Graft-Versus-Host Desease
Kirstenmumof3 wrote:  What more can happen to him? What else do we have to face? I can't do this anymore! 
When I left Spencer lastnight he had a small rash on both of his knee caps. I didn't really think anything of it and then I saw that this morning it had spread to down both of his legs. By this afternoon the rash was starting on the palms of his hands and moving upward from his wrist and it was getting more raised and redder. Spencers Doctor called in the Head Doctor and they said it's Graft-Versus-Host Desease.
Here's a little bit of info that I've found:
Graft-versus-host disease (GVHD) is a common side effect of an allogeneic bone marrow or cord blood transplant (also called a BMT). An allogeneic transplant uses blood-forming cells donated by a family member, unrelated donor or cord blood unit. In GVHD, the immune cells from the donated marrow or cord blood (the graft) attack the body of the transplant patient (the host). GVHD can affect many different parts of the body. The skin, eyes, stomach and intestines are affected most often. GVHD can range from mild to life-threatening.
Acute GVHD appears within the first 100 days after transplant. Acute GVHD can range from mild to life-threatening. Symptoms depend on which parts of your body it affects and how severe it is:
It may appear as a rash on your skin. It often starts on the palms of the hands and soles of the feet, and can spread later to other parts of the body. If GVHD is severe, your skin may blister and peel.
You may have cramping, nausea or diarrhea if it affects your stomach or intestines.
You may have yellowing of your skin and eyes (jaundice) if it affects your liver.
 This really bothers me because Spencer has had some of these other symptoms for quite some time now, nausea, cramping, inflamation of his intestinal tract, yellowing of his eyes and now the rash. I don't know what to do or say. I don't know if I should call the doctors on all of this or if I should just keep my mouth shut?
I just want him to get better. I just want to see him smile and laugh and be a normal little boy again. I want him to eat and drink. I want to see him running down the halls, but none of this is happening. And it's getting harder and harder for me to see him like this. Mentally, Physically and Emotionally I'm just drained. I'm running on fumes.
My3LilMonkeys replied:  I would say call the doctors. Better to be safe than sorry.
I truly hope this whole ordeal will be over soon and your little boy will be healthy again.
My3LilMonkeys replied: I vote you should call the doctors - better safe than sorry.
BTW, I don't know if it was intentional for you to post this twice - so I am responding to both.
I hope Spencer will start to feel better soon. You are doing a wonderful job and are a very strong woman to be dealing with all of this so well.
mckayleesmom replied: Oh Gosh...I am scared for him just reading that....I would definantly let the doctors know that he has these other symptoms....I really hope they get to the bottom of this all soon for your sake and for Spencers. Im so sorry this is happeneing to him sweetie, I really don't know what to say. My heart just aches for you and I want to give you a hug. I wish I lived closer so I could give you a break for a couple hours and stay with Spencer. Hugs and prayers sweetie...I hope that your little boy comes back to you soon. You are one of the strongest woman I know right now and I pray for God to give you a little more strength to get through this.
redchief replied: Kirsten, you are a wonderful and strong mom and you're probably doing the best thing you can do. You're not bottling up all of those emotions, but sharing them. That takes a lot of bravery too.
We continue to pray for you and Spencer. Hang in there!!!!
~~*Missi*~~ replied: ahhhhhh i am at lost for words. I hope that everything takes a turn around for you and especially for spencer. You both are brave strong individuals. I can't even imagine.
You are in my continued thoughts and prayers. If you need anything please let me know!!!
mummy2girls replied: Oh no! Hun i am sos orry! Poor Spencer! (((HUGS)))) I am sending many prayers his way!
Yes talk tot the docs about it all. Dont keep it bottled up. Let it out! You need to be heard by those docs!
amymom replied: We continue to pray for you, Spencer and the entire family.
kimberley replied: i am so sorry. you are both in my prayers.
i am up at all hours if you need an ear or a shoulder.
