examroom for the entire time because of all the people. In the transfusion room, we were able to watch videos at least. Not in the examroom. We had to amuse ourselves so we did a little school work. Her kidney and liver tests were good, so we are still off IV fluids at home. Yeah!!!! Her red blood counts were getting low, so I expect a packed red cell transfusion on Thursday. That is our next appointment. I expect an even longer visit this time. Red cells take longer than platelets....
Until tomorrow, or whenever, thank you all again! You are wonderful folks and we love you all!
Sunday, August 17, 2003 5:19 PM CDT Hey everyone! I thought I'd surprise everyone by updating early. Really, the reason is that this house is tired tonite and if we wait there may not be an update today.
Michaela is still feeling great! Aunt Kath and Aunt Lori came to visit today and brought presents for Michaela from our friends at The Beach Comber in OC, BJ, Nick and Barbara! The boys also got presents for their birthday. It looked like Christmas in our living room. The kids had a great time!
Grandma and Grandpa Mease came over a short while later and they too brought presents! Wow, people sure are treating us good! We had a really nice visit and Grandma and Grandpa seemed very happy with the progress that Michaela has made since they were last able to see her in the hospital! She really does look great!
Tomorrow, Kay and I go to Hershey Clinic for another check on her blood counts. It is quite likely that she'll need platelets and maybe even packed red cells too. We'll see. Again, I hope this is a quick trip!!!!
Michaela finally was able to visit with her friend Alyssa today too. It wasn't a long enough visit to suit either of the girls, but they did enjoy spending time together. I think they are already making plans for tomorrow evening!
Tonite's supper menu is Grilled Pork Chops, Corn on the Cob, and Angel Hair Pasta with parmesean sauce. Yummy! Michaela is waiting patiently. Let's hope this supper hits the spot! It's sad watching her disappointment when things don't taste as they should to her. It will pass, but hopefully sooner than later!
Thank you all for you support and kindness! I love to see how many people are in Michaela's corner rooting for her! I am so proud of her and the only thing that compares to my pride in her, is my heart felt gratitude to our friends and family! Thank You!!!!
PS Dave will be trying to get new pix on the photo album tonite. Check back later!
Saturday, August 16, 2003 5:22 AM CDT Good Morning,
Sorry there was no update last night but everyone was tired. As you know, Kayla was up at Hershey yesterday for blood work. All of her counts looked good. She didn’t need a transfusion of red cells or platelets. Her kidney function seems to be getting back to normal, so we could stop the overnight fluid infusions. We also don’t have to start those nasty old Nuepogen injections, hopefully we won’t have to. Kayla’s next trip to Hershey is Monday for counts again. She’ll be going up a couple of times a week until her counts settle.
Kayla continues to be doing very well and has returned to being her old self. I think the mac and cheese tasted pretty good to her, especially when she asked for some more after her shower and dressing change. Kayla sat at the table last night doing school work while her brothers did some arts and crafts. I know it stinks thinking about school while all the other kids are enjoying their summer, but we have to try and keep her up to speed. Kayla missed the tail end of last year and she’ll be out at least till the end of October.
Once again, thanks to everyone for your thoughts and prayers during this trying ordeal, They are greatly appreciated! That’s all for now, till next time, Ta-Ta.
Thursday, August 14, 2003 10:52 PM CDT Hello to everyone! Michaela is doing great and We are so happy to be all back together at last! Nicholas and Daniel went to school today, Daddy went to work and Kay and Mommy had a quiet day at home! Michaela is quite happy to be home. We were going to work on schoolwork, but when she realized that she’d have to leave the recliner, she decided that she wanted one more day to just do nothing. Can’t say I blame her!
This evening for supper Michaela picked B.L.T.s and they just didn’t taste right to her. It really stinks that her taste buds aren’t how they used to be, but we’ll keep trying to find something that tastes good. Tomorrow, we’re trying homemade macaroni and cheese with stewed tomatoes. Wish us luck!
We have an appointment in Hershey at 11:00 tomorrow. They’ll check her blood counts and urine levels. Maybe we’ll be able to stop the fluids overnite if the urine levels are good. She might need platelets or packed red cells, but that’s no problem. Piece of cake! I expect to be rushed in and out as quickly as possible because of her compromised immune system. I am going to enjoy that! We’ve spent way too many hours waiting in the clinic. I guess stem cell transplants are good for something….only kidding!
That’s all for now guys! We’ll catch you up tomorrow on any news! Thanks for all the prayers and good thoughts!
Wednesday, August 13, 2003 8:04 PM CDT Hello To Everyone,
Big, big, big news! For everyone who didn’t hear, Michaela is HOME!!! That’s right, she’s home. Sorry we weren’t broadcasting for a few days but we were experiencing technical difficulties. Kayla is doing just great. Her kidney function is almost back to normal. She was so excited to leave today that she helped us pack the bags. The last few days you can see a world of difference in Kayla, she is acting like her old self again.
I can’t tell you how good it feels to have the whole family at home at the same time. It’s been 30 days since we were all together. Hopefully now we can get back to somewhat of a normal routine. Kayla needs to be on fluids for 10 hrs. a day for at least the next two days. We had a visiting nurse at the house tonight to show us how to start the fluids running and how to use the pump. After seeing it done in the hospital so long, we picked up on it in no time. Kayla is due back at Hershey on Friday morning for blood counts. She will continue to make the trip for counts a couple of times a week until her body starts to bring the counts into normal range by itself. Until then, we may have to give Kayla an injection of Nuepogen here and there to help them along. Don’t tell Kayla about that, we haven’t told her that part yet, not until we’re sure she needs it. That’s it from this end, talk at ya later.
Sunday, August 10, 2003 8:26 PM CDT Hello from Michaela’s room,
Current Blood Counts:
WBC……..7.5
HGB……..10.3
HCT……...30.8
NEUT…….80
PLTS……...56
ANC………6000
All blood counts look really good. Platelets are still low, but that is expected. Michaela is feeling better today, she did get a little medicine for upset belly this morning but has been drinking ever since. Now if we can only get her to eat some more. The doctors were in this morning and said that they wanted to give Kayla a fluid boost. Even though she’s drinking well, she’s still playing catch up and may be a little dehydrated. We were done with most of our daily routine by 11:00 so we have some time to relax before completing the list.
As far as coming home tomorrow, that’s a no go. It seems we ran into a setback. This afternoon it was discovered Kayla’s kidney function was elevated. So, it’s a few extra days to rule out possible causes, and treatment if something is found. It could just be a delayed reaction from all the antibodies Kayla received. If it is that, it should clear itself up in a couple of days. That’s what we’re hoping for, we didn’t come this far to now have to deal with kidney damage. Kayla seems a notch better than yesterday. We were laying on her bed today and agitating each other for a while. But please remember, these few moments of Kayla acting like her old self are between long hours of her not wanting to be bothered and getting upset when she needs to do something. Those long hours are getting shorter, and more pleasant, but they’re still there and they make for a very long day. We’ll let ya’s know what’s going on with the kidneys tomorrow night, till then.
Saturday, August 9, 2003 9:12 PM CDT Hello from Rm #7260,
Michaela is doing very well, I think you’ll see how good by the end of this entry. Let me say that it did my heart good to walk into the room last evening, after not being up since Monday, and have Michaela break out into a big smile and start laughing. After having a crappy day, it really lifted my spirits. Michaela and I had a quite night and were in bed by 9:30. Right after her daily morning routine, Kayla decided to play a trick on dear old dad. She got this look on her face and started yelling for the bucket. For those of you who don’t know, when Kayla yells bucket, it means she’s going to be sick and you better get something for her to get sick in – quick! I was running around the room trying to find her pail (she has 2 for just such emergencies) and couldn’t find one. I went back to Kayla’s bedside to get her in the bathroom quick and she was sitting in bed smiling. When I looked at her in my confused state, Kayla started rolling on the bed laughing her little butt off. Pretty funny making dad go nuts that early in the morning, but at least she’s acting more like herself and it’s good to hear her laugh.
The rest of the day was spent getting our daily chores done, which I’m glad to say were completed with some spare time for Kayla to sneak in a nap. The daily doses of Neupogen were stopped yesterday along with the morphine. Kayla did complain of pain late this afternoon and did receive a dose of morphine, but she’s off the constant drip. Kayla continues to munch on saltines (8 today, 4 yesterday) and did very well drinking water and Yahoo. Kayla did get platelets today, but according to the doctor, since the neupogen was stopped, the platelets should start taking off soon. Michaela looks great and gets a little better each day. As far as Monday goes, haven’t heard anything. On the other hand, Kayla did receive a lot of high fives from the nurses in both the west and south halls as we were taking our walk tonight. That’s about it for now, see ya’s later.
Thursday, August 7, 2003 8:30 PM CDT Hello everyone! Michaela is doing very well and is still on track to be released on Monday. Her counts are recovering very well and I thought tonite I would give you all some bloodcount information.
NORMAL MICHAELA
White blood cells--5.5 to 15.5 8.2
Hemoglobin---------12 to 18 10.4
Hematocrit---------30 to 36 30.1
Platelets----------150 to 350 16 (NOT A TYPO)
As you can see Michaela's stemcells are grafting very well except for her platelets. I am told this is the last area to improve. When we come home, we will need to make 2 to 3 trips a week for platelet transfusions. She will probably need packed red cells (hemoglobin and hematocrit), but not as often.
Michaela had some yoohoo chocolate drink and some saltines today. Her appetite isn't back, but noone seems to concerned. With what her body has been through it is to be expected. We also walked outside and relaxed in the hall with Lisa, Chad, Tucker and Baby Taylor for a while. That was very nice. Michaela's favorite thing is to hold the baby! Mine too!!!
Kay is coming around slow and steady! She is anxious to come home and is working really hard to be well enough to get released! I am so very proud of her!
Thanks for the prayers and please keep em coming!
Tuesday, August 5, 2003 8:16 PM CDT Hello from Hershey~! Michaela is doing well and may still be able to come home on Monday! Her white blood count is up to 3.2, she is fever free, in minimal pain and still has a good bloodpressure. Today she was able to eat an oreo cookie and drink some yoohoo chocolate drink! I am hoping her appetite comes back before she comes home, but they say she can come home on IV nutrition. I would love to avoid that, but we'll do what we need to do. Easy does it!
It is still difficult to get Michaela motivated to do anything other than rest in bed and it has me concerned! I don't want to be a bad guy and push her too hard, but if she doesn't get herself up and around she will get weaker. That means I am driving her crazy. We were able to get all the mouth care and breathing treatments done, but through it all, she's growling at me to leave her alone. It's hard to see her so lethargic, but it is to be expected with all she's been through. She went for 2 short walks in the hall this evening, but gets very tired quickly. We need to build up her strength slowly. All of our friends were excited to see her up and around and she had quite a cheering section welcome her as she walked out her door for the first time. I think it made proud of herself (as she should be) when everyone was cheering her on. I know that I was proud! My girl is amazing! Thank god for bringing her through this!
Sunday, August 3, 2003 7:26 PM CDT WE’RE COMING OUT OF THE DANGER ZONE!
Hello everyone and thank you for keeping up on Michaela’s progress! I am sorry that we don’t update more often, but it can be time consuming and we get lazy on the weekends it seems.
On Saturday, Michaela’s white blood cell count improved to .3!
Today, Michaela’s white count is up to .8! Needless to say, we are quite excited. This is what the doctors have been waiting for and we are told that things should get better quickly for Michaela now. Keep in mind that a normal white count is 4.5 to 13.5, so we do have a way to go yet. I will be much more positive when Michaela is awake a little bit more than she is now. Right now, it is difficult to get Michaela to do anything more than lay in bed. She doesn’t want to talk to anyone (including her parents) and she has no interest in anything. I am sure that this will pass as she has more time to recoup from all the side effects and blood loss. Hopefully, she’ll soon show interest in food. As of now, she still is drinking very well and keeping it down. Rumor has it that if she continues to improve Michaela will be released a week from Monday. It’s obviously not written in stone, but it is a starting point to look forward to. Her blood pressure is under control now and her fever isn’t running too high anymore, and she doesn’t seem to be in as much pain as she was. It seems the pain she does have may be from the bed. Dr. Comito ordered her an air mattress to put on top of the hospital mattress and Daddy says she is much more comfortable. Her lungs sound clear to Dr. Comito and none of her cultures have come back positive for infection. These are all wonderful signs of a perfect outcome. I am just waiting for my Michaela to FEEL good.
Keep praying for us! We have been blessed with such wonderful people supporting us and keeping us in their hearts!
Thursday, July 31, 2003 7:49 PM CDT Well, hello from Hershey Medical Center, Room 7260
Today was an interesting day. It seems to be the exact opposite of yesterday. Today's bloodpressures were good and her fever was very low. There are other issues that seem to have resolved themselves and I can't even explain them. I'm not sure that I even understand them. Anyway, medically Michaela has improved! Now, from a Mother's point of view, I feel that Michaela had a better day on Wednesday. She is more uncomfortable, extremely trembly and not quite as content as she was yesterday. She received 2 platelet transfusions today and oxygen when asleep. Now, here's the good Michaela signs. She took a nice, long, hot bath. After the bath, she sat in the chair and watched about 3 hours of television. And she is still enjoying samples of beverages out of her 10cc syringes. Between milk, strawberry milk, iced tea and water Michaela has probably taken in at least 7 ounces today.
How's that for a rollercoaster ride? Luckily, we are at the stage where there finally seem to be more ups than downs. Thank God!
Until tomorrow, Keep Praying!
Wednesday, July 30, 2003 9:09 PM CDT Hello! Tonite's message will be somewhat confusing and I am sorry. We're a bit confused too. I will give you all the information that we have. Here goes...
