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Parents' Comments on Bone Marrow/Stem Cell Transplants (FAQs)
Parents learn a lot about BMTs when their children go through the procedure. Sometimes it's easier to understand when a knowledgeable parent explains the process in their own words! As a disclaimor, we must say that these are parents comments and not medical professional comments.
Can someone explain why a persons' heritage so greatly affects finding a match for a BMT?
- The Big Six antigens are amazingly alike within families, at least some of the time. They're pretty similar within ethnic groups. They are vastly different among ethnic groups. I'm going to guess that the HLAs were handed out one by one just before God smacked the Tower of Babel.
- Most people marry and then reproduce among their own ethnic groups. (To include heinz 57 white and black americans) Therefore, ethnic groups tend to have the same antigens.
- The National Registry in the US has more Caucasians of Northern European extraction as donors than any other ethnic group. Therefore an American of European ancestry is going to have better luck needing a match is going to have better luck finding a donor than an Asian, African American, African, Arab or Jew.
I have a difficult decision to make. Do I move my son to a BMT center that has more experience but that is very far away? The center I am in here in Madison, WI has done only 5 BMTs for children in my son's situation since 1993 and that is a poor track record that I am not impressed by. How does one decide where to go and what to base this decision upon? On the one hand I have people here who live nearby me and can assist me in this transplant process (i.e., family and friends). On the other hand there are much more experienced centers like Fred Hutchinson in Seattle who have done transplants for kids in our son's situation in the dozens. So what it comes down to is finding a basis to decide upon. How does one decide these things? Are his odds here just as good as anywhere else? How do you decide? Feedback would be greatly appreciated.
- Most literature recommends a BMT center that has as much experience as possible. Your hospital may be very good, but......why not call the pediatric centers at Duke, Hutch, Stanford, and Houston to see what their personal opinion is of the center you will be dealing with. This will give you a wealth of knowledge, ask all about your son's condition, possible appts. Time is a factor--how long can he wait before BMT? Are you going to have enough time to fly all around and check out the various programs? Money is a factor--can you afford the BMT if your insurance company doesn't agree to another center far from home? Also, you will need to do annual follow-ups, post BMT. Family is a factor, but this depends on the family involved. If you have more children and one parent needs to be home with them, or can the whole family move to a Ronald McDonald house where the BMT is? Staff experience with BMTs. An experienced BMT nurse is worth her/his weight in gold, trust me. An inexperienced BMT staff or even one nurse, can really stir up the situation. You may not realize it, but your child will have up to 20, 25 meds going in at one time. Related services available at the hospital--a BMT is not just that, it also includes a long recovery period that requires physical therapy, heart monitoring, eye monitoring, how good is the ICU? There are so many things involved.
I didn't realize that this stem cell harvest/rescue is actually a BMT! Duh! The coordinator said it is an autologous BMT...can anyone tell me more? When we were first told about the procedure, they made it sound like no big deal, but I'm thinking a BMT IS a big deal! Help me here if I'm wrong! (LeeAnn)
- Yep, "stem cell rescue" is the same as a BMT. Bizarrely, the "rescue" is not what actually gets rid of your kid's cancer. It is there to "rescue" your kid from the side effects of the chemo, which will get rid of the cancer but also suppress his existing marrow to a dangerous point.
- "Stem cell" itself is confusing to some people, who have gotten used to hearing of "stem cells from cord blood" and have this idea that a "stem cell" is a kind of cell that lives in a placenta. That's not really true; a "stem cell" is just an immature, undifferentiated cell that hasn't decided what it wants to be when it grows up... like the healthy newly-formed cells in a healthy person's marrow. A Classic BMT is stem cells; an auto-BMT is stem cells; a cord blood transplant is stem cells. The point is to get healthy stem cells into the patient at just the right time so they find their way to the inside of the big blood-producing bones and start cranking out new cells.
- It's a difficult procedure, but it really does work for a lot of kids.
- I hope I can give some satisfactory answers to your questions. If none of the relatives are suitable matches then a preliminary search will be done on the marrow registry. The majority of people on the registry have only been tested for four of the six major antigens (This is to control costs). There are a few 6 out of 6 and a few more 8 out of 8 people listed on the registry. (The military routinely tests it's donors for six). The best case scenario is that several fully tested people will show up on the preliminary search. These people are identified and hopefully are ready, willing and able to donate.
- Lets say a some potential donors come up matching four, but haven't been tested for the other two antigens. Then these people are identified and asked if they will come in for further testing. This can be a long, frustrating and slow process. That's why if they are going the BMT route, then this has got to be started right away.
