Need Advice on Children's Transplant

[MaryAlisha]

I'm not going to be able to stay in the hospital with my sister all the time. It will be mostly on weekends when I can go visit her.

Is it true that they have to stay in a 100mile radius for the first 100 days after release? I can't do this either we are 200 miles away from our hospital. I have two little kids to take care of and we don't have any other family members here that can help.

I'm starting think that maybe we need to try the 2nd ATG therapy since it's only a 10 day stay. Then do the BMT if that doesn't work. I wonder how long they would space it?

What do ya'll think? I'm quite confused now and have so many questions for when I see the dr on the 6th of June.

Has anyone had a child or teen that had the BMT from an unrelated donor or cord blood? I'm still not sure which one they are using. They have 3potential people and 1 cord blood.

Update: I found out they do have to stay by the hospital but I can't stay w/ her. I'm not sure what I'll do. I guess I'll try to hire someone when I'm not there.

Any Advice????

[evansmom]

Our 10 year old son Evan did not respond to ATG/cyclo and it's been 6 months now. We are headed to transplant in June.

Studies indicate that an AA child should go to transplant if, after 6 months, there has been no response to ATG/cyclo and if there is a suitable donor available. Doing a second round of ATG (after the first round failed) only prolongs the length of time from diagnosis and thus increases the likelihood of a serious infection as well as increasing the number of transfusions received, which increases the risk of transplant.

It sounds like your circumstances are going to be very challenging but my advice is to find a way to make it happen. If the donor is a great match and is available, find a way and just do it. Just my advice though.

Best wishes,

[Neil Cuadra]

I think that you should do what's best medically for your sister's treatment. I'd worry about the logistics of BMT recovery when the time comes, and not make it a deciding factor now.

The guidelines about staying near the hospital for 100 days are not hard and fast restrictions, as far as I know. It's a good idea to be able to get help quickly during recovery, especially at first and to a lesser and lesser extent as time goes on. Once the initial recovery period is over, one way to handle the distance is to make arrangements ahead of time to have a hematologist close to you become familiar with your sister's case. It would have to be someone willing to work closely with your sister's transplant center doctors by phone/fax/email, ideally someone recommended by the transplant center. That way, you'd have that doctor available for time-critical care, but you could still make the longer trip for more routine followup care.

These logistical issues are something worth asking the treatment center staff about (not the doctors). They've probably helped people with problems about being near the hospital, and can make suggestions.

[Jenny L]

From our experiences with Emily's BMT last November, I totally agree that the logistics of BMT recovery should not be deciding factor now. You can talk with the social worker in the hospital about your situation. Emily stayed in the hospital for about 45 days after her BMT. Even we live only 7 miles from the hospital, the doctor and BMT social worker convinced us to let Emily stay at Ronald McDonald House's immune protection's wing with 6 rooms just for BMT kids until 100 days after her BMT. That is really helpful for her recovery.

[trishgen2001]

I've read and Jessica's Dr. has confirmed that just because the first round of ATG/Cyclosporine doesn't work, that it don't mean the 2nd round wouldn't. Jessica's Dr. thinks using an unrelated donor would be more of a risk than taking the time for another round of ATG. I wish we would have had a donor right away instead of the ATG, but I trust her Dr.'s advice. (We also had a second opinion done at UVA and they both agree)

[evansmom]

Hi Trish,

I trust Jessica's specialist is not suggesting another round of ATG yet. If I'm not mistaken, it's only been about a month. Most responses take 3-6 months to happen. There are studies that have taken numerous cases of pediatric AA treatment courses and their outcomes and this is where the recommendation to go to transplant comes from, if there is a suitable donor:

Prospective multicenter trial comparing repeated immunosuppressive therapy with stem-cell transplantation from an alternative donor as second-line treatment for children with severe and very severe aplastic anemia.

Kosaka, Yoshiyuki. Yagasaki, Hiroshi. Sano, Kimihiko. Kobayashi, Ryoji. Ayukawa, Hiroshi. Kaneko, Takashi. Yabe, Hiromasa. Tsuchida, Masahiro. Mugishima, Hideo. Ohara, Akira. Morimoto, Akira. Otsuka, Yo****oshi. Ohga, Shouichi. Bessho, Fumio. Nakahata, Tatsutoshi. Tsukimoto, Ichiro. Kojima, Seiji. Japan Childhood Aplastic Anemia Study Group.


Blood. 111(3):1054-9, 2008 Feb 1


We conducted a prospective multicenter study to compare the efficacy of repeated immunosuppressive therapy (IST) with stem-cell transplantation (SCT) from an alternative donor in children with acquired aplastic anemia (AA) who failed to respond to an initial course of IST.

Patients with severe (n = 86) and very severe disease (n = 119) received initial IST consisting of antithymocyte globulin (ATG) and cyclosporine. Sixty patients failed to respond to IST after 6 months from the initial IST and were eligible for second-line treatment.

Among them, 21 patients lacking suitable donors received a second course of IST. Three patients developed an anaphylactoid reaction to ATG and could not complete the second IST.

A trilineage response was seen in only 2 of 18 (11%) evaluable patients after 6 months.

Thirty-one patients received SCT from an alternative donor.

At 5 years from the initiation of second-line therapy, the estimated failure-free survival (FFS), defined as survival with response, was 83.9% (+/- 16.1%, SD) in the SCT group compared with 9.5% (+/- 9.0%) in the IST group (P = .001).

These results suggest that SCT from an alternative donor offers a better chance of FFS than a second IST in patients not responding to an initial IST.

Although AA is unlike leukemias with their very specific tried and true protocols depending on the type, there are still basic protocols that have been developed based on research and studies to treat AA and there are differences on the routes best taken depending on the age of the aplastic patient. Please make sure the doctor treating Jessica has familiarized himself with the pediatric treatment course for best possible outcome.

Arm yourself with as much information as possible, you have involuntarily enrolled in a Bone Marrow 101 rapid study course.

Praying for Jessica's return of good health ASAP,

[MaryAlisha]

Nicole,
Your right b/c we are steadily approaching the 1st year of having SAA and I know we it increases odds of survival and it working by getting the BMT in the 1st year. Thanks for all your information.

Neil,
There is a hematologist that orders our blood here in our town and I met him in the hospital. I pray that this arrangement can be made. I was going to ask her doctor that when we go for the June checkup.

Jenny,
I hope all is well with Emily. I’m not familiar with her story. Thanks for the advice.

Trish,
I guess in the end I’ll go with what her doctor says since she is an expert. They specialize in pediatric hematology and her transplant dr is supposed to be the best in the state. I hope so.