The Leukemia & Lymphoma Society Community: Message List

Re: It's been a while

communityreply@lls.org — Mon, 30 Jul 2012 21:14:45 GMT

HI Jennifer,

My name is Robyn, my daughter Maddie relasped 4 months off treatment also in her marrow, CNS and by the time we did the biopsy, her peripheral blood as well. She had her transplant 7/20/2011, at the age of 6, almost exactly 3 years from her original dx date. I remember being so terrified of the transplant process that I couldn't sign the consent forms. They do a really good job of telling you what can go wrong, but for everything that can go wrong, there is the stuff that goes right. Maddie's transplant was pretty textbook, she had a matched unrelated donor transplant, with TBI, cranial boost, 4 days of chemo 1 day of rest and then transplant. the day of transplant, she was premedicated with benedryl...after that wore off and she woke up, her transplant was done, and we had a WII just dance party in her room, with her dancing for about 2 hours, totally not what I had expected. About 2 days later, her skin was blistered and bleeding from radiation, but that is NOT normal, her transplant team hadn't seen anyone's skin react quite so badly. She got really, really bad mucositis, worse than chemo alone, was afraid to talk for about 3 weeks because of the pain, she had pretty bad gi issues, coming from both ends. The worst lasted about 2.5 weeks, and then gradually she got better, she never experienced any bacterial infections, had a fungal infection during the relapse induction that was in her liver, spleen, brain, kidneys, because of the fungal, transplant was delayed...turned out to be the best thing ever because Maddie was incredibly healthy going into transplant. We had her on Megase for 2 months and she went in like the fatted calf, but really sailed thru the process with few side effects. She was release on day 44, we were at the Ronald McDonald house for 2 days, went back inpatient for 3 days and then out again, haven't been inpatient since. She was on cyclosporine for GVHD prophylaxis for several months, weaned off of that and is now just on the anitbiotic to prevent pneumonia. Maddie did and does understand a lot of what has happended, but the only part of the transplant process that was really emotionally hard for her was the feeding tube. she hated it, and only had it for about 3 weeks. She convinced her DR. to keep it out after she threw it up the 15th time or so, and was just determined to eat enought calories to satisfy the BMT team, and did it (she's very goal oriented!) I won't lie and say it was easy, but it really wasn't as bad as my expectations (I kept them sufficiently low, really didn't expect Maddie to survive) Today, Maddie is an extremely healthy little girl, running ,swimming, playing soccer, skateboarding, ect. Last year, had you told me that this summer things would feel normal, I wouldn't have believed it, but it really does. We've even made her appointments to be reimmunized...she hasn't seen her pediatrician in 4 years. You can all do this, and come out the other side. If you have any questions, please ask, I'll try to answer as quickly and honestly as possible. What transplant center are you going to?

Blessings,

Robyn

Re: Contaminations are causing disease

communityreply@lls.org — Fri, 02 Dec 2011 18:48:02 GMT

BUNK...

Re: cancel my last post its a relapse.....

communityreply@lls.org — Wed, 30 Nov 2011 02:36:26 GMT

Hi NAna,

I am devastated to read this. The relapse protocol is tough, but having been off treatment for a year does give Jakob a bit of an edge, his body has had time to heal. Transplant was a terrifying word for us, but Maddie is now 4.5 months post transplant and doing quite well. In fact, we saw her primary BMT dr. tonite at a hospital function and she is giving a lecture tomorrow that features Maddie. We too followed the same relapse protocol as Leanne and had a matched unrelated donor transplant on 7/20/2011. There is a wealth of information on the ACOR relapsed ALL site, although, in the beginning of the relapse protocol, I read nothing, was too scared. Then, when Maddie was being admitted to the BMT unit, right before we walked through the double doors to the isolation rooms, a patient had a sign on her door that said " Transplant day +101" it was the best thing I'd seen...it gave us confirmation that lots of kids do well with transplants. We saw that patient tonite, she has started her college classes and is working part time. I know you are terrified, angry, disbelieving, and shocked, but Jakob CAN do this. If you want to talk, email me.

Blessings,

Robyn

Re: Moving over from my child.....

communityreply@lls.org — Wed, 30 Nov 2011 02:47:16 GMT

Hi Mamawarrior,

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?

Thanks

Robyn

Re: cancel my last post its a relapse.....

communityreply@lls.org — Wed, 30 Nov 2011 02:39:08 GMT

Hi Karen,

Have been thinking about you guys a lot, hope all is going as well as can be considered. You are all in our prayers.

