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Sunday, December 16, 2007 8:11 PM CST
HAPPY HOLIDAYS!!
To Whom It May Concern:
I hope this will be the last time that I have to write this. I'm getting sick and tired of things being stolen from Brandon's gravesite. This has been an ongoing problem over the last 4 years. There's no reason for this... Let my son rest In peace. If you are the one and you are reading this right now, I want you to know that YOU will get caught!!
The kids are all doing well. I'm doing ok for the most part. Trying to get through the holidays without Brandon is very difficult and depressing. Stealing from Brandon's grave Is not helping matters any... how selfish and cold hearted can a person be?
Please remember to pray for all of those sick kids going through transplant and also for those families that have lost a loved one.
Wishing everyone A wonderful Christmas and A healthy Happy New Year!!
Happy 37th Birthday!!- my wonderful sister Kim. I Love You.
With love,
Tina
Dear Brandon...My precious son
Merry Christmas to you sweetheart.I miss you and love you very much.
Love: MOM
Monday, November 12, 2007 5:54 PM CST
It is with much sadness that my friend Jenny passed away on Tuesday, nov 6th from liver failure. I will miss her very much. Jenny was the brave one that flew to Minnesota with me just a few short weeks after Brandon was diagnosed with Fanconi Anemia. I can only imagine the conversation that her and Brandon are having in heaven.
First of all I would like to thank each and everyone of you for your continueous guestbook entries. I also want to thank everyone for all the prayers during these difficult times in my life.
Angie and the boys are doing well. Jason is recovering from his surgery, still writing music and his girlfriend is expecting a baby girl in February. DJ on the other hand is not doing so well. Behavior problems in school and hanging out with the wrong crowd of kids..." typical teenager".
All of my Minnesota friends and family... I MISS YOU AND LOVE YOU.
Please remember to pray for all of those children going through transplant and for all of those that have lost their loved one.
Much Love,
Tina (Angel Brandon's Mom)
Dear precious angel Brandon...
I miss you and love you very much. Everyday I live is one day closer to being with you... See you in heaven sweetheart.
Love Always,
MOM
Thursday, August 30, 2007 7:49 AM CDT
10/30/2007
URGENT PRAYER REQUEST...
My best friend has been in critical care for the past 8 days, due to liver failure. She is slowly coming out of a coma as her body is filling with fluid and her blood pressure is dropping. The dr's are taking her off the vent in hopes that she can breathe on her own, if not the family will have to decide to put her on life support or to let her go.
*Hope everyone has a safe and Happy Halloween.*
It's hard to believe It's been 4 years since Brandon passed away. I can still picture my precious son laying on that hospital bed hooked up to numerous machines and IV's, waiting for god to take him home. His last and final words (as he was being sedated)were: mom make everyone get out of the room I need to tell you something. He never got the chance to tell me. It tears me to pieces not knowing what he wanted to say. I have this feeling he wanted to tell me he loved me and thanks for taking care of him.
It's so hard to update this journal, as I sit here with tears streaming down my face wondering why why why did my angel have to leave this earth at such a young age. He should be in school, playing football, playing PS2 with his brothers, just being a normal teenager. I HATE Fanconi Anemia... a horrible disease that takes so many childrens lives. I pray everyday that the Dr's will find a cure for this horrifying disease. PRAY! PRAY! PRAY!
DJ started back to school this week (8th grade) hard to believe he's growing up so fast.
Angie and the boys are doing fine. Jason is recovering from surgery he broke his collar bone for the 3rd time so his hip bone was removed and put in place of his collar bone.
To all of my Minnesota friends and families: Not a day goes by that I don't think of you. I hope to come for a visit real soon. Miss you and love you.
It's hard to believe the 35W bridge collasped, I can't count the number of times that I traveled over that bridge during my stay in Minneapolis. My thoughts and prayers are with those families who lost a loved one in this tragedy.
*Continue to pray for all those kids with life threating diseases and for those going through transplant.*
Thanks to all of you that continue to check the website. Please make sure you sign the guestbook so that I know you stopped in. THANKS!
Lots of love...
Tina (Angel Brandon's Mom)
Brandon... Happy belated birthday son! I miss you and love you very much. Can't wait to see you again.
* LOVE ALWAYS AND FOREVER*
MOM
Wednesday, February 28, 2007 9:48 AM CST
Just a brief update to let everyone know that I'm doing alright. Alot going on these days so please forgive me for the lack of journal updates.I promise to do better the next time.
First of all let me start by saying THANK YOU for your continueous guest book entries. I check them quite often so please make sure that you sign in whenever checking the website. Also... for my Minnesota friends... I have not forgotten about you. I check the websites almost daily, but don't always sign the guestbook. Just know that I think of you always especially those families that have lost their loved one.
Angie and boys are doing fine. Jason is dealing with a broken collar bone and may have surgery in the near future. DJ on the other hand is not doing so well. Major school problems, currently in out patient counceling, will not say anymore I just ask that you say an extra prayer for him.
I would like to ask that you keep the following people in your prayers...
My niece Brittany had her appendix removed nine days ago. After vomiting and passing blood a ct scan was ordered and showed a very large amount of infection in her stomach. Her temps remain high, we are awaiting results from blood cultures and chest xrays.
My brother is recovering from an accident at work. He was hospitalized for head trauma, broken ribs and torn ligaments in his back. He's now experiencing double vision in his eyes.
My sister will be spending the next nine years of her life in federal prison. I will not discuss any info. about this, but ask that you keep her children in your thoughts and prayers.
My ex mother-n-law (Brandon's grandmother) is currently in the hospital going through some very difficult times. She is dealing with mental health issues. Please pray that she will soon get better. she has been a patient for well over a month.
Now you know why I do not have much time to update the webpage.
Remember those children and families that are currently going through transplant and also the families that are grieving over the loss of their child... including myself and Brandons father.
Until next time...
Tina (Angel Brandons Mom)
Brandon... Mommy misses you and loves you very much.
Thursday, July 27, 2006 8:21 PM CDT
First... Let me start by saying that I am very sorry for the lack of updates. I did'nt realize the last time I updated was around Christmas. My how time flies!!
Just a quick update to let everyone know that I'm doing alright for the most part. I'm just like any other mother who has lost a child, I have some good days, but mostly bad days because I miss my son so much. Today has been very difficult for me... BRANDON"S BIRTHDAY. He would be 15 years old. I have to smile as I'm sitting here typing, I remember us celebrating his 12th birthday in the hospital just a month before he passed away and he looked at me and said... "Mom I just realized I am a pre-teen." "YES" a teenager next year now I can really get the girls. He was so funny, always made me laugh. That child had a great sense of humor.
The kids are doing well... Jason has started a new job and just bought himself a new car. After being locked up for 2 years he's now learning what responsibilty is all about. I have to say he has come along way over the past years. He really misses his brother alot, playing football, PS2 games and just hanging out. He just recently got a tatoo on both arms. One says... Born to be a soldier July 27,1991 and the second one says... Life after death August 30,2003.
DJ as always has the most boring life. Can never find anything to do with his time. Yes he is ready for school to start. This year he will keep his self occupied playing 7th grade basketball. I'm hoping this will last considering he lost all interest in sports when Brandon passed away. I assure him that his brother is watching over him at all times so I think that somewhat eases his mind.
Angie and Anthony are doing well. They have added a new member to the family. Little Blake Ryan was born on June 22nd, which also happens to be Brandon's aunt Diane's birthday. It was funny how that worked out because she called me at home and I did'nt answer so she called the hospital and sure enough we were there. It was a big surprise for her.
Speaking of babies... I think I forgot to mention in the previous update that Brandon's father has added a new member to his family as well. A little girl named Kimbre Leigh.
For all of my Minnesota friends out there... I miss you and love you!!
Please remember all of those children that are going through transplant and those families that have lost loved ones.
** Remember to sign the guestbook when you read the journal so I know you checked in.** I sometimes feel that people have forgotten about me. THANKS.
Lots of Love...
Tina (Angel Brandon's Mom)
My dearest angel Brandon...
HAPPY BIRTHDAY SWEETHEART!!
I sure wish you were here to celebrate your 15th birthday, but I know you are celebrating in heaven with all of your angel friends. Not a day goes by that I don't think of you and wish that I was holding you in my arms.Everyday I live is one day closer to being with you son. I miss you baby.
Love always
MOM
Friday, December 9, 2005 11:05 AM CST
HAPPY HOLIDAYS!!
Sorry for the lack of journal updates. Bet you guys thought I fell off the face of the earth. WRONG!! I did'nt realize how long it had been since my last update. WOW... almost 5 months. I promise not to let this happen again.
Hope everyone is doing well out there.
As for me... I'm still working 6 days a week plus doing my home schooling for pharmacy technician. I'm hoping to graduate sometime next spring.
**DEPRESSED... this is not a good time of the year. This will be my third Christmas without Brandon. I'm beginning to believe it gets harder every year. I miss my angel so much, but I know that he will be celebrating Christmas with Jesus Christ and his angels.
The kids are doing fine...
Angie is working everyday and taking care of Anthony. He is getting so big, he just had his 4th birthday in November.
She just found out she is having another baby in June.
Jason is doing great. He was released from Juvenile Detention Center the day before Thanksgiving. What a wonderful Christmas present that was. It was a long 2 years without him.
DJ continues to do well. He is doing absolutely wonderful in school. He is in jr. high and he just loves it. He's at the age where it's all about girls, hanging out with the boys and walking the halls.
I would like to ask that you say some extra prayers for my "little buddie" Robbie and his family. Robbie has been diagnosed with Fanconi Anemia. He is currently going through chemo and will soon start his transplant journey.
Please find the time to drop this family a few lines. You may visit Robbie's website at: http://www.caringbridge.org/mi/robbie
...Remember all the children in your prayers.
Pray for those families that have lost their loved ones (including mine) and the ones still struggling.
Blessings to all of you. Thank you for your support.
Lots of love...
Tina (angel Brandon's mom)
Dear precious child of mine...
MERRY CHRISTMAS!!
Mommy misses you and loves you very much.
Wednesday, July 27, 2005 11:47 PM CST
Today is Brandon's birthday he would have been 14 years old... HAPPY BIRTHDAY my sweet angel!!
I'm truly sorry for not updating as much as I should. It seems that there is not awhole lot to write about anymore.
Today is such a sad day for me knowing it's Brandon's birthday and he is not here. I know deep down in my heart that he is celebrating with all the other angels in heaven.
Just a quick update on how things are going:
I'm doing alright for the most part working everyday and taking care of the other kids. Angie and DJ are doing fine. Jason remains in juvenile detention we are hoping to have him home sometime after Sept. He is doing really well. He graduated this year and also ranked in the top 4 out of the whole country for SAT testing. He continues to write music about Brandon and now has 14 songs ready for his first album.
Thanks to all of those people that continue to check on us. May god bless you.
Lots of love,
Tina (Angel Brandon's Mom)
My dear precious angel... HAPPY BIRTHDAY sweetheart!! Today is a special day, but a sad day. I wish you were here to celebrate your 14th birthday. I miss you and love you son.
Love always and forever... mom
Saturday, December 18, 2004 9:30 AM CST
Sorry for not updating in awhile. Hope everyone is doing well. I want to wish everyone a MERRY CHRISTMAS and a HAPPY HEALTHY NEWYEAR!!
Since this is a very depressing time of the year for me I thought it would be nice to take a trip to Minnesota and visit with my "home away from home" family and friends. My mom and I arrived at the airport yesterday and we are staying with Mica and her family. (Who is one of my closest friends from the Ronald McDonald House) she also lost a child (Kimbe) shortly after Brandon's passing.
I also plan to visit the staff and families at the Ronald McDonald House and the nurses and doctors at the hospital. As well as my wonderful care partners... Lisa and Glenn.
I will be heading back home tomorrow so I will try to update and let everyone know how my visits went.
The kids are doing fine. Of course this is a very difficult time of the year for them also. Even though Brandon is not visible we all know that he is with us during the holidays and everyday.
DJ is doing good. Working very hard in school to bring up his grades. He's looking foward to Christmas, thinking he is getting a "pocket rocket."
Jason is doing well. He is still in Juvenile Detention and expects to be until his release on Sept.2,2005. He has been passed on through 12th grade and currently doing college work. Not sure where this kid got his brains, but I know they did'nt come from me (haha). Also he is working on getting a schlorship for James Madison University or Bridgewater college. KEEP UP THE GOOD WORK SON!!
Angie is doing as well as can be expected. She is the sensitive child that shows all of her emotions. She had a dream that someone called her and said... she would be getting an ultrasound done and she will see Brandon smiling. Is this a sign? Is Brandon telling her something? We will just have to wait and see.
My grandson (Anthony) is doing great. He is such a mess. 3 years old and a very smart kid. I guess he has Jason's brains huh. It's so funny because he is always seeing boys that remind him of Brandon. He will say... look look there's Brandon. It amazes me how much he talks about Brandon. Anthony was always Brandon's favorite person. I remember when Anthony came to Minnesota to visit Brandon in the hospital. This was a surprise for Brandon and if you could've seen the look on his face when Anthony walked through that door. It was like Brandon got better real quick. This is just one of the special memories that I have of Anthony and my precious ANGEL BRANDON.
I would give you an update on Jayden Lee, but I'm kinda lost in words. Sorry to say we found out 2 weeks after he was born that Jason was not his father. Even though he is not a part of our family, we will never forget that Jason named that baby boy after himself and Brandon.
This is all the updates that I have for right now. I will try hard to add another entry soon.
** Please check the bottom of the page. I would like to share a song with you about Brandon that was written by Jason.**
Thank you so much for checking on us.
Love: Tina and family
Dear precious son... I want to wish you a Merry Christmas . I only wish that you could be home with us. Even though I can't see your beautiful smiling face I always know that you are near. Another angel friend has arrived with you... your step-grandmother. Each day that goes by is one day closer to being with you. I miss you and love you. Oh yea... almost forgot to tell you that I bought a santa for you and placed it on your grave.
**MOMMY LOVES YOU FOREVER**
Written by: Jason Gett
"ONE MORE DAY"
HOOK x2
Give me one more day with my brother...
(God please let him breathe)
Give me one more day... give me one
(Just one more day)
Verse 1:
Why we struggle to live if life's gonna bring us pain/
put a smile on my mom when you was born to the game/
give him one more chance, to breathe in the streets/
shed tears in our dreams but we bleed in the streets/
and I love my baby brother, his lifes undercover/when
you made him stop breathin brought pain to my mother/bring him back to the livin/the life he was givin/was'nt meant to be taken so my mind is forbiddin/to pray wit you/taken love from my heart I never hated you/I don't understand
why we're forced to decease/when we try not to sin even talk to a priest/call it peace if you want why we walkin wit heat/stalkin the streets cause our minds go stray/stay cryin in my mind till he brings me the day/your loves here to stay/pray to god one more time give me one more day/
*HOOK*
Verse 2:
Just one more chance, to spend time with him/blindin him from his family ain't bein kind to him/so lifes crooked all a sudden,tell him I love him/while he's lookin down on me never place no one above him/you never left my heart always be in my dreams/with a smile on your face, life ain't what it seems/but you flew without trace and your sins are left clean/now your spirits are with us,but god he's just a kid/wish I had one more chance to encourage you to live/I regret all the times, I was'nt by yourside/when I ride wit a stride knowin god took my pride/but he made you a soldier,struggled to the end/mom's cried on my shoulder now I'm stuck in the pen/hope you rest in peace,my heart is believin/that I'm bleedin in my mind and you're gone for a reason/but I'll see you at the top,when I stop breathin/
*HOOK*
Ending:
I guess god was ready for you,to bring light to the world cause you're the one/even though that pain is what we went through,let the good die young/
We'll always love you,and we miss you...
So let the good die young
*HOOK*
Monday, August 30, 2004 8:40 AM CDT
Today makes one year that my dear precious son Brandon earned his angel wings. At this time last year I was spending my last final hours with Brandon in his hospital room where he had been fighting for his life for 7 months. Why should any mom have to go through everyday life without their child? I keep reminding myself how important it is to never question the word WHY. God took my son for a reason. No more pain and suffering for precious little Brandon.
I'm trying to do my best with this journal entry, but at the same time it is very difficult the tears are streaming down my face and I'm losing all means of concentration.
The balloon release that was held at Brandon's gravesite on his birthday turned out very nice. Lot's of friends and family members attended and we all wrote messages on the balloon's and sent them to Brandon. What do you know... when I let mine go it stayed behind everyone else's. Thought that was kinda strange.