Most importantly, Michaela is acting more like herself today. She is yelling at the nurses, Dad, Mom, anyone who does anything to her that she's not happy about. Who can blame her. After what she's been through, she's earned the right to be a little difficult. At least she's not too feverish and lethargic to complain. She is drinking through a syringe. She enjoys squirting chocolate milk, Koolaid, water and iced tea into her mouth. She's probably drank another 5oz today that way. Her morphine was increased slightly today so that she won't need to push the button on her pump as often and so far it is working out well. Kay spent alot of time sitting up today watching tv and videos and even did some physical therapy.
Now, here's the clinical perspective. This is where it gets confusing. Dr. Comito is pleased with Michaela and in her opinion expects the white blood count to improve by TOMORROW. She voiced no concerns to Dave about anything today. Everything is going well and as expected. Dr. Powell,who is new to Hershey, voiced considerable concern over Michaela's blood pressure. I don't know Dr. Powell, but I assume he must be good or Hershey wouldn't hire him, and I like him. He is very open and honest and unrushed. Maybe he is overly concerned, but I am glad he voiced his concern to us. I wish all the docs would respect us enough to have open communication. We can, have and will handle anything that they have to say. There are other symptoms of concern and they point to the possibility of sepsis. simply put, a blood infection. It is serious and requires immediate intervention and everyone is on the alert. Michaela would be moved to the PICU. We don't want that! Another concern is her lungs. When your white blood count is non-existant your body doesn't produce puss and lungs can look clear when they aren't.
The xrays that are clear now, may show pneumonia when her white count comes back. The nurses are hearing "crackles" when they listen to her lungs and Dr. Powell is considering sending Kay for a CT scan. He is being very cautious and won't send her for one unless he feels it's absolutely needed. This would require her to leave isolation as would sepsis. This can be dangerous and it is being avoided as long as possible.
Now, you know what we know. One thing we can't forget is that God is taking care of Michaela tonite and everynight. We just need to keep thanking him for carrying us all through this trial. He will continue to guide her care and keep us strong. I believe that.
Tuesday, July 29, 2003 8:15 PM CDT Hello All,
Day +6,Day 15 overall.
Michaela had a great day today! Michaela's fever came down to normal last night once her anti-fungal IV was done running after after spiking to 106 degrees. She made it to 5:30 this morning when we finally gave her another dose of tylenol because it was starting to climb again. When nurse Heather came in at 7:15 this morning, Kayla was sitting up watching cartoons. Kayla continued to be up most of the day, with a nap short nap thrown in here and there. This afternoon Kayla drank about 5 oz. of water, that's the first she's really drank since last week. Tonight I even got a smile and some giggles out of her. Brightened my day right up.
I was talking to Dr. Comito today and she was saying that probably around Friday Michaela's counts should start on the upswing. I'm looking forward to an even better day tomorrow, it was so nice hearing my little girl laugh again. Maybe tomorrow she'll even ask for something to eat! Here's hopeing. Talk at ya's tomorrow.
Monday, July 28, 2003 8:47 PM CDT Hello All,
I know I said I wasn't updating after 9:00 P.M., but it's been a little bit hectic here in Rm 7260 tonight. Michaela has been fighting a high fever all day, this evening it spiked to 106 degrees. Kayla was started on the anti-fungal meds and given Tylenol, her fever finally started to come down around 8:30. At last temp. check she was 101.5 degrees, which I will gladly take. Kayla looks alot more like my little girl than she did even an hour ago. Kayla was started tonight on yet another anti-biotic because the lining of her is starting to peel off. This is expected with such a high dose of chemo as Kayla has gotten. It seems that Kayla is srarting to swallow somewhat better, not great but better. Hopefully her mouth is starting to heal.
Before Kim and I brought Kayla into the hospital for transplant, we were discussing the possibility of going to another hosoital that does things alittle differenty. We didn't want to go anywhere else because we liked the staff at Hershey and were very satisfied with treatments so far. When you're going thru this though, you have to look at all the factors involved. Our decision to stay at Hershey was backed up this afternoon. Being in the hospital as long as we have been, you get to know alot of staff. Not just doctors and nurses, but regular staff who keep this place running. As I was walking back in after a walk today, I ran into a woman who runs the cash register in the cafeteria that we have gotten to know. She asked how Michaela was doing and said she thinks about her and prays for her everyday. Then she gave me a hug. Way too much time spent in the hospital. Till tomorrow night, so long!
Monday, July 28, 2003 8:06 AM CDT Morning Everyone,
As you know by now, I didn't get a chance to update last night. Well, I had the chance but I was too tired to, it's very tiring sitting in this room watching Michaela sleep. We're at Day +5 after the transplant and Day 14 in the hospital overall. Michaela's condition remains the same as all weekend. The doctor's tell me there is nothing unusual about her case. Kayla continues to sleep most of the day and only gets up to go to the bathroom. She is still running a very high temperature and doesn't seem to be responding to the antibiotics. Nurse Heather said this morning that they may try an anti-fungal infusion today but nothing is written in her chart for it yet.
We're hoping that by weeks end we are out of this stage of the treatment. I know we were warned about how this was going to go, but still, nothing really prepares you. I'm going to try and get Michaela up long enough for a bath and a dressing change this morning. I know already that's not going to go over very well. That's about it for right now, once again I'm going to try and update tonight, if you don't see new information by let's say 9:00 P.M., it's not happening my friends. Till tonight! (Maybe!)
Sunday, July 27, 2003 9:29 AM CDT Good Morning,
We're here once again live from HMC. I wanted to update last night because I know alot of you are following Michaela's progress, but frankly, I was too pooped to pen anything. Kayla's condition remains about the same, feeling pretty crappy. She did have a few bright moments in the day, toward evening she took a sip of apple juice. That's the first time she drank in I don't remember. Later on she asked for some Cherrio's, she didn't acually eat any but I took it as a good sign that she asked for food.
Kayla continues to sleep most of the time. Right now she is getting a blood transfusion and later this afternoon she'll probably get platelets. Today when Kayla clears her throat, the mucus doesn't sound as thick, so hopefully she's on the mend. Kayla continues to be in a great deal of pain but she is dealing with it like everything else so far, like a trooper. The doctors say that Kayla is running on course and that the week after transplant is the period that is going to be the roughest for her. So hopefully by late this week her counts will start to climb and she'll be feeling better. I'm going to try and update again tonight but no promises! Till later, keep praying!
Saturday, July 26, 2003 8:25 AM CDT Good Morning. Okay, I am no longer in denial. Michaela is very sick and will continue to get sicker. I decided to get this entry done this morning, because I finally stopped crying and Dave is staying with Michaela today and overnight. I expect he will be exhausted tonite, as he was last night. Now, understand that I don't cry in front of Michaela....just every other opportunity I got. The bathroom, the cafeteria, the hallway, by the icemachine, and especially the van. These are my emotional get aways. Never in front of Michaela. I am clinging to the hope that she doesn't know exactly how sick she is, due to the doses of morphine.
Here's what's happening. She has mucusitis. That is when, due to the chemo, the lining of her mouth, tongue and esophogus sloff off. This is very painful and leaves the area raw and bleeding. It is expected and pain control is the goal at this point and is being achieved through morphine. She began getting it only when she asked and now is on a continuous small dose with a pump that is under her control. In addition to the basil dose, she can push a button and receive another small metered dose as often as every 6 minutes. The idea is that she has control and doesn't have to wait and the pump has a memory on it so the medical staff knows how much pain she is with out asking. They can see how often she pushed the button and how much time passes between pushes. I am very happy with the set up and as I said, it is working pretty darn well. Michaela sleeps ALOT. The more she can sleep through the better!
Last night, she showed signs of needing oxygen when she's sleeping. She is now getting blow-by oxygen to take care of that. She received packed red cells yesterday and last night she received platelets. Since she is unable to swallow anymore she is now on PINS AND LIPIDS. (high calorie iv nutricion). Hopefully, these things combined, will keep her from becoming too week.
Pray Please and Thank you
Thursday, July 24, 2003 8:04 PM CDT Hi Everyone,
The last two bags of stem cells were transplanted today at 1:00. Once again, Kayla slept thru the whole ordeal. Kayla got up this morning no problem, but I could tell she wasn't feeling too good. Kayla is starting to complain of a sore mouth and throat, it was expected but we were hoping to skip that side effect. She received a couple of doses of morphine to try and ease the pain, plus one more mouthwash was added to her daily routine. Because of the soreness, Kayla hardly ate anything all day long and slept most of the day. Kayla is being a real trooper and trying all different ways of taking her pills morning and night, she's having trouble getting them down and then keeping them down.
As of this morning, Kayla's counts were at rock bottom and tomorrow we're expecting a transfusion. There's nothing to do now but to try and keep her as comfortable as possible, wait for the counts to start to climb, and pray that the transplant takes. Kayla is borderline for a fever, which is expected. Treatment goes as with all her other fevers, antibiotics. It's going to be a trying next couple of days as Michaela gets over yet another hump in her treatment. As parents, we're so proud of what this little girl has gone thru, put up with, and pretty much just accepted as being just one chapter in her life, it's just unbeleivable.
Michaela has small windows of feeling almost good. Mom and dad, plus the nurses, can get a smile every once in a while, but right now, they're few and far between. Because right now Michaela isn't feeling up to company, and the fewer people in the room the better, until further notice, please call before coming to visit. Hopefully Kayla will bounce back as quick as she has with other treatments and will be feeling better to see people soon. That's it for tonight folks, keep those prayers coming! Thank you.
Wednesday, July 23, 2003 9:32 PM CDT Hello Everyone,
Well folks, we're broadcasting live here from Hershey Medical Center. Today was Day 0 for our little angel. Michaela started out her day in high spirits. Right off the bat this morning she was playing tricks on nurse Heather. Michaela's daily routine went along smoothly, she had to have all her morning tasks done today by 1:00. The transplant went along very smoothly. Michaela slept thru most of it, the nausea pre-meds knocked her out. The odor of the preservative in the stem cells that we were warned about wasn't all that bad, we hardly noticed at all (until you got close to Kayla and talked to her). Kayla received 5 bags of stem cells today and will receive the remaining 2 tomorrow around 11:00 A. M.
This evening Kayla is a little wore out and just laying in bed resting. She has had some bouts of sickness, let me tell ya, that's when you really notice the preservatives. Not real pleasant, especially when you have to be close to try and confort your daughter. So far, things have been running smoothly with this stay. Hopefully, they will continue to do so. Kayla has spent 9 days here so far( our longest yet if I'm not mistaken), with somewhere around 4-5 weeks to go. The first week didn't seem that long so maybe( I said maybe) the rest will fly by. We would like to post a poem that was written for Michaela. I think we'll post it in 2-3 days when the stem cell transplant is over and things settle down and there's not much to report. Talk to ya's later.
Tuesday, July 22, 2003 7:31 PM CDT WELCOME TO A DAY IN ROOM #7260
7:30 WEIGH IN
BREAKFAST
8AM MEDICINE
BRUSH TEETH AND MOUTH CARE
BATH AND BED CHANGE
BROVIAK DRESSING CHANGE
11:30 MEDICINE
LUNCH
BRUSH TEETH AND MOUTH CARE
SUPPER
BRUSH TEETH AND MOUTH CARE
8PM MEDICINES
BRUSH TEETH AND MOUTH CARE
GOODNIGHT MICHAELA
Well friends, that's it. Doesn't sound too complicated does it? We've got it down pretty well and there is lots of visits (through the door mostly) and phonecalls throughout the day. We've been really lucky that Michaela has handled this chemotherapy as well as she has. There is still some vomiting and she is flirting with a fever, but all in all, no major problems. The nurses are awsome and childlife and the volunteers take great care of us. I keep asking when the ugly mouthsores will start. I just dread it so bad. I've tried not to think about it and I think I was in denial when they tell me that the worst is yet to come, sO I did a little research myself. I looked at another boys experience through his Mother's eyes and it confirmed what we've been told. Day 1 (Thursday) through day 11 will be quite painful with mucusitis/mouthsores. There is still a chance that it won't happen, but this chemo combo is notorious for mucusitis. Hopefully, the nurses and docs will continue to keep Michaela as pain free as possible with morphine as soon as it is needed. If you'd like to read about his experience, his webpage is
http://www.simonsplace.org
The actual transplant will begin tomorrow @ 1:00. Michaela will be given benedryl, tylenol and anti-nausea medicine before it begins. It basically is just like getting a transfusion except the doctor stays with her throughout the process monitoring her and the nurse will stay in the room for the next 6 to 8 hours. The reaction she has, if any, will be to the preservative used to freeze the cells, not the cells themselves. It can be severe, but it's unusual to have a reaction besides vomiting once or twice. From tomorrow on, anyone in Michaela's room, except us, will need to wear a gown and mask to protect her from illness.
Please pray extra tonite for Michaela. This is it. This is what she's worked towards since December 26th. IT HAS TO BE SUCCESSFUL! IT's hard for me to accept that for as hard as she's fought, we are again at a life and death intersection. It comes down to this.....
God Bless Michaela!
Monday, July 21, 2003 7:28 PM CDT Hello to all,
I'm going to be fast with this update because there's a storm rolling thru. Michaela continues to do well today. I was talking to her on the phone and she sounded great. Kim tells me that Kayla is running a fever at times. Hopefully, antibiotics will take care of it as usual. I'll have to find out tomorrow what the protecal is in Kayla's situation. We're at Day -2 and counting down to the BIG day. Kayla continued to have some periods of sickness today but was still eating non-stop. You go girl!! Kim didn't mention what Kayla's counts were doing, She might not have gotten the results back yet. Tomorrow will be another day of rest for my little girl, after all she's been thru, she deserves it.
I pray to God that this fever doesn't set our timetable back, I want Kayla home as soon as it's safe for her to be home. Kayla doesn't complain, but it is really a crappy way to spend a summer. Hopefully one day she'll forget this one. That's it for tonight, tune in tomorrow!
