My son (he's 14) just reached his 1 year OT last week and today we got the news he has relapsed. I am in total shock as it came out of nowhere--he has had a cold and some bruising since Friday and Monday relapse.
We are going to do transplant. But that is all we know so far. He was originally dx with very high risk pre-B ALL with MLL translocation at 11q23. I guess I am looking for some basic info about things on this treatment road. His siblings will be tested later this week. Kinda at a loss as what to even ask you guys.......
Any advice is appreciated,
Hi nana, i am so sorry to hear of your sons relapse. My son was 18 when diagnosed with aml, 20 when relapsed and transplanted. You may want to look at Leanns moms thread started on this forum. There is a link on it, with questions to ask.
When my son originally was diagnosed, they tested his 2 brothers, my husband and i, and none were a match. The chance of a sibling match is about 25%. So when he relapsed, we were already aware of that, my son had been hla typed, they checked the regristrar and found lots of potential matches which got narrowed down rather quickly to 1 perfect match which became unavailable and my son had a double umbilical cord stem cell transplant at duke.
While they generally look at siblings first, there are various types of transplants, u cords, unrelated bone marrow or peripheral stem cell and haplos (half matches with sibling). The whole process of typing, testing, going to transplant often takes a couple of months. U cord is more readily available should they have to go that route. Most patients go through a few rounds of chemo during the interim time, and i am sure they will be doing chemo to get your son into remission.
My son and i moved from florida to north carolina for transplant. Wherever your son has a transplant at, you all will have to be close to the facility for about 100 days post transplant. For us, it required that we be at duke and in the area for about 5 mos.
The big difference in a child having a transplant, most childrens units require a parent or caregiver to be present 24/7. Duke had murphy beds in the childrens rooms for parents. Also the parents have a huge responsibility in medication administration once discharged often including iv's etc. But they prepare you.
Your length of stay in the hospital for transplant will vary with type of transplant which can effect engraftment time, and provided there are no complications that cant be handled out patient. U cord is usually longer, our stay was 42 days. A lot of bonemarrow or peripheral stem cell transplants are released much sooner. Once outpatient you spend the next couple of months with frequent outpatient visits for supplements, blood products, etc. Someone will have to be responsible for being the caregiver and it is a full time job requiring full attention. I personally took a LOA when my son relapsed, which was extended to nearly 8 mos for his relapse chemo then transplant. After the 8 mos were up, i had to quit my job, my son still required an awful lot and was frequenting doc offices as well as numerous hospitalizations but each transplant is unique. I stayed out of work for about 14 mos.
It is a very isolating experience for everyone involved and i think teenagers have a more difficult time than children. Most transplant centers have a childrens life services, they are usually very good at trying to keep the children busy. Teenagers, esp. boys are harder to entertain, and teens seem to struggle more with the isolation and boredom. Often centers will accomodate children with schooling, that is something you would have to check into.
Its alot to take it, feel free to ask questions, you have time and somebody will answer. Again i am so sorry you all have to join us on.
I wish you all well, a quick remission for your son, and a safe transplant.
Maddie just started her phlebotomy treatments for high ferritin (sp?). She didn't have too many transfusions with her relapse, but had hundreds with original dx and liver failure...they had estimated that her level would be between 5 and 10K, but we surprised to find it just 3500. Was wondering what your sons level was and how long he has had the treatments?
Sorry for the late response robyn. My sons ferritin was just shy of 1300 last check. He has been phlebotomized once a month for 10 mos now (about 500 cc of blood each time). His high was about 2300. He had 260 transfusions of blood products but i would venture to say about 40-50 were washed rbcs. The majority of his transfusions were platelets. His ferritin initially went up when phlebotomized before it started coming down, seems like it took about 8 mos before i started seeing a decent drop. How is your little girl handling it? How much blood do they take from little ones?
I am so sorry that your son has relapsed and will now need a SCT. Here is a link that is a list of questions that this board has put together. http://community.lls.org/message/108855#108855. There are several folks on this board that will help you navigate this process. The saying on this board is to stay determined and your son can beat this beastly disease.
That sucks. I'm sorry to learn about this. But often a relapse is what gets us off dead center and moves us into a lasting cure. My hope is that's what's going on here.
I always have a tough time answering the "any advice?" questions. I could write a short novel and still not hit on anything relevant to you. I do much better when someone asks "what's this about?"
I think the best thing is to get into a study of what's going on and what's going to be happening down the road and ask any questions that come up in doing so. Your doc should have information explaining what's going to happen ad how.
You might check out this link to the National Marrow Registry web site. You can find a lot of answers there.
Hope this helps. Please let us know how we can help support you.