Welcome to our CaringBridge website we created to keep friends and family updated about Alexandra. Get started by reading the introduction to Alexandra's website, My Story, which also include updates from June and July. Visit often to read the latest journal entries, check out photos, and write Alexandra a note in our guestbook.
Alexandra was diagnosed with leukemia on November 11, 2010 and immediately started chemotherapy. She will undergo a more intensive treatment regimen through October of 2011 since the last little bit of leukemia cells in her bone marrow have been stubborn.
Throughout all of her treatments, surgeries, testing, and hospitalizations, Alexandra has been a trooper! She is quite popular with the clinic and hospital staff (she certainly got to know way too many medical professionals during her 13 day stay in January - what was it, 11 or so different specialties?) She is such a special kid and we are so proud of her!
We would also like to take this opportunity to thank all of you for your incredible thoughtfulness and generosity. The outpouring of support, kind words, and gifts has been beyond incredible, and has warmed the hearts of these jaded New Yorkers (jaded being Christopher and I, not Alexandra, of course). ALL of you have played a role in easing the burden of our journey, and have also brought great joy to Alexandra!
So, to our family, old friends, coworkers, and new friends in our new hometown of Franklin and beyond, we send you many thanks and much love!
UPDATE - JUNE 2011:
Well, we will now be following a different path to Alexandra's cure.
Unfortunately (and much to our surprise), the bone marrow aspiration performed on May 19th showed Alexandra's leukemia count has progressed and she has relapsed. She must now undergo a bone marrow transplant.
We do not yet know when she will undergo the transplant, but it is going to be a very long and arduous journey to the transplant and beyond. She will still have to receive intensive chemotherapy to get the leukemia counts back down to 0, and then will receive additional weeks of high level chemotherapy to keep the leukemia at bay. Then there is a one-month "preparation" period wherein she will have to undergo testing, visit the dentist, etc.
The transplant will be done at Children's Hospital of Boston since Mass General does not perform pediatric bone marrow transplants. Still, our relationship with Mass General will not end since Alexandra will receive chemotherapy there pre-transplant and then we will return to Mass General for the years of follow up examinations and treatments.
Initial searches through the National Bone Marrow Registry show 9 potential matches. Further testing has to be done to ensure the best match possible.
Since many of you have asked about being typed as a possible donor for Alexandra, we discussed a bone marrow drive during our initial consultation with Children's. We learned it takes 3 to 4 months for "samples" obtained through a bone marrow drive to be typed and entered in the national registry. Conversely, if you wish to be typed for Alexandra, you can visit the Dana-Farber Cancer Institute in Boston directly to be typed, but at your own expense. The typing will be done within 1 to 2 weeks. You will also be entered in the National Registry.
UPDATE - JULY 2011:
It has been a crazy July. Alexandra spent 12 days in the hospital since her ANC went down to 0 after 2 four-day rounds of chemotherapy in the clinic and at home. She was released on July 19th, 2 days before her birthday, and was readmitted on July 22nd due to a high fever. Fortunately, it was a quick thing, she was discharged the following day and we were able to reschedule her birthday bash for July 24th.
The great news is that a full match has been found for the bone marrow transplant (a 22 year old male), so Alexandra will be admitted to Children's on August 5th. She will undergo chemotherapy and full body radiation until August 11th, and the transplant will happen on August 12th. The length of her hospital stay is unknown at this point, but it will not be less than 45 days.
Keep the Guestbook entries coming. Even though she may not always make her own entries, Alexandra does read and enjoy your messages!