Hugs,

Robyn

Re: Follow-Up LP tomorrow

communityreply@lls.org — Mon, 21 Nov 2011 22:38:50 GMT

Darn Darn Darn (yes I want to use stronger language, but trying to stop) I am so so sorry that you got this news, but now the decision is made and you can move on to worrying about other stuff. Oddly enough, after the shunt starts stabilizing her pressures, she might feel better than she has in a LONG time, those are pretty high pressures she has experienced, and honestly, Maddie's never got that high, but the transplant team would not move forward without it because of the cranial radiation, TBI and the preparative chemo right before transplant, and they wanted as much time to give her body to heal from that surgery as possible. Now, 7 months after Shunty (yes, it has a nick name) her hair is growing back and unless you know its there, you cant see it...Maddie a little upset because it looks a little like Mr. Peanut when she was bald, and we used to draw him on her head...it was an attention getter and Maddie is all about that! Also, I know you are terrified, because you cant imagine going thru worse than you have already been through. Thats how we felt, we couldn't imagine Maddie pulling through something like a BMT, that by all accounts was really really hard, and yet, because of her brutal induction, transplant was not as hard for her. My prayer for you is that Leanne's transplant experience will be similar, which is not to say it was easy, but it really was less stressful than the 2 months we spent in ICU...she never, ever got that sick with the transplant or the relapse protocol. Also, because of the pressures affecting maddie's eyes, they thought she might have optical involvement, and the MRI showed bright spots in her brain that the radiaologist read as leukemia infiltration, but then 4 weeks later, after it was known that she had a systemic fungal infection, the first MRI was reread, and they determined the spots to be fungal, not leukemic. I guess my point is that even what they know now can change later, especially as the shunt helps with her pressures. Shunt surgery was also a really hard step for us, i was really depressed about it, but now it doesn't matter, its not something we think about, and it doesn't bother maddie in the least, and unless you know how to perform a neuro exam, you would never know she had it. Go, cry in the shower, scream in the parking lot, and know that when her body starts to heal from surgery, she will feel better, and you will too. It sounds like you have a good team of doctors that are being very cautious. You will all pull through this, somehow, even though today, you can't imagine how. Trust me, it will happen and there are happier days ahead. Hopefully, Leanne will be home for this Christmas, and even if not, the reason we go thru this crap is so that she will be home for the next 60 or so Christmas'. Its the prize at the end of the stick ,and the thought that keeps us all going. Love, Prayers and Hugs to all of you...and most of all TAKE CARE OF YOURSELF, even if you are to distraught to eat, remember to drink water, it will at least keep you going!!!!!!!

Robyn

PS...One of our ICU nurses was also a former BMT patient, relasped ALL, first DX at 11, relapse at 14, so she is closer in age to Leanne than Maddie...while Maddie was in for transplant, Meagan celebrated her 10th transplant anniversary. I have her email, I'm sure she would talk to Leanne if Leanne wanted to...it might be nice for Leanne to get another teenage perspective, and also there is a really wonderful young lady in our BMT clinic. Ashley, who is 18, she has a caringbridge site..www.caringbridge.org/visit/ashleyreimer you could message her, she is 6 or 7 months post transplant...it might help leanne to feel less alone if she has some peers to talk to.

Re: Follow-Up LP tomorrow

communityreply@lls.org — Mon, 21 Nov 2011 00:19:15 GMT

Sorry Mamawarrior, did not mean to offend or to imply that BMT was the only choice, was only trying to convey that we had to make a crappy choice, and the decisions that went into making that choice.

We did not have a unanimous decision, if you had asked 10 onc's how to proceed after MAddie's relapse, we would have gotten a split decision, 50% chemo, and 50% BMT, it was up to my husband and I to decide. It was a hard decison, so hard in fact that I was unable to sign the release, my husband had to. We also had a pact that no matter what, we would not question our decision. But not going thru another 2 years of chemo is a big bonus for us, especially since Maddie had a relativley easy time with her BMT, but in no way minimized the hardships she endured and will continue to endure. Unfortunately for all of us, whether we decide 2 years of chemo or a BMT, it turns cancer from an acute illness into a chronic illness, and very few of our kids will go through this without side effects of treatment. Maddie for example has neuro problems because of the CNS and fungal disease and the shunt, her lung capacity is forever diminished, only time will tell how much, and she now had kidney disease, also only time will tell if it will reverse when she is off all meds. This was her relatively easy BMT. It was hard, as Margaret has said, the 2 years of chemo are darn hard too, front line treatment is hard, relapse is harder. Its our reality, and it totally sucks. Once again, did not mean to offend, just trying to convey our experience.