I'm proud to announce that I'm a grandma again. Jason's baby boy was born on Saturday Aug.28 at 11:30am. He weighed 8lbs 2oz. His name is Jayden Lee... half Jason's name and half Brandon's name. It's so sad that Brandon can't be here to see him.
This is all the updates that I have for right now. I need to go so that I can get to Brandon's gravesite and visit with him. I will try to update again soon.
**Thank you so much for checking in and also for the guestbook entries.** Your continueous support is greatly appreciated. Much love to all of you.
** Please continue to pray for all the children and families at Fairview University.Units 4A and 5B.**
To my Minnesota families: My thoughts are still with you each and everyday. Miss you and love you. Hope to see you soon.
I have added new photos... don't forget to check them out.
My dear precious son... It's been 1 year today that you earned your angel wings. When I woke up this morning the only thing I could think about was you and the last precious moments that we spent together before you went to heaven. I know you are still with me I just can't see you. Heaven is like a 2 way mirror... You can see me, but I can't see you> only in my dreams. I made a memory wall with all of your pictures so I can see your beautiful face. I have pictures of you in every room of my house. Angie, Jason and DJ misses you and loves you very much. Your cute little nephew was born on Saturday. Jason named him Jayden Lee which is half your name and half his name. How I only wish that you could be here to see him. Mommy needs to go now so I can come visit you. I miss you and love you very much.
love always and forever
mom
Tuesday, July 27, 2004 8:38 AM CDT
Happy Birthday Brandon
It's hard to believe that Brandon would be turning 13 years old today. Last year on this day we were both sitting in his hospital room talking about him becoming a teenager. I remember Brandon saying to me... mom when I turn 13 that means I get to have a girlfriend right? God how I wish he was here to share those feelings with me today and everyday. I am so mixed with emotions right now. I woke up with tears streaming down my face this morning and missing my precious angel so much. Things just don't seem right anymore. I should be eating cake and icecream with him today, but instead I will be having him a party at his gravesite. For those of you who wish to attend it will be held at: Rest Haven Memorial Gardens in Harrisonburg at 6:30pm. For my Minnesota families and those of you that cannot attend please let Brandon know that you're thinking of him on this speacial day.
Much love
Tina
My precious angel... Thinking of you on your birthday. I'm getting ready to play our favorite song that we sang to each other last year when we celebrated our birthdays. (50 cent) WE GONNA PARTY LIKE IT"S YOUR BIRTHDAY!! I will be sending you something special in a balloon today. I miss you and love you very much son.
Angie, Anthony and DJ are doing good. Jason broke the bones in his hand and had surgery, but he's feeling ok now. They all miss you and love you very much. Watch for there balloons also.
Thursday, May 20, 2004 6:25 PM CDT
I apoligize for the delay in my journal updates. My hands have been out of commision due to carpal tunnel syndrome so therefore I have alot of catching up to do. Let me start where I left off back in February. I was able to attend Brandon's memorial service in Minnesota. When I arrived at the Ronald McDonald House I was surprised to see angel Dustin's mom waiting on me. It was so nice to see her. We sat around the table and shared lots of memories of our precious angel's Brandon and Dustin. I would like to send Kris a special THANKS for reading the poem at the memorial service. During my 5 day visit in the twin cities I made my rounds to the hospital everyday to visit the nurses that took care of Brandon. It was good to see them, but at the same time I was a nervous wreck. Just walking through the doors on unit 4A made me weak. The room that Brandon died in was in clear view of the nurses station. "What a sad moment that was." I just wanted to walk in that room and see my precious son.
Things at home are going well. Just trying to live life day by day. Angie is doing good she just started a new job. DJ is doing well also. He is getting excited as the last day of school will soon be here. Jason is about as well as can be expected. He is still serving time in Juvenile Detention where he will remain until September 2005. He is awaiting the arrival of his new son who is expecting to be born in August sometime between Angie's birthday and Brandon's day of death. I have to inform you that the baby will be named after Jason and Brandon. {JAYDEN LEE}
To my Minnesota family: I will be arriving in Minneapolis somewhere around July 10. Hope to see you there. I will be meeting Kris there for Dustin's memorial service.
I miss you and love you all.
I would like to ask that you pray for Marshall. He is back in the hospital with some type of infection. Please take the time to visit his website and send him a get well message. http://www.caringbridge.org/la/marshall_n_amelia
*Please continue to pray for all those sick kids on units 4A and 5B*
**Remember to hug your children everyday and tell them how much you love them.**
Thank you so much for checking in and for all your continuous guestbook entries.
Until next time take care and god bless
Tina (angel brandon's mom)
My dear precious son... I miss you and love you very much. I think of you every second of the day I even come to visit and talk with you often. Everyday that goes by is one day closer to being with you in heaven. I want to let you know that I had a good birthday. I thought about your plans that you made for us last year on my birthday and mother's day so I played the song that you sang to me. "We gonna party like it's you birthday." (50 cent) I also ate some cake for you. IT WAS A GREAT DAY!! Much love to you angel.
Love forever and always
mom
Thursday, February 12, 2004 8:58 PM CST
** New Pictures **
Hi everyone... One year ago today Brandon recieved his bone marrow transplant and began his new life. Oh how I wish that Brandon and I were at Fairview University for his one year checkup. Instead he is celebrating his "new life" in heaven. Where did the time go? The first seven months went by so fast, but now that Brandon is not with me the time seems to be dragging along. It still seems like forever since I have seen his sweet little face. I have to say that my pain is not getting any easier. I have to remember this quote from my friend in Minnesota... "Everyday that passes by is one day closer to being with Brandon." This is very true. I can't wait for that day!!
Angie is doing good, working very hard to take care of my grandson. Jason graduated from bootcamp and will soon be moving to another facility. *News Alert* He is going to be a daddy in August. Yes this means that i'm going to be a grandma x 2. DJ is doing well... of course missing his brothers. They were always his favorite football players. Now he is stuck with me all the time and very much spoiled rotten. My theory as always... "KIDS FIRST."
I would like to thank everyone for all of their support and prayers. Also for the guestbook entries. Please continue writing. I love to hear from everyone.
To all of my Minnesota families... I MISS YOU, LOVE YOU AND WILL SEE YOU SOON!!
** Please remember to hug and kiss your kids everyday and tell them you love them.**
These families are still in need of prayers. Please take a moment and pray for them.
Marshall... Is feeling better and maybe getting discharged from the hospital soon. Please send him and his family a message to let them know that your thinking about them. http://www.caringbridge.org/la/marshall_n_amelia
Cade... Is on the vent and also dialysis. He is having a very difficult time. Please keep baby Cade and his family in your prayers. Send them a message to let them know that their being thought about. http://www.caringbridge.org/nc/cadesmith
Saralee... Has been on the vent for over a month. Please pray that the Dr's can find out what is going on with her lungs. Send Sara and her mom a message to let them know that you are thinking about them. http://www.caringbridge.org/mn/saralee
HAPPY VALENTINES DAY!!
Much love
Tina (angel brandon's mom)
Dear precious son... I miss you and love you very much. I have something to tell you and your gonna be so happy. Your "secret girlfriend" Kristen and I have become very close. We keep in close contact and talk about you often. Guess what? She even calls me mom!! How nice is that Brandon? She is such a little sweetheart. I'm sure she will send you hugs and kisses on Valentines Day. Love you lots sweetheart.
Love always and forever
mom
Sunday, January 18, 2004 12:58 AM CST
It is with a heavy heart that I inform you of another loss in my Minnesota family. My dear precious friend Kimbre lost her battle with brain cancer on January 7th which was her 14th birthday. Kimbre and her family lived just across the hall from Brandon and I at the Ronald McDonald House. She was such a sweet and caring little girl. I have lots of memories of her and Brandon together. They became very good friends and now they are together once again in heaven. I ask that you say an extra prayer for her family and send them some of your karma, as they begin to adjust to life without her. If you would like to leave her family a message or read Kimbre's journal, you may visit her website:
http://www.caringbridge.org/mn/kimbre.
Jason, Angie and DJ are doing as well as can be expected for all they have been through in the past year. They miss their brother soooo much. Myself... I'm doing good, but life is not getting any easier and I don't think it ever will. I lost my brother and nephew in July 1991 (3 weeks before I gave birth to Brandon)and the pain is still very sharp, but nothing compares to losing my own son. This is pain that will never get any easier. Is it any wonder that I have continueous nerve pain?
There will be a memorial service held for Brandon on March 1 at Fairview University Medical Center in Minn. I will be arriving on February 27 and will stay until March 2. I plan to visit some of the children on Units 4A and 5B."Can't wait to see you Marshall." If any of my RMH families will be there for checkups during this time please let me know so I can make arrangements to see you.
I have some special prayer request for the following families. Please take time out of your schedule and write them a message in their guestbook.
Marshall... http://www.caringbridge.org/la/marshall_n_amelia
Saralee... http://www.caringbridge.org/mn/saralee
Cade... http://www.caringbridge.org/nc/cade
** Please remember to hug your kids and tell them that you love them everyday**
Much love,
Tina (Angel Brandon's mom)
My dear precious son... It has been almost 5 months since you've been gone. It seems like a lifetime since I have seen your sweet little face. I miss you and love you very much.
Love always and forever,
Mom
Saturday, December 13, 2003
Happy Holidays To Everyone
I am sorry for the lack of updates. I have tried many of times to write in ethis journal, but the tears stream down my face and I lose all means of concentration. The holidays are here and I am a nervous wreck. I'm not sure how I will hold on to myself on Christmas Day. This is Brandon's favorite time of the year. It's just not going to be the same without him. I will continue to buy him gifts in rememberance of "my precious angel." I will surely miss Brandon sneaking into his presents and saying... "Mom you don't have to wrap my presents just go ahead and give them to me early and I won't tell my sister and brothers." This is one of the funny and special memories that I will always have of Brandon. I visit his grave a couple times a week which is 5 minutes away from my house. He has such a beautiful gravesite. Full of flowers, angels,windchimes, a cross that I had made for him with "son" written on it and a picture of him and his daddy. His headstone will be placed sometime in the spring. It will have his football picture on it. I hope to be strong enough to take pictures and share them with you.
Just to let everyone know that Angie and DJ are doing well. On the other hand Jason is not doing so well. He is currently in Juvenile Detention for a long period of time. After Brandon's death he gave up on life and got himself into a load of trouble. Jason is grieving so much that he took a knife and carved Brandon's name into his arm. Now everyone knows why my nerves are SHOT. I feel like i'm slowly losing my children. Sometimes I find myself questioning GOD about this. I listen to that song all the time "Only God knows why." If you have'nt heard it you should consider listening to it. Kidrock sings it and it is a GREAT song.
I want to mention that I made a trip to Washington DC last weekend. I went to "The Candellighters Ceremony" This is a special event for children with cancer and children that have lost their lives from cancer and rare diseases. I purchased a ribbon in "Memory of Brandon" and it was placed on the 25foot Christmas Tree.I also remembered all of the other precius children from Fairview University Medical Center that lost their lives as well.
One more thing before I close... I have a few prayer request.
~ Marshall Bennett is a 10 year old boy with Fanconi Anemia.(Brandon's Buddie) He is 3 months out of transplant and continues to have numerous complications. Please remember to say some extra prayers for him and his FAmily.~ You can visit his website at: http://www.caringbridge.org/la/marshall_n_amelia
~ Many prayers are needed for those famiies that have lost their children due to cancer and rare diseases including myself, Dustin's family, AJ's family, Jenny's family,Jake's family, Mandy's famiy and the rest of you that I did'nt mention.~
~ Please remember to keep praying for all the children on units 4A and 5B.~
** Checkout Brandon's quilts made by: Quilts of love
http://quiltsoflove.com/quilt/brandonk/brandon.html
http://www.quiltsoflove.com/memorials/brandon/brandonmemorial.html
** Thank you all for the guestbook entries. Even though I don't update often. I still check Brandon's webpage daily. Thanks for your love and support.
To all of my Ronald McDonald House Families: I miss you and love you!!
Much Love
Tina
~ To my dear precious son Brandon~
I miss you and love you very much. I still remember the day in your hospital room that I had to say my final "Goodbye" God took my life, but he did'nt take you from me forever. I will someday meet you again and our family will be back together.
~Mommy loves you forever~ My precious angel.
~Daddy misses you and loves you very much~
~Your sister, brothers,Grandparents,nephew Anthony and friends miss you and love you.
7-27-91 ~ IN MEMORY OF BRANDON ~ 8-30-03
Life is just a test and an obstacle we recieved from god to prepare us for death,
So the ones who learns the lesson are exceptional as it's great for god to take their last breath.
Brandon will never be forgotten as he is molded to our memory and we perpetuate his expressions,
As the biggest influence in his life I sacrifice mine to never reveal his confessions.
To all of us the sound of his angel feet will follow us and he will visit our dreams,
To let us know how amazing it is with no more pain and no more screams.
I will remonstrate until my death to anyone who says he was a bad child,
He retrieves all of our hearts as we weep to this spontaneous unsolved trial.
I can't explain how close Brandon and I was as we went through good times and bad,
Physically my favorite football player is gone which makes this time sad.
I will cherish my younger brother and older sister more than ever as life goes on,
As I understand how precious and fragile life is once you've lost one.
Brandon Lee Knupp is loved across the family so let him live in our hearts,
The rebirth birth of his soul will soon be here for his life is yet to start.
So remember as our minds are confused and our nerves are high strung,
God only takes the great ones so let the "GOOD DIE YOUNG."
I conserve his emotions as he was my amulant and a charm of a brother,
I love him more than words can say but the strongest person in the world is...my mother!
Written by: Jason~ Brandon's brother
Sunday, August 31, 2003 1:30 PM CDT
Brandon lost his battle with Fanconi Anemia on Saturday August 30, 2003 at 1:10 pm. (Minnesota time).
Brandon was a fighter and a true inspiration to us all. He touched the lives of everyone that knew him. He will forever live on in our memories. We cherish every minute we had with Brandon here on earth. We find comfort in knowing we will meet Brandon again one day.
All of his pain, struggles & obstacles no longer exist.
You are free to fly baby, you're finally home.
~In Loving Memory of Brandon Lee Knupp~
7-27-91 - 8-30-03
Sunday, August 31, 2003 1:22 PM CDT
Brandon lost his battle with Fanconi Anemia Saturday August 30, 2003 at 1:10 pm.
Brandon will live on in the hearts of many. He was a very special little boy that touched the lives of everyone who knew him. He was such an inspiration to us all.
All of his pain, struggles & obstacles exist no longer.
You are free to fly baby, you're finally home.
~In Loving Memory of Brandon Lee Knupp~
7-26-91 8-30-03
Wednesday, August 20, 2003 1:25 PM CDT
Day +189
I apoligize for the delay in the journal entries. I have been so busy and there is just not enough hours in a day for me.There has been so much going on in these past 2 weeks that I can't even think straight. I will give you a brief update today and the rest will have to wait for later.
Let me start by saying that Brandon was given a double dose of medications by accident 12 days ago. He immediately started vomiting. After 3 days he was taken to the operating room for an endoscopy and a biopsy of his stomach. The test shows that his stomach is severely inflammed and has numerous blood blisters.The dr.s have no explanation for this problem. The vomiting continues so an xray will be done today and hopefully we will have more answers tonight.
Last night Brandon started running a fever of 103.1, blood cultures were done, but it will take 72 hours to know if anything is growing. A CT scan of the sinus and chest were done and the results show that there is some type of infection near the lungs and fluid around the heart. Brandon is scheduled for an echo gram sometime today and I should have those results tonight.
Another issue we are dealing with is foot pain. This is minor, but has been an ongoing problem since he was taken off the ventilator. An MRI has been done, but we have no results yet.
Brandon is currently on unit 5B, but we have just been told to pack our things that we are moving back to unit 4A. The dr.s feel that Brandon will be better taken care of on transplant unit. I will be sure to let everyone know the results as soon as I hear from the dr.s tonight.
Please remember to PRAY PRAY PRAY for Brandon.
Much love,
Tina
Saturday, August 2, 2003 2:19 PM CDT
Day 171
Sorry for the lack of updates.This week has been very busy for me. On Tuesday I had Brandon a HUGE birthday party in his room.I think we had approx. 50 people that stopped by including... BMT dr.'s, unit 4A-4B nurses,social worker,child family life specialist,care partners,etc. We had some very good entertainment. Dr. Peters performed his Michael Jackson dance while Tony (meal delivery)sang happy birthday. We all had a blast!