Sunday, July 20, 2003 7:21 PM CDT Hi Folks,
Here we are at Day -3 and we're celebrating. No more chemo for our little angel. (God willing, forever!) Chemo ended today about noon time as scheduled. Kayla had a pretty relaxed day. She got up at 7:45 for weigh-in no problem. She ate breakfast and went thru her daily routine with no complaints, amazing! Kayla did get sick twice in the morning and asked for another med. after the first one she got didn't relieve the upset stomach. As a test to my angels stamina, she got sick, and before I was out the door to get a nurse to check it(all output must be documented,yeech!), Kayla was already eating again. Even though she has gotten extemely high doses of chemo, at least she's holding the same pattern as with previous treatments.
Kayla had a nice long nap that lasted just about all afternoon. When she did get up,she was her old self, asking if dad would go to McDonald's for her.(Until I got back, she was still going to chow on the lunch tray that she slept thru. Whatever you want sugar!) We did ask what was happening with Kayla's blood counts, but so far, they were only worried about the sugar issue, which is still normal. Tomorrow they will draw to see where Kayla's CBC's are at. Overall picture, Kayla's doing great and right on schedule. Unfortuatly, the worse has yet to come. We're at the point now where Kayla's blood counts are going to bottom out and than start to go back up once the stem cell transplant takes place.
Kayla still doesn't mind spending the whole time in her room, hopefully it stays that way! We (I should say Kayla) has a long way to go. I will say, that after spending the weekend there that the time does go pretty fast. Kayla is being such a trooper thru this whole ordeal, I don't know what to say. Everything they are doing right now she seems to take as being normal. Most of the time no complaints, let's just get it over with and carry on. I'm still amazed at what a seven year old will consider being no big deal. I often think of how I would be in the same situation and there isn't no way I would be coping with it so well. Kayla makes me stronger by being so strong!
Gotta go now, I'm getting misty! Will fill everyone in tomorrow night. Hopefully there won't be too much to report!
Saturday, July 19, 2003 8:45 PM CDT Hello to all,
We're at Day -4 and counting down. The little problem last night with the sugar count has been cleared up. One of Michaela's nightly meds was cut back and her sugar level continued to drop thru the night. Our day started out kind of "blah", Kayla complained of upset stomach, didn't want to eat or drink anything, and got sick a couple of times. Like a trooper, she did get up for nurse Heather and get her daily weigh in, blood pressure check, and temp. Around mid morning we decided to try a different med. for nausea. That really did the trick. Kayla was up and ready for mom and the boy's visit, she seemed 100% better than yesterday. Kayla acually spent the rest of the afternoon sitting in the rocking chair, snacking and watching T.V.
Chemo should stop running around noon time on Sunday. After that it's just rest time till Wensday(Day 0) when the stem cell transplant will take place. Kayla and I enjoyed a very relaxing evening laying in bed and talking(and clowning around of course, which did this old dad's heart good that she was feeling good enough to clown around), and watching T.V. Kayla is in a peaceful sleep right now, she must be feeling better today because this is the first she's slept since 8:00 this morning! Kayla also appears to be in a better frame of mind these last two days and hasn't given me any hassle about taking meds., her bath, or getting up early for weigh ins. Hopefully this will last! Will talk to ya's tomorrow night, bye for now.
Friday, July 18, 2003 8:11 PM CDT Hello Friends,
We're at Day -5 and counting down. Michaela was feeling somewhat better today. I acually got some laughs out of her and some small periods of clowning around. Still not the happy go lucky kid. I think I'd better clear something up that I wrote last night. I said that I hoped Michaela's bad day yesterday was due to the chemo because that's done in two days and she'll start to feel better. I need to clarify that statement, Kayla won't feel better physically, that's a long way off, but I think she'll feel better emotionally once they get most of the tubes off that she's dragging around. For a normal chemo visit(whatever that means!) Kayla has two IV tubes connected to her broviac, right now she has four, and there might be another one or two stuck in there somewhere that I'm missing. That's alot of plastic to drag around every time you want to go to the bathroom, let alone getting it caught on table legs and under doors! Two more days!!!
I got to meet the new oncology doctor on the staff here at Hershey. Don't ask me his name because time here just kind of blurs. Michaela's glucose is alittle bit elevated. The nurse had to recheck it by a finger prick because they thought maybe they were getting a false reading thru the broviac, no such luck. The doctors are deciding now what to do about it, it will go back down by itself once the chemo stops, but that's not for awhile, some adjustments need to be made. Will keep you on top of the situation. Kayla's sleeping right now, and seems to be doing so peacefully, I'm about ready myself. This sitting around in one room all day can take it's toll. Talk at ya's tomorrow night.
Thursday, July 17, 2003 6:46 PM CDT Hello Friends,
Well, it's Day -6 and today was a bit harder for our angel. Kayla is continuing to get the high dose chemo. Three more days of it before a period of rest. The boys and I didn't travel up to the hospital tonight bacause mom said that Kayla wasn't feeling up to the commotion. Kim said that Kayla was feeling, well, kinda blah, all day long. I got a call at 7:30 and Kim said she couldn't talk long because Kayla wanted to cuddle. I got on the phone with her and she says she feels OK, but by the sound of her voice I tend to think different. I hope tomorrow brings a better day for her.
I'll be going up to the hospital tomorrow to relieve Kim and let her spend some time with the boys while trying to regroup after being in Kayla's room this week. Kim said that Kayla ate a pretty good supper, so we don't know if her blahs are due to the chemo or being cooped up. I hate to say it, but I hope it's the chemo. The chemo will be done in three days and she'll feel better. If it's because she's stuck in her room, she's got a long way to go. That's about it for now, I'll fill everybody in tomorrow night on what's going on. See ya's!
Wednesday, July 16, 2003 8:29 PM CDT Hello To All,
I,m hoping this is going to be a short entry because it's 9:30 and I just got the boys to bed and haven't eaten supper yet. Anyway, here it is day -7 of Michaela's stem cell transplant. The boys and I arrived at Hershey about 5:45 to visit with mom and Michaela. I was told that the high dose chemo started at noon. I don't know how she doesn't get all tangled up more than she does with all the IV tubes running to her broviac. Kayla was wound tight as usual and glad to see her brothers. It seems Katrina from Child Life must have visited today. Kayla has all kinds of arts and crafts to keep her mind off of the long day. I saw that mom has a schedule made out to follow on the white board in Kayla's room, I saw that brushing her teeth was listed often to hopefully cut down on mouthsores.
So far, not being able to leave the room doesn't seem to bother Kayla, I hope she stays that way without going stir crazy! Kayla loves to roam the halls and visit with the nurses so much it may become a problem later! We got the papers on all the different chemo drugs they are using for this treatment; nasty, nasty stuff. Kayla has been such a trooper thru this whole process that you can't be anything but proud of her. What these kids go thru everyday astounds me and makes my problems (other than dealing with Kayla having cancer) seem trivial. Until tomorrow night, so long!
Tuesday, July 15, 2003 7:43 PM CDT Hello Everyone,
Well, we finally made it to Hershey for the big stay. We got to the hospital about 1:00 (close to being on time, thank you very much!) Michaela was excited about being there and was glad to see all her friends. Both Tucker and Christian are in at this time- Christian right next door. After getting everything wiped clean that we brought with us ,we were ushered into the room. After that, it was just kick back and relax, nothing else major going on today.
Child Life brought a laptop computer to Kayla's room for her to use during her stay so she could play games and check up on this page. She went downstairs around 6:00 p.m. for a chest x-ray and for some reason got very upset, other then that little episode, she's been our cheerful little girl. The nurses are going to start an antibiotic drip, and then start a heparin drip, when they are done she's ready for the start of chemo tomorrow. The nurses want to keep a careful watch on Kayla's weight so that means daily weight checks. The doctors like to have these before 8:00 A.M., which means getting up before 10:00 A.M. as usual, good luck to the ever dedicated nurses on 7th West!
That's about it for tonight, will bring you up to speed tomorrow night on how our day went. See ya's for now.
Tuesday, July 15, 2003 7:45 AM CDT Good Morning! Today is the day! Michaela is still sleeping and the boys are at "school" so Mom and Dad have plenty of time to wash clothes and get packed. We will be at Hershey Med. by 1:00. Ready and raring to go. I am under the impression that we will have a pretty easy day today. They'll probably begin fluids and other meds, but not the chemo. That will start tomorrow, I hope. It will be nice to make one final visit to the cafeteria for supper and a visit with our friends there, before we are limited to the 7th floor. Our friends, the Haas's will be there until Wednesday and there is a new addition to their family that I am anxious to hold. Her name is Taylor and I am told she is beautiful!
For the rest of the week, the plan will be for Dave to come home at night to be with the boys. In the morning, they will go to school and Daddy will go to work. After work, Dave will pick them up and come visit with Michaela and Mom for a bit, before heading back home. I'm really going to miss the guys, but this seems to be the best plan. We will need to adjust that plan if and when Michaela begins to not feel so well. Keep the boys in your prayers as they adjust to this major change in their lives. They have been through alot as well and handled it all very well, considering!
Friday, July 11, 2003 8:44 PM CDT Hello to all of Michaela's followers,
Michaela is doing super. It's Friday night and Kayla's down the street staying at her friend's house. Tonight Kayla had a special night. Our friend Nicole decided to cook us a special supper before we went to Hershey. Michaela was chowing down on king crab legs and steamed shrimp, it just doesn't get any better. Our final weekend at home together as a family is quickly filling up with things to do. Michaela doesn't seem to mind having to spend at least a month in the hospital, I'm not sure she really knows how long a time that is. Kayla has made it thru all the nasty crap so far, I hope she has enough spunk to go thru this next step in treatment without too much discomfort.
With trying to get ready for an extended stay at Hershey, and keeping everyone in mind that loves our little angel, Kim and I would like to extend an invitation to anyone who would like to see Kayla. We found out that Kayla won't be confined to her room until her counts start to drop. That gives us a couple of days that she'll be able to leave her room in the evening when the floor settles down. Anyone that wants to see Michaela is welcome to stop by the house or visit in the hospital until her counts start to drop. We are planning to be home (and stay home) after 4pm on Sunday and our doors are open for company. No need to call, just stop by. In the hospital, ya might want to call and check on her counts just to be safe. It should take a few days for them to drop. It just gets overwhelming for mom and dad to try to keep up with her busy social schedule-haha.
Thursday, July 10, 2003 8:39 AM CDT Hello to our friends, old and new! Stemcell harvesting was a success. We reached our goal in one day!!! Michaela was her usual brave self and as always, made us very proud. You see, when I told Michaela that we needed to harvest more cells, she was pretty upset. The harvesting is a breeze really, the nurses that do it are wonderful and very patient. The problem was that Michaela remembered that it hurt her when they took the pheresis catheter out and she made me promise that she could be put to sleep for the procedure. We were all quite surprised to find out that she had given enough cells and had not kept her from eating and in order to receive anesthesia she needs to fast for 4 hours. After alot of discussion with Dr. Neely, we were able to convince her that we could do this just as well without being asleep. Dr. Neely did the procedure himself, we applied elamax (numbing) cream to the stitches and gave her a mild sedative to relax her. Let me tell you, the sedative didn't work! Michaela was quite upset by the whole thing. I don't think she felt any pain, but her memory is good and she was very frightened. The catheter was out in less than 2 minutes and Michaela stopped crying immediately. We promised her a special treat tonite. We are going to dinner at her favorite restraunt, Lone Star. Lucky for me, it's my favorite too!
Tomorrow, Nicholas and Daniel are visiting a daycare center in Lancaster to see if they like it. They love spending time with their friends at Stephie's house, but I think they need to have a chance to get used to school and this sounds like an excellent opportunity. We'll see what the boys think after our visit.
In the mean time, we are quite busy trying to get ready for our extended hospital stay. Remember, we go in on Tuesday and will remain there for up to 6 weeks. It's not too soon to start praying extra hard. This is a very scary part of her treatment and it is crucial that these stemcells take.
I am having a hard time wrapping my brain around the fact that we won't be home together for such a long time. There are so many things we want to do with the kids and so many friends we need to see before our admission. The trick is, I guess, to do as much as we can with as little stress as possible. Maybe, mommy could benefit from a seditive too.
Only kidding folks. I'm fine.....
Keep visiting, emailing and praying! These are the most important things people can do for us now, especially the praying.
Tuesday, July 8, 2003 8:24 PM CDT Hello Friends,
After another hectic morning trying to get out of the house on time, we were only about half an hour late getting to the hospital; not our best time, but not bad for us! We got to the day surgery unit and our little angel was doing just fine. Surgery was backed up about two hours, but with the TV showing cartoons, Michaela was happy. Once she got her pre-op happy juice she knew the time was drawing near to be led down that long hallway away from mom and dad. That's when she started to get upset. It's hard to watch your daughter being pushed thru those big double doors into a sterile environment when she's crying for her mommy. Up to the waiting room we go. As usual, the procedure only took about 45 minutes, but the waiting seemed to go on for days.
We moved into our room on good old 7th floor west(home away from home) I don't know if Michaela noticed, but it was the same room we had last time. We were told that our little buddy Tucker had just vacated it on Monday. We also just missed Christian, he headed home sometime when we were in surgery. Michaela was groggy from the anesthesia for awhile, but didn't take too long to perk up. Once Michaela was her old self, Kayla made up for lost time as far as eating. We had alittle picnic in the room. Brandy, our nurse for the night said to have Kayla take it easy on the food for awhile to see how her stomach reacts. Well, taking it easy for Kayla meant ring balonga, watermelon, 2 tacos, brocolli, and popcorn. Nothing wrong with that girls stomach!
Tomorrow we start the stem cell harvest bright and early. If they get enough, we'll be home by evening. if not, they'll collect again on Thursday and stop. That gives Kayla (and us) four days to relax (somewhat) and get ready for the long stay starting the 15th. Not looking forward to that at all. I know they went over everything and told us what could happen and what to expect, but I don't think you're ever really ready for something that you know is going to get downright ugly. Hopefully Kayla will pull it off like she has everything else so far- ain't no big thing. Till next time(hopefully tomorrow night) see ya!