- Many people have donor drives while going through the elimination process with the NDMP. We did. Although no match was found for our daughter, three people from our drive were identified for other people. That made us feel great.
- Be aware that some BMT coordinators just aren't as aggressive as others in finding matches and getting all the potential donors tested. Sometimes family and friends just have to stir the pot to get some action.
- Our family has had great success with drives -- they have been organized and managed by friends of ours in different cities, however. They've done all the hard work.
- Here are a few ideas that they used that were wonderful:
- One drive was hosted in a hospital. So many healthcare workers came during the 2-days, plus many from the surrounding towns. See if anyone near you would be willing.
- Get media interest -- maybe a follow up story on the news could be in the papers and TV, Radio, etc. That brought a face, family, name, etc into the effort, and MANY people said they turned out because for the press. And Adam's perspective of what it was like to be a donor would be incredibly meaningful. And/ Or if you know of a child who is waiting for a BM match, perhaps their family would be willing to share their story. It's important.
- Have him form a committee to help him! It's a lot of work.
- Check with the Marrow Foundation or Leuk Society to see if they'll help fund or match funds, or pay the difference for ABDR testing (vs just AB testing). If you have big benefactors that will cover the drive $, let the public know it's FREE. More will come.
- The drives here were festive -- pics of our son, welcome signs (painted by our son, Travis -- 5 yrs old), nice soft music, balloons ALL over, raffles of merchandise (to offset costs of the drive) like donated Princess Di and Erin Beanie Babies, a signed print from Wrigley Field, etc. Also Fergie Jenkins (famous baseball player!) came and signed autographs at one drive. Brought out a # of people and got a lot of publicity for the drive too. One upcoming drive here in our town is having it at the Police Station and will have Fire trucks and Police cars etc and a kids lockup to get families to come even with their kids. Also, sign age is important. Make sure everyone can see signs from the street on that day to get to the right place. Other drives had people handing out flyers that day on the street to get people in.
- Media came to the drive and interviewed our son and many of the attendees. Did follow-up stories including how people can register if they missed the drive.
- Contact local corporations who may be willing to sponsor the drive, or fund part of it, or at least encourage their employees to attend (get time off to come).
- Put flyers all over with this poem and the dates and time of the drive:
A hundred years from now
It will not matter
what my bank account was
the sort of house I lived in
or the kind of car I drove
But the world may be different
because I was important
in the life of a child
How can ANYONE refuse?
- Make sure the media or anyone else emphasizes that to register it is a small blood draw from the ARM. People have all sorts of ideas about the registration process that inhibits their attendance.
- Have Adam and Grant and your family there at the drive to thank people for coming. Give them something to hand out or do (Our son handed out Origami flowers he had made at one drive!)
- Post the drive on the listserves. Then people like us can include the date place and time on our web sites too, in case we know people local to you.
- No matter what the attendance, ANY number is a success. More in the registry than the day before.
- Contact EVERYONE you know -- and those you don't -- synagogues, churches, colleges, schools etc. To post the info re: the drive.
- Maybe do it in conjunction with a blood drive if you can't get anyone to sponsor place or time for a Bone Marrow Drive. By the way, we called ours Marrow Drives, so people wouldn't get freaked out about the Bone part and make up stuff... see 9 above.
- Have a book handy at the drive for people to sign, color, and write messages to whomever the drive is for (if you know one person who is waiting for a match). This is the most wonderful keepsake for us. Most of the people we do not even know!
- The donor goes through... well, not too much really. Nowadays general anesthesia is normal for the donation procedure. They put the donor under, stick in a really good-sized biopsy-type needle, and extract an amount of marrow that depends (IIRC) on the size of the recipient.
- Like the oil-drilling techniques that Iraq claimed Kuwait was using a few years back to steal their oil (you learn so MUCH on this list!), the doctors who do the donation procedure like to use the same puncture several times by sticking the needle in at various angles. It cuts down on trauma and the minor disfigurement to the donor. So typically the donor gets something like five little "dot" wounds around where s/he would wear a belt, feels a bit of a sting there for a few days, has to undergo a "general," and is pretty tired for a few weeks or so.
- My totally non-professional advice on this is to keep in perspective the pain and suffering the donor (see above) goes through. It is just not that big a deal. The donor gets in and out of the hospital, no big whoop. The risks to the donor are extremely small--only the anesthesia itself carries any risk to speak of.
- Meanwhile, the BMT recipient gets about 8-14 days of high-dose chemo, and in some cases heavy full-body radiation, to allow the best probability of obliterating every last cancer cell.