On Wednesday I moved our belongings to another room at the Ronald McDoanld House.After being here for 6 months, I thought it would be nice to have a different scenery. Brandon has not seen the room yet, but he is definately looking foward to the more "homey" environment. Our room number is now 325 and phone number is (612) 379-9136.
Brandon continues to do well although we still have alot of things that have to be arranged before discharge. After 4 weeks of not eating he still isn't interested in food. He is currently on TPN which is giving him his vitamins and minerals.We are hoping that his new meds for boosting his appetite will soon kick in. Another issue that we are working on is getting him to walk. He can take a few steps with the walker, but then he is so warn out that he can't move anymore.Physical therapy will continue to work with Brandon until he is strong enough to walk again by himself.
Today his blood counts are as followed... WBC 2.9 ANC 2.1 RBC 7.9 (transfused) and platelets 20,000. These counts are somewhat good, but still below the borderline.
I think we finally have the glucose under control. HOORAY! Predinose is being tapered to every other day so this means no more carb. counting, checking blood/sugars or insulin. This will take a heavy load off my shoulders:)He will still be required to take lots of other medications everyday for quite sometime.
I would like to thank everyone for all the cards, emails and presents that was sent to Brandon on his 12th birthday.*A special thanks goes out to a very special little girl named Karly Ross* who also has FA. Thank you so much for the letter and pictures.A great BIG thanks to the FA families that have included Brandon in your journal updates. Thanks guys!!
This is all the updates that I have for you. Please check back later for more updated information.
Love and prayers
Tina
** As always please remember to keep praying for Brandon and all the other kids on units 4A and 5A-B-C.**
*Sending all my LoVe, HuGs and KiSsEs to my kids back home* :)See you soon!!
Saturday, July 26, 2003 8:47 PM CDT
Day 164
Hi everyone
I can't begin to tell you how happy I am today.First of all I would like to take the time and thank all those people that have been praying for my son. God has answered many prayers for this very sick child.
After 18 long days and sleepless nights Brandon has been taking off the ventilator.What a nice birthday present! He continues to do well except for the outbreak of shingles that he still has.They are driving him absolutely crazy!
Brandon's counts have dropped, but they continue to make on their own. His WBC 4.0 RBC 9.6 (transfused) and platelets 31,000. All vitals are good and his glucose remains under control.I can't say how many IV medications Brandon is currently taking, but my guess would be atleast 20 per day.
Dr. MacMillan is very pleased with Brandon's progress, but says that he will remain in the hospital for quite sometime.I refuse to push the issue and will not ask for another return date back to Virginia anytime soon.
This is all the updates that I have for you tonight. Please check back later for more updated information.
** Please remember to keep those prayers coming for Brandon as well as the other kids on unit 4A**
Good night and love to all
Tina
Thursday July 17, 2003 9:11 PM CDT
Day 155
Brandon is progressing slowly day by day.His lungs are sounding good and the chest xrays are looking very clear.Brandon remains on the ventalator,his eyes are still closed, but he is responding to voices quite well.He has been taking off the paralize medication so he can now move his arms,legs and head.I find myself standing by his bedside throughout the day so he knows that I am in his room.I even turn wrestling on the tv for him and play his favorite music "EMINEM". Although he will not remember any of this he is enjoying it at the moment.I must mention that this is the most scarest thing that we both have been through over the past 6 months.I certainly hope that this is the last "bump in the road" that we run across.
Brandon's blood counts continue to produce on their own. Today his counts are WBC 4.9... with help from growth factor over the past week. ANC 4.1, RBC 11.7 and transfused this morning. Platelets 48,000.Glucose is ranging between 100-200. heart rate... 60 blood pressure...@p.m. 126/77 and co2... 90-97R>Brandon has several Dr.s that stop by daily to check on his progress.BMT-Dr. Orchard, Pulmonary-Dr. Sweney, Respitory therapist and lots of nurses.They all seem to think that Brandon is doing fine and will soon be back to mini-"EMINEM"
This is all the updates that I have for you at this time. Please check back for more updated information.
I would like to thank each and everyone of you for your thoughts and prayers. Please remember that the prayers are always needed.
**Brandon has a birthday coming soon.He will be 12 years old on July 27th.Please be kind enough to send him a card.He loves getting mail!!
I have included a list of Brandon's medicines for you:
Vancomycin
Versed
Insulin
Lactulose
Neurontin
Prazosin
Ceftazidine
Caspofungin
Dilandid
Zantac
Enalapril
Colace
Miralax
Lasix
Nystatin
Magnesium
Cytotec
Acyclovir
Cyclosporin
Prednisone
Bactrim
Amlodipine
Celexa
Vfend
Monday, July 14, 2003 3:33 PM CDT
Brandon is doing better today! His lungs sound good, and the x-rays are clear! He is still on the ventilator, but he's making progressing! He was taken off the medication that paralized him, and put on chlorahydrate, a medicine that will relax him, and leave him comfortable. He started to fight the ventilator once he was removed from the medicine that left him paralized. His blood pressure went up, but is now under control. His counts are good, and he's been receiving growth factor since early last week.
His vent pressure is still at 45 which is good compared to the 80 it started out at. The doctors said that Brandon has made great progress since this all happened last week. As we know more, there will be more updates. Please keep those prayers for Brandon coming.
Wednesday, July 9, 2003 0:16 AM CDT
As I don't know exactly what to say in this entry, I will do my best in explaining what's going on at this moment in time.
Brandon was diagnosed with shingles on Saturday July 5th, therefore he was re-admitted to the hospital. All was going well, as the blistered shingles began to dry up. Brandon was very excited about coming home. Although he hit another bump in the road, he was determined that this was not going to keep him from coming home on July 15th. He was doing well up until early Tuesday morning.
It started at 4:00 am Minnesota time for Brandon. His mom noticed that he was beginning to swell. She informed the doctors of the situation, and they cut back his intake of fluids that had been pumped into him. As time went on things took a turn for the worse. Brandon began having difficulties breathing on his own. Many tests were run on Brandon. He was found to have fluid surrounding his lungs. He was hooked up to an oxygen machine to help him with his breathing. As time progressed, things seemed to worsen, and Brandon was hooked up to a ventilater. This machine pushes air in and out of his lungs, giving Brandon a much needed break from all the hard work his body was doing. As tests results came back, Brandon was found to have a case of pheumonia. Brandon is in stable condition. This is all we know at this point in time, as it will take 48-72 hours for tests results to come back that were taken to find out whether the infection Brandon has is viral, or bacterial.
We know many prayers have been in Brandon's honor. At this point in time we feel that he needs them more than ever. Please take a moment of your time and pray for him. Thank you for all the support you continue to show.
God Bless You,
Brandon Knupp's family
Wednesday, July 2, 2003 11:22 AM CDT
Brandon has been discharged from Fairview University Medical Center. YaY, Way To Go Brandon!!
Brandon got the news yesterday that he'd been hoping for! He's coming home on July 15th. He's very excited and said "I only wish it was sooner". He will still continue his doctor visits at UVA. The doctor said there still may be times that he has to be admitted at UVA for infections he may develop.
Brandon will be coming home on Medications. He will still require his Glucose testing, as well as his daily injection of Lantis (insulin). He is currently taking antibiotics for the staph infection he developed just under the skin at the hickman sight. He will continue on the prednisone (steroid) until August. His counts have all come up a bit this week. That is a definate plus!
Brandon is scheduled for a check-up in Minnesota on September 13th. If all goes well he will be returning to school in October-November. He said he would rather go to school than have a bone marrow transplant any day! We sincerely hope and pray that all the other children that have undergone the same or similar procedures have a brilliant outcome, and a long and prosperous future. Brandon has had the privelege of meeting some very special children during his stay in Minnesota. Let us remember to pray for them as Brandon makes his long awaited, and well deserved trip home. God Bless.
Once Brandon is home, this Journal will still be updated on a regular basis to keep you all informed on his progress. Please stop by and sign his guestbook so he will know everyone continues to follow along with him.
Monday, June 23, 2003 9:30 AM CDT
Day 130
On Saturday evening Brandon was "re-admitted" back in the hosiptal.He woke up not feeling well, very tired and layed around all day.I took him downstairs for dinner and he had gotten so weak that he could not make it any further than the chair.Thanks to one of our friends for the help with getting Brandon back to our room.
After arriving at the hospital, Brandon was immediately given IV fluids and blood cultures were done.The results from the cultures showed that Brandon has a "staff infection" which means there is a bug within his blood stream and /or stomach.I guess this explains why his stomach is hurting him again.This will be treated by an antibotic that will last for 10 days.The Dr. has also ordered a stomach xray and I will have those results for you in just a couple of days.
Brandon's blood counts are looking good, but his hemoglobin dropped quite a bit over the weekend so he had to be given 2 units of blood.Todays counts are... WBC 2.9 ANC 2.3 RBC 12.1 and platelets 40,000.
Even though we continue to deal with these "bumps in the road" Brandon is doing well.
Dr.MacMillan had planned to send us back home within the next 2-3 weeks, but this time around could mean a major set back for us.I will keep everyone posted with our return date.
This is all the updates that I have for you at this time. Please check back later in the week for more updated information.
* I have added 2 GREAT websites for you to checkout The first one is Brandon's smile quilt and the second is a link to Austins (FA )webpage.Please take the time to checkout these two sites.* You will find them both at the bottom of Brandon's webpage.
** PLEASE REMEMBER TO PRAY FOR BRANDON AS WELL AS THE OTHER KIDS ON UNITS 4A AND 5B**
Love and prayers to you all!!
Tina
Monday, June 16, 2003 9:52 AM CDT
Today makes day +123!!
Brandon was discharged from the hospital on Saturday June 14, 2003. Hopefully this makes the last discharge, and the next adventure is back to Harrisonburg, Va. There's not much to say, as Brandon has only been discharged for two days now. When he was being discharged the pharmacy was very backed up, but Brandon needed his meds, and could'nt leave the hospital until he had them. So excitedly, he ran to tell his mom something about his meds, and he tripped and fell. That's right!! Brandon already encountered a few bumps and scrapes, and had'nt even made it back the Ronald McDonald House. He was then seen by the doctors again, but this was nothing of great importance,so he was released. He said he scraped his head and his knees a bit. It really was'nt funny, but when Brandon was telling the story, he made it seem comical.
While there are no more new updates at this point, there are new pictures for you to view. Just click on photo album and enjoy!!
Saturday, June 14, 2003 10:03 AM CDT
Today is Day +121, and Brandon continues to do well!!
Brandon has every intention of being discharged today. Dr. Macmillan said the plan is to have him discharged today, and home by the first of July. Brandon is happy about this, and can't wait to get home.
All of Brandon's test results came back alright from last week. He is still 100% engrafted. Brandon is on an antifungal drug called abelcet which he has been receiving for just over a week every Monday, Wed and Friday. The doctors had to temporarily stop giving him his voriconazole (his other anti fungal drug) as his liver labs were a bit abnormal – happened a fair bit with this drug. His liver labs are starting to get closer to normal and they will restart his voriconazole soon.
They also found no traces of GVHD (graft versus host disease) in his small intestine, so this is fantastic news!
Brandon is still taking a large amount of prednisone daily, as he will be coming home on this medication, and will continue taking it for the next 10 weeks.
As the day draws nearer for Brandon's return home, we're all getting a bit excited. There is nothing Brandon wants more than to be back home with his friends and family. Keep those prayers coming for Brandon, as he can never have to many!!! Please remember all the other children suffering from FA, and include them in your prayers. God Bless You.
Friday, June 6, 2003 6:03 PM CDT
Today is Day 113!! WOW, Brandon has come a long way since transplant!
Brandon is still in the hospital. Most likely he will remain in the hospital over the weekend. He had an ultrasound of his stomach at 5:00 P.M. (Minnesota time). We do not know the results of this test yet. Although, the test results from the x-rays he had yesterday showed a large amount of fecies in his tummy, so the doctor is giving him a higher dosage of marilax.
Brandon continues to produce those cells on his own!!! His counts are WBC 3.7, ANC 3.3, RBC 10.6, and his platelets are at 80,000. He has made these cells all on his own, so this is terrific news!
Brandon has overcome some huge obstacles in the past couple of months. These are the kinds of things you hope and pray that your child never has to go through. Brandon has been very strong, and among the bravest of the brave! Even when things seemed they could'nt get worse, he never gave up. He has fought this disease with the love of God, and your support. This illness did'nt take over Brandon's life, it made him stronger. Thank you again, for all the support you've shown to Brandon and his family.
Please continue to pray for Brandon, and all his friends on unit 4A.
Thursday, June 5, 2003 5:37 PM CDT
Today is day +112!!! Brandon is doing well!
Today Brandon was scheduled to be discharged from the hospital, but plans changed when Brandon's tummy was still slightly irritable. Dr. Macmillan choose to keep Brandon hospitalized, until this stomach problem subsides. His glucose is currently a little on the high side, but again, this is to be expected from the TPN, and the steroids.
On a better note, Brandon's blood counts are Great!! His RBC is 10.3, WBC is 3.4, ANC 2.8, and his platelets are at 77,000. They have dropped since the start of the week, but they still look Fantastic!
He had a stomach x-ray this afternoon, but as of now we do not have the results back yet. He has been eating well. Last night he ate a hotdog and salad. His appetite is still good.
Brandon was a busy little guy last night. Brandon and his friend Austin, who also has Fanconi's Anemia, decided to play doctor. They helped the nurses do labs. After they finished they went to the family room and hung out together for a while.
Hopefully, with all your prayers and well wishes, Brandon will be back home very soon. He misses all his friends & family, and can't wait to get home. We appreciate all the kind gestures everyone has shown to us throughout all of this. Please pray for Brandon, and all his friends on unit 4A. God Bless!
Sunday, June 1, 2003 10:32 PM CDT
Today is + 108!!! WOW, Way To Go Brandon!
Brandon is feeling alot better now. He is currently taking pain medication for his tummy, and 10 units of Lantis a day because his blood sugar is still up. Other than that things are looking good. As of now, the discharge date could be as soon as Tuesday, and we sure are ready for this. Hopefully, this will be the last discharge!
There's not much to update, so I will give you his schedule for tomorrow, as he will be vert busy. At 11:00 am Monday morning, he is scheduled for a bone marrow biopsy. He also has an MRI, and chest x-rays as well.
Brandon is very anxious about coming home. His spirits are up, and he's got his return trip planned out. He talks of everything that he is going to do when he gets home. Riding his 4-wheeler is at the top of that list. He asked the doctor if he could ride as soon as he got home, and he got approval, so he's very excited about that.
Brandon has'nt had any fevers at all lately. There is no more bleeding from last weeks mishap, so everything seems to be going well. He gave everyone a big scare, but all is well now. That's all the updates for now. Thank you all for your ongoing support, and all the prayers. God Bless!!
Please continue to pray for Brandon, and the other children on 4A.
Sunday, May 25, 2003 4:13 PM CDT
Day 102
I apolige for not updating the journal on Saturday,but there was just to much going on and I was far beyond writing.This weekend has been the most stressful days since Brandon's transplant.I have had a sick headache for 5 days now.
It's one thing right after another.After 29 hours of bleeding the dr.s finally decided to take Brandon to the operating room where another scope precedure was performed.The GI dr. discovered that Brandon was bleeding from his stomach and small intestine, this was caused by the biopsy that was done on Friday.When Brandon was cut in several different places within his stomach, this caused blood to start oozing from the tissues.
The dr. was able to repair the blood vessels by burning each end, but is not 100ure that this will heel properly.If this should not hold together then Brandon will be taking back to the OR for a surgical precedure.
The G-tube remains in place until all of the blood is pumped from his stomach, this could take several days.
Brandon's blood counts continue to rise, but he has needed 4 redblood transfusions and 2 platelet transfusions during this process.Today his WBC is 2.5 ANC 1.9 RBC 11.7 and platelets 132,000.
The biopsy results are back and shows a mild case of GVHD within Brandon's stomach,this explains the ongoing pain and complications.Brandon will continue taking his prednisone, but a much higher dose.He was currently taking this medication, due to the GVHD that was determined in his small intestine back in March.
Dr. Blazer continues to tell us that overall Brandon is doing well besides this stomach issue which he expects to heel within a few days.
Brandon has been a very strong boy these past 4 months and continues to fight his way to recovery.Please let him know that you are thinking about him by signing his guestbook each time that you log onto his website.THANKS!!