Monday, July 7, 2003 8:50 PM CDT Well, here we are again. Twas the night before surgery....
Thankfully, this isn't nearly as serious as the last one, but I still get the willies. It seems like Michaela doesn't have a concern at all. This is old hat to her it seems. If she's worried, I can't tell. We will be at Hershey tomorrow by 7:30. Surgery to place the pheresis catheter is scheduled for 9:00. I don't expect to begin collecting stemcells until Wednesday. Hopefully, they will get enough in one day and we can get back home Wednesday evening. If not, we almost definately will be discharged by Thursday evening.
We were lucky enough to have a wonderful, long weekend! On Saturday evening Michaela, Dave and Nicole went to The Buck to watch a demolition derby. Our new pal, Glenn invited us all, but knowing how skittish the twins can be, we decided it would be best if I stayed home with them. After the derby they had a beautiful fireworks display. Michaela really enjoyed herself and I expect, when her treatment is over, The Buck will be a regular destination for us on Saturday nights!
On Sunday, we went to see the fireworks at Long's Park. They were awsome and we had great seats. This time we took Nicholas and Daniel and they enjoyed them too. We were far enough away that they knew that they couldn't get hurt.
Well, that's all folks! We'll keep you up to date as best we can. Thanks for your entries and prayers!
Friday, July 4, 2003 11:41 AM CDT HAPPY FORTH OF JULY EVERYONE!!!!!
I decided to take a small break for doing the happy dance so I could update Michaela's page. We have had a very good couple of days here at the Mease house and I am looking forward to letting you all in on our good fortune.
MOM AND DAD HAVE THE HOUSE TO OURSELVES ALL DAY !!!
Let me say first, that these stories of joy are not neccessarily in order of their importance..... That being said, Michaela, Nicholas and Daniel went swimming today! Aunt Lori, Aunt Kath and Mum-Mum invited them to our friend Pammy Sue's pool for a holiday dip! Daniel loves the water, Nicholas enjoys playing on the steps leading to the pool, and Michaela has a nice boat that she can ride in and still keep her broviak dry. The boys went swimming last weekend and had a wonderful time and behaved very well, so Aunt Lori and Aunt Kath decided to give it a shot with Michaela. They are very concerned about keeping Michaela's broviak dry, so I really hope the boys behave again today and the adults can let their guard down a bit and have a relaxing day too. Meanwhile, Dave and I have the whole house to ourselves! I can't remember the last time this happened and it is quite enjoyable. We are both hoping to get something worthwhile accomplished around the house, but if not, so be it.
THE PINK PUPPY CAME FOR A VISIT!!!!
Last night our new friend, Glenn Rudy and his wonderful family came for a visit with THE PINK PUPPY. Glenn read about Michaela in the paper and decided he wanted to do something to make her day. Boy, did he succeed! He had a race last Saturday, dedicated the race to Michaela and won second place! He then decided to give his winnings to Michaela. He and his family delivered the prize money, four sweet stuffed animals, keepsake creditcards, and a beautiful greetingcard to Michaela. When we found out we were coming, we invited some family and friends to share the excitement with her. All the kids took turns sitting in the truck, blowing the airhorn and making the horn bark, while the adults sweated their behinds off and took in the joy in the kids faces. Glenn and his family have been touched by cancer in the recent past and he really feels for Michaela. Glenn lost his father to cancer and he is surviving a lyphoma himself. This is a very special family and I expect we will become great friends!
WE HAVE RESULTS FROM ALL THE RECENT TESTING!!!!!!!
Dr. Comito called us while we were visiting with Glenn and his family last night. Her news was wonderful and encouraging. Michaela's bladder function test was normal, her bonescan was still negative, the MIBG scan showed NO NEUROBLASTOMA, and the CTscan's only area of concern was one lymphnode and that was significantly improved!!!!!! After last weeks news about Michaela's bonemarrow not being completely clear, this was exactly what we needed to hear. You can imagine how happy we were. There were some high-fiving going on our street last night!!
Now, you all know that I am not one to complain...... well pretend you do.... We are, as always so touched by the messaged that we receive, but it seems like there are many people not visiting the guestbook. Please, if you can, take a sec and just say hello. We don't need more than a hello, but Michaela enjoys knowing who's checking in on her and so do we. Again, thank you all so much for caring, praying and letting us know how much we are all loved. It is a priceless blessing to be kept in people's hearts.
Tuesday, July 1, 2003 8:52 PM CDT Hello friends! Thanks for stopping by! We've had 5,000+ hits so far to Michaela's webpage! How exciting! Thank you all so much! Don't forget to sign the guestbook.
It's been a busy week so far! We've had a bonescan, 2 bloodtests, a hearing test, a pulminary function test and the first of 3 MIBG scans. The only results we have are the pulminary function, which was A-OK, and the hearing test. AS we expected, Michaela is suffering some hearing loss due to the chemotherapy. So far she has mild loss of high frequency sounds of her left ear and moderated loss of the same in her right. We are expecting to need hearingaids when we are finished with her treatment, but we will retest in the fall. She may improve or worsen, at this point we don't know. Michaela seems totally unrattled by this and I suspect that she was noticing a change for a while. I'm thinking it's a small price to pay if we make it to N.E.D. statis. (NO EVIDENCE OF DISEASE)
We heard from a gentleman who read Michaela's story in the paper on Monday night. He races a Tuff Truck named THE PINK PUPPY at the Buck and wants to meet Michaela. He dedicated his race to Michaela on Saturday and he won 2nd place! He wants to give Michaela his winnings and let her sit in his car. He told me that kids really seem to get a kick out of sitting in it and unlike other drivers he enjoys sharing his hobby. Apparently, many drivers are protective of their racers, but not this man! He will be here Thursday evening and told us to feel free to invite
some of Michaela's little friends. I am so touched by the outpouring of kindness, I can't even describe my gratitude! I hope someday that I can repay everybody!
Since this week is going to be so hectic with testing, some co-workers of Aunt Kath are making us dinners every nite this week! Monday we had baked swiss chicken, twice baked potaoes, homemade bread, a chocolate/pretzel snack and homemade cookies! Yummy!!!! Tonite we had baked ham, homemade macaroni and cheese, peas, and fruited jello! Are we eating good or what! These ladies and gentleman are making it easy to put the stressful day behind us with their wonderful, delicious meals!
Tomorrow is a little less busy because we only have the MIBG scan and will hopefully be home by noon. It's a good time for a break because it feels like we've been going non-stop since Monday morning. Maybe Michaela, Nicholas, Daniel and I can hang out, watch a video and relax tomorrow.
Sunday, June 29, 2003 7:34 PM CDT Hello everybody! Hope you all had a good weekend! Since I last posted there have been many donations given both to our family fund and to the Miracles for Michaela Pig roast. It has been wonderful to hear about our communities generousity! We have been promised wonderful things to auction off such as gift certificates from Cactus Willies, Weis Markets and Darenkamps. We have Longaberger items, a Goebel figurine, and tickets for the Fulton Opera House! The family fund has had many kind donations as well and we feel quite blessed by our friends.
Kim Geyer tells me that she is almost half way to her goal of $7000. for the CYCLEFEST CENTURY RIDE. Just a reminder that this is a ride to benefit THE LEUKEMIA AND LYMPHOMA SOCIETY and Kim is riding this 100 mile route in honor of Michaela and Ashley Kaufman. Ashley is 8 years old too and suffers from Acute Lymphotic leukemia. Please contact me if you want more information on how you can help Kim help these cancer kids by giving to her generously.
On Friday, Dr. Neely called to report that we will be harvesting more stemcells from Michaela. He expects this will be scheduled after the 4th of July. He plans to have a pheresis catheter put in surgically instead of attempting to use her broviac catheter. I have not given up yet though. I believe there might be some wiggle room for me to change his mind. Ya never know unless you try. He also told us he received the pathology report from Michaela's bonemarrow biopsy. It unfortunately shows neuroblastoma cells are still present. This is not what we wanted to hear, but he said he expected to continue on with the stemcell transplant. He said this does concern Dr. Comito and him, but the high dose chemo Michaela will receive to get her body ready for transplant could kill these cells. We will never know for sure and it will always be in the back of our minds. I hung up the phone, thought for a few minutes and called back. I asked him to please consult with Chop or Mem. Sloan Kettering since we were treading on ground that we were no longer confident about. He said Dr. Comito was in the process of confering with another hospital and that she would get back to us. I was not home when she finally called back, but she didn't go into details with Dave anyway. She wants to speak with us in clinic tomorrow.
We will be in Hershey for a bonescan, bloodcounts and to drop off our 24 hour urine collection. This collection is to check Michaela's kidney function. She also will be given the MIBG isotope for Tuesday, Wednesday, and Thursdays tests. It will all be painless and stress free for the most part. At some point we will also have another oppurtunity to talk to Dr. Comito about our concerns. Say extra prayers for Michaela. We want a good plan that shows good promise and confidence in our decisions. Sounds simple, but it's not! Let's get busy storming heaven again folks.
Tuesday, June 24, 2003 6:33 PM CDT Hello everyone! Yesterday we had our first of many tests to make sure Michaela is ready for her stemcell transplant.
First, she had an echocardiogram then a bonemarrow aspiration and biopsy. We haven't heard anything on the echo yet, but the aspirations seemed to please Dr. Neely. He said that her marrow never looked so good and cellular. We should hear the results of the bonemarrow biopsy by Wednesday. Michaela was completely out for the bonemarrow procedures and has not complained of any discomfort. As a matter of fact, I asked if she could tell that they did anything and she said that she couldn't! That's what we like. When it comes to Michaela, we feel no pain is a gain!
I have to tell you about a dilema I've been having while considering Michaela's upcoming transplant. When we harvested her stemcells, over a period of 6 days, we were only able to collect 2.8 million. The minimum for transplant is 1.5 million. A while ago, I asked if we could attempt to collect more and we were turned down. Since then, I have learned that it is very common during a relapse to use reserved stemcells to rescue a child after many treatments. We have a 50% chance of relapse and if that occurs, the disease is even more difficult to treat. It often requires very aggressive and powerful treatments. The treatments can be very difficult to rebound from with-out a stemcell rescue. This knowledge led to my next request. Would they save enough stemcells to use in relapse treatment? Again, I was told this was not possible because the counts are not exact and the more cells returned, the sooner engrafting takes place. To me, these answers are closing a very important window. I have discussed this with Dr. Comito and she is working with Dr. Neely to hopefully harvest again. This would happen very soon so that the transplant can go on as close to the time planned as possible.
Michaela is feeling very good and was able to spend the nite with Aunt Lori, Aunt Kath and MumMum Saturday. They went to the movies and saw "Finding Nemo", ate supper out at The Lone Star and on Sunday morning, the went to breakfast. Michaela loves spending time at her Hager Street home and doesn't miss us nearly enough to suit me. Oh well. She's never been a home body.
Did you all see the newspaper article? We were so surprised
on Monday morning when we found out that it was in already.
She also had an article in the evening paper! What a star!
We're just a little proud of our kids! As far as I was concerned, they should've kept me out. Maybe they could've had a caption saying that I was busy doing laundry or at Kmart again. I think that would've been just fine. Anyone that knows me wouldn't have questioned those explainations for one minute. HAHA
Here's our next big news! PaPa's girlfriend's daughter, Kim Geyer, is doing a 100 mile bike ride in Florida. This is not a typo, 100 miles in Florida. She isn't doing this for fun, she's not that crazy. She is doing it for the battle against a leading cancer, Leukemia and Lymphoma. Michaela doesn't have these particular cancers, but I can tell you, without a doubt, researchers share information. As far as I am concerned, a child fighting cancer is a child fighting cancer. Forget the scientific name. Kim is a Manor Township police officer and in her spare time is a mommy too. She wants to do this in honor of Michaela and Ashley Kaufman. Ashley is 8 years old and has been battling Acute Lymphotic Leukemia since March 2, 1999.
The ride is call CYLCLEFEST CENTURY RIDE and takes place on October 4th. Kim has been training for some time now and has set a goalof $7000.00. She is only required to commit $3500. Here's the way it breaks down towards the charity...
%75 of the first $3500 goes straight to the charity. After the required $3500 needed to participate, ALL MONEY GOES STRAIGHT TO THE LEUKEMIA AND LYMPHOMA SOCIETY. Kim feels very strongly that she can meet her personal goal and I hope we can help her. THERE IS NO AMOUNT TOO SMALL TO HELP.
Kim has composed a beautiful letter to help get supporters and unfortunately, I can't get it onto this sight. I would be so proud to send it to anyone interested. I can e-mail it or mail it to anyone who would like to hear Kim's thoughts and feelings about the ride. We are very proud to be a part of her fundraising and want her to be successful.
Hugs to everyone! Keep signing the guestbook and praying.
Friday, June 20, 2003 1:08 PM CDT Hello everyone. I apologize for taking so many days off from updating, but it's been a bit hectic around here. Let's get caught up now.
Michaela was discharged from the hospital on Wednesday. I felt she was ready on Tuesday, but I deferred to the doctors for a change. Before we could come home, she had an eye exam to check for any damage the chemotherapy could have caused. Michaela really enjoyed having her eyes dialated and didn't mind the exam at all. So far, so good. Her eyesight is still fine and no damage has been detected.
Michaela is feeling very good. She is running around the house like a nut, making it very clear that she is happy to be home. She and her brothers are still fighting like cats and dogs, so I guess everything is as it should be.