CantWait replied:
1lilpeanut2love replied: Prayers and positve thoughts are coming your way!! I feel so darn bad for what you all are going through. I hope GOD can work a miracle on that sweet boy. 
luvmykids replied: Kirten you must be sooo frustrated with the doctors, did they know about the other symptoms? I'm so glad you come here and talk, it takes a lot of guts to drop your guard and admit how tired and frustrated you are. No one expects you to be made of stone, just know we're all thinking of you and Spencer and wishing we could do more than post here.
MommyToAshley replied:
I can only imagine your frustration. It seems with every step forward, there are two steps back. But, I have heard it is common in this type of treatment, and the steps forward are really victories. I am sure this doesn't make it any easier on you.
Since you asked for an opinion, I will share my thoughts with you based on what I have read in your posts. It sounds like the doctor is aware of the rash symptoms, but I am wondering if the same doctor is aware of all the other symptoms combined. I would definitely ask for a counsel with the doctor. Find out how serious he thinks this is and what the course of treatment will be. If you are not satisfied with his answers, then I would ask for another opinion or the next doctor in the chain of command. I am not one to make waves and I am pretty passive. But, I think in this case I would do as you have been all along... keep asking questions and keep on top of the doctors. If you are not happy with his treatment or feel the doctor is not giving you all the facts and answers, then you have the right to ask for another doctor. However, after counsel, you may find that you are satisfied with his treatment and that it will just take some time for Spencer to fully recover. But, I think you really need to have a counsel with the doctor(s) in order to give yourself some peace of mind.
I'm glad you can talk to us. I only wish I could be there in person. I can't tell you how often throughout the day I think of you and Spencer. Hang in there. We are all pulling and praying for Spencer.
~Roo'sMama~ replied: Oh Kirsten I'm so sorry. I just don't know what else to say. You and Spencer can get through this. P&PT's 
gr33n3y3z replied: I'm sorry to hear this 
I would call the Dr on it and ask tons of Questions maybe you should write down your questions that you have
You are Spencers Mother you have every right to ask questions about your child health and well being 
Kirstenmumof3 replied: Thank You for allowing me to write out how I'm feeling, even if no one responded just having a place to write it all out is worth more than you all know. Having you respond means the world to me. Even though some of us are miles and miles away, I feel closer to all of you than I do to most of my friends in Thunder Bay. From the bottom of my heart I Thank You! 
mom21kid2dogs replied: Although from what you found on this it seems as though it's common, I'd certainly ask how long they think this will last, can you expect it to get worse or better and when, what this means for his overall recovery, etc.
amynicole21 replied: I'm so sorry. Definitely ask the doctors why they didn't suspect this sooner. Is there anything that can be done to treat it?
MamaJAM replied: Poor kiddo. Poor mama!
You're all still in my prayers.
BAC'sMom replied: We continue to pray for you, Spencer and your family.
kayla's mama replied: I really don't know what to say but you and Spencer are in my thoughts and prayers daily
Hang in there sweetie You are doing such a wonderful job 
booey2 replied: We are continuing to remember you in our prayers. May he get over this latest hurdle that has been given to him and you.
Terri
Bee_Kay replied: Kirsten-
I was just about to write a new post inquiring about Spencer. Then I thought I'd look back and see if there was something I missed, and I did overlook this post yesterday.
I don't have any advice but I would definately tell the doctors anything (and I mean anything) you notice with Spencer.
On a personal note:
You are truly a remarkable woman. The strength and determination you possess is without a doubt admirable.
In my opinion you are the type of mother that alot of women should strive to be. Although all we see are words typed on a computer screen. The deep emotions you are dealing with shine brightly and touch every single person that reads your words.
When things are down and not looking good you somehow find strength to keep going.
You, Spencer and your family continue to be in my thoughts every single day and I wish you all the very best during this incredibly trying time in your lives.
|