**Thanks again for checking in on Brandon's progress**
To all of our family and friends back home:We miss you and love you all very much!! SEE YOU SOON!
*PLEASE REMEMBER TO KEEP THOSE PRAYERS COMING FOR BRANDON AS WELL AS THE OTHER KIDS ON UNIT 4A*
Friday, May 23, 2003 6:47 PM CDT
Day 100
We finally made it to the 100 day mark!! Brandon and I had planned on CeLeBrAtInG tonight,but it turned out to be a very stressful day.Brandon woke up this morning starving to death and was very grouchy because he could not eat.This is the second day that he has been torchered.The scope precedure was scheduled for 1;00 yesterday, but got cancelled for an emergency situation so it was done at 2;00 today.At the same time of the scope precedure there was also a tube inserted through Brandon's nose that runs into his stomach.This is used to clean the inside of his stomach and will remain in place for about 48 hours.We are hoping that this will bring the stomach problem to an end.About 4 hours after surgery Brandon got very sick and started vomiting blood.Not only did this scare me too death, but it terrified him.By this time my nerves were shot.I've never seen anything like this before.The resident Dr. came by to check on Brandon and suggested that he be given a redblood cell transfusion, due to all of the blood that he has lost.Brandon will be monitored closely throughout the night,and of course I will not beable to sleep. Brandon continues to make cells on his own which is GREAT! I do not have record of the counts for today, but will give them to you in the next update.Overall Brandon seems to be doing fine, just one of those little bumps in the road that we will get taken care of soon.Dr. Orchard continues to inform us that Brandon is progressing well throughout this part of transplant.I have to tell you when these two get together LOOK_OUT.Brandon beats up on Dr. Orchard everytime he walks into his room.We still do not have a set date as to when we will be returning home.We may know more after Brandon's MRI and bone marrow biopsy, which is scheduled for next week.Jason and DJ are doing fine.Jason is writing his own music and has recently made his own cd.Angie is doing good also and will be graduating in June.Brandon and I miss you and love you very much!!
*Love and prayers to you all*
**PLEASE REMEMBER TO KEEP THOSE PRAYERS COMING FOR BRANDON AS WELL AS THE OTHER KIDS ON UNIT 4A**
Wednesday, May 21, 2003 10:08 AM CDT
Day +98
Let me start by saying that Brandon was discharged from the hospital on Monday.He seemed to be doing well, although he was having some discomfort in his stomach.
I took him shopping at Kmart and he begin having severe pain and got very weak.When returning back to Ronald McDonald House I immediately checked his glucose and it was extremely low so I made him eat a ton of chocolate, of course he did'nt mind that at all.
Tuesday morning I took Brandon to clinic and once again he started with the severe stomach pain so Dr. MacMillan put him back in the hospital.They have tried Brandon on several different medications, but nothing seems to be working.The Dr's are having a hard time figuring out what is going on inside of Brandon's little tummy.
Today Brandon is scheduled for a CT scan of his sinuses,this will show if there are any signs of infection.Brandon is also scheduled for another scope precedure today or tomorrow.This precedure is done by putting a scope down his throat and looking into his stomach.This should give us some idea of what is causing all of this pain.
Dr. MacMillan says that Brandon is doing well for this part of transplant.His counts look good and his cells are starting to produce on their own.This is WONDERFUL!!
Brandon's 100 day is Friday, he is scheduled for his x-rays and MRI.Next Wednesday Brandon will have his bone marrow biopsy done in the operating room.If things go well between now and then, Brandon and I should be returning back to Virginia very soon.
Once again thanks for checking in on Brandon and please remember to sign his guestbook so that we know you were here.
**PLEASE REMEMBER TO KEEP BRANDON IN YOUR THOUGHTS AND PRAYERS.**
Sunday, May 18, 2003 3:01 PM CDT
Day +95
Can you believe we have only 5 days before we hit that 100 day mark!! This is GREAT!, but Brandon still remains in the hospital. He has been discharged twice in the past three days.There has got to be a trick to this.I have packed and unpacked.It seems to be as we are ready to walk out the door of the hospital, he spikes a fever.The Dr. was almost certain that we were on our way out this morning until Brandon started feeling YUCKY!We will try again tomorrow and hope that we make it to the Ronald McDonald House without any complications.Everyone please keep your fingers crossed and keep praying for little Brandon. As I would call him... "The Hairy Little Monster." Overall Dr.MacMillan is pleased with Brandon's progress.She says his counts look GREAT for this part of transplant.Brandon is scheduled to have his chest x-ray done on Friday and his bone marrow aspiration on May 27.If things go well hopefully we will return back to Virginia shortly after.Sorry about the short and brief update,but this is all I have for you at this time.Please check back later for more updated information.
Thanks again for checking in on Brandon's progress and please remember to sign the guestbook so that we know you have been here.
**REMEMBER TO PRAY FOR BRANDON AND THE OTHER KIDS ON UNIT 4A**
Sunday, May 11, 2003 4:56 PM CDT
Day +88
HAPPY MOTHER"S DAY!!
Brandon is currently back in the hospital.Just as we were getting ready for the Vikings practice on Saturday morning, Brandon spiked a fever.There went all of Brandon's plans for my birthday and Mother's Day.So amazing we are back on unit 4A room 214.Feels like we just left this room about 12 days ago.I believe the staff was saving this room for Brandon.We walked in and the calendar was still showing April 28, Brandon's discharge date.
We are not planning to stay long this time.Dr. Grewald says 3 days minimum depending on what is found in the blood cultures. These test results will not be back for approximately one week.We are hoping this is just a viral infection and nothing more.Brandon is currentely being treated with an antibotic called Vancomicin.(spelling)
Overall Brandon is doing well and his counts are looking GREAT! WBC 1.9 ANC 1.6 RBC 9.1 and platelets 35,000.Glucose is ranging in the mid 100's which is excellent!He remains on the 10 units of insulin once daily until steroids taper.We should start to see an improvement around the middle of the week.
After coming back in to the hospital, Brandon and I still had a good day.Our care partner Glenn took me to Dairy Queen and I bought a heart shaped icecream cake that read... HAPPY BIRTHDAY MOM! This made Brandon feel much better, we invited his nurse and nurse assistant into his room and had a small party.It turned out GREAT after all!
*Please check back later for more updates*
**REMEMBER TO PRAY FOR BRANDON AS WELL AS THE OTHER KIDS ON UNIT 4A**
Friday, May 9, 2003 8:59 PM CDT
Day +86
GREAT NEWS! Brandon is now 100% engrafted, which means he is all donor and officially A negative (DNA) where as before his tissue typing was O positive.
Brandon's WBC is 2.6 RBC 9.4 and platelets 38,000.As of today Brandon is starting to make platelets on his own.HOORAY!He will only be transfused if his counts drop below 20,000.Dr.MacMillan is very pleased with Brandon's progress.She informed us today that Brandon will be going home with his hickman line in place.This will remain in- tact until we come back for his 6 month checkup.
Today has been such a WONDERFUL day!Brandon was able to get some of his school work done in clinic.After that Julia from(child family life)stopped by and gave Brandon a game and an autograph book.Also helped him make me a bracelet for Mother's Day.He done such a good job and worked very hard on this gift for me.We left clinic and Brandon decided he wanted to go visit the nurses on Unit 4A.The nurses were so happy and surprised to see how well Brandon was doing.
After getting back to the Ronald McDonald House Brandon laid down for a nap.When he woke up he played his PS2 with his friend Aamon, he then ate dinner and afterwards him and I played a couple games of pool.He then got on the treadmill and I think he must have run 10 miles. I'm telling you this child was like the energizer bunny, he was so full of energy today that I could not keep up with him.
Before I forget to mention,Brandon got to meet his favorite football player yesterday.MN. Vikings "Randy Moss" and 2 other players came to the RMH to visit with us.We got numerous pictures and a few autographs.I will share these pics with you just as soon as I get the film developed.
Tomorrow will be another busy day for Brandon and I.We will be leaving in the morning to attend the Vikings spring practice.It is so "COOL" that we were invited to such an event.When we return Brandon has plans to take me to Dairy Queen to have icecream cake for my birthday.If we are'nt to tired we will attend the Minnesota Twins and Boston Red Sox baseball game tomorrow night.
We are so thankful to have these tickets donated to us by the Ronald McDonald House.
As of now we have plans for Sunday also.We will be going to the circus!! What a busy weekend we will have!I will have
to take the weekend off from updating the journal.I will have more updates for you next week.
Thanks again for checking in on Brandon's progress.Remember to sign the guestbook so that we know you visited his website.
**PLEASE CONTINUE TO KEEP BRANDON IN YOUR THOUGHTS AND PRAYERS**
Monday, May 5, 2003 2:46 PM CDT
Day +82
NEW PHOTOS!!
Brandon woke up this morning sick to his stomach, chills, low grade fever and runny nose.I took him to clinic where we spend 4 hours getting potassium and magnesium through IV.A chest xray was also done to check for any signs of pneumonia.Thank goodness the results came back negative.Several blood cultures where taken as well.I will have those results for you ASAP.
Brandon's WBC has been low so he was given a growth factor boost in clinic yesterday. Today his WBC is 2.8 ANC 1.8 Hemoglobin 9.5 and platelets 48,000.I continue to monitor Brandon's glucose by checking it 2 hours after each meal.He is currently taking 10 units of insulin(in stomach) daily.This injection works for a 24 hour period, therefore Brandon's glucose is staying at a steady level.This glucose issue should'nt be long term.Brandon's prednisone is slowly being tapered and will no longer be needed after June.Once Brandon is off the steroids then hopefully he will not need the continueous insulin any longer.
Brandon and I were reminded by our social worker today that we are getting very close to our 100 day.We are counting down, 18 more days.HOORAY! Brandon will have his last bone marrow biopsy on May 27.If everything goes well,we plan to be on our way back to Harrisonburg,Va. on May 28.Please keep those fingers crossed and remember to keep praying for us.
Brandon enjoys getting mail.Please continue to send him cards so that he don't feel like you have forgotten about him. THANKS!!
Well this is all the updates that I can give you.Brandon is wanting to go to Block Buster Video and rent a couple PS2 games and DVD's.Please check back later for more updates.
I have changed the hospital information at the bottom of the webpage.I have included Brandon's address at the Ronald McDonald House.I have also included a caringbridge webpage link for a "SPECIAL" little boy named Chandler.Please take time and check out his website.
**PLEASE CONTINUE TO PRAY FOR BRANDON AND ALL THOSE KIDS ON UNIT 4A**
Wednesday, April 30, 2003 7:21 PM CDT
Day +77
I apoligize for not updating the journal in the past week.William and Samantha came out to spend a week with Brandon so I went back home to be with Angie, Jason and DJ.
GREAT NEWS!! Brandon was discharged from the hospital on Monday and continues to do well.We will now be going to clinic everyday for his checkups, bloodwork and any blood products that he may need.
Today in clinic Brandon had to get growth factor medication due to his WBC being extremely low. His count was 1.6.Normal ranges between 4.0-11.0.Hemoglobin 10.9, normal ranges between 11.7-15.7 and platelets 90,000.Normal range 150,000-450,000.Brandon's glucose level continues to stay within the normal range. He is now taking one shot of insulin per day instead of one shot before each meal.We expect this blood sugar level to go back to normal after tapering the steroids.
Overall Brandon seems to be doing just fine.Since his discharge he has been a very busy little boy.He has played basketball with his dad, went to "TOYS R US" and bought a surround sound for his PS2 and visited with some friends at the Ronald McDonald House.We had planned to watch the Minnesota Twins play tonight, but I could'nt take Brandon out in the rain.We will try again tomorrow night.
Everyone is asking what medications Brandon is currently taking.Below you will find a list of them along with the meds. schedule.
Acyclovir- 5xdaily
Reglan - 4xdaily
Pantoprazole - 1xdaily
Mg oxide- 2xdaily
CSA (Neoral)-2xdaily
Nystatin- 4xdaily
Voriconazole-2xdaily
Prednisone- 1xdaily
Bactrim- 2xdaily (Monday and Tuesday only)
Lantis-1xdaily (insulin)
Benadryl- when needed
Phenergran- when needed
tylenol- when needed
This is all the updates I have for you. Please check back later for more updated information.Thank you for checking in on Brandon's progress.GOD BLESS YOU ALL!!
**PLEASE CONTINUE TO PRAY FOR BRANDON AS WELL AS THE OTHER KIDS ON UNIT 4A**
Wednesday, April 23, 2003 7:43 PM CDT
Day +70
WOW! 2 and a half months and we are still here at Fairview Medical Center.The plan was to discharge Brandon yesterday, but he woke up with a fever and vomiting.It's a possibility that he could have gotten some type of viral infection.We are now waiting on test results from the throat, nose and blood cultures.Brandon also had a chest xray done last night.I will have these results for you in just a few days.
Today Brandon seems to be feeling somewhat better.We were able to leave on pass for 2 hours so we went over to Ronald McDonald House and had lunch and of course Brandon had to plop down on his favorite bed in our room. This poor child was completely wiped out from all the walking.We got back to the hospital at 3;00 p.m.and he went straight to bed.
Brandon's dad and Samantha will be arriving here tonight at 9;10 p.m.Brandon is very excited about seeing them.Hopefully Brandon will get discharged sometime this week so they can continue their planning for "MALL OF AMERICA."
Today is DJ's birthday he turned 9 years old.HAPPY BIRTHDAY DJ!! Sorry me and Brandon are not there to help you celebrate.We will make up for it next year.We love you and miss you very much!
* I would like to thank everyone once again for all of the cards, calls, money and prayers* GOD BLESS YOU!!
**PLEASE CONTINUE TO PRAY FOR BRANDON AS WELL AS THE OTHER KIDS ON UNIT 4A**
Saturday, April 19, 2003 4:57 PM CDT
Day + 66
Well we are still here at the hospital so I guess that means Brandon and I will not be spending Easter at the Ronald McDonald House.We are planning for Brandon to be discharged on Tuesday.
Brandon continues to do well, although we are still fighting this glucose issue.Brandon was taken off the insulin drip and started on insulin shots.He will get these shots everyday before his meals and his glucose will be checked 2 hours before meals and 2 hours after meals.The dosage of insulin will depend on his carbohydrate count.This is very scary and confusing to me so therefore I am required to go through training on Monday.We are hoping that this high/low glucose is caused by the prednisone and will only be short term.
Brandon's blood counts are looking good. His WBC is 5.2 ANC 4.5 RBC 8.9 and platelets 69,000.All vitals are normal and his appetite is very good.
Dr. Orchard is very pleased with Brandon's progress.He says that things are looking very good.
Dr.Fung stopped by to visit also and said that he has no major concerns about Brandon's bladder and kidneys, but he recommends an ulta sound be done every few months. This is to make sure that no problems occur in the future.I have to say that we have GREAT Dr.s here at Fairview University Medical Center.
Well this is about all the updates that I can give you right now.Brandon is ready to go out on the unit for his daily walk.Please check back tomorrow for more updates.
*HAVE A GREAT WEEKEND AND A HAPPY EASTER*
**PLEASE CONTINUE TO PRAY FOR BRANDON AS WELL AS THE OTHER KIDS ON UNIT 4A**
Wednesday, April 16, 2003 11:15 AM CDT
Day +63
WOW! We are over half way from reaching that 100 day mark.It seems like we have been in this hospital for a year.The good news is... Brandon is working his way out of here very soon.If things continue to go well for him this week,he will be celebrating Easter at the Ronald McDonald House.
Brandon's bloood counts are looking GREAT!Today his WBC is at 8.7 ANC 8.1 RBC 9.6 and platelets 74,000.This is WONDERFUL!We are now trying to get this glucose problem under control.Brandon remains on the insulin drip, but will leave the hospital taking insulin shots.(I will have to go through training to learn how to give Brandon his shot.)We are hoping that this glucose issue is from the steroids and not the FA itself.Therefore Brandon will not be required to have these shots for a long period of time.
Overall Dr. Orchard is pleased with Brandon's progress.He says that things are back on track and he don't expect to see many more of those "bumps in the road."
Brandon had some really COOL vistors this morning.The Minnesota State Troopers stopped by and gave Brandon an Easter basket full of goodies.I have a few snap shots that I will share with you whenever I can get the picture cd downloaded.Once again I apoligize for not having new pics in the photo album.I hope to change them very soon.
Brandon's dad and Samantha will be coming to visit sometime next week.Brandon is looking foward to spending time with them at "MALL OF AMERICA." We are looking foward to seeing you guys!
Once again I would like to thank each and everyone of you for all the cards and etc.