Yesterday, the kids and I were pretty busy getting the house tidied up for very special guests. Michaela was interviewed and the family was photographed for a newspaper story. Pretty exciting huh!!! Wanna know why? Okay, we are going to have a fundraiser pigroast to benefit THE MEASE FAMILY FUND. It is being called MIRACLES FOR MICHAELA
and is being planned by my highschool friend Roberta, her co-worker and friend Ken and Aunt Jana. By the way, Ken has never even met out family and has been quite important in the planning of this event. They felt it would be a great idea to get Michaela's story and the fundraiser information out in order to get donations toward the pigroast, so they contacted The Intelligencer Journal. The date has been set for September 6th and Dr. Comito feels Michaela should feel pretty good by then. They haven't determined the price and the tickets have yet to be printed. So far, they know there will be an auction, a magician, the pigroast and all the trimmings, beer-of course, and a good time for all. I am really looking forward to having all our family and faithful friends there to celebrate Michaela's bravery. Please mark you calendar and let us know if your interested in attending or donating to the cause.
I have another exciting thing to let you all in on, but it deserves it's own entry so stay tuned! How's that for a teaser, huh!!!!!
The next few weeks will be pretty busy and full of tests for Michaela. Please, please pray that they all come out as expected so that we can continue on with the planned stemcell transplant. We are not looking forward to this trying part of her protocol, but it is absolutely neccessary to her cure. We are looking forward to getting beyond it and having it be a memory.
Til later.....We love you all and look forward to reading your messages. Thank you!
Monday, June 16, 2003 8:52 PM CDT Hi Ya'll,
Michaela seems to be doing pretty good today. She hasn't had a fever since Saturday night and her mouth sores seem to be getting better. When I arrived this evening with the boys, we all went downstairs and had supper, then went out to the playground to enjoy the rest of the evening. When we went back inside to get ready to take the boys back home, Michaela was sad and crying, When we asked her why, she said she just wanted to go home. Hopefully tomorrow sweety. Michaela had a transfusion this afternoon and that seemed to pep her up, she was running all over the playground. We have the consult with the doctor and a hearing test on Wensday, and then labs and the bone marrow biopsy on Monday. That's about it for tonight, I need some sleep, talk at ya's later!
Sunday, June 15, 2003 9:12 PM CDT Hello To All,
Sorry but this is going to be a short one. I had a more detailed entry almost done when Kim got ahold of me and I had to delete it to find out what was going on. I'm going to make this quick so I can keep the phone line open. Michaela's temp. spiked to 104 degrees last night, but after a dose of Tylenol it came down and has been dowm all day. It's now 10:00 p.m. Sunday night and Kim just got in contact with me that Michaela is starting to develope mouth sores from the chemo. This is the first time that this side effect has hampered Micaela, hopefully the antibiotics she's on for the fever will take care of them too. Michaela's fever has been down since Saturday evening, so hopefully she'll be able to come home soon, with the mouth sores, I don't know. That's it for now, Sorry the updates kind of skimpy but more I have to keep the phone lines open. More details tomorrow night for sure.
Friday, June 13, 2003 9:43 PM CDT Hi friends! Today has been quite eventful. Not everything has been good, so I will lay them out as they occured. Michaela, as you know, needed platelets today. We arrived in Hershey by 10:00. Michaela was running a fever of 99.9 and was very tired. She also told us that her gums were bothering her so Dr. Comito took a look at her and felt that platelets would improve her gums but thought she might also need packed red blood. They checked her counts again and her hematocrit and hemoglobin actually came up from Thursday, so that wasn't why she was feeling so tired. She received her platelets and her fever did not rise enough for her to be admitted, so we came home. Dr. Comito felt that she was so tired because she was fighting an infection and told us to keep a good eye on her. She seemed to expect her to need to be hospitalized over the weekend. Guess what... she was right. Michaela came home from the hospital and took a nice long nap. When she woke up her temperature was up to 102.8. We called the doc on call and Michaela is now admitted and resting well. She got tylenol right away for her gums and already sounds like she's more comfortable. Her iv antibiotics are on the way and she'll also be on fluids to keep her hydrated. They ran cultures on the broviak, blood, throat and gums. We'll see what comes of them and the docs will adjust her antibiotics accordingly. For Michaela to come home she will need to be fever free for 48hrs and her white count will need to improve as well. As of now, it is non-existant. We are probably going to be in the hospital until at least Tuesday.
There are good things to report about the hospital stay.
1) We will get to see our buddies Lisa, Chad and Tucker.
2) we'll get to see Cristian
3) we'll get to see our fav nurses and nurses aides
4) AUNT LORI IS STAYING WITH KAY SATURDAY NITE and Michaela thinks that is great!
The next important event today was a doozie! Dave's co-workers raffled off a Weber Gas Grill to benefit The Mease Family Fund. Dave got to pull the ticket today and $2821.00 was deposited in to the account. Thank you so much everyone. Mommy got to pay bills tonite and bring almost everything up to date. If it weren't for our friends contributing to this fund there would be no way for us to keep our home. We appreciate your kind contributions and will never be able to thank you all enough. We were dealt a major blow in December, but God has blessed us with terrific family and friends who came to our side and are carrying us through with their caring ways, prayers and contributions. There are not enough words to describe our gratitude for everything.
Thank you for following our progress as we help Michaela battle this terrible disease. Please keep praying and visiting her page.
We love you all!
Thursday, June 12, 2003 6:37 PM CDT Hello To All,
I know we haven't updated for awhile but I think this site was experiencing difficulties. It gets frustrating to type all this up(especially when you can't type) and then have it all disappear before your eyes when you go to post it. So, tonights entry is going to be short and sweet and we'll see what happens. A visiting nurse came to the house today to do a blood draw on Michaela to check her blood counts. We received a call from Hershey with the results around supper time. Michaela's platelet count is way down. I took notice last night that she was looking alittle pale. So, it's off to Hershey tomorrow for a transfusion. She'll receive platelets at least. They're going to recheck her tomorrow to see if she'll also need red cells. We also noticed last night that Michaela had a slight fever,not enough to be admitted for, but we have to keep an eye on it. The family was supposed to go to Millersville Friday night for the Relay For Life walk, but with this fever, we're going to keep Michaela home and hopefully well. We really don't feel like spending another week in the hospital. Michaela says she feels fine, but because of the low counts she gets tired very easy. Hopefully with the go-go juice tomorrow she'll be back to her perky little self. That's about it for now, will update again tomorrow night(especially if this goes thru the first time!) One more thing, check out the pictures of the new motorcycle gang in town!
Monday, June 9, 2003 9:07 PM CDT okay folks. this is the third time i am entering this same information so please excuse the fact that this is not being properly done. I am abit miffed right now.
We are sorry that it's been a while since our last entry, but we lead somewhat boring lives. This weekend we shopped a bit, cleaned very little and napped alot. Sunday night, my friend tammy and I went out to dinner and a show at a comedy club. We had a blast and next time might consider taking the guys with us.
Today was more eventful for Michaela. She went to the All School Opening (we called it an assemble in our day) It was great fun for the kids as they tried to spoof "American Idol" The acts included "Broccolli Spears" and the 6th grade male teachers playing "The Supremes". Michaela enjoyed the show from her teachers lap with the rest of her classmates. It was great for her to know that she was remembered and still loved very much by her friends.
After the show, Kay went back to Stephy's house to play until it was time for the Brownie picnic held at her troup leaders house. Laura has been a wonderful troup leader and has really looked out for Michaela. I was nervous about allowing Michaela to go because I knew that Laura's hottub would be a major attraction to the girls. I didn't want Kay to feel left out because she couldn't get in. I worried for nothing. As usual our friends are far more considerate thaN i ever expect them to be. Many of the girls stayed on the edge with Michaela and just dangled their feet. They say kids are cruel, but fortunately none of the ones that we know. Michaela earned 4 badges and her GirlScout membership star pin. I am not sure what the badges were for, but given the opportunity next year, I intend to be more involved and know all these things. I pray for the chance.
Thank you all for visiting Michaela's page and please sign the guestbook. We look forward to reading your kind and uplifting words.
Monday, June 9, 2003 9:07 PM CDT okay folks. this is the third time i am entering this same information so please excuse the fact that this is not being properly done. I am abit miffed right now.
We are sorry that it's been a while since our last entry, but we lead somewhat boring lives. This weekend we shopped a bit, cleaned very little and napped alot. Sunday night, my friend tammy and I went out to dinner and a show at a comedy club. We had a blast and next time might consider taking the guys with us.
Today was more eventful for Michaela. She went to the All School Opening (we called it an assemble in our day) It was great fun for the kids as they tried to spoof "American Idol" The acts included "Broccolli Spears" and the 6th grade male teachers playing "The Supremes". Michaela enjoyed the show from her teachers lap with the rest of her classmates. It was great for her to know that she was remembered and still loved very much by her friends.
After the show, Kay went back to Stephy's house to play until it was time for the Brownie picnic held at her troup leaders house. Laura has been a wonderful troup leader and has really looked out for Michaela. I was nervous about allowing Michaela to go because I knew that Laura's hottub would be a major attraction to the girls. I didn't want Kay to feel left out because she couldn't get in. I worried for nothing. As usual our friends are far more considerate thaN i ever expect them to be. Many of the girls stayed on the edge with Michaela and just dangled their feet. They say kids are cruel, but fortunately none of the ones that we know. Michaela earned 4 badges and her GirlScout membership star pin. I am not sure what the badges were for, but given the opportunity next year, I intend to be more involved and know all these things. I pray for the chance.
Thank you all for visiting Michaela's page and please sign the guestbook. We look forward to reading your kind and uplifting words.
Friday, June 6, 2003 11:11 PM CDT Hi To All,
Michaela had a better night Wensday. We just took it easy and watched movies till Michaela finally fell asleep. Thank god she didn't get sick or have night terrors! Thursday was kind of a laid back day, in the morning we went down to the playroom for some bingo where Michaela won some nice toy trucks for her brothers. After that we just hung out in the room or roamed the halls. I think Michaela was ready to get out this go round. Kim and I toured the radiation room in the afternoon but don't want to think about that step till after tranplant. We did get some basic information about the transplant which is scheduled for the end of July. Everything we take up on that trip must be able to be washed off and wiped clean before entering Michaela's room. We have to be extra careful as her counts will be extremely low for awhile. I don't know how Michaela is going to be, not being able to leave the room for a couple of weeks. It could get ugly,especially the way she likes to roam the halls.
Michaela did very well being home on Friday, she sure hasn't lost her appetite! She is still eating constantly. Michaela's daily injections started back up today and I thought she would be upset. To my surprise, she barely made a sound compared to the last one she got over two months ago. We have to travel to Hershey daily in about three weeks for a string of tests prior to tranplant. The biggest one being yet another bone marrow biopsy. Hopefully Michaela's marrow is still cancer free so we can continue the course of treatment as planned. Keep those prayers coming. Don't forget to check out the new pictures. We were able to get a few pics. of some of the people who take great care of our little girl. The dedication and caring that they have for these kids is amazing, it takes a very special person to do that day after day. A great big thanks to all on the 7th floor west!!!!
Wednesday, June 4, 2003 6:29 PM CDT Hello everyone and thank you for visiting. We are sorry about missing the update yesterday, but we were experiencing
technical difficulties. Poor Daddy had his entire entry finished and the computer lost it somehow.
Tuesday was a special day at the hospital for our family because it was Dave's birthday and Michaela, the nurses and I made sure everyone knew about it. It was even announced over the PA system for our hallway. Boy was Dave embarrassed! He didn't tell anyone that it was his special day and thought he was going to pull it off until I arrived and made the announcement and presented him with his gifts.
He was abit upset with me because one of his gifts (my favorite) was a hair coloring product for maturing men. You all know the one... After opening the gifts, Dave and I
stepped out for a bit and Michaela's favorite Child Life person, Katrina, took her to the teen lounge and baked a surprise birthday cake for Daddy. I'm sure he didn't notice
the chocolate icing on her PJS when she came back because he
seemed truly shocked when he was presented the cake by
Dr. Unger. HEHE!!!
After school, Alyssa told her mom that she wanted to visit Michaela again. When Tammy, Alyssa and Emily arrived we were sent to the cafeteria for Dave's birthday supper. We took our time and enjoyed the chance to leave the floor together. That doesn't happen unless we get company. While we were gone the kids and Tammy, colored, played airhockey and blew lots of bubbles.
After our company left and Michaela was settled in, Dave left to pick up the boys at Aunt Jana's house. Once again he was surprised for his birthday. Aunt Jana, Alec, Michelle, Nick and Dan made him another cake, sang "Happy Birthday" and presented him with more birthday gifts. Dave was quite touched by everything yesterday and very happy. He really had a good day!
Now for some medical news....
Michaela had a very difficult time last evening. She was able to rest comfortably until around 11:00, then she became very sick and needed to vomit. We really hoped she
might breeze through this treatment, but that wasn't to happen. There are a few medicines given to help with her nausea and we've used them all with very little problem. Last night she was given one of these and had a nasty reaction to it. She had night terrors and terribly twitchy legs. Everytime she dozed off, she would wake up minutes later, very upset by terrible dreams. She could not stop the twitch in her legs and eventually had herself hysterical
from suffering these side effects of the medicine. Being that upset made her more nauseus. These problems snowballed throughout the night and had the nurses, resident and mom very upset and concerned. The vomiting eventually made her tummy sore from her incision and she was asking for pain medicine. She couldn't get pain medicine because she wouldn't let the doctor look at her.
It was a horrible watching her suffer so much. Everyone was worried for her and you could feel the tension on the floor. This is quite unusual for Kay and I think everyone was just stunned by her reaction to this medicine. Unfortunately, I had to call my Dad to take care of the boys
and Dave had to come in at 6:00. When he arrived, Michaela had improved and was resting. Watching her sleep, it was hard to believe that this same child was crying, screeming and wanting to know why this was happening to her. When she
woke again at 2:00, she was feeling 100% better and wanting to know what was for lunch. She still looked terrible. Her eyes were swollen, glassy and blood shot from crying and her sweet cheeks were still flushed from the earlier terror tantrums. She was able to eat 3 helpings of mac and cheese and so far has kept it down. She visited with Boomer
(The Bloodhound Therapy dog) for a bit and has settled down for the night. She and Dad are watching "Mulan" and
"Inspector Gadget 2" this evening and just hanging out quietly. Let's hope tonite is uneventful so she can come home tomorrow when her chemo is finished. I've had an eye-
opening experience last night and realize tonite how fortunate we have been as far as side effects are concerned.
