Nora 19

Hi everyone,

We had another big day last week at Sloan. Nora began her tests to be sure she is healthy enough for her transplant. She still has to do EKGs, lung-function and a stress-test along with lots of other blood tests. We should be going in for an overnight in the next few weeks sometime to get all of these done. She should go into the hospital on either May 7th or May 14th to begin treatment. This is all still up in the air as we need to make sure she and the donor are free of colds/bacteria and he gets time off of work to do the harvest.

We found out her donor comes from the International Registry. They match 10/10 perfect HLA typing!!! What we know about him is… we know he is a male. We know his blood type is A-. We know he is CMV+. We can meet him (if he agrees) in two years. Some cool things that will happen after the transplant… Her blood type will change and she will no longer be O+ which is wild! Nora will absorb his DNA. They will essentially be genetic twins!
We signed the paperwork and Nora is officially entered into the NIH/MSKCC Aplastic Anemia Clinical Trial. Official title: “Fludarabine-Based Conditioning for Allogenic Marrow Transplantation from HLA Compatible Unrelated Donors in Severe Aplastic Anemia.”

  • She needs a lumen catheter in her chest for the medicine
  • Bone marrow aspiration just prior to receiving her chemo.
  • Fludarabine (Chemo) for Mon., Tues., Wed., Thurs.
  • ATG (Immunosupressive) Tues., Wed., Thurs.
  • Cyclophosphamide (Chemo) Tues., and/or Wed. (depending on the trial)
  • Low dose Total Body Radiation Fri.
  • Bone Marrow Transplant Saturday

For much more detailed information check out:

http://www.mskcc.org/pediatrics/pediatric-clinical-trial/06-056
or
http://ClinicalTrials.gov/ct2/show/NCT00474747?term=aplastic+anemia%2C+allogeneic&recr=Open&gndr=Female&age=0&phase=1&rank=2

We have been going through the side-effects and the long term effects of this transplant… and it is really scary… but the alternative is just unacceptable. She will go in for 30-60 days inpatient (stays in the hospital), 40-60 days outpatient at the Ronald McDonald House. Then around 100 days she will be able to go home and travel in bi-weekly, then weekly for a year. She’ll have to get all new immunizations. After 2 years she will be considered “cured” and she will be in her “new normal”. She will be monitored the rest of her life to check for cancers, growth problems, hormone issues, and anything else that pops up since she is only 1 of 81 people in the trial.

We have been getting lots of amazing people looking to help—which we desperately need—but with everything going on, the idea of project coordinating volunteers is sort of overwhelming me… so the National Bone Marrow registry turned us onto LotsaHelpingHands.com it looks really useful for anyone who wants to help. Check out the blurb below and sign on if you are interested. My sister Rachael will be the coordinator.

Lotsa Helping Hands
is a private, web-based care-giving coordination service that allows family, friends, neighbors, and colleagues to create a community to assist a family caregiver with the daily tasks that become a challenge during times of medical crisis to prevent caregiver exhaustion. Designed as a service for the National Marrow Donor Program.
Each community includes an intuitive group calendar for scheduling tasks such as meals delivery and rides, a platform for securely sharing vital medical, financial, and legal information with designated family members, and customizable sections for posting photos, well wishes, blogs, journals, and messages.

If you have asked “what can I do to help?” the answer is sign up and you will be approved to start helping.

https://marrow.lotsahelpinghands.com/c/656087/

Please fill out the right-hand side of the form which is a “Request to Join the Community”.  Instructions will be sent for setting a password and signing-in.

So that is where we stand. We are getting excited and nervous all at the same time. Keep praying for us. We really appreciate everything everyone has been doing for us and we really truly love you all!

Love
The Getchell’s
Shawn, Maureen, Arik and Nora

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