Please remember to sign the guestbook when you visit the website so that we know you were here.
**PLEASE REMEMBER TO PRAY FOR BRANDON AS WELL AS THE OTHER KIDS ON UNIT 4A**
Saturday, April 12, 2003 6:39 PM CDT
Day +59
Today was the most terrifying day of my life. As I update this journal page my eyes are still full of tears.I can not thank GOD enough for answering my prayer at such a time when I needed most.
It all started when Brandon woke up this morning, his glucose level had dropped to 56.His RBC was at 7.8 which is below the borderline so he had to be transfused. His oxygen level was right around 91% which is borderlined.I started out the door for a cup of coffee when I noticed Brandon was having trouble breathing.I tried talking to him, but no response.Brandon's head dropped and his eyes went to the back of his head. I immediately called for help.The Dr.s and nurses was running every direction possible to get into Brandon's room.I ran out the door and heard "CODE BLUE" come across the intercalm so I immediately panic and blacked out.Thanks so much for the help from Dr. Ramsey.She stayed with me outside of Brandon's door until the other Dr.s were able to get Brandon's condition under control.
Dr. Ramsey said that Brandon had coughed up mucus,and choked on it.This had apparently cut off all oxygen.Brandon was hooked up to a very high dosage of oxygen and monitored very closely throughout the day.
GOD BLESS THIS CHILD!When I came to my senseous and walked back into Brandon's room, I noticed a teardrop streaming down his face.His exact words were "Mom I Died On My Cousin Brittany's Birthday".
After this exciting morning,Brandon seems to be doing just fine.His blood counts continue to rise.Vitals are good.Appetite is very good.He is eating everything in sight.He is now ready to walk the unit so I will have to get going.I will have more updates for everyone tomorrow.
GOOD NIGHT and GOD BLESS!!
HAPPY BIRTHDAY BRITTANY!WE LOVE YOU AND MISS YOU VERY MUCH!
**PLEASE REMEMBER TO KEEP BRANDON IN YOUR THOUGHTS AND PRAYERS.**
Friday, April 11, 2003 5:09 PM CDT
Day +58
What a beautiful day in Minnesota! The temperature here is in the high 60's today.People are walking around in shorts and t-shirts.Sorry you people back home in Virginia are having such cold and rainy weather, but you will have "SUNSHINE" next week.
Things are looking very good for us.Brandon is feeling GREAT today!The Uriologist came by this morning and gave us the results from the bladder/kidney ultrasound.Everything looked good so Brandon was able to get his superpubic cathader removed.
Brandon's blood counts continue to rise. His WBC is 7.1 (7,100).The normal count ranges between 4,000-11,000.ANC 5.9 (5,900)This is another part of the white blood count.Platelets were at 75,000 this morning so Brandon had to be transfused.The normal ranges between 150,000-450,000.
Dr. Ramsey is very pleased with the way Brandon is progressing.We are hoping that Brandon will be discharged very soon.
Today Brandon and I have been extremely busy.We walked around the unit twice then we walked to the sunroom.Brandon was able to look out the window and see the Mississippi River. He was also able to get some school work done and he attended his physical and occupatiental therapy.
Glenn and Lisa (Care partners) stopped by to visit with
Brandon and I this evening.We really enjoyed spending time with them. They are both WONDERFUL people!
This is about all the updates that I have for today. Please check back later for more updates.
**PLEASE REMEMBER TO PRAY FOR BRANDON AS WELL AS THE OTHER KIDS ON UNIT 4A**
Wednesday, April 9, 2003 9:17 PM CDT
Day +56
Sorry it has been a few days since I have updated the journal.I was very busy trying to get things together for Jason and DJ's trip back home.They both left along with Angie, Bucky and Anthony yesterday morning.Even though I am here taking care of Brandon, I still feel like I am alone without the boys being here.Brandon and I miss them all very much and hope to see them very soon.
Brandon is feeling much better as days go bye.He continues with the stomach pain, but it has increased a good bit.The medicine that he is currently taking for the food breakage in his stomach will take some time to start working properly. This seems to be the only major problem that he is having now.
GREAT NEWS! The results are back from the biopsy of the small intestine.It did not show any graft v/s host disease (GVHD)which means it has gone away, but Brandon will continue to take the prednisone for just a few more weeks.Another ultrasound was done of his bladder and kidneys.This will show if all the blood clots have passed and if his left kidney has healed.Dr.Fung will have the results for me sometime tomorrow. He will then let us know when the superpubic cathader can be removed.
Brandon's blood counts are looking very good. His WBC is 8.8 ANC 7.2 RBC 9.2 and platelets 141,000.These counts are far from what they should be, but these counts are GREAT!
Dr.Ramsey told us that Brandon could be discharged with his counts being as high as they are.She is very pleased with Brandon progress.We are hoping to get him back to the Ronald McDonald House real soon.
There are a few people back home in "Virginia" that Brandon and I would like to thank.Brandon's dad and Samantha has sent Brandon another care package with lots of "GOODIES". There was a stuffed bear,PS2 game,movie,chocolate cupcakes w/ gummy worms and to much more to mention.THANK YOU!!
Another thanks goes out to Kathryn Staton and friends from Fort Defiance High School.In this package was some real COOL stuff.Gift certificates for ice cream ,magazine,money,gift card for Toys R Us and best of all pictures of "EMINEM".THANK YOU ALL SO MUCH!!
**I WOULD ALSO LIKE TO THANK MY FAMILY BACK HOME FOR THE MONEY AND CALLING CARDS. THANK YOU SO MUCH!!
This is all the updated information that I have for you. Please check back tomorrow for more updates.GOODNIGHT!
**PLEASE REMEMBER TO SIGN BRANDON'S GUESTBOOK SO THAT WE KNOW YOU WERE HERE AND REMEMBER TO PRAY FOR BRANDON AS WELL AS THE OTHER KIDS ON UNITS 4A.
Sunday, April 6, 2003 10:22 PM CDT
Day +53
These past two days have been wonderful! Brandon has been feeling very good.He continues to have very little stomach pain, but he is still taking the morphine when needed.This is a very addictive narcotic so Brandon will have to be weaned off of this medication once again.Brandon's blood counts continue to rise from day to day,but we have seen them drop a bit over the past few days.This seems to be normal in transplant patients.Today his WBC is 5.0 ANC 4.2 RBC 8.8 and platelets 53,000.All vitals have been normal,but we are still fighting the glucose levels.This is like one of those "UPS and DOWNS".If his glucose is low in the mornings then it's usually high towards evening so therefore he is given an insulin boost to help keep this under control.Dr.Ramsey still says that Brandon is doing very well and continues to be stable.We still have no idea of Brandon's discharge date.Hopefully it won't be to much longer.
Brandon has really enjoyed spending time with Angie and Anthony.They will be leaving on Tuesday morning to head back to Va. along with Jason and DJ.I wish this could have been a better trip for them.The weather here in Minnesota has been cold and windy.Anthony and DJ are both sick so we spent alot of time at the emergency room today.I did get to take them all to "Mall Of America" on Saturday.They had a BLAST!
This is all the updates that I have for today.Please check back tomorrow night for more updates.
**PLEASE CONTINIUE TO PRAY FOR BRANDON AS WELL AS THE OTHER KIDS ON UNIT 4A**
Thursday, April 3, 2003 4:34 PM CST
Day +50
I apologize for the delay in the journal.There has been so much going on over the past few days and I have been very sick.I do have the results back from the ultra sound.It looks like everything is still the same.Brandon's left kidney is still somewhat swollen and a few blood clots remain around the walls of his bladder.He was hooked back up to the cathader drainage tube on Monday.The Dr.'s thought that maybe this would increase the amount of pain he was having after urinating,but it is only making things worse.I am currently waiting on the surgeon to decide what we are going to do about this continueous problem.Like I had mention before it's one thing after another.Brandon woke up at 2;00 this morning complaining of stomach pain so the nurse gave him morphine.He was also breathing heavily, his oxygen level had dropped below 90% so he was hooked up to oxygen.At 5;00 am a chest x-ray was done to check for any signs of infection in the lungs.I will have those results tomorrow.
Dr.Ramsey and 4 Resident Dr.s came in to check on Brandon this morning.They said that his lungs sounded clear,but he may be starting with a cold.Brandon will be monitored very closely over the next couple of days.
Brandon's blood counts continue to rise very quickly.Today his WBC is 18.2 ANC 14.9 THIS IS GREAT! RBC 8.3 and platelets 86,000.His glucose is staying in the 100 range.No temperature.Appetite is not good and his blood pressure is high.He is currently taking medications to bring this down to the normal range.I certainly hope that we will get these bumps in the road straightened out soon so that Brandon can be discharged.
Brandon asked me thank his dad and Samantha for sending him the package full of candy and toys.Also I want to thank my family back home for the package and the money that was sent out to me.THANK YOU ALL SO MUCH!
We got a few special vistors on Tuesday.Angie, Bucky and Anthony came from Va. to visit with us for a week.This was a surprise for Jason, DJ and Brandon.They had no idea that they were coming.Jason and DJ will be leaving to go back home next Tuesday.Brandon and I will miss them very much.
**PLEASE CONTINUE TO PRAY FOR BRANDON AS WELL AS THE OTHER KIDS ON UNIT 4A**
Sunday, March 30, 2003 7:51 PM CST
Day +46
WATCH THOSE BLOOD CELLS GROW! Today Brandon's WBC is up to 8.4.THIS IS AMAZING!His ANC is 7.2 RBC 8.6 and platelets 94,000.Brandon's counts are really looking good, but he is still feeling YUCKY!
We are still dealing with this bladder pain.The nurses have started irragating the bladder 3 times a day hoping that the blood clots will pass.This is so painful for Brandon that he has to take loads of morphine and adavan just so he can try to relax.The ultra sound will be done sometime tomorrow so I will be sure to have the results for you tomorrow night.
Overall the Dr. still says Brandon is doing well and is currently stable.He just says that we need to take things day by day.Dr.Fung should be in tomorrow to let us know more about the superpubic cathader and if he will need to remove the stiches that are wrapped around the cathader itself.
Again today Brandon has been sleeping alot.I can't wait until he is pain free so that I can get him out of his bed and get him out on the unit.I know that GOD is watching over us and there are better days ahead.
This is all the updates I have for you tonight.Please check back for more updates tomorrow night.
**THANKS FOR CHECKING IN AND PLEASE REMEMBER TO SIGN THE GUESTBOOK SO THAT WE KNOW YOU WERE HERE**
*REMEMBER TO KEEP THOSE PRAYERS COMING*
Saturday, March 29, 2003 4:07 PM CST
Day +45
WOW! What a long stretch.Day +45 and we are still in the hospital.We are definately having some difficulties.It seems to be like another one of those roller coaster rides.Good one day, bad the next.
The test results are back from the scope procedure and the biopsy's.
BAD NEWS! Brandon has GVHD (graft v/s host disease)which means the donor cells are fighting off his cells.
GOOD NEWS! This is currently being treated with a steroid called prednisone.Brandon will be required to stay on this medication for a number of months.It takes 48 hours for the meds to start working (which is up now) so hopefully we will start to see some improvements by tonight or early morning.
We are now fighting this bladder pain once again.Brandon was taken off of his bladder spasm medication(Ditropan)on Thursday,he is currently back on the meds due to the discomfort he is having after urination.There is an ultra sound scheduled for Monday.We are hoping that all of the blood clots are gone and not formed into another big one.I will let you know the results Monday night.
WHAT A BIG JUMP! Yesterday Brandon's white blood count was at 2.6.and today it has risen to 6.5. This is GREAT!His ANC is 5.4 RBC 8.6 and platelets 50,000.
Dr.Grenwald has informed me that Brandon is doing very well.He says that we are now dealing with a few of those bumps in the road.As far as the blood counts are concerned, they are rising quickly.We still don't have an idea of when Brandon will be getting discharged, but hopefully it won't be as long as it has been.
I would like to update you on somethings that Brandon has done today, but the only thing he has gotten done is alot of sleeping so maybe I will have a better update tomorrow.
I FORGOT TO MENTION IN WEDNESDAY'S JOURNAL THAT WE LOST ANOTHER CHILD ON THE UNIT.A PRECIOUS LITTLE 4 YEAR OLD GIRL.
*YOU WILL BE SADLY MISSED CLARA*
**ONCE AGAIN THANK YOU SO MUCH FOR CHECKING IN ON BRANDON'S PROGRESS**
*PLEASE REMEMBER TO PRAY FOR BRANDON AS WELL AS THE OTHER KIDS ON UNIT 4A*
Wednesday, March 26, 2003 7:32 PM CST
Day +42
What a day!One thing right after another.Brandon woke up this morning with severe stomach pain and a fever.He was given Morphine and Adavan for pain and Zofran for naseua.
Brandon was taken to the operating room at 11;00 this morning for his scope/camera precedure.Dr.Goldman did not see anything wrong within the stomach itself.She did see some inflammation in the Esphogus.There were 2 biopsy's done. One of the esphogus and the other of the small intestine.I will not have these test results until around noon tomorrow.A viral culture was also done and this is to see if there are any signs of a viral infection.
Overall Dr. Grewald says that Brandon is doing well and considers him to be stable.He does not seem to be a bit concerned about the blood in Brandon's urine.This is caused by irratation of the bladder and should clear up on it's own.This could take several weeks to months.He also told us that Brandon's blood counts are looking very good at this point.
Brandon was given platelets twice today.Once before his surgery, his count was at 69,000 then after surgery his count when to 117,000.WOW! This is the highest I have ever seen his platelet count.I apoligize for not having his other blood counts tonight, but will have them for you tomorrow.
We had quite a surprise today!Two guys from the "Celebration Shop" stopped in to sing a rap song for Brandon.This was so COOL!Brandon really got a kick out of this.I did see a smile on his face when they were performing.
Well I just got word that Brandon is going down for some type of x-ray, not sure what it is, but when I find out I will let you all know.WHAT A BIG SURPRISED THAT WAS!
Please check back tomorrow night for more updates.GOOD NIGHT!and LOVE TO YOU ALL!
**PLEASE REMEMBER TO KEEP THOSE PRAYERS COMING FOR BRANDON AND THE OTHER KIDS ON UNIT 4A**
Tuesday, March 25, 2003 7:34 PM CST
Day +41
Brandon had his CT scan done at 8:00 this morning.The results are back and everything looks normal.The Dr. believes that he may have Tracheitis(sorry I can't say or spell these big words).This is where all the mucus is coming from, his lungs seem to be pretty clear.There will be a culture done to find out if Brandon has some type of virus.Brandon is scheduled to have his scope precedure done at 11;00 in the morning.He will have this done in the operating room.I hope to have the results by Wednesday night.It gets to be frustrating sitting here day after day and not knowing what is going on inside of Brandon's little body.This is what I call the waiting game.Hopefully after tomorrow the Dr. will know what is making Brandon so sick.Bad news for Brandon, the superpubic cathader will remain in his stomach for a few more weeks.This is to make sure that all the little blood clots are able to pass on their own, if not the continueous flush will have to be started again.Brandon continues with his stomach pain and is taking Morphine around the clock.His temperature is down from yesterday.all vitals are normal.No appetite, but still on the TPN.Brandon's WBC is 3.3 ANC 2.4 RBC 9.8 platelets 42,000 at 4:00 this morning, but dropped to 32,000 this evening so he is now in the process of being transfused.Although Brandon is having some complications, the Dr.keeps telling me that he is in stable condition.All of this is not unusual for FA patients.
*Brandon would like to thank all of the kids in his computer class for making him the get well cards* GOOD JOB KIDS!!
I apoligize for not having the pics in the photo album tonight.I am still waiting on the computer.I hope to have it in the room tomorrow.
Thanks so much for checking in on Brandon's progress and remember to keep those prayers coming.GOD BLESS YOU ALL!
Monday, March 24, 2003 10:48 PM CST
Day +40
Sorry that I did not update the journal over the weekend, but there were no changes to report.
Today has not been a very good day at all.We are still fighting this stomach pain.One dose of morphine after the other.The morphine stops the pain,but in the process of recieving it Brandon gets very sick to his stomach.The Dr. came in today and told us that he is calling in the surgeon (Dr.Fung) to look at Brandon's superpubic cathader site.It looks like it may have slid out of place and the stitches are wrapped around the cathader.