This has been a very difficul journey for our family and friends, but today I look back and thank God he has kept Kay so comfortable throughout most of her treatments. If anyone needs a topic for prayer tonite, let's ask God to keep her comfortable for the rest of her treatments and thank him for the patient and compassionate care she'll be fortunate enough to receive when she's not doing well. (like
last night)
Monday, June 2, 2003 9:19 PM CDT Hello everyone! We began Michaela's 6th round of chemo today. It is the same combination of drugs that she received for the first 3 treatments. I am not sure what to expect this time. It has been a while since she's had this particular cocktail. The first time, in December, was very difficult on her. The last two were very easy. It really is anyone's guess how her body will react this time. We had a very quick clinic visit and were in our room by 2:00.
She began the actual chemotherapy around 8:00 and as of yet has had no side effects. Let's all cross our fingers now with one hand while we knock wood with out other hand. Of course, I am only kidding. Let's all just pray for the best. We had an extra special day today, because our friends Tammy and Alyssa came to visit. Alyssa got out of school early and came up around 2:00 and stayed until 5:30.
We had a late lunch and Michaela showed her buddy the play-room and how to scare adults by putting your bed waaaayyyy up in the air. It was fun for all!
It's time again to thank all the wonderful friends and family for the visits to Kay's webpage. It means the world to us knowing how many people care and are praying for us.
Sunday, June 1, 2003 8:54 PM CDT Good Evening,
It's been a pretty uneventful weekend. Michaela had a friend from down the street stay over Saturday night and most of Sunday. I think it was good for her to play with someone her own age for once. Mom and dad spent most of today getting ready for the trip tomorrow. The house is clean. (As clean as it gets with the boys running around!) Dad made BBQ chicken on the grill Saturday night and Michaela ate like no tomorrow. She really does like pretty much anything coming off the grill. If anyone was watching the CMN telethon this weekend, there were some really good shots of Michaela, Christian and Tucker. We were watching all weekend and sad to say, we know and see alot of the older kids whenever we're at Hershey. If you saw Dr. Dillon, he's the one who operated on Michaela.
Well I think we're ready to hit the road tomorrow morning, we have to be right? We have to be at clinic by 11:00 a.m.(or there about). Hopefully we can get the blood counts quickly and get over to the main hospital to start getting Michaela hydrated as soon as possible. They have to keep fluids going into her so she flushes out the chemo when she goes to the bathroom. Michaela is getting the same cocktail she had for the first three chemo's so hopefully it won't be so bad for her. As far as the baby fish, there's not much hope. I found out to late how to care for them and survival rate doesn't look good. At least we'll know what to do next time. That's it for now, we'll update you on Michaela's first day tomorrow. So long for now.
Friday, May 30, 2003 10:29 PM CDT Good Evening To All,
There's not much to write about tonight, just a few things. This afternoon Michaela went to Hambrights year end picnic. There was lots of good eats and Michaela got to see her friends from school for the first time in awhile. After the picnic Michaela went to a festival with her friend Luaren. Once again she didn't get home till after 9:00 p.m. I was busy cleaning HER fish tank when I turned around and what do you think she was carrying? That's right, she won a goldfish. Speaking of fish, when Make-A-Wish brought Michaela her angelfish, apparently they happened to get a male and female. When we looked in the tank this afternoon, the female had layed eggs. Michaela was sooo excited! So of course dad had to call around and try to find out what should be done to get them to hatch without loosing too many. Updates on this situation to follow. There's really not too much else going on. If the weather holds out on Saturday we're going up to Hershey for the Children's Miracle Network festival. Sunday will be for packing up the suitcases and getting ready for Monday. Hershey called today and asked if we could be there by 11:00 instead of 1:00 to get the chemo started sooner but it never works out that way. I bet we're still sitting in clinic waiting for a room at 4:00. We will keep you posted on Michaela's adventures next week, Christian should still be there getting his stem cell transplant. It will be interesting to see him and Michaela trying to interact with each other when he can't leave his room. Talk at ya's later!
Thursday, May 29, 2003 11:36 PM CDT Hi everybody,
Finally getting around to updating,frankly, last night I just didn't feel like it. We got a call from Hershey yesterday that conflicted with what we had been told about Michaela's surgery. It kind of put a damper on things. Well, first thing this morning I put a call in to the doctor. Kim called me at work last night after getting a call back from Dr. Neely. Everything was straightened out and we feel better. Dr. Neely was in touch with the surgeons to find out exactly what they did. He was under the impression they just took out the tumor they knew about but didn't do any exploratory. Here's the real deal. The surgeons were very pleased by what they saw when they opened up our little girl. The part of the tumor that they thought was wrapped around Michaela's aorta wasn't as bad as suspected and pulled right away. The adrenal gland that they removed where this all started still had live tumor in it, but they were able to remove it far enough back to get clean tissue. The doctors did explore and feel they got all of the tumor.
Now, because the adrenal gland still had live cancer in it, it may affect the bone marrow transplant. Michaela will have to go through yet another bone marrow biopsy before getting the transplant. We head for Hershey on Monday for round five of chemo. Sometime after that will be the biopsy to see if Michaela's marrow is still cancer free. If not, we may be heading out of town for treatments. The doctors want to hit the spot where the adrenal gland was taken out with radiation, but it's still up in the air as to when that will take place. We're still waiting for the pathology reports to come back, but should be able to see them next week, we'll let ya's know the results. That brings everybody up to speed I think, if I forgot something, I'll post it tomorrow night. See ya!
Tuesday, May 27, 2003 12:04 PM EST Hello Friends,
Sorry about not updating since Friday, but really, not too much is going on. Michaela went to her friend Laurens house on Saturday for a sleepover and then a picnic. We didn't see her till Sunday about 9:00 pm. If this constant running around is going to continue into her teen years, we'll have to nip it in the bud. She's daddy's little girl and he knows how teenage boys can be!
If you haven't seen it yet, or don't regonize her, Michaela is now the star in the family. WGAL Channel 8 started running a commercial for the upcoming Children's Miracle Network weekend at Hershey, May 31- June 1. You can catch a shot of Michaela getting a piggyback ride from Arlene, a nurses aide who comes to visit with Michaela even when she's not working the west hall. We're trying to figure out when the shot was taken because she looks so good. We think it might have been when she was in for stem cell retrieval because she doesn't look wore out as when she's getting chemo.
Speaking of chemo; no ,we don't know when the next round will be. I imagine we'll find out on Monday. Anyway, when Michaela finally did come home this weekend, we noticed she's starting to grow her hair back. Just peachfuzz at this point from being off the chemo so long. It's heartbreaking to know that she'll lose it again soon when the chemo starts back up. Hopefully we're coming down to the end of this ugly ordeal and we can get back to our normal lives. Trying to keep what pills Micheala gets on which day and doing dressing changes three times a week can get a little overwhelming at times, but when we look at Michaela's beautiful face and think of all that she's gone through, well, it puts things back into perspective. Till tomorrow, good night!
Friday, May 23, 2003 9:59 PM CDT Hello Friends,
Well, today was a very special day for Michaela and family. When Michaela was in the hospital earlier this week, Greg, one of the social workers at Hershey, asked if we would like to go to the circus. The Ringling Brothers were performing at the Giant Center in Hershey today, that's great news, but better yet, it seems the folks at PCN Bank have a sky box there. They weren't using it, so they donated their tickets to the kids and families on the seventh floor of the hospital!! Well, what can you do but go. It was a real nice setup, no crowds to fight through and the company of people we see on a semi regular basis, but not as happy an occasion. It was great to look around and see the smiles on these kids faces when they are together for once.
Michaela might have been smiling a little bit more than usual today, Our buddy Christian was able to make the show today before going for his bone marrow transplant. Good luck buddy and we will be thinking of you. Michaela and Christian, I don't know, I have to keep an eye on those two. Kim and I say they act like a little old married couple, always bickering, "I don't like you!", "Well, I don't like you either!" That kind of thing, but when they happen to be in the hospital together,they're always together.(I happened to get a picture of the two not liking each other, Check it out, tell me what you think!)
Anyway, the show was great!! A good time was had by all. Michaela was so excited and happy, smiles from ear to ear. Michaela is recovering just great, she still walks a little hunched over, but she's off the pain medication, and continues to do more of the things she did before surgery everyday. We're still waiting to hear about the pathology report and have no idea when it will come back. You our faithful readers will know when we do. That's about it for now, have a nice Memorial Day weekend and try to stay dry! See ya
Thursday, May 22, 2003 9:45 AM CDT Hello friends and faithful readers,
I guess by now most of you know that Michaela is home and doing very well. We arrived home about 7:30 Tuesday evening after a very good day. After checking Michaela's suction tube to see how much nasty stuff was collecting in her stomach, it was decided it could be removed. It wasn't the high point of the day, almost as bad as putting it back in Monday night. Soon after removal, Michaela started to pass gas, it's the only time I encouraged her to do so. True to Michaela's remarkable recovery, she also left a "surprise" in the bedside potty for nurse Hilary. Michaela started out drinking juices to see how her belly would react, by lunch time, she was asking for red beet eggs.
At 1:00, we saw the surgeons and they said that as long as Michaela was eating and drinking okay, we could go home by evening. That was enough for Michaela to really get serious. She walked down to the playroom to hang out for awhile, went outside to soak up some sunshine, and toured the gift shop. Later in the afternoon, Michaela and daddy went on one of their adventures. Roaming the different floors and checking things out to make sure the hospital is running smoothly. Michaela was still walking a little bent over, but she's a trooper and did the grand tour. True to Michaela's infectious smile, she recieved smiles from people passing us in the halls. I don't know if it was becuase she's so cute or becuase of her pink jammies and red slippers, either way, I couldn't help but smile too.
Michaela keeps improving every day, I can tell this by the interaction with her brothers. Home life is getting back to normal; HELP!!!!!! Michaela goes back to clinic in two weeks for a checkup to schedule her next chemo. In three weeks she goes back for a surgery follow up. Until then, all she has to do is enjoy being at home.
Monday, May 19, 2003 8:54 PM CDT Hello friends! I am happy to report that Michaela is doing just great! Her recovery is going very well and I am soooo
relieved to tell everyone that there have been no setbacks.
Her pain is being controlled with morphine, of which she can have 3mg every two hours. She made it through the night
on Sunday without any medicine until 6:30am and she has made it up to 5 hours during the day with out pain medicine. She continues to do her breathing exercises and blowing bubbles to prevent pneumonia. This can be quite uncomfortable, but in true Michaela spirit, she is facing these challenges with
amazing bravery. She has made 2 trips walking the halls with no help at all and even took a wheelchair trip outside twice to enjoy the sunshine.
Sunday evening, at around 3am, Kay decided she wanted to go to the bathroom instead of the pottychair and forgot about the draintube that is in her nose. She was quite scared when it pulled out and extremely upset that it had to be put back in. It was a nasty time for her and she was very upset. When it was finally back in, she was able to drift back to sleep quickly. Michaela said she tried to wake up Daddy, but I doubt she did. Dave sleeps so lightly, that I know she must've wanted to do it by herself and let Daddy sleep. Hopefully, the tube can come out tomorrow. They have it clamped shut and if she handles that okay it will probably be time to attempt some clear fluids. The Docs want to be sure once it's out, it can stay out.
I want to thank everyone for their prayers for Michaela! I believe, without a doubt, that God is hold her close through this nasty disease. He's guiding the Doctors and Nurses and keeping Dave and I braver than we ever believed we'd need to be. Michaela is such a special child and I know she will turn this monster around and serve a special purpose with her life. We are so thankful to all our family and friends, old and new, for the kind messages of support on the webpage. Please, please, keep writing and praying for us as we continue this difficult journey.
Sunday, May 18, 2003 7:55 PM CDT Hello everyone! Today has been a terrific day! Michaela received many guests at the hospital and it really helped keep her mind off of the pain. Brad, Traci, and Tiffiny came first today. They have been a tremendous support for Dave and I ever since we've known them. First with the twins, and now with Michaela. They are very special people!
As they were getting ready to leave Grandma, Aunt Sandy and Christine showed up. Michaela loves her Grandma and Aunt Sandy of course, but She and Christine have a very special relationship. Christine stayed right by her bed side and held her hand the entire visit. It is very difficult for
people to know what to do when someone they know hurts so bad, but Christine somehow knew that just holding her hand was exactly what Kay needed. No talk is required between them. They were comfortable just being together. It was quite special to see. The next visitors were Lisa, Chad and Tucker. We haven't seen them in a long time and it was great to see them. In the beginning of our journey through treatment we were on the same schedule, now we hardly see each other. It was good medicine for Dave, Kay and I to see
out special friends. Then Aunt Lori, Aunt Kath and Mum-Mum came to see Michaela and brought Daddy some food for his mid-night snack, since the cafeteria closes at 7 on Sundays.
Michaela has been battling a fever since yesterday, but has been able to keep it under control with a cool rag on her head. She has been alternating between the pottychair and bedpan all day and requires little help doing either. She is very proud of herself as she should be and almost never complains. She is allowed to have 3mg of morphine every 2 hours and has gone as long as 4 hours before asking for it.
There is still a drain tube in her stomach and out her nose to control her stomach acid, but hopefully, it can come out tomorrow. Michaela doesn't seem to mind it being there, but
I think she'll definately be more comfortable without it.
They shut it off today hoped and hoped she'd be okay, but she got sick. It was turned back on and everything was fine. After everyone left this evening, we expected Kay to catch a nap. Guess what....Our girl decided to take a walk
down the hall. Never expected that, she just look at me and
said she wanted to walk the hall. She did great and received applause and high-fives as she mad her way. When she had enough Daddy was there waiting with a wheelchair.
