Alex's   Place

Update on Alex's Fight Against Leukemia

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Sunday December 26, 1999

Hi Everyone,

Merry Christmas!Merry Christmas! As always I apologize for the long wait between updates. We have been extremely busy over the last three weeks. Andrea and I went to Asheville, North Carolina last week with her parents. We took a candlelight tour of the Biltmore Mansion and stayed overnight at a B&B. We wanted to take Alex with us, but she still can't be more than 30 minutes from the hospital yet. Michelle (one of Alex's primary care nurses) stayed with Alex overnight at our apartment. It was the furthest (4 hours) Andrea has ever been away from Alex, but it was nice to relax a little bit. Plus Alex had a lot of fun with Michelle. When Michelle walked through the door Alex squealed and ran to her. This after not seeing her for a month. She loves her 'chelle!

Alex continues to do great. Her platelets were 241,000 today which is well within normal range! Most of her other counts are near or within normal range and the doctors continue to be amazed by her progress. If she didn't have a bald head and bushy eyebrows, you would never guess that she's only 67 days post-transplant. Barring any unforeseen complications we will be coming home around January 29th. We're not looking forward to the plane ride (ever try keeping a mask on a two year old for 5 hours!), but it will be nice to get home.

Pluto! Thanks Uncle Jimmy & Aunt Kris!We are having a wonderful Christmas thanks to the fundraising efforts of Paulette Clements and her family. They raised a substantial amount of money to help us pay our ever increasing bills. Paulette, her husband Pat and their daughters Coli & Stephanie decided to forgo Christmas presents to each other and instead, give that money to us. They also contacted all of their friends and family to raise even more money. We are forever indebted to them for their generosity and hard work. They are an amazing family!

In addition our church Northgate Christian Church raised over $2000 and we've received checks from friends and family all over the country. We also have received tons of emotional and financial support from both our parents (Leo & Barbara Martini and Robert & Sandra Maimbourg) which has been greatly appreciated. We want to thank everyone for their generosity and for thinking of us this Christmas. Because of you we were able to enjoy Christmas without having to worry about the mounting bills. It's nice to know we'll have a house to go home to! Now if I could just get our mortgage company to forget about the three months of deferred mortgage payments I have to start paying on January 1st!

We also want to thank the National Children's Cancer Society for their generosity. In total the NCCS has provided us with over $7000 of assistance, the bulk of which paid the rent of our furnished apartment here in Durham. (North Carolina is almost as expensive as San Francisco!) If you plan on donating to one charity this Christmas we would recommend NCCS. They do so much for patient's families from paying rent to providing meal money. Visit the NCCS website for information on how to donate.

Speaking of bills. This week I received a bill from Duke Medical Center for $197,500! The bill was for inpatient services and should be covered by insurance, but it was still funny to see at the bottom of the bill - "If you wish to pay by credit card". Anyone have an American Express Platinum card with no credit limit? We can get you a ton of air miles and I'm sure Blue Cross will reimburse you! <grin>

Lastly I've posted information on all of the public cord blood banks in the country on Alex's Links page. We owe Alex's life to her cord blood donor, who donated right here in North Carolina. Alex was lucky enough to have four 5 (out of six) point matches waiting for her when she relapsed, so the doctors were able to choose the largest amount for transplant. This is crucial as they are finding that the two most important factors for a successful transplant are compatibility (5 or 6 point matches) and the size of the cord blood donation. Many of the other children on the floor with us were receiving 4 point and even 3 point matches with limited success.

If you are pregnant or planning a pregnancy please ask your doctor about donating your cord blood to a public cord blood bank. If your doctor doesn't know anything about it, contact one of the public cord blood banks on the Links page. The greater the number of cord blood donations, the better the chance that a child will get a 5 or 6 point match. The public blood banks are located in LA, NYC, St. Louis, Seattle, Raleigh/Durham, Washington DC, Cleveland, & Shewsbury MA. If you live in these areas it should be rather easy to donate. If you live outside of those areas it will probably cost to transport the cord blood to a public cord blood bank, but your insurance may cover it. If your insurance doesn't cover it then start complaining. We need to make cord blood donation a routine part of any birth. Imagine the number of children that could be saved if this happens!

Unfortunately there is no public cord blood Bank in San Francisco at this time. It's very distressing to us to hear from friends in San Francisco who can't receive any information on cord blood donations from their doctors or hospitals. When we get back home, Andrea and I plan to start lobbying for a public cord blood bank to be opened there.

Thanks again to everyone for your love, prayers, financial support, cards, letters, toys & generosity. We don't know where we would be without all of you (probably homeless!). Alex, Andrea & I wish you a Merry Christmas and a Happy (Cancer Free!) New Year!


Todd, Andrea, & Alex Martini


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