- I guess you could tell people:
- You will probably never be selected!
- T'S ALL DONE UNDER A GENERAL
- They stick a needle into your lower back, about five places, and remove what amounts to a few units of blood. There is no cutting and just the very faintest scar--a row of little dots, much smaller than freckles. They're practically impossible to find six months later.
- It will probably be sore for a few days, like falling on ice. My kid needed fluids, a few days of iron supplements, and ONE, count it, ONE "Tylenol with Codeine" dose.
- The recipient's insurance pays for everything.
- You might miss a day of work. If your boss is human, she will let it slide.
- Our donor-son got poked twice. Nurse Coordinator said they took about 12 ounces (pop can) of marrow out. He was out of the hospital in less than 12 hours. Went out for dinner that night. 2 Advil that night, 2 the next day. Played in a basketball tournament two days later. (About the comment: You might miss a day of work. If your boss is human, she will let it slide): and, if you are a kid, the principal and teachers are pretty understanding too. And if my son, who can't stand to WATCH a needle poke, much less get one himself can do it, anyone can.
- The basic idea is that the cancer patient needs a really huge dose of chemo to be sure of getting rid of the cancer. Said huge dose is enough to shut down the bone marrow completely and irrevocably--hence enough to kill the patient. So research has found that bone marrow from another person, or even from the same person, can be stored briefly, filtered to remove bone chips and other yucky stuff, and then given to the patient JUST LIKE A REGULAR BLOOD TRANSFUSION in an IV.
And what happens during a BMT? What will my child experience?
- The BMT recipient gets about 8-14 days of high-dose chemo, and in some cases heavy full-body radiation, to allow the best probability of obliterating every last cancer cell. S/he often (and this is all laid out in the protocol documents) has one day with no chemo before the transplant and bottoms out around Day 7 or so (where Day 0 is transplant day).
- Sometime maybe around Day 7 to 21 (I'm really guessing here, it's mostly from memory) the new bone marrow should start to engraft. It just floats around in the bloodstream and somehow just "knows" to get inside the long bones and get to work. ONCE IN A GREAT WHILE the new bone marrow just doesn't engraft and this is a Bad Thing. The transplant can be tried again but the patient doesn't have a lot of time to wait!
- Once engraftment occurs you get to relax a little but the patient is still just waaaaay crashed on counts for weeks. Bluntly, you can have a very successful transplant that kills the patient.
- This was a great explanation. The only that I would add is that the patient must remain in isolation until the counts are reasonable and there are very strict sterile procedures which must be followed -these vary in treatment centers. Also, It think that it is important to realize that it takes a long time for the patient to recover from this trauma.
More personal stories:
- Our son had a stem cell transplant which is like a BMT, except how the cells are harvested. Stem cells are gathered by a process called apheresis. That entails being connected to a machine which takes blood out, spins out the stem cells and then returns it to the body. Our son found the whole harvest process painless and boring, it took about 4 mornings, 4-6 hrs each time.
- Transplant is a very intense time, our son had 9 days of "super lethal" chemo, one drug turned his skin very dark and he peeled head to toe. The worst for me was mouth cares, our son had severe mucousitis, the lining of his mouth all the way down his throat was raw, but had to be cleansed 4 x daily with 2 different solutions and swabs. I found myself detaching emotionally to survive having to in essence torture him in the name of saving him. We did as much almost all his cares because as much as we trusted and loved our med staff, we knew we could be more patient and gentle with him than anyone. We were only there for him, as opposed to our dentist or nurse needing to get on with their duties in the next child's room.
- Our son was very close to what I would call death, he just could nothing but lay and whimper, we questioned ourselves many times, was this the right thing?? His engraftment came at day plus 10. The day before his skin looked like it was healing a bit in places, a day later he sat up and wondered what all those toys in the corner were for...(he had received a load of gifts but was too out of it and miserable to care up to that point), he wanted breadsticks and sauce from Vals (Nebr's famous italian pizza joint), he cried because he had no taste, everything tasted like cardboard for several weeks. We had the best luck with ramen noodles.
- He was discharged on day plus 12. It was truly like seeing someone rise from the dead and a first hand look at the body's ability to put itself back together and heal.