There will be another Dr. coming by tomorrow to talk with us about the scope precedure.I'm not sure what this is called.It's a camera that goes down the throat and into the stomach.This will tell us if there are any major problems within the stomach itself.Brandon will also be having a CT scan done of the sinuses.This will show if there is any signs of infection.He has been coughing alot since yesterday, but the Dr.seems to think it could be some type of virus.Another ultra sound of the kidneys and bladder was done today.I do not have those results, but hope to have them by tomorrow night.
Today Brandon's WBC is 3.2 ANC 2.4 RBC 10.3 and platelets 57,000.Blood pressure is normal.He woke up this morning with a temperature of 100.9.He still has no appetite and remains on the TPN.Overall it's just another YUCKY day and another bump in the road.Hopefully Brandon will soon start to feel better so that he can get his pass and work towards being discharged.
I would like to send out a special thanks to all the people at our church FAITH BAPTIST in Broadway for the care package.We miss you and love you all.We will see you in church when we return home.
I'm still working on the pics for the photo album.I hope to have them downloaded by tomorrow night.
**PLEASE REMEMBER TO SIGN BRANDON'S GUESTBOOK SO THAT WE KNOW YOU WERE HERE**
**REMEMBER TO KEEP BRANDON AND THE OTHER CHILDREN ON UNIT 4A IN YOUR THOUGHTS AND PRAYERS**
Friday, March 21, 2003 10:38 PM CST
Day +37
I don't have many changes to report tonight. Things are about the same as yesterday.Brandon was up all night with stomach pain so once again he was given Morphine and Adavan.He actually slept until 4;00 today.He did not have a fever today and his vitals were normal. His WBC is 3.3 KEEP COMING WHITE BLOOD CELLS!ANC 2.5 platelets 60,000 and I do not have a RBC for today.
The Dr. stopped in to check on Brandon this afternoon and told us that if the stomach problem continued over the weekend, that a CT scan would have to be done on Monday.The Dr. did not give us a round about discharge date. I don't even ask for that information anymore.I don't want to push the issue. This time Brandon will be completely free from the bleeding and pain before being discharged.
Jason and DJ are doing fine.They are enjoying their spring break.The Ronald McDonald House volunteer staff have been keeping them occupied.They have something for them to do everyday. Today they went bowling and had a GREAT time.
This is all the updates I have for you. Please check back tomorrow night for more updates.
**PLEASE REMEMBER TO KEEP THOSE PRAYERS COMING FOR BRANDON**
Thursday, March 20, 2003 10:27 PM CST
Day +36
What a YUCKY day! The weather here in Minnesota is cold, rainy and nasty. I am not feeling good and neither is Brandon. He had a very bad night.The stomach aches and pains continued for hours. The nurses was able to give him loads of Morphine.This morning he was given Adavan so he slept best part of the day.All of Brandon's blood counts were down compared to yesterday's lab results.His WBC is 2.6 ANC 1.9 RBC 7.9 and platelets 36,000.Because his counts were below the borderline he had to have red blood and platelet transfusions.Well again today Brandon did not get his 4 hour pass and he will not be getting discharged before the weekend.I don't want to push it even though Brandon is ready to get back to the Ronald McDonald House and spend time with his brothers and friends.There were alot of changes made today.Brandon's meds were changed from pill form back to IV. He has not been able to keep down some of his medicines. He was also put on TPN at night because he does not have a very good appetite.His fluids were turned back up again today due to blood in his urine.Brandon will be getting continueous ultra sounds of the bladder and kidneys just to make sure that everything is normal and no signs of any damage.The Dr. also suggested a CT scan be ordered if the stomach problems continue.
Its 10:45 p.m.and Brandon seems to be feeling alittle better. He is sitting up in his bed eating and watching 8 mile with DJ.
Please check the journal tomorrow night for more updates.
GOOD NIGHT AND LOVE TO YOU ALL!
**PLEASE KEEP BRANDON AND THE OTHER KIDS ON UNIT 4A IN YOUR THOUGHTS AND PRAYERS**
Wednesday, March 19, 2003 8:29 PM CST
Day +35
Today has been a pretty good day for Brandon other than he woke up this morning with a temperature of 101.His WBC is moving on up there, today it is 3.0 ANC 2.2 RBC 8.6 and platelets 50,000. His blood pressure and glucose continue to be normal.
We are still fighting this stomach problem.Brandon has been taking morphine a few times a day. The Dr. is still trying to determine what is causing this pain.
Brandon was not able to get his 4 hour pass again today due to his fever.If his temperature goes down and he continues to do well through the night then maybe we will shoot for tomorrow.
The Dr. was in to check on Brandon and said he is doing well.He is still saying that Brandon could be discharged by the weekend, depending on his temperature.This seems to be the only concern right now.There still are'nt any signs of infection so we will have to take it day by day.
Brandon is in good spirits tonight,he is watching his new 8 mile DVD that I got for him.Lots of people at the Ronald McDonald House have ask to borrow it, but I don't believe Brandon will let this movie get out of his site.He had a couple of his nurses in the room watching it with us.They think Brandon looks like "EMINEM".
Brandon also recieved some very special mail today.Lots of people made him get well cards.We would like to thank those people and also a special thanks to Ms.Staton for sending those cards. One of the nurses on the unit told us that she has never seen a child get as much mail as Brandon.Please keep the cards coming, he really enjoys getting mail.
I apoligize for not having the new pics, but I am having a very difficult time with my computer. I cannot get it to download. Hopefully by the end of the week I will have the pics in the photo album.
Thanks so much for checking in. Good night and love to you all.
**PLEASE REMEMBER TO PRAY FOR BRANDON**
Tuesday, March 18, 2003 7:00 PM CST
Day +34
Sorry for skipping the journal yesterday, but I was extremely exhausted after running back and forth from the hospital to Ronald McDonald House and going grocery shopping. It really takes alot out of one person that is taking care of 3 boys alone.
Today everything seems to be going well.Brandon"s WBC is 2.4 ANC 1.7 RBC 8.9 and platelets 58,000. All vitals are good,no temperature and his appetite is somewhat ok.Brandon is still having alot of problems with his stomach.I have mentioned this to his Dr. and he says the stomach seems to get very tender and irratated after transplant. He does not seem to be to concerned about this.
Dr.Fung stopped by and talked to Brandon and I and looked at the superpubic cathader site.He said by the looks of the kidney and bladder ultrasound from yesterday he did not see any blood clots, but there is still a very little fluid remaining in one kidney so the cath. will have to stay in place for approximately 3-4 more days.If things go well through the night Brandon will beable to leave the hospital tomorrow on a 4 hour pass.If he continues to well and keeps his temp. down then he should be discharged by the weekend.
Overall Brandon is being his usual self today.He was up playing his PS2 with Jason and DJ and listening to his new Eminem cd's that he had gotten in the mail from a friend. Thank you! Stacie Barb.
*ONCE AGAIN THANK EACH AND EVERYONE OF YOU FOR CHECKING IN ON BRANDON'S PROGRESS*
**PLEASE REMEMBER TO KEEP THOSE PRAYERS COMING FOR BRANDON AS WELL AS THE OTHER KIDS ON UNIT 4A**
Sunday, March 16, 2003 7:52 PM CST
Day +32
What a beautiful day in Minnesota! The temperature here was in the 60"s today. This is like spring weather compared to 20-30 below.I hear my family in Virginia are having some pretty nice weather also.
I was hoping to take Brandon outside today, but he just did'nt feel like getting out of his room. He was tired and sleepy,plus taking Morphine for pain. He has been having alot of stomach pain this week.Alot of this pain is due to the side effects of his anti-viral medications.
Overall Brandon is doing well. His blood counts are continueing to rise. Today his WBC is 2.1,ANC 1.7, RBC 8.9 and platelets 52,000.
Brandon's new Dr. stopped in today (don't remember his name)to check on him. He says Brandon seems to be doing very good. He don't believe Brandon will be getting discharged this week. Dr. Fung will be in tomorrow to check out the cathader site and also to do another ultra sound of the bladder. I will give you the results of that test on Tuesday.
Jason and DJ are doing good. They both got to go to the Minnesota Timberwolves game today with volunteers from The Ronald McDonald House. They had a blast!It is now spring break for them until next Monday so they will be spending more time at the hospital with Brandon.
This is all the updated info. that I have for tonight. Check back for more updates in tomorrow's journal.
Thanks again for keeping up with Brandon's progress.
GOOD-NIGHT and LOVE TO YOU ALL!
**REMEMBER TO KEEP BRANDON AND THE OTHER KIDS ON UNIT 4A IN YOUR THOUGHTS AND PRAYERS**
Saturday, March 15, 2003 9:40 PM CST
Day +31
I don't have many changes to update in the journal tonight. Brandon's blood counts continue to rise. I don't have his labs in front of me so I can't tell you what they are. I do know his WBC is 2.6 and his other counts were good also.(No transfusions today). All of his vitals were normal, even his temperature so lets hope that this is at the breaking point.
Dr. Baker stopped by to check on Brandon and told us that his cathader could be taken out, but the superpubic cathader would have to stay in until Dr. Fung makes his rounds on Monday. Brandon was in severe pain when the cath was removed, he says this was his worse pain ever. He actually scared me for a minute during the process. He started breathing hard and then he could'nt catch his breath.The nurse had to give him morphine for pain.
The weather here in Minnesota was beautiful today. We had people here walking around in shorts. I believe it reached the high 50's low 60.
Dr. Baker give me permission to take Brandon outside since it was so warm, but after he had taken his morphine then I could'nt get him out of bed.Maybe we will try again tomorrow. I did get to spend alittle time with Jason and DJ. We actually got to walk a few blocks to Burger King. The boys really enjoyed this.Hopefully Brandon will be getting discharged sometime next week and our family will be back together again at the Ronald McDonald House. We hope to have our complete family together in April. Brandon's sister (Angie) and nephew (Anthony) will be coming to visit. WE CAN"T WAIT! It's been a long month and a half without them.
Thanks to all of our family and friends back home for all the support you have given us. I appreciate those of you that call,email and write in the guestbook.
GOOD NIGHT AND LOVE TO YOU ALL!
**PLEASE REMEMBER TO PRAY FOR BRANDON AND THE OTHER KIDS ON UNIT 4A**
Thursday, March 13, 2003 9:58 PM CST
Day +29
GREAT NEWS! Brandon is 95% engrafted. HOORAY!! This is the process in which the transplanted bone marrow begins to make new blood cells.
Dr. Baker stopped by to check on Brandon this afternoon. He does'nt have any major concerns at this point. He wants to see how Brandon progresses over the weekend.It could be a good chance that we will be out of here sometime next week although I'm not going to push it. I want everything to be the way it should be before discharge.
The Uroligist (Dr.Fung) gave us more good news today. Brandon maybe taken off the continueous flush tomorrow. His urine is back to it's original color and he has been passing a few small clots. Another ultra sound was done today. This was to look at the kidneys to make sure everything was healing properly. The right kidney is completely healed, but the left kidney is still somewhat swollen,but is starting to heal.
Overall this has'nt been a horrible day for Brandon, but he was feeling kinda YUCKY.His temp. went up again this evening and his stomach was hurting. He started feeling better towards late evening. Our care partner (Glenn) stopped by to visit and took me to the grocery store to get Brandon his "Reese Puffs" and "Wonder Balls".Yeah he had a craving for chocolate.Everyday is something different.
Well this is all the updates I have for today. Please check back for tomorrow's update.
*Once again thanks for checking in*
**PLEASE CONTINUE TO PRAY FOR BRANDON AND THE REST OF THE KIDS ON UNIT 4A**
Wednesday, March 12, 2003 8:14 PM CST
Day +28
Brandon has been feeling pretty good today. His RBC (7.5) and platelets (26,000) were low this morning so he had to be transfused. His WBC dropped to 1.9, but this is nothing to worry about. The blood counts will continue to have their ups and downs for a long while.Brandon is doing very well with his superpubic cathader.The site looks good and is starting to heal.In just a few more days his urine should be free from all blood so the cathader will be removed.
The Urology Fellow Dr. stopped by today and told us that the ultra sound of the bladder did'nt show anything abnormal.This is GREAT news!The kidneys looked good also. The swelling has went down. Brandon has not had a fever all day so lets hope that this has broken.Dr. Baker still isn't sure what caused Brandon's fever. There are no signs of infection through the blood work so he may have caught a bug while he was out of the hospital.
Overall Dr. Baker says Brandon continues to do well.I don't see us getting out of this hospital anytime soon so we will just take things day by day.I suggested Brandon not be discharged until everything is where it should be.
Brandon recieved some very special mail today.Each one of his classmates wrote him a letter.(Thank you Ms. Bland)This
really brightened Brandon's day.He always looks foward to recieving mail.PLEASE KEEP THOSE CARDS COMING!
There is one thing that I had forgotten to mention in yesterday's journal. I thought maybe you all would like to hear something that Brandon had said to me just before he was taken down to the operating room.This really touched my heart and made me cry.
Brandon and I were sitting in his room patiently waiting to go to the OR.We were carring on a conversation when the light above our head blinked on and suddenly went off.He looked at me with a smile on his face and said:
Mom that was "The Light From Heaven".We both knew from that point that GOD was watching over us.
I would like to thank each and everyone of you for all your
thoughts and prayers.
**PLEASE CONTINUE TO PRAY FOR BRANDON AND ALL THE OTHER CHILDREN ON UNIT 4A**
Tuesday, March 11, 2003 3:46 PM CST
Day +27
As many of you may know, Brandon was taken to surgery yesterday.The ultra sound that was done at noon showed the blood clot was taken up 85% of his bladder and pushing against the kidneys causing them to swell.
During the operation Dr. Fung (Urologist) found that this was worse than he expected. This was not the floating blood clot. This clot had harden and stuck to the walls of the bladder.The Dr. was able to remove 95% of the clot. The other 5% was broken into pieces and will be passed through the new cathader that was surgically placed just below the belly button.The entire surgery procedure took 3 hours and 35 minutes. Alot longer than expected.It was 10:20 p.m. before I could see Brandon in the recovery room. By this time I was completely wiped out from worrying so much.
Brandon was in lots of pain afterwards so he was given Morphine and Fentanol(which makes him very silly).Everything went well throughout the night. We were both able to get some sleep.
Today things are not going well for Brandon. He is in lots of pain and still taking Morphine.His cathader site is very sore.Temperature is still in 100-101 range.The nurses have been given him tylenol throughout the day.
Blood pressure and glucose level look good.His appetite is good. He is craving tacos from Taco Bell.
Dr. Baker was in to see us today and says that Brandon's blood counts are looking good.Today his WBC is 2.3, RBC 8.6 and platelets 59,000. There are no signs of infection and no signs of GVHD.This is wonderful news.
Brandon is scheduled for another ultra sound of the bladder some time tonight. I will update you with those results in tomorrow's journal.
*Thanks to you all for checking in on Brandon's progress*
**PLEASE KEEP BRANDON IN YOUR PRAYERS**
Sunday, March 9, 2003 9:36 PM CST
Day +25
Brandon's white blood cell count continues to rise.His count today is at 2.5.Red blood count is 9.9 and platelets 50,000.Brandon is feeling much better today. He has not had any pain at all. The cathader that was put in last night to drain his bladder has done wonders.Brandon has been passing some small blood clots throughout the day.The kidney Dr. stopped by to talk with Brandon and I about the 3 way cathader that was going to be inserted. This is the bigger tube that flushes the bladder continueously, but because Brandon is so small inside the Dr.s were not able to do this. The tube was to large. The Dr. is leaving things as they are right now and hopefully the blood clot will break up on its own.Brandon will be having another ultra sound done on his bladder and kidneys tomorrow or Tuesday. This will show if the clot is still the same size or if it is breaking.This clot seems to have been in place for quite sometime now.If there are no signs of clot breakage the the only choice would be is to take him to the operating room and let the surgeons go inside and break up the clot.Lets pray that Brandon don't have to go this far.
Dr Baker came in to check on Brandon and told us that the test results for infection came back negative. WHAT GREAT NEWS!He says Brandon is progressing well.
I have to mention that we lost another child on the unit today. Tucker Reamy a 10 year old passed away at 3:56 p.m.He had been fighting a rare disease called ALD.I talked to Tucker's sister today at 2:45 and she told me that her little brother was ready to die.This little girl brought tears to my eyes. My heart goes out to the Reamy family.
Basically this is about all the news for today. I hope to have a better update for you tomorrow.
GOOD NIGHT AND LOVE TO YOU ALL!
