Mud Day +7

[brukru]

Mud Day +7

Been a long time since I posted, my daughter Courtney had a relapse of her SAA, and after much deliberation she went to transplant with a 10 out of 10 match unrelated donor. I was a hard decisions since Courtney had responded to ATG back in 98, and that her immune (anc) system was allways in the 1000 to 1300. This made the decision for transplant hard, I got second and even third opinions, the oncology guys were all for transfusion and wait and see if she is a late responder (retried atg in June of 07) while the transplant guys were all for getting her transplant started while she was still relatively healthy, no infections, etc... I choose to have her admitted and the mud bmt started, her anc going into the hospital that day finally dipped below 500, the immunes system was faltering as well now, so we went to transplant. It's now day +7 with the new marrow and she is doing pretty well except to headaches, sore throat, and very high blood pressure. Not sure if I'm posting the bmt part of her treatment to the right part of this list or should I be posting somewhere else. I have a whole slew of things I can post about what Court has been through, just not sure if this the place for it or should I be at a BMT list posting.

anyone interested in hearing more can contact me at brukru@frontierne,net

[MaryAlisha]

My sister is due to get a MUD transplant also this summer. How old is your daughter? I would love to hear all about your situation. Did she lose her hair to the chemo? Is she able to be up and walk around freely in her room? How tired is she? I have tons of questions.

[Ruth Cuadra]

Hi, Bruku.

I can appreciate how hard it must have been to decide betweent transplant and "watch and wait". It must have helped to know that Courtney had a perfectly matched donor.

The symptoms you mentioned--headaches, sore throat, high blood pressure--are all expected side effects. In the early days after transplant, I was on dilaudid (morphine substitute) for the mucositis (sore throat and mouth). Be sure your daughter gets enough meds to control that pain. The headaches and blood pressure issues are usually related to cyclosporine or other immunosuppressants that are being given in large doses. I'm sure the doctors are watching her carefully, but since you know her best, you can help interpret how she is feeling if she is unable to do so for herself for a while.

Thanks for offering to share Courtney's experience here. It helps others who are considering transplants to know the inside scoop.

Regards,
Ruth Cuadra

[brukru]

Was hoping to post more often but things have been hectic. The good news is that Courtneys new marrow starting engraftmen on day +10, about a week earlier than doctors here had told us to expect. As of today her wbc were 3.7 and her anc 3.3, still platelet and rbc transfusion dependant. She is however just entering the realm of gvhd. She has two different types of rashes covering her body, her legs are covered with small mole like red dots, and her ears, neck and torso are covered with a red, splotchy rash. Here ears are red and swelled up, with the ear piercing holes in each ear swollen and almost blister like. They started her on a topical steroid cream called triamcinolone, and a drug called enbrel. A clinical trial here at U of M uses these to drugs to treat type 1 skin only gvhd, in hopes of avoiding oral steroids and their potential side effects. So that is where were at for right now, my girls fighting with all her might.

Dan

[sandra]

Hi Dan,

Watch carefully her response to Enbrel. There is another girl who had a transplant, Kayleigh, and her ANC took a big dive following Enbrel administration. You should definetely read her caringbridge site, might be very informative and a source of hope and comfort for Courtney. They are a very nice family, the girls might even like to correspond.

http://www.caringbridge.org/visit/kayleighinaz

All the best to Courtney and your family,
Sandra

[skoopman]

Dan,

I just wanted to tell you that my daughter Michelle had skin GvH also (she also had gut GvH) and responded well to the steroid cream. We did use two different types. I still have to use it very occasionally on her but nobody else would ever know she had a problem. I hope Courtney responds as well.

Suzanne