New member with questions regarding BMT and donor process

[nbullock11]

My 2 yr old son was diagonosed with MDS on 11-4 after 1 1/2 yrs of having neutropenia. The dr's think now he had MDS the whole time but it was evolving slowly. The doctors want to do a BMT in 3 to 6 months. My daughter was tested and is not a donor match. His HLA was entered into the BMT donor bank this week. We are meeting with the transplant team hopefully in the next 2 weeks. We live in Phoenix and his is currently being treated at Phoenix Children's Hospital. I'll post our full story on the tell your story forum.

I have read all the information on this forum and I still have some questions. I have some questions for families that have gone through this process with your child.

1. How long did it take to find a donor?
2. Did any of the patients get cord blood transfer instead?
3. How long was your child in the hospital?
4. Was your child feeling sick the whole time or did he or she have good days and wanted to play?
5. Can you recommend activities that you did with you child in the hospital when they were feeling well?

As you can image it is difficult to entertain a 2 yr old. When he has been hospitalized for a few days we go stir crazy. Any information would be greatly appreciated.

Nancy (the mother of Noah) DOB 9-18-09 diagnosed with neutropenia 7/10 and MDS on 11-4. Waiting on BMT

[Neil Cuadra]

Nancy,

Have you gotten more information since you posted your message above? It usually doesn't take long for a search of the bone marrow registry (including looking for cord blood matches).

Children undergoing transplants will have good and bad days, just like adults. You can read about a 10-year-old's transplant experience in Evan MacNeil's Personal Profile. Of course, older kids are different in that they can understand what's happening to them and can tell you how they feel.

Kids in the hospital like the same types of activities they enjoy at home, although you're limited to what you can do in a hospital setting. Quiet toys are a mainstay, and human interaction is often the best distraction. It's much like traveling with a youngster, where you have to keep them occupied when they're awake on a plane, train, or long car ride. Hospital staff can probably suggest some ideas. They may also tell you items to avoid. For example, some hospitals may tell you to leave the stuffed animals at home when a child is immunocompromised.

Please let us know how it's going for you and your son.

[evansmom]

Hi Nancy,

Sorry that your little guy Noah is having to face such big challenges. Becoming a member on this wonderful forum was a great decision.
To answer your questions (sorry I didn't see this sooner):

1. Once we decided it was time for transplant and gave our BMT doc the go ahead and begin the procedure to have the most suitable donor contacted, it only took about 4 or 5 weeks to learn he had been reached, gone through all of his testing, and was ready, willing and able. At that point, a date for BMT was set for about 3-4 weeks later so that our donor could get through his university exams uninterrupted.
It is entirely dependent on how much time it takes to track the donor down, in the event that they have moved a few times etc., and how easily they can clear their schedule to go through the extensive testing...lots of bloodwork, detailed physical, etc.

2. Though I have read many pediatric BMT blogs where cord blood was used (very good potential for successful transplant esp. in very small children like your son), my son, who was 10 at the time of his BMT for aplastic anemia, received bone marrow from his donor's hip bones. We had two cord blood units available to us (and I think the BMT doc may have used both given Evan's age/size) but they had one significant mismatch on HLA-C that made that choice undesireable.

3. Evan was in the hospital for 6 weeks. He had a very uncomplicated course and was discharged on Day+36. We were able to go home as opposed to say the RMH near the hospital because of our close proximity to the children's hospital that managed Evan pre-BMT.

4. Evan went in to hospital on Day-8 to begin his conditioning chemo protocol and began to feel quite ill at around Day-5. He had around 4-5 days where he felt and looked very unwell with nausea, vomiting, some headaches and general and significant weakness. This was a very hard time as you can well imagine, but the doctors and nurses worked very hard to get the right medications on board to minimize all these effects. As a result, Evan mostly slept through all the hard hours and days, though would sometimes just lie awake and very still, holding it all together. My experience attending pediatric hematology/oncology clinics, being on the BMT unit, etc. has shown me time and time again that children are amazingly tough and stoic. They just do what they have to do, even the little ones. They adapt much easier to change than we do and base much of their reaction on how their loved ones around them are reacting. Once Evan reached Day 0, or transplant day, we started to see the old Evan emerge. He began smiling and talking more and engaged in some movie watching and game playing and by Day+3 , he was back on track, though the appetite took it's time to recover!

5. Keeping a two year old entertained will certainly be more of a challenge, but hopefully Noah will do really well and the time stuck in an isolation room (where it will be hardest to keep him happy as you won't be able to pop him in the stroller and bring him out of the unit for a change of scenery) will be only a few weeks or so. For when he's in the isolation room, when he feels up to it, I would recommend purchasing some new toys that are sealed in packages (as most toys are) that are entirely plastic and therefore easy to sanitize frequently. Choose ones that are different, bright and cheerful, like Lego Duplo blocks and such and wipeable books that he will enjoy looking at with you even when all he wants (or needs) to do is lie still in the crib. Interactive crib mobiles and other attacheable crib toys are another great idea. The more variety the better as you'll be able to change things up often and keep it interesting. I'm trying to remember my kids at 2...an Exersaucer freshly laundered and sanitized and any other "confinement" type toy is perfect because he will only be able to touch the tray and the toys attached to it (as opposed to toddling around touching everything) which means less risk for infection while he's without an immune system or white blood cells. Another must-have is a new set of those large square interlocking colourful foam floor mats that you could put down while in isolation that would give Noah some clean floor space to stretch and build Legos etc. They are easily wiped up for next use. A new ride-in car would make a PERFECT gift for Noah if family and friends are asking what he would like! He wouldn't have the energy to go fast or far so you would be able to manage the IV pole easily and it would be a nice change for him and, even better, **he would be able to excercise his little legs which will, most definitely, get weak and stiff if they aren't used every day**.

Side note: When he's not able to move because he's unwell and therefore sedated and sleeping most of the time, I would recommend that you have the physical/occupational therapy team show you how to passivly excercise Noah's legs. This will go along way to preserving his ability to walk with ease after transplant. I wish I had known this at our BMT time as Evan was incredibly stiff post BMT and it took weeks and weeks to get him walking normal again.

I hope this helps and I wish little Noah all the best. Please keep us posted and let us know your questions and concerns.

Sincerely,