**PLEASE CONTINUE TO PRAY FOR BRANDON AS WELL AS THE OTHER KIDS ON UNIT 4A**
Sunday, March 9, 2003 10:39 AM CST
UPDATE ON DAY +24 (Sat.March 8,2003)
What a YUCKY day! This was one of the worse days that Brandon has had so far.He was doing so good a few days before being discharged, but then we had a major set back. I brought Brandon back to the hospital at 3:00 a.m.due to temperature of 101.4 and major complications with his bladder.It first started out he was urinating every 3-4 minutes and then he got to where he could'nt urinate at all.This was causing him severe pain so the Dr. ordered him Morphine.The pain continued through out the day so Dr. Baker then suggested an ultra sound be done of the bladder and kidneys.The results showed a blood clot lying at the bottom of Brandon's bladder(blocking his urine from passing)and also pushing up against his kidneys.
The nurses put a cathader in him hoping that the fluids would break up the blood clot and flush it out.This was so painful for Brandon.The nurses had a very hard time placing the cathader inside him so they decided to go with a smaller tube. This one worked to flush the bladder, but clots were getting stuck in the tube.They finally gave up at 1:30 a.m. We are now waiting on the Urology(kidney)Dr.s to come in and place a bigger tube.
Dr. Baker still says Brandon is doing pretty good. We just need to get the temp. down and the bladder problem under control. Brandon is still in progress of making those white blood cells. His count is 2.4 (2,400). RBC(7.9) and Platelets (23,000) both were low so he was transfused.
His blood pressure and glucose level are still in the normal range.appetite is good and no still no signs of any organ damage.
That's all the updates I have for you right now. Check back Sunday night for further updated information on Brandon progress.Sunday journal will be at the bottom of this page.
I apoligize for all the confusion in these journal updates. I have had only 4 hours sleep since Brandon and I woke up Thurs. morning so I have been dead tired.
**PLEASE CONTINUE TO PRAY FOR BRANDON AS WELL AS THE OTHER KIDS ON UNIT 4A**
Friday, March 7, 2003 9:20 PM CST
Let me start by saying that I'm sorry for the journal delay.Caringbridge website was down when I tried to update on Thursday night.This journal update is for Thursday and Friday.
Day +22( Thurs.)
GOOD NEWS! Brandon was discharged from the hospital at 4:15 P.M.
His labs were drawn at 4;00 this morning. WBC had dropped some since yesterday.1.6 (1,600)but this is normal just coming off the growth factor medication. RBC (7.6) and platelets (29,000)were low this morning so Brandon had to be transfused at 9:50 A.M. His blood pressure and glucose levels are staying in the normal range.
Dr. Baker stopped by to examine Brandon to make sure things were ok before discharge. He says Brandon is doing well and he will continue to be seen in the clinic on a daily basis.
Before leaving the hospital I was required to go through some training on how to take care of Brandon's hickman line(changing dressing and hepronizing the central line). I was then required for a second training to learn how to work his IV machine and change the IV bag.This was alot to take in all in a matter of 1 hour.The purpose for the extra fluids is to flush the blood from the urine. Brandon is still passing alot of blood through his bladder. Hopefully this will not be a continues problem for him.
Brandon is very excited about going back to Ronald McDonald House.He will get to spend some time with Jason and DJ and see his other friends as well. We will not allow anyone in our room for a period of time due to infection.
Day +23
Last night was a very rough night for Brandon and I. We were up all night due to complications.He was urinating blood every 3 to 4 minutes and also having bladder spasms.
After being up all night Brandon and I were completely exhausted.
Today Brandon and I spent all day at the clinic.He had his labs drawn and a complete examination done by Dr. Ramsey(another new Dr.). Brandon's WBC and Platelets were above average, but his RBC was low so again he had to be transfused.Dr. Ramsey had mention Brandon's RBC dropping after transfusion is because he is losing alot of blood through his urine.Hopefully we can get this problem under control ASAP. Brandon says... this is getting very annoying.
After we left the clinic we went back to Ronald McDonald House and had planned to do some sort of activities, but Brandon did'nt feel up to it. Around 6:00 P.M. he started with a temperature of 100.2 so I immmediately called the fellow Dr. and let her know what was happening. At this point I was told to continue taking his temp.every 2 hours after giving tylenol.At 2:30 A.M.(Sat.)his temp. had gone up to 101.4
Brandon was admitted back in the hospital at 3;00 A.M.We are currently on Unit 4A room 214.
Please check back Saturday night for more updates.
*THANKS AGAIN FOR CHECKING IN ON BRANDON*
**PLEASE REMEMBER TO KEEP PRAYING FOR BRANDON**
Wednesday, March 5, 2003 9:32 PM CST
Day +21
What a GREAT day! Brandon got to see what the outside world looked like once again. After 30 long days of being hospitalized he was finally able to get a pass to leave for 2 hours.Brandon and I went over to The Ronald McDonald House where we had lunch and he got to visit with Jason, DJ and some friends.After doing all that it was time for us to return back to the hospital.
Brandon was very tired and quite frustrated about going back to his room. I had a real tough time getting him to calm down. He finally fell off to sleep and woke up in a better mood.He was then ready for his walk around the unit. After the walk we went into the patient and parents lounge and played a game of "Connect Four" and "Sorry".
Jason and DJ came over and played the playstation 2 with Brandon while Alex, Aubrey and myself checked out Brandon's caringbridge website.We all had fun spending time together.The kids are looking foward to Brandon coming to the Ronald McDonald House which we call our "home away from home".
Dr.Baker was back to see us today and gave us GREAT news.Brandon will be discharged tomorrow if everything goes well tonight. His RBC is 9.7 WBC 2.4 (2,400) ANC 2000 and platelet count is at 77,000. The Dr. did tell us that Brandon is making red cells and white cells,but no platelet cells as of now. This usually takes a long while.
He still has blood in his urine, but hopefully this will clear up soon with help from the new meds he is taking. Everything else looks good.Blood pressure, glucose and temp. all seem to be under control.
I will have more updates for you tomorrow night.
GOOD NIGHT! and LOVE TO YOU ALL
**PLEASE CONTINUE TO PRAY FOR BRANDON AND THE REST OF THE KIDS ON UNIT 4A**
Tuesday, March 4, 2003 9:24 PM CST
Day +20
Things did'nt start off to well this morning. Brandon woke up at 4;30 a.m. with abdominal pain and vomiting. He was also having severe leg pain. He was given tylenol for his pain and meds for bladder hesitation.
Brandon's red blood count was below 8.0 and platelet count was 70,000. At 8;00 a.m. he had to be transfused.White blood count still remains at 2.6 today.
Blood pressure is still alittle high today so he continues to take his meds for that. His glucose level seems to be under control, it has been staying under 100 all day.
Brandon's weight today is 81.8 lbs. This is 1 lb. more than he weighed when he was admitted.He actually gained 8 lbs.while in hospital due to fluid build up.
Everything went well with the bone marrow aspiration.The Dr. says we should know within a couple of days what percentage of cells are producing in the marrow. It will be about 1 week before the results will be back for the GVHD(graft vs.host disease).This test will show any signs of donor cell rejection.
Brandon's appetite is still pretty good. He has been eating a variety of foods. He seems to be feeling fine tonight.He did not do much activity today due to the biopsy and lack of sleep last night.
Dr.Baker still says Brandon is doing good. He wants to see Brandon eat more so that his fluids can be increased. If he can do this and continue to take meds by mouth then he will be out of the hospital real soon.
**THANKS AGAIN TO ALL OF YOU THAT ARE KEEPING UP WITH BRANDON'S PROGRESS AND PLEASE CONTINUE TO PRAY FOR BRANDON AND ALL THE OTHER KIDS ON UNIT 4A**
Monday, March 3, 2003 10:30 PM CST
Day +19
Brandon's white blood count today is 2.6 so it is alittle higher than yesterday. His ANC is at 200. His red blood is 9.1 and platelet count 41,000.Brandon's platelet count was low at 4:00 a.m. so he had to be transfused.
His blood pressure was also high again today so he was given meds to bring that back down. The glucose level is still up and down. He continues with the insulin drip until this gets under control.
Brandon is now having alot of difficulties with the blood in his urine. He is having lots of pain with this. We are now waiting on the Dr. to come in and check Brandon for a possible blockage.
Dr. Baker says Brandon is doing well as far as the cells producing. He did inform us that Brandon would not be getting out of the hospital this week due to the blood in his urine.Hopefully we will get this cleared up and shoot for next week.
Overall Brandon has been feeling good today. He played his playstation 2, listened to his Eminem cd and even got some school work done. His appetite is still pretty good. He is tired of the hospital food now so I went grocery shopping for him today. I brought him back lots of goodies and he was happy.
Tomorrow Brandon will have his bone marrow aspiration done. This will show how the cells are producing in the marrow. It takes about 1 week for the results to come back. I will let everyone know then how things are going.
**PLEASE CONTINUE TO PRAY FOR BRANDON AS WELL AS THE OTHER KIDS ARE UNIT 4A**
Sunday, March 2, 2003 10:00 PM CST
Day +18
Everything has went well again today. Things are really not changing too much. Brandon's red blood count was 9.7 platelet count 49,000 and white blood count still remains at 2.5(2,500). His blood pressure was just alittle high today and so was his glucose level. He was given meds to control them both.
He is starting to pass blood through his urine, but this is a common side effect from the (Cytoxin)chemo drug. The nurse gave him Pyridine which is a medicine that helps coat the bladder. Hopefully this won't last to long. We are trying to push the fluids into him.
Dr.Baker was in to check Brandon again today and continues to tell us that he is doing well. Brandon started taking some of his meds by mouth this morning so we are still hoping that he will be getting released one day this week.
Overall Brandon seems to be feeling very good right now. His energy level is quite high. He has taken his shower, done his "Michael Jackson" dance and he is now ready for me to walk him around the unit before I have to leave and go back to Ronald McDonald house with Jason and DJ.
Sorry I forgot to mention in yesterday's journal that we lost someone on the unit. Her name is Rachael Mayo.She was 19 years old and from MN.Please keep her parents and her friend in your thoughts. Rachael will be sadly missed.
*THANKS AGAIN FOR CHECKING IN ON BRANDON'S PROGRESS*
**PLEASE REMEMBER TO PRAY FOR BRANDON AS WELL AS THE OTHER KIDS ON UNIT 4A**
Saturday, March 1, 2003 11:54 PM CST
Day +17
Today has been another good day. Brandon has been awake all day, that's a plus. He has not had any of his pain medication so therefore he is more alert.The mouth sores are looking much better now he is ready to eat a variety of foods. He ate cereal for breakfast, no lunch and pizza (Papa Johns) for dinner, he did'nt like the pizza so he then had icecream, candy bar, turkey and cheese sandwich and speghettos (a few bites of each).This boy was starving today.
Brandon's blood counts are still looking pretty good. His red blood 10.2, platelets down to 18,000 which is very low, so he had to be transfused and white blood down to 2.5 (2,500)this has dropped because Brandon was taken off of his GCSF(growth factor) medication.His counts will still continue to rise each day that goes by.
His glucose was 149 which is in the normal range. Blood pressure was 112/64 this is good also.
Brandon had a new Dr. come in and see him today. This was our first time meeting Dr. Baker. He says things are looking good for Brandon. No signs of organ damage or rejection. He wants Brandon to start taking his meds by mouth within the next few days so that Brandon can be released from the hospital.
Well this is all the updates for tonight. Check back again tomorrow night for futher updates.
**PLEASE CONTINUE TO PRAY FOR BRANDON**
Friday, February 28, 2003 10:00 PM CST
Day +16
Everything is still looking good. Brandon had another good day considering all he's been through in these past few weeks.His red blood , platelets and white blood count continue to rise.
Brandon's blood pressure was somewhat high today (120/80) so he was given meds for that. Glucose level is normal, no fevers and still eating that vanilla icecream. He is starting to eat more. Today he had cereal, soup, and icecream so that's more than he's eaten since his admission date.
Dr. Orchard still says that Brandon is doing good and that he could possibly be getting out next week. Let's hope and pray things will continue to go well over the weekend.
Well I have to tell you that a couple of nurses came in the room and told Brandon that he looks like "EMINEM" with his head bald.They ask Brandon for a picture with his autograph. We will be hooking these nurses up real soon Brandon says.
Thanks to everyone that has been keeping up with Brandon's progress.
**TO ALL MY FAMILY MEMBERS**
A special thanks goes out to each and everyone of you for all your cares, concerns and support.
GOD BLESS YOU ALL!
**PLEASE REMEMBER TO PRAY FOR BRANDON AS WELL AS THE OTHER KIDS ON UNIT 4A**
Thursday, February 27, 2003 10:13 PM CST
Day +15
Things are starting to look up for Brandon. Today has been a wonderful day.It seems like everything is in it's right place. The labs looked real good this morning. His red blood count was 8.8, platelets at 22,000 pretty low, so he had to be transfused. The white blood count is producing very fast. We have a count of 5.4 today.
Brandon's blood pressure has been normal all day. His glucose level has been in the normal range also.No temperature, and no pain. This means he is almost ready to give up the pain medication.
The Dr. decreased the pain medicine from .6 to .5
Dr. Orchard says that Branodn is doing good and he is doing a GREAT job at producing those cells. If things continue to go well we should be leaving the hospital next week.We will then be back at the Ronald McDonald House and back to the clinic everyday for check-ups.
Brandon was a very busy kid today. He played a "guess who" game with his child family life partner and of course he won.He played BINGO on his t.v.This is a game that is prepared on floor 5 and televised.He won that game to. Then his school teacher dropped by so he was able to get some school work done.
After all this stuff Brandon still has energy so he took a shower then we took a walk around the unit. Took some pictures of Brandon and the nurses, then the nurses took pictures of me and Brandon. He's ready to do this again tomorrow night. This is a good sign.
Well it's 10:20 p.m. Brandon is ready for his vanilla icecream. I will have more updates for you tomorrow.
Thanks to everyone for checking in on Brandon.
**REMEMBER TO KEEP THE PRAYERS COMING FOR BRANDON**
Wednesday, February 26, 2003 8:39 PM CST
Day +14
Not many changes to report today. Brandon still continues to do well.His red blood count this morning was 8.9, platelet count 52,000 and white blood count 3.9 (3,900).
Blood pressure has been normal all day, but his glucose level seems to be quite high. It has been between 200 and 326 since 8;00 this morning.
The mouth sores are looking much better and the pain medication has been reduced again. The Dr. is trying to slowly wean Brandon off the meds that have to be put through his central line.
Dr. Orchard says Brandon is still doing well and his blood counts are up past the point to where Brandon could be out of the hospital. In order for him to be released he will have to take his medicines by mouth.
I am still waiting on Brandon to decide when he wants to get out of his room and walk around the unit.He is just so tired that he does'nt wanna get out of bed. Maybe we can try this again tomorrow night.
Brandon recieved lots of "goodies" in the mail today. He got cards from friends and family. A package from his father that had comic books, playstation 2 game, books and etc.Also a package from his aunt Kim that had a "BIG" orange frog in it. (we have him hanging from the IV pole above Brandon's bed).
That's about all the updates that I have for you.
GOOD NIGHT!
**PLEASE CONTINUE TO PRAY FOR BRANDON AND ALL THE OTHER FAMILIES ON UNIT 4A**
Tuesday, February 25, 2003 8:17 PM CST
Day +13
We had alittle down fall at 2:10 a.m.Brandon's platelet count dropped so he had to be transfused.Blood counts that were drawn at 4:00 a.m. seem to be fine. His hemoglobin was 8.7, platelets were 88,000 and white blood count 2.7 (2,700). "Keep coming white blood cells"
Brandon's glucose level has shot back up again today. It was 311 at noon so the nurses started him back on insulin drip. His mouth sores are starting to feel alot better so therefore he don't need as much pain medication.
Overall Brandon has had a very good day. He started out this morning wanting to play his playstation 2. He played 3 of his new games.When he got tired of that he got on the computer. (he was looking for cheat codes)
Mom and Cindy came to visit one last time before going back to Virginia.
Cindy and I got together and painted pictures on Brandon's windows.WOW! What a difference this made. There are all kinds of flying colors in this room.
Brandon says the best picture is..."EMINEM" This is what is drawn on the middle window. Everywhere you look in this room you see Eminem. (Brandon's hero).
Dr. Orchard was in to see Brandon this evening. He still says Brandon is doing good.Actually good enough to get out of his room and walk around the unit.It sounded good at the time, but when the Dr. left the room Brandon went to sleep so we will try it again tomorrow night.