- I spoke of post trauma, It took many months to get my heart and soul back into my body, I wasn't detached from loving my family but just felt numb, it was very traumatic and one might question was it worth it for only 14 months?? My answer for us was YES, we have had 2 more birthdays, a very normal 1st grade year, he knows how to read, we went to Disney and yellowstone, we are going into our second christmas since transplant, there have been countless precious moments, even since relapse
- My advice for surviving transplant is stick together, we took our then 3rd grade daughter out of school and she went to Omaha with us, we washed our hands compulsively and all hung out with our son as much as possible. Part of the intensity is the isolation, far from home, needing to avoid any and all germs it was so lonely. We took our computer and did e mail from his room. And most importantly, plan a huge party, an idea we stole from Jason Gaes (my book for kids with cansur), when we were afraid, we planned our guest list, decorations....and 100 days after transplant we partied with 350 of our closest friends and family, pot luck, the building use was donated by the owner, all we bought was soda and helium for the balloons. We also planned our disney trip, read aloud from the guide book, circled, dreamed and went in Sept after transplant, we used money left in our son's med fund from donations, it was as vital and therapeutic as any med or chemo so we felt ok about going that route.
- At our hospital, our daughter did NOT have to remain in isolation. We were in a brand-new ped onc unit where the entire thing had HEPA filtered air. The unit was entered through an anteroom where all visitors had to wash their hands. Our hospital felt research indicated that the crucial thing to prevent infection was hand-washing. We washed our hands ALL the time. However, no scrubs were required, rooms did not use plastic sheeting stuff, and all well adults were allowed to visit. Kids could come too if they were not sick or not in a day-care situation (it was summer, so school exposure was not an issue). Our young son came to visit frequently, and our 2-month-old infant stayed in a crib in her room when I stayed with her.
- My daughter, believe it or not, recovered very quickly. Let me point out, SHE WAS AN UNUSUAL CASE. As one of the doctors told David, better than textbook. She did have the usual mucousitis problem, and some touch-and-go when she was in PICU due to an E-coli infection; this could have been bad with state-of-the-art i.d.. and treatment, but that was it.
- She came home with almost normal energy (5 weeks post-BMT), was taken off gancyclovir early, was on prednisone as briefly as the doctors allow, etc. Our big problem is going to be emotional trauma. Not many parents are lucky enough to be able to say only that!
- As I know you know, but the original poster of the question may not, the biggest potential for problems is Graft vs. Host Disease; the new bone marrow, in essence, rejecting the recipient's body. This is the biggest danger in the non-related donor transplants.
- Our daughter was very lucky in that she got absolutely no GVHD. Her brother, the donor, is genotypically identical, and probably alike in the ways they can't identify, so this could be why.
- There are major differences with how the patient is treated after the transplant. I know of one teen who was totally off all restrictions by day 45 (he had a stem cell transplant). He was also out of the hospital a week after it (he was at a local hotel, doing the stuff out patient). My son had a lot of his restrictions lifted by day 100, but he still is immune-suppressed, and will be to at least one year post transplant. He will also need to get his shots over. It also makes a difference if you have a related donor or a matched unrelated donor (MUD). I can give you some more info on that end of it.
- I'm glad that the radiotherapy is moving along and that it isn't as bad as you feared. I'm sorry though, for the depressing atmosphere you are finding in radiotherapy. We were treated differently at MD Anderson. In fact, many of the adult patients were interested in seeing our son each morning and would often inquire about his progress. He would run down the hall, greet the patients in the waiting area and then run back to the treatment area to watch them set up the equipment. I think it would have been harder if they didn't set up the kids for treatments first thing in the morning. By afternoon things could have backed up and waiting with a hungry NPO (naturally pissed off) 2 yr. old would have been tough. It was also helpful that Garrett got to know the staff and would get a little gift from them each day (this was done for all the pedi-patients).
- As for playrooms and such during BMT, I'm afraid your son will probably be restricted to his room from the time his counts bottom out to count recovery post-engraftment. That usually means an ANC of 1000 or better. Oour son was allowed out to walk the halls the day of transplant, which shocked some of the staff, but that was because he still had counts in his peripheral blood. That day we took a final walk to his favorite window watched the traffic outside, then over to the aquarium for a few minutes. Finally, we ambled back to his unit. For the next 21 Days, he did not leave the BMT room again. He never felt like "not playing" during transplant (except for one or two days) although his was an unusual case. Most of the kids do slow down a bit. To keep things calm, we had to hide his shoes, because he associated them with going outside to the playrooms during previous treatments. To give him something to look forward to, we hid a big bin of new "surprises", which we would dole out to him every day. Each morning the staff would stand outside our room and laugh because he would scream out "Lemme' outa here! You're mean!", only calming down when he was presented with the new toy or videotape. (His complaints were loud enough that he could be heard down the hall to the nurses station. We always thought it to be a good sign).