Yes Margaret, Dr. Anne and Melissa are our primary, and when we were deciding whether to go the chemo route or BMT, Joey was one of the reasons we considered chemo, but because Maddie's relapse was full, CNS, marrow and blood, we decided to go to BMT. I do know of another TCell child who because of Joey (this child treated at Fairfax Inova) is doing the same relapse chemo as Joey...you are trailblazers! I'll bring the wine!!!! Miss seeing you guys at clinic, we have just been switched to Mondays, but now that the BMT clinic is opening, will probably be a few more months before we transition back to Oncology. Blessings! Robyn

Re: Follow-Up LP tomorrow

communityreply@lls.org — Sun, 20 Nov 2011 02:43:54 GMT

Thank you Nana, for thinking of us, Maddie is great, we are truly blessed!

Re: Follow-Up LP tomorrow

communityreply@lls.org — Sun, 20 Nov 2011 02:41:36 GMT

Yes Karen, that was her protocol, her primary strongly suggested BMT, but if we had pushed, she would have gone straight chemo, its a crappy choice to have to make, and I too was in a fog for weeks, the first block of chemo got Maddie back into remission and cleared her CNS, I remember Doxorubicin, methotrexate, another 28 day steroid pulse, triple IT's and another I don't remember. The 2nd block was high dose ARA-C, she handled the chemo OK, but was recovering from the shunt surgery, so it made it tougher, and the third block was 5 days outpatient chemo and was supposed to end with high dose methotrexate, but because of timing with her donor (our BMT doc was really excited about Maddie's donor) the team opted to forgo the high dose methotrexate so that the transplant could coincide with the donor's availablitly. It was a rough time, no doubt, I personally started to take antidepressants as soon as her relapse was confirmed and it helped me at least function. I also offered to quit my job, but was really fortunate that they held it for me...Maddie was in the hospital for most of Feb thru the end of August, with about 5 weeks in breaks, but of course it was complicated by the fungal. I went back to work at the end of September. We are fortunate that Maddie has only had minor GVHD of the skin that has been treated with topical creams. Maddie is treated at Childrens Natl Medical Center in Wash DC, they are not a huge transplant center, but her primary BMT dr. also practices at NIH and is an expert in infectious disease, one of our other BMT attendings is a world renowned GVHD expert, if you are interested in a consult, let me know, I will get you their information. Also, I have heard great things about a Dr. K at Duke. There is a lot of information on the ACOR relapsed ALL site, I read that thing from beginning to end! Lots of happy endings. Yes, relapse sucks, but its not the end of the road. Leanne has already put up with too much crap from this disease, and unfortunately, she will have to put up with more....but should you decide BMT, at least when its done, its done. One more thing that I think is notable, when Maddie was in for her transplant, there were 5 other kids getting transplants at the same time...they are all doing well, some were relapsed ALL, some AML, and one MDS (2nd transplant) they have all had some setbacks, the 2nd transplant pt is dealing with some GVHD of the gut, but because it was his 2nd transplant, they wanted him to have more GVHD than the first. I am writing you a book, I know, but its a really really tough decision, and one that no matter which you choose, you will question whether you made the right decision, each choice has its own late effects, its own side effects, neither is a great choice. It sucks, but you can do this, because, after all, we have no choice...so so sorry that Leanne and your family have to go through this, but you will come out the other side okay. Hugs, Robyn

Re: Follow-Up LP tomorrow

communityreply@lls.org — Thu, 17 Nov 2011 23:14:41 GMT

Hi Karen

Robyn, Maddie's mom here, I rarely visit this site, but felt compelled today, and now understand why. Maddie (Pre B all, dx 7/08, ot 10/1/10) relasped in Feb last year, 4 months after going off treatment. In hindsight, her relapse started earlier, probably late December, but because she was off treatment and no LP's it wasn't caught until it moved to her marrow and blood stream. She was CNS negative at her original DX...like Leanne, Maddie had MANY problems during induction the first DX and everyone was shocked because she had such a hard time in the beginning. Because of the early relapse, we decided to have a BMT, had to get her back into remission. Chemo was 3 blocks, the first block was tough, but she also had a systemic fungal infection (yes, I know you know ALL about those) and ended up with a VP shunt, but then sailed thru blocks 2 and 3, and honestly has pretty much sailed through transplant. She is close to day 120 and all is good. We were terrified of the transplant process, but felt it was her best chance, and weren't willing to go thru 2.5 years of more chemo, just to relapse again and have to go to transplant anyway...I know its tough and you are terrified, but they are making great strides in supporting kiddo's thru the transplant process, and for us, it wasn't any harder or worse than anything we had been through, in fact, it was MUCH easier than her first induction when we spent 60 days in ICU, 80 days in the hospital. Unfortunately, you already know how to do hospital life well, but if you should go to transplant, when its done, you are done...no more chemo, no more radiation, its not too bad. Please, if you have any questions, ask, I will log in more often. Just remember that relapse is NOT the worst that can happen, and if you do transplant, her protocol will end much sooner than had she gone straight chemo through LTM..blessings,, Robyn