By the way Brandon did get his vanilla icecream that he wanted for 2 days. A guy name Will that comes here to visit his girlfriend(Tonya) walked to the store at 4:00 Monday morning just to get Brandon what he wanted.Will and Tonya are 2 wonderful people that I have met here at Fairview.
**REMEMBER TO PRAY FOR BRANDON AS WELL AS THE OTHER CHILDREN ON UNIT 4A**
Monday, February 24, 2003 10:50 PM CST
Day +12
We were not off to a very good start this morning. Brandon woke up vomiting and his blood pressure was high again.He was given phenegran for his stomach and meds for the blood pressure. Around noon things changed for the better.The lab results that are done at 4:00 a.m. were back. His red blood and platelets were above the transfusion borderline.
Brandon's glucose count still remains in the 100 range,this is wonderful. I was so worried that he may become a diabetic over time.The GREAT news is that his WBC (white blood count) has come along way since yesterday.It is 1.1 which means 1,100. We are hoping and praying that this count will remain the same or better yet rise by tomorrow evening. Brandon and I are looking foward to walking around the unit. He will be so happy to get out of his room for awhile. I have had plenty of breaks, but this poor little guy has been stuck up in this room since February 5th.
Brandon got a few more presents tonight, Cindy and I went shopping at Target. I bought him a new cd and Cindy got him a playstation game (ATV Offroad Fury 2)and also a little lamb stuffed animal which she calls "Brandon's Little Buddie"
Cindy and mom will be leaving to go back to Virginia tomorrow.I really hate to see them leave. They were both very helpful. Mom stayed in the hospital with Brandon so that I could have a break and I was able to spend some time with Jason and DJ over at The Ronald McDonald House.
Brandon and I are hoping that Angie (sister) and Anthony(nephew)will be coming to see us very soon.Anthony is a very special little boy in Brandon's eyes and he is really missing him and his sister.
*FOR THOSE OF YOU THAT ARE HAVING TROUBLE LOGGING ONTO THIS WEBSITE AFTER YOUR FIRST TIME, YOU MAY WANT TO CONSIDER PUTTING THIS INTO "FAVORITE PLACES" OR LOGGING ONTO... WWW.FANCONI.ORG THEN CLICK ON WEBSITES FOR FA FAMILIES. THERE ARE SEVERAL CARINGBRIDGE WEBSITES ON THIS PAGE INCLUDING BRANDON'S.*
**REMEMBER TO KEEP PRAYING FOR BRANDON AND HIS FAMILY**
Sunday, February 23, 2003 7:27 PM CST
Day +11
Today has been one of those good days. Brandon's red blood count and platelet count was above the borderline so he did not have to be transfused today. His white blood count is currently at 500 and Neutrophils is at 400.
Brandon's blood pressure is still quite high tonight so he is taking medication under his tongue to help bring it down.His glucose level was at 96 this morning so we still have that under control.
Dr. Orchard stopped by to check on Brandon today and says he is doing well. The mouth sores are starting to heal, now that his white blood count is rising. Brandon was excited when Dr. Orchard told him that he could go out on the unit when his count reached 500 and stayed at that level for 3 days.
Again today Brandon has been sitting up in his bed almost all day. He has been doing lots of talking to myself and grandma. He also got to talk to his father today, so he was happy about that.
Brandon is feeling so good right now he is actually going to get up and play his playstation 2 game.He says he will only play until 8:00. We are going to watch the Grammy awards tonight. You know Brandon can't miss watching his favorite person. "EMINEM"
We are hoping that he wins lots of awards tonight.
**REMEMBER TO KEEP THOSE PRAYERS COMING FOR BRANDON**
Saturday, February 22, 2003 9:59 PM CST
Day +10
Brandon started his day off by having a red blood transfusion, his count was 7.3 at 4:00 a.m.His platelet count was low again this morning (36,000) so he was given a transfusion for this also.He still has the 3 white blood cells ,but his will start producing as days go bye. Brandon's glucose level has been in the normal range all day so this is a plus. His blood pressure still remains high.
Brandon has been doing very good all day. he actually talked today and even filled out his own menu. I think he circled everything on there. The child acts like he is starving to death.He has been craving vanilla icecream for 2 days now, but I seem to be having a hard time finding this flavor in cups so I had to buy icecream sandwiches and scoop the vanilla icecream out of the middle.
Grandma and DJ came to visit Brandon today. Grandma sit with Brandon while I took DJ and Jason to Mall Of America.
We had a GREAT time there. I bought Brandon another playstation 2 game (blood rayne).I think he should have about every game they have made for the PS2.
Well that's about all the updates for today.I better get into bed while Brandon is sleeping. I am very tired tonight and so is he. We have had some late and very rough nights this week.
GOOD NIGHT TO ALL.
Everyone have a good weekend and thanks for looking at the journal.
**PLEASE REMEMBER TO PRAY FOR BRANDON AS WELL AS THE OTHER KIDS ON UNIT 4A**
Friday, February 21, 2003 11:21 PM CST
Day +9
Well we are back on the roller coaster ride once again. Brandon had another platelet transfusion this morning, his platelet count dropped to 18,000. He had some flow nose bleeds early this morning.His blood pressure has stayed in the normal range all day and his glucose is staying in the high 100 range(this is just alittle high)but alot lower than it has been.
This is not the news that I want to give you all. I just want everyone to understand how fast Brandon's mood's change, and I feel sure that all transplant children go through this stage.
Brandon went into a rage tonight. His appetite kicked in again after about 5 days. He wanted vanilla icecream,well I could not find that for him so he decided he was gonna try some fruit loops, well he could'nt taste those. Finally the nurse told me to try him with something spicy. I ordered him spicy chicken wings and spicy fries.This was it. He was a happy little boy. He could taste the chicken, but it hurt his mouth.
He then give up and took his pain medication and went to sleep.
It sure does get tough sitting here watching him go through all this especially when there's nothing that I can do to make him feel better.
We all just need to keep the prayers coming for Brandon.
**GOD BLESS YOU ALL**
Thursday, February 20, 2003 11:35 PM CST
Day +8
Today has been a pretty good day for Brandon. His blood pressure is still alittle high and his glucose still remains between 200-300. Brandon still has alot of mouth sores, but the Fentanyl has been keeping his pain under control.
Dr. Orchard was in to check on Brandon again today and informed us that he is starting to make progress with his white blood cells. He has produced another cell so that is 2 so far within 2 days. Brandon's hemoglobin was 8.3 and his platelet count was 42,000. He actually went a day without being transfused which is GREAT!
Brandon still does not feel like talking much today. His father has been calling for the past 2 days, but he does'nt feel that he can get his mouth open enough to have a conversation with anyone ,even though he did feel well enough to sit up in his bed and play around on the computer.
Brandon's grandmother was able to come in and sit with him today while I took a break.My cousin and I got to go shopping at Target.Brandon talked me into getting him another playstation game (The Getaway)for his new playstation 2 that I had bought him last week. He is hoping to feel alot better tomorrow so that he can play his new game.
I hope to have even better news for you guys tomorrow.
**PLEASE REMEMBER TO KEEP PRAYING FOR BRANDON**
Wednesday, February 19, 2003 9:22 PM CST
Day +7
Today has been a fairly good day. The new pain medication(Fentanly)that Brandon is currently taking seems to be helping him quite well. He has been sleeping the best part of the day. The times that he has been awake, he has'nt felt like talking.
Again Brandon's vitals still remain high. His blood pressure was 135/70 at 8:30 a.m. then taken again at 9:00p.m. it was 134/68. His temperature was 101.4 this morning, but has been normal throughout the day.Brandon's platelet count was low (36,000) again this morning so he had to have another platelet transfusion.
We are still dealing with the high glucose level. Again today it was in the high 200"s. This is pretty common in FA patients. Children with FA tend to have trouble breaking down glucose so that makes them at high risk for becoming a diabetic. This is mainly caused by the steroid medication (Methylpredisone).
The Methylpredisone is also causing Brandon's face to swell.His face is so puffy you can hardly see his eyes.This is one of his medications that he will continue to take for weeks to months.
Dr. Orchard stopped by again today to check on Brandon. He still says that Brandon is doing well for all that he is going through.
GOOD NEWS! Brandon is starting to make 1 white blood cell so therefore he should be getting rid of those nasty, painful mouth sores within the next week.
Well that's all the news I have for today. It's about time for my mom and my cousin's flight to arrive so I better get to the Ronald McDonald House to meet them.
I would like to thank everyone for keeping up with Brandon's website and a special thanks to you that have signed his guestbook. GOD BLESS YOU!
**Please remember to keep praying for Brandon
Tuesday, February 18, 2003 10:52 PM CST
Day +6
Today is basically a repeat of yesterday. Brandon did not sleep well last night(just like any other night)he was up all night itching.This is one of the side effects from the morphine. The nurse tried everyway possible to make Brandon comfortable from benadryl to lotion, but nothing seem to work. Dr. Orchard took Brandon off the morphine and put him on another pain medication so now it's more sleeping and less itching.
Brandon's hemoglobin today is 9.9, but his platelet count remains low (32,000 ) so here he goes again with another transfusion and this is normal. As you can tell by reading his journal this is an every other day thing, it kind of switches back and forth from hemoglobin to platelets.All of Brandon's vitals still remain high including his glucose level that stayed in the 200-250 range.
I have been trying to get Brandon out of his bed for 2 hours now so that he can take his shower. The poor little guy just don't have the strength to move so I believe he will have to wait until tomorrow.
Hooray!! My mom and my cousin Ciende are coming in from Virginia tomorrow. They will both be here for 6 days.That will help me out alot and give me alittle time to spend with my other 2 boys Jason and DJ which are staying at the Ronald McDonald House.It is stressful trying to do all of this alone.
Brandon is getting excited about visitors coming all the way from Va. to visit him. He is looking foward to seeing his sister Angie and nephew Anthony sometime in March or April.
**PLEASE CONTINUE TO PRAY FOR BRANDON AND THE OTHER CHILDREN ON UNIT 4A
Monday, February 17, 2003 9:52 PM CST
Day +5
THE PICTURES ARE FINALLY IN THE PHOTO ALBUM
Brandon had a very yucky day again.He woke up this morning in serious pain due to his mouth sores so Dr.Orchard had to up his dose of morphine. His blood pressure and glucose still remains high and he had a temperature of 100.1.
Brandon"s hemoglobin was low (8.0) so he had to be transfused. He is having some nose bleeds tonight so there's a chance that he might have a platelet transfusion also.
Although I am scared and worried to death the Dr's keep telling me that all of this is normal. I have to say that Brandon and the rest of the children on Unit 4A have very good nurses and Dr's. They see these things in patients everyday.
It is so hard to have to look at Brandon in all this pain throughout the day. Brandon still has about 10 more days before things start changing for the better.
Brandon was hoping to be feeling somewhat better by evening so he could beat me in another game of "sorry"
but of course he was still to weak and in too much pain.
Hopefully tomorrow will be a better day.
**Please continue to pray for Brandon.
Here are a lists of medications that Brandon is currently taken or has taken since admission on February 5,2003
GCSF- (growth factor)
Methylprednisolone-(steroid) once a day
Ceftazidime-(antibotic) every 8 hours
Acyclovir-(anti-viral) every 8 hours
CSA-(anti-rejection)
Voriconazole-(anti-fungal) twice a day
Ancef-(antibotic) every 8 hours
Pantoprazole-(decreases acid in stomach)
Hydralazine-(lowers blood pressure)
Insulin-(controls blood/sugar level)
Morphine drip-(relieves pain) as often as every 10 minutes
ATG-(supresses t-cells for anti-rejection)
Zofran-(nausea)
Phenagran-(nausea) when needed
Tylenol-(prevents fever) when needed
Benadryl-(prevents allergy reaction) when needed
Cytoxan-(chemotherapy)once a day for 4 days/finished
Fludarabine-(chemotherapy)once a day for 4 days/finished
Mesna-(protects bladder from chemo)5xdaily/finished
Cyclosporine-(prevents graft vs. host) every 8 hours
Sunday, February 16, 2003 10:04 PM CST
Day +4
Brandon has not had a very good day. He woke up vomiting early this morning. The Dr. says that he has alot of acid in his stomach so he will now be taking zantac along with his phenegran.
Brandon"s appetite is great today, he has tried to eat turkey and cheese sandwich, jello,ice cream and spaghetti,but nothing seems to taste good to him. He is getting very frustrated with the mouth sores. Even though he does his mouth care 4x daily it still seems like it's not helping him the way he thinks it should.
Dr. MacMillian gave Brandon his own morphine button to help with all the pain.His blood pressure continues to remain high so he is still taking the meds for that.He is back on insulin again for his blood sugar level which was 319 today. Normal ranges between 60-150 so he was a bit high.
Uhh ohh the nurse just came in and informed me that the blood sugar has rised again to 339. His platelet count was 24,000 so he had to be transfused. His hemoglobin remains at 8.3.
Everyone is wanting to know what meds Brandon is currently taking and what they are for. I will list them for you all tomorrow so please check his journal.
Sorry about the delay with the pictures. I am having problems downloading the disk. I will have them in the photo album as soon as possible.
** PLEASE CONTINUE TO PRAY FOR BRANDON AND THE OTHER KIDS ON 4A.
Friday, February 14, 2003 10:31 PM CST
Day +2
HAPPY VALENTINE'S DAY!
I have nothing negative to report today. "GOOD NEWS"
Brandon has been feeling well all day. He has been up moving around, playing his playstation (his favorite thing to do) and also checked out his webpage.
Today was the first day he has been able to read what everyone has written in his guestbook.
Brandon was amazed with all the entry's he has recieved considering this is a new webpage. Everyone keep them coming,so that brandon has something to look foward to.
**Please keep praying for Brandon as well as the other children on unit 4A.
Thursday, February 13, 2003 11:26 PM CST
Day +1
Before I begin with the update for today, let me back up to the happenings from yesterday. Again Brandon was'nt feeling well. His RBC dropped down to 7.2 so he had to be transfused again and he continued with the high blood pressure which was 160/90.His blood sugar count went back to normal so Dr.McMillian took him off the insulin.
Brandon had his bone marrow transplant at 2:40 a.m. which is considered Feb.13, but since the actual transplant had been scheduled for around midnight it is still considered Feb.12. Sorry if this is confusing everyone.
Everything went well for Brandon during the transplant(he slept). His temperature did go up alittle, but no major complications.
Brandon seems to be feeling better today than he has since his admission.He got a new playstation 2 game system from his mom today so my guess is that he will be up all night playing his games.
Dr. MacMillian says Brandon is doing well and the worse part comes between day +7 and day +14. This is when he could possibly get mouth sores, vomiting, and infections. Brandon got his head shaved last night so we don't have to worry about his hair falling out.
Please continue to check in often for updates on Brandon's progress.
I hope to have pictures in the photo album within the next couple days.
**Please keep the prayers coming for Brandon
Tueday, February 11, 2003 9:04 PM CST
Day -1
Brandon had a very bad night. He was up all night vomiting. The nurse gave him phenagran for his stomach along with the other 13 meds that he is currently taking.
Today he is feeling somewhat better other than his blood pressure rising and his blood suger level went up to 289 so now he is on insulin, but this seems to occur in FA patients. As of now his blood counts are... WBC 0.4, Hemoglobin 8.8 and platelets 15.
Over all Dr. McMillian says Brandon is doing well so we are on the count down for his transplant tomorrow.
Brandon had a special visitor today. GUESS WHO! snoopy, he was making his rounds on unit 4A to visit with all the wonderful kids.
**Please remember to keep Brandon and the other kids on 4A in your prayers.
Monday, February 10, 2003 10:16 PM CST
DAY -2
I would like to start this journal by updating everyone on Brandon's condition for the past week since his webpage was deleted.On Feb.5 Brandon was admitted to Fairview University Medical Center.He then had a bone marrow harvest done and also a red blood cell and platelet transfusion.On Feb.6 Brandon started his radiation and got very sick.On Feb.7 he started chemo and still isn't feeling the best.This is the last day for chemo and is Brandon ever glad.He is getting very tired of his room now, he has been here 5 days and is very bored. He was all smiles when his brothers Jason and DJ came from Ronald McDonald house to play games with him and also when he recieved special Valentine cards from the kids on the bone marrow transplant unit.
Whoops! don't want to forget to mention that(Hunter Kelley) one of Brandon's new buddies surprised him with a electronic game. Hunter is such a sweet little boy.
**Please remember to pray for Brandon as well as the other kids on 4A.
Monday, February 10, 2003 1:31 PM CST
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