- After transplant, I'm afraid, the regular playrooms will still be off limits. Probably for the first 100 Days. He will wear a mask anytime he leaves your home and will have to avoid contact with any stranger or person outside of your immediate household. Lots of the BMT kids we saw would also wear latex gloves, although ours refused them. You will adjust to these restrictions and I'm sure and the time will fly by. For playtime during the long daily visits after his release and since MDACC had no BMT playrooms, the staff prepared an unused storeroom (had it disinfected, etc.) and let him play in there. They brought in toys and books for him to play with. He could remove his mask to eat and drink in there, as well, but visitors were not allowed. (I cannot emphasize enough the importance of immediate and thorough hand washing for anyone who enters your home, his room, or anywhere else, no matter how benign the setting!)
- The new Alkek Hospital at MD Anderson now houses the pediatric facilities, including new reverse flow BMT units (with real Mommy-Daddy beds. Yea!). My wife went there and said they also have reverse flow isolation playrooms for the BMT kids. She told me the facilities we first rate and were designed with input from parents and the kids themselves. That's the way pedi-facilities ought to be designed.
- Everything associated with a BMT seems overwhelming and sometimes it is. One of the staff told us that they couldn't possibly prepare anyone properly for the experience. The really good news is that, if you take it one step at a time, it doesn't seem so bad (My wife said it's like giving birth. God helps you forget the bad stuff.)
- A BMT consists of 3 basic phases:
- 1) Preparing the body to receive new marrow--this includes killing off all remaining marrow that is left in the body which is done with high dose chemo and total body radiation. Not only do you want the leukemia gone, which is hopefully done by the chemo, you also need to have the patient's marrow dead so the new marrow can come in and set up shop per se.
- 2) The actual marrow transplant--you wait for this day with baited breath, only to be a little let down because it is basically a blood transfusion. The harvested marrow is introduced to the body through the port, just like a blood transfusion, which is what it looks like. There is a very strange smell, rather like very strong garlic, which is what the marrow is treated with. In our case, our son's marrow was harvested in Mid December, treated with chemo, and frozen. Then, on January 10, it was thawed and re-introduced to his body via his port.--an autologous transplant, meaning "self".
- 3) The third and I think hardest phase of transplant is recovery. From day 0, which is transplant day, until day 100, the patient is watched extremely carefully. It is a VERY hard time, which I don't want to go into right now--but all previous treatment was a piece of cake compared to this, trust me.
OK, I need advice - sorry to all of you who have heard this before - what do I do with a 3 1/2 year old during this BMT process? How do I keep him and us from going crazy? Since I suspect he will not sleep through it, what do I do? Also - what can I give him that he will eat, so should i just expect to go on TPN?
- Our daughter had runs of a week or more on TPN, no big whoop. Your son will eat when he feels like it. Don't worry about that.
- She spent so much time in her room during treatment that I didn't think post-BMT was particularly difficult. Bring videos, books, VERY CLEAN friends, anything silly and fun. Try to be fun yourself. Rotate out and let someone else hang with him if you're really crabby.
- Hey, if you can get someone to cover my work projects for a week or two I'll fly to CT for a performance of my traveling show: "Making BMTs so much fun all the kids will want one!"
- Nurses like to visit with BMT kids. Here's something I didn't realize until afterwards: at Rainbow, killing time hanging out with the kids is IN THE JOB DESCRIPTION for the aides. No, really, the aides actually have instructions to entertain the CKs if they don't have anything else pressing.
- We had our son's transplant done at a local hospital, with no playroom. Well, actually, there was a room that had some games and tons of videos, but his counts were too low to leave the room anyways for a long time.
- First of all, our son is a lot older. You need toys. Things that are easy to clean, because if they fall on the floor, then they have to be cleaned in an alcohol bath. He likes legos, and especially action figures. Books and tapes were great. I brought a tape recorder with us. Find out if they have one. Also, ask if they have a video phone to keep in contact with other friends and family.
- As for food and TPN, he was hungry. They kept telling him he wasn't, but he really was. So many times he would insist on eating something, only to have it come back up again. If they let, gum is good, cuz it gives the impression of food w/o actually eating. He also like string things, junk, stuff like that. I really didn't care.
- I was just thinking that puzzles would probably be good for his age, as well as matchbox cars. Our son got a set of cars that has tracks that attach to the side. He also like action figures. You will probably want magazines for yourself. I found that I couldn't concentrate, so short articles were better than books.