Well, I am pretty sure that I am forgeting some things, but I am off to bed. More info. tomorrow. Don't stop Praying for us, we still have a long way to go.
Friday, May 16, 2003 11:02 PM CDT Hello Friends,
Wow, what a day this has been! I finally got a peaceful moment to make this entry to bring everyone up to speed. Our day started at 5:30 a.m. to get ready to arrive at Hershey by 8:00. For once we made it with time to spare. Michaela was a little grumpy getting up, but once we hit the road seemed to be her normal cheerful self. Better than Mom and Dad, I can tell ya. As we were pulling into the med. center, we got a call from Lisa, our little buddy Tucker's mom from the floor. They were on their way to John Hopkins for Tucker's daily radiation treatment. Lisa called just to wish Michaela good luck and to tell us she's thinking about us. Thank's guys. Through this whole ugly mess, there is a little brightness, we have made some great new friends! Thanks guys, we love you.
Michaela was feeling great and didn't seem nervous until they came to wheel her from pre-op to the surgical unit. Even with some "happy juice" in her, she cried for mommy the whole way. It was a tearful goodbye outside surgery, but we reassured her we would be there when she woke up.
Now the longest wait of our lifes. Surgery lasted for seven hours, with updates about every two hours, just the basic "she's doing good, the docter's are still plucking away." Let me tell you about the 5th floor waiting room. I think the voluteer manning the phone was about ready to kick us out. It seems some people don't appreciate the fact that humor is a great stress reliever! It worked for us when the twins were born and it seems to be working during Michaela's treatment. I highly recommend it!
Michaela was lucky enough to go from the recovery room right up to 7 west, that's where she usually stays during treatments, so she's surrounded by nurses she knows and likes, I'm sure that will make a big difference. As of this entry, she's still drifting in and out of sleep, but isn't in any pain. She had an epidural, but the line got blood in it and had to be removed. Now she's on morphine for the pain. Alone in her room watching her sleep, I started thinking how much she's been through and what a little trooper she's been through it all. I honestly don't know if I could handle it as well as she does.
The doctor said surgery went well and things looked pretty much as what the catscan showed. They weren't sure what they would find once they got inside, so that was a relieve. Now all we have to do is wait for the pathology reports to come back on the tumor they removed. Michaela will be in the hospital about a week recovering. The next step is another chemo treatment which isn't scheduled yet. We will keep you posted on Michaela's recovery. Thank you for listening to me ramble, but it's 1:00 in the morning and I have to get to bed. Thanks everyone for the prayers, I'd say they worked!!! Good night.
Thursday, May 15, 2003 6:53 PM CDT Hey everybody! Won't be long now... We just had supper with Aunt Lori, Aunt Kath and Poppy. We had a nice visit and now it's time to get ready for tomorrow. We should check in by 8:00 and surgery is scheduled for 9:30.
Michaela doesn't seem frightened at all, thankfully. She understands how well she will be taken care of and knows that everyone is praying for her.
Dave and I are quite nervous, of course, but it seems like she hasn't picked up on that. I hope I can stay strong until she is under sedation. I've tried very hard to cry only when I am alone, tomorrow that may not be possible.
I am trying to think of the surgery as a blessing. Something that is bringing her closer to remission. It's time to look at the big picture and not focus on all the details of the operation that are scaring me to death. She is getting the best care, at the best facility, and by the best doctors and nurses.
Dave and I will do our best to keep everyone informed by journal updates and phonecalls whenever possible.
Remember, PLEASE PRAY HARD!!!!!
Thursday, May 15, 2003 6:53 PM CDT Hey everybody! Won't be long now... We just had supper with Aunt Lori, Aunt Kath and Poppy. We had a nice visit and now it's time to get ready for tomorrow. We should check in by 8:00 and surgery is scheduled for 9:30.
Michaela doesn't seem frightened at all, thankfully. She understands how well she will be taken care of and knows that everyone is praying for her.
Dave and I are quite nervous, of course, but it seems like she hasn't picked up on that. I hope I can stay strong until she is under sedation. I've tried very hard to cry only when I am alone, tomorrow that may not be possible.
I am trying to think of the surgery as a blessing. Something that is bringing her closer to remission. It's time to look at the big picture and not focus on all the details of the operation that are scaring me to death. She is getting the best care, at the best facility, and by the best doctors and nurses.
Dave and I will do our best to keep everyone informed by journal updates and phonecalls whenever possible.
Remember, PLEASE PRAY HARD!!!!!
Wednesday, May 14, 2003 9:35 PM CDT Hey everyone! Well, Michaela has had a very busy couple of days! on Tuesday, we had our friends,the Parmers, from down the street over to eat McDonald's for supper and play for a while. It was lots of fun for Michaela and me both. After supper, Michaela went to Aunt Cindy's house to stay overnite with her cousins, Zachary and Hannah. Aunt Cindy invited Michaela to visit the Dauphin county courthouse and meet her boss, Judge Bratton. Hannah was able to miss school today, with permission from her teacher, and helped Michaela feel at home. Michaela visited a courtroom and saw how a jury gets picked, saw the holding cells, and met many very nice people. While visiting the holding cells, she and Hannah received some good advice from the prisoners.
They told the girls to stay in school, keep out of trouble, and to go to church. Sounds like an episode on A&E called Scared Straight doesn't it. Anyway, for lunch the ladies dined on pizza at a the office and went shopping at the mall after. Of course Michaela didn't come home empty handed (she never does). While shopping, Aunt Cindy bought Michaela, Nicholas and Daniel some stuffed animals and a cool lamp for her room. When Michaela came home we all ate pizza then the kids played outside and Cindy and I chatted.
Well, here's the part of the update that I don't like...
Hershey Medical's surgical scheduling called today and we
are scheduled for surgery at 9:30 Friday morning. Yuck!!!
Wish we could get out of this, I'd give anything for her not
to have to endure this, but it has to be done. I have to have faith that everything will be fine and be strong for Kay. If she can do it, so can I right??
Sunday, May 11, 2003 7:20 PM CDT Hello all and Happy Mother's Day to all the important women in our lives! We love you and are very grateful for your support, love, and guidance.
I had a beautiful day spent with family and friends, who came out to see Michaela off on her ride with the Make a Wish convoy. Michaela was fortunate enough to "hitch" a ride with an Armstrong truck driven by Joe Mc Cord and his lovely wife. After careful deliberation, Michaela allowed her daddy to go along. He was sweating it for a while, because Michaela wanted to go all by herself at first. It was a tearful and happy day all at the same time. Tearful, for me, because my daughter was eligable to participate and happy, because she was well enough to participate. Watching her go by was absolutely breathtaking for me. She looked so well and happy and especially, alive. I thank God and Hershey Medical Center for her life now and count on them to heal her. I also thank Make a Wish for bringing nothing but pleasure to her life. I can't imagine all the work and long hours spent prepairing for an event like today's. To all the sponsors, volunteers and contributers at every level, I say thank you from the bottom of my heart!
Saturday, May 10, 2003 10:17 PM CDT Hello everyone! Hope everyone is doing well and looking forward to a beautiful Mother's Day! Our family is feeling good and enjoying our time together.
Don't forget tomorrow is the Make a Wish convoy. It is a beautiful sight to see and we are really looking forward to Michaela's participation. She is very excited to ride in a big truck and so is Dave. The boys and I will watch from the sidelines and take pictures, lots of pictures. Alot of family and friends will be there to see Michaela off. It is so special that so many people care enough to participate
in this event and I hope the rain holds off. This is Make a Wish's biggest fundraiser and alot of work goes into it, I'm sure.
We've gotten so many beautiful entries in Michaela's journal
and we are grateful for the kind words of support. Please keep them coming.
Wednesday, May 7, 2003 7:09 PM CDT Just Hanging out...
Hi all! Michaela continues to feel wonderful and raring to go. Our friend, Stephy called this morning and invited the kids over to play at her house. Apparently, Michaela had a good time because, as soon as she got home she asked if she could go again tomorrow. I wish she could go to school, I know she'd be such a happy girl to see all her friends. I hope we are making the right decision keeping her out. It is just so scary to think of her getting another infection.
I spoke to Dr.Dillon, the head surgeon at Hershey, and the surgery date was confirmed for May 16th. He feels that Kay should feel up to par by then. He knows this will be a difficult operation, but feels confident that he and Dr. Cilley are prepaired for any circumstances that may arise.
We aren't looking forward to the surgery, but it must be done. After all, we have no idea what the neuroblastoma is doing while we enjoy our quality time. We also have to stay healthy so there's not another delay.
Just a reminder, The Make a Wish caravan is on Sunday. Be there or be square!!!
Monday, May 5, 2003 7:41 PM CDT Hello Everyone,
Well, Michaela finally arrived home tonight about supper time. She has been away since Saturday. The first stop on her in her travels was to Aunt Jana & Uncle Bills. Michaela spent Saturday night playing with her cousins and having a grand old time! The kids were going to spend the night in the camper, but, as it turned out, it started to get too cold to sleep the whole night outside. When I picked Michaela up Sunday afternoon, the girls showed me where they were going to sleep. Nice comfy blankets, cable T.V., I even saw a bag of popcorn, not too shabby for camping out!
The next stop on Michaela's magical weekend tour was to Aunt Lori's & Aunt Kath's. As usual, I heard they went shopping for some of Michaela's favorite foods before she got there. Mom and I received a call from a very excited little girl Sunday evening. Michaela informed us that she got to ride a real horse. It was great to hear the sheer joy in that girls voice. And no, we're not going to start building a stable out back!!! Well......
So, Michaela is finally back to boring old home after such a fun packed weekend. It may not be as much fun at home, but mom and dad are glad to see her. Michaela is feeling and looking great. She has gotten a lot of her energy back since it has been awhile since her last chemo. Speaking of ugly stuff, surgery is coming up on the 16th for sure. Mom was on the phone to the surgeons tonight and all concerns were addressed. Mom is feeling a little better about the upcoming surgery. Nothing to do until that day except get more and more butterflies in the belly as the days pass. So long for now, and thanks to everyone for reading and signing this page.
Saturday, May 3, 2003 9:46 AM CDT Hello friends!
This may be my last entry for the week-end because Michaela is feeling terrific and plans to be visiting her Aunt Jana today and her second family on Sunday.
Those of you who know Michaela, know she isn't one to stay at home and veg out. She is very much looking forward to playing with her cousins today. She always has tons of fun at Aunt Jana's house. On Sunday morning she will go to Aunt Lori, Aunt Kath and Mum-Mum's house to get spoiled alittle bit more. Three ladies who love her very much, just waiting to cuddle and chat! Isn't that the life?
Yesterday, Michaela and I went with Nicole to get her prom dress fitted. She was absolutely beautiful and I can't wait to do the same with Michaela in a few years. I am looking forward to so much with Kay and I feel fortunate to get a preview of what's to come when I spend time with Nicole. Nicole is a wonderful friend and I feel so lucky to have her our lives. She is a calming support for me and a good role model for Michaela. She too, is part of our extended family.
After her fitting, we all went to The Green Dragon and did a little browsing. We had a nice dinner and enjoyed the wonderful weather. When Michaela got tired, grabbed 3 italian ices and headed for the car. We made a quick stop at WalMart and headed for the video store. By the time we got home, we were ready to sit back, relax and watch our movie. It's amazing to me how important these simple activities are to me now. To some our life is quite boring, but I am so glad to be able to enjoy these simple things. When Michaela was diagnosed, I was sure our life would have no joy anymore. I am soooo glad that I was wrong and find the value in these little things.
Thanks for reading my ramblings and supporting us with your guestbook entries. Keep visiting. I'll try to keep your interest, but I am afraid that if my entries get too exciting, it might not be good things that I am writing about.
Wednesday, April 30, 2003 9:40 PM CDT Hi everyone,
Michaela is still feeling really good even though her blood counts have dropped some due to the bronchitis. Dad took Danny to the doctors today for his cold and high fever, guess what, BRONCHITIS! We're trying to keep him and Michaela apart as much as possible, but it's not an easy job. Hopefully Michaela won't have a relapse. She has one antibiotic left, so I think I'll call tomorrow and let the Docs know what's going on. I'm sure they'll be happy to hear from me again. (you'll understand why I say this later in this update.)
Michaela and Nicholas went to Steph's house to play today and as usual had lots of fun. Steph also had one of Michaela's favorite dinners today - ham and greenbeans so,
of course, she had to stay for supper.
Now it's time for Mom to vent, so I'll apologize now. We told everybody the wrong surgery date. It (as of now) is scheduled for May 16th. Dr. Neely is still not too happy about waiting that long for the next phase of her treatment to begin. I believe he is going to try to move it up and even if he can't, if I have my way, Michaela will not have surgery on that day. The 16th of May happens to be a Friday and , in my opinion, we definately don't want to have her operation on that day. I've read that you never want to buy anything made on a Friday or have surgery or do anything else that can be impacted by human performance. More people make mistakes and are burned out on a Friday because it's the end of the week. It makes sense to me, so I called Amy at Dr. Neely's office and told her how I felt.. she didn't seem too happy to hear this news. She made it quite clear that, although she would "pass it on", she thought I was being a big ol' pain in her...
Another point I made, was that nobody knows just how long the operation will last. There is a possibility that the surgery would take 2 days. I happen to know that half the staff at Hershey has off on the weekend. This includes the most experienced nurses. Not good. Now I know that I am dealing with a fine group of doctors,but let's face it, I only have to concern myself with Michaela's care. They have to care for hundreds. I really feel like I have a valid point and I didn't like being made to feel like a difficult child.
Well that's enough of that. Thank you for listening to me rattle on. I heard today, that tomorrow is The National Day of Prayer. I would like to ask everyone to say an extra prayer for Michaela tomorrow. Thank you!
Tuesday, April 29, 2003 7:58 PM CDT Hello everybody! I apologize for missing Monday evening'
s journal entry. Daniel has been sick since Monday with a terrible cough, runny nose and a high fever. I hope Michaela doesn't get it too. Maybe the antibiotics that she is on for the bronchitis will protect her from this illness. The last thing Michaela needs is another infection. I expect to take Daniel to the pediatrician tomorrow if he's not improved in the morning. We'll try to nip this in the bud, so to speak.
Michaela went to the clinic on Monday and saw Dr. Neely. He
listened to her lungs and although they're not totally cleared up, he was satisfied with her improvement. Michaela was penciled in for her operation at the end of May by Amy. (Dr. Neely's nurse) He felt that was waiting too long and was going to see about moving the date up. I expect to receive a call tomorrow and if not I'll call them.
Michaela still seems very healthy and happy. Unfortunately,
sometimes she's been a bit bored at home. I don't want to hold her back too much, but I like to keep her at home ,on occasion, to be sure that she doesn't wear herself out. Today was one of those days that mean old mom made her stay home.
Thank you everyone for the wonderful guestbook entries, especially Hambright's 1st graders and Miss Wiltrout.
Michaela misses all her great friends at school and wishes she could be with her class. It's just safer for her to stay off school for the rest of the year. She doesn't have to go to the hospital nearly as often this way. Next year, I know she'll come back strong and ready to play and learn.
Sunday, April 27, 2003 9:18 PM CDT Today was a lovely day for our family and we hope it was for your family too. Our day began on schedule at 7:30 and by 10:00 we were on our way to church. Today we attended Faith United Church of Christ in Lancaster and we received a wonderful welcome. Michaela was beautiful as expected and as usual. The boys were quite dapper as well. Even though they aren't used to sitting for an hour and behaving, the boys behaved very well and didn't seem to mind the attention that Michaela got. I expect we'll attend as much as we can,depending on Michaela's health, when she's done with treatment.
After Church, our neighbor gave us money to take the kids out to eat. We decided to try something different and went to Dempsy's for breakfast. It was very nice to sit in a resteraunt again and Michaela loved it. One of her favorite
things in the world is eating in a restaurant, especially for breakfast. She and her brothers behaved very well and
even went to the cashier and paid our bill. Very grown up indeed!
Later in the afternoon, while her brothers napped, Michaela
and her Daddy went to That Fish Place to replace some of the
fish that died during the transition period. Unfortunately,
they were very busy and quite crowded so they decided to try
again later in the week. They also were out of angelfish and that is the only fish they knew that they wanted. Grandma and Grandpa Mease came over to see the aquarium today and were quite impressed with it's size and thought it
was very pretty too.
Our next and last adventure of the day was trying out Michaela's new bike. Her cousin Christine gave it too her now that she's outgrown it and Kay was really excited to try
it out. She fell a few times because it is much bigger than her old bicycle so I expect we'll be using the training wheels for a little while yet.
Hopefully, we were able to get some good pictures of the kids today. If we did, Dave will post them as soon as he can. Maybe even tonight!
We travel to Hershey tomarrow to have Dr. Neely listen to Michaela's lungs. If he feels she has improved enough I expect to get a new date for surgery scheduled.
Saturday, April 26, 2003 9:45 PM CDT Hi everyone!
Today was another good day. Michaela is feeling well and enjoying her time out of the hospital. We went shopping today to the mall to buy her a new dress. I am so glad that she still enjoys wearing dresses and girlie clothes.
We want to go to church tomarrow at the church that we had an Easter egg hunt at. The people were so nice and have been praying for Michaela ever since she was diagnosed with out having met her. Michaela loves to go to church and wants the whole family to go. I have my alarm set for bright and early! It can get pretty tricky getting her brothers out the door in the morning, but we're going to give it our best shot. Anyway, that was our excuse to spend money on a new dress that she really doesn't need. It's very difficult to say no to her when she rarely asks for anything. After we found the perfect dress, we people watched. We got a soft pretzel and a soda and sat in the food court watching all the people go by. It sounds boring, but it was very nice just being with each other.
Maybe Daddy can take some new pictures of her and her brothers in their Sunday best. If we have time before heading out the door I'm sure he'll get some good ones and we'll put them in the photo section as soon as we can.
It's quite amazing to me that we almost have had 1000 hits on Michaela's page. That's awsome and we are so blessed to have so many people interested. Thank you all so much for caring! Please keep checking in and signing the guestbook! We look forward to reading all the messages.
Friday, April 25, 2003 7:51 PM CDT Hi everybody! I'm sorry that I didn't update Michaela's journal last night. The evening just got away from me. I'll get you all caught up right now.
Michaela went to work with her Aunt Kath yesterday. Aunt Kath works at Franklin and Marshall College with alot of nice people and Michaela had a blast! She was kept quite busy shredding, stapling, and copying papers for Aunt Kath.
She was taken out to lunch and was given souveniers to bring home. She even had some things that she shared with her brothers from Aunt Kath's boss, David.
Today we just hung out at home. Michaela played dress-up with her brothers, colored, cleaned up her room (sort of) and read her messages from Caringbridge. It was a quiet and relaxing day for all of us.
Now, I want to tell you about Michaela's Make a Wish gift. In March, a very nice volunteer came to our house and asked Kay what her one wish was. We explained to her that many kind people donate money so that sick kids like her could look forward to having a special wish fulfilled for them because they are so brave. We discussed a swimmingpool, a swingset and a trip to The Baltimore Aquarium. After a lot of thought, she decided that she wanted her own aquarium.
Before Easter, we got the call to tell us that she was approved for her wish and arrangements were made to meet at That Fish Place on April 17th. When we arrived we were met by Bonzo the clown, Wayne from That Fish Place and the Make a Wish volunteers. We were given the grand tour and even got to pet the fish in the petting pool. We all had a great time! Even Nicholas and Daniel behaved very well. It seems like they knew that this was Michaela's special night. She picked out an aquarium bigger than some bathtubs! It is beautiful and they came to set it up the very next day. Once the tank reached the correct temperature we called and the fish were delivered. We had
about 30 fish, but now we're down about 15. Until the tank gets settled we'll lose some, but so far the favorite fish have made it. Michaela didn't have any special fish in mind except her angel fish and so far they're doing fine.
Michaela really loves showing off her fish and watching them swim. We are all very grateful to Make a Wish for giving her such a wonderful gift. There is so many bad things that she has to endure, it is really nice to watch her enjoy her fish!
Thank you for all the messages of love and hope! We read and appreciate them all. (Especially yours Jeremy!) Please keep them coming.
Wednesday, April 23, 2003 6:36 PM CDT Hey everybody!
We just got home from a long day at clinic and I decided to update Michaela's page before I fall asleep on the recliner. (Dave has the couch and he's barely holding on)
We went to Hershey today mainly to receive 2 units of blood. While we were there, the docs wanted to listen to Kay's lungs since she still has such a deep cough. It turns out that she only got 1 unit of blood because surgery is post-poned until her lungs clear up. She had another x-ray and it showed no change, which is good. I was expecting to hear that she has pneumonia now because she sounded so much worse. All we have to do now is continue the antibiotics and wait. We'll go to clinic again on Monday to see Dr. Neely and find out what he thinks. Maybe by then she'll be ready to have surgery rescheduled. The docs were very apologetic to us about cancelling and expected us to be upset, but I am relieved. I'm scared enough of this operation without any handicaps going into it. I feel like a weight has been lifted off my shoulders.
After I posted the journal entry last nite, Dave added new pictures, so if anyone hasn't seen them yet check them out.
Unless something more important comes up, tomarrow entry and pictures will be about Michaela's wish that was fulfilled by MAKE A WISH and THAT FISH PLACE. Did everyone catch that clue I threw out there?
I apologize for any mistakes in this entry today. It appears that I've lost my proof-reader to la la land.
Tuesday, April 22, 2003 8:31 PM CDT Hello to all our friends and family! Today was another busy day for the Mease family. We received a call from Hershey Medical Center this morning to give a report on the latest blood tests. Everything was okay, but Michaela's red blood cell count hadn't changed as was expected. We will head up to clinic on Wednesday morning bright and early so Michaela can get a transfusion of 2 units of red blood. We've never gotten 2 units before and we assume it's to pump her up for surgery. We expect to be in clinic all day so we had to get everything done around the house today. Don't forget, surgery is Thursday. Keep praying that this will be a simple operation for the skilled surgeons at Hershey. Wouldn't it be great if the tumor just "plucked out"?!?! Daddy and I are glad that the oncologists are going to listen to Kay's lungs before surgery. We can't be too cautious since she still has that nasty cough.
Michaela is really enjoying all her messages and I think she's surprised at how many people are pulling for her. I know it is a great lift to Dave and I. We all have been very fortunate to be surrounded by so many generous and caring people. We are extremely grateful and can't thank everyone enough.
I want you all to know that Michaela picked out the design for this page all by herself. She seems to be really enjoying her celebrity. Hopefully, we'll be able to get some new photos on the sight soon. If they're lucky, maybe Michaela will share the spotlight with her brothers.
Monday, April 21, 2003 2:32 PM CDT Hello everyone! First we want to thank everyone for visiting and remind you shy folks out there to sign our guestbook. We read all the messages and gather alot of strenth from the support we receive from everyone.
Easter was better than we even hoped! The weather was beautiful, the food was delicious and the fellowship was relaxing! The day couldn't have been better! Michaela had a blast running around out in the sunshine at Aunt Jana's and at Grandma and Grandpa's as the sun faded. It was a joy to sit back and watch her from the sidelines. You'd never guess what she's been through since Christmas... nothing slowed her down.(not even her new "highheel" shoes)
You could tell she and her brothers gave their all in egghunting because Mom was the first one up this morning and that rarely happens.
Michaela still has that nasty cough in the morning from her bronchitis and she has had some problems with her belly too. We were going to go bowling today, but decided to postpone until her nausea fades. We're not sure why her tummy's upset and want her near a bathroom just in case. She decided to go to Stephy's house to play with her favorite friend Lauren and the other kids who are off school today. That made missing out on bowling bearable.
The visiting nurse was here this afternoon and drew blood.
Her counts will be checked and sent to Hershey to decide if she's good to go for surgery. If not, we'll go to the clinic for a transfusion on Tuesday or Wednesday. Hopefully, her counts are good and we can spend the rest of her time before surgery doing what we want at home.
Please continue to pray for Michaela and the rest of the family as the clock ticks down to her operation.
Saturday, April 19, 2003 10:08 PM CDT
Hello and Happy Easter Eve! We've had quite the busy day. First, the whole family went to an Easter egg hunt at our neighbor's church. After we collected our eggs we had a nice lunch and met some people who have been praying for Michaela since her diagnosis. When we got home from lunch, the kids played outside while Dad and I straightened up the house and boiled eggs. Then it was off to cousin Alec's birthday bowling party. You'd never guess Michaela has bronchitis. She's such a trooper and absolutely loves Easter. As soon as we got home, Aunt Kath, Aunt Lori and Mum-Mum came over to eat pizza and paint 7 dozen eggs. This is one of Michaela's favorite traditions and we've never missed a year. As you can tell from the new pictures Daddy added tonight, this is no fly-by-night operation. It is taken very seriously by all. No egg is left unpainted, and all hands and surfaces must be stained with purple, blue, red, green and yellow dye.
Easter will be a busy day as well! After the baskets are RIPPED apart, we will head over to Aunt Jana's house for lunch and another egg hunt. It's so much fun for Michaela to play with her cousins and she is really looking forward to seeing everyone. For supper we will move on to Grandma and Grandpa Mease's house. This too is exciting and very much anticipated by Michaela! More yummy food and another challenging egg hunt with her two cousins, Eric and Christine. It's always a fun time and we get home exhausted and stuffed full of ham and candy.
We hope everyone is enjoying Kay's web page and taking a peek into our lives. It is very nice to be able to report such fun and happy times.
Don't forget to check out the pictures and SIGN THE GUESTBOOK. Michaela loves to read the messages and Dad and I appreciate the support. Spread the word about this page. The more messages Michaela gets the better.
Right now, Michaela is feeling pretty good but, we have to hope the antibiotics will do their job. As much as we dread and fear surgery, we don't want it delayed. It is critical to her recovery that it be done, so I guess the sooner the better. We want her strong and healthy for the Make a Wish Caravan on Mother's Day so she gets to ride in a "big rig"
Happy Easter Everybody from the Mease Family
Friday, April 18, 2003 6:28 PM CDT Hello friends old and new! As of yet we don't have any pictures to show off, but we are working on that. I will begin with a brief history to get everyone interested up to speed. Until December 2002 Michaela was a very happy and healthy child. One Saturday morning we had a visit to the pediatricians office and were surprized to find that her blood counts were very "off". Other than being a bit more tired than usual, Michaela showed no signs of illness. Her Daddy and I tried to calm our fears with that knowledge while the pediatrician ordered more bloodwork. One week passed without significant improvement so we were sent to see a Hemotologist. (No one told us he was also an Oncologist) He ran more bloodwork and decided he needed to do a Bonemarrow Biopsy. Of course we're still sure all will be fine even though by now Michaela is more than a little tired. Although he needed confirmation from other tests our doctor felt sure he was seeing NEUROBLASTOMA. He informed us that he hoped he was wrong but didn't think that he was. Other things happened that day but details elude me. In shock we were sent to have a chest x-ray and sent home. The worst drive of our lives so far. Thank God
Michaela slept the whole way home. We couldn't do anything except cry.
Since then we have had 5 rounds of chemotherapy inpatient, 2 catheter placements, stem cell harvesting, 4 infections requiring hospitalizations, countless tests and transfusions.
Through it all Michaela has been braver than we ever hoped she would need to be. She has handled most treatments very well and has a 50/50 shot at a cure. That's better than some children's prognosis and we know we'll beat this ugly, nasty cancer. We are looking for prayers from anyone anywhere looking to help. As Michaela's Grandma says "we're storming heaven".
Friday, April 18, 2003 6:10 PM CDT This page is brand new so we'll begin at the beginning for those of you just joining us.
Click here to go back to the main page.
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