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Update on Alex's Fight Against Leukemia

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Quick Update: Friday, November 8, 2002

Hi Everyone,

As you know we had planned to treat Alex with CEP-701 (FLT3 inhibitor), but despite the efforts of Dr. Don Small at Johns Hopkins, Cephalon has turned down our request for a compassionate exemption. Alex will not receive CEP-701 because Cephalon is uncomfortable with giving the drug to a 4 1/2 year old. Cephalon has also postponed their pediatric CEP-701 trials indefinitely.

Our second choice was to enroll Alex in the pediatric R115777 studies, but we found out today that the study has been suspended by the NIH because they couldn't find viable candidates. The irony is that Alex is definitely a viable candidate and she can't get into the study. So far Alex is doing well, although her platelets have dropped to 103 and her peripheral blast count is up to 36%.

As you can imagine we're very disheartened at the moment. We are now left with only one option. Use Mylotarg a fourth time, either alone or in concert with high dose ARAC (conventional chemo). If we use Mylotarg by itself, we could then follow that up with maintenance doses of Mylotarg. Either way we're looking at long term neutropenia (no immune system) and an increased risk of infection. We could succeed in keeping the Leukemia suppressed and still end up losing her to an infection.

If any of you know a way to get R115777 or FLT3 inhibitors outside of a study, please email me ASAP. We're willing to go overseas to get access to any of these drugs. Our insurance company will approve a second transplant after the six month waiting period is over in January. We just need to find a way to keep her alive until then.

Thanks again to everyone for all your support. Take care.

-- Todd

Quick Update: Thursday, November 7, 2002

Hi Everyone,

Glenda the Good Witch of the NorthI want to thank all of you who are trying to find us a flight to Baltimore. I really appreciate all of your efforts. For those of you who didn't receive my earlier message, we need to fly from Seattle to Baltimore early next week and a commercial flight is not a safe option.

A number of you have asked for the name of the FLT3 inhibitor drug and the drug company that makes it. The drug is CEP-701 and the company is Cephalon. Dr. Don Small from Johns Hopkins is meeting with Cephalon tomorrow to hopefully convince them that Alex is a good candidate for the drug. We should know very soon if we're going to be approved.

If we're approved for the drug we'll be in good shape. We'll start with CEP-701 and if it fails we'll move on to R115777 (another targeted chemo which is not a FLT3 inhibitor). The short term goal is to keep her in remission until January when transplant is an option. The long term goal of course is to keep her in a long term remission!

If we can't get approval for CEP-701 we'll have to try R115777 immediately. If that doesn't work and it's not yet January, we will have to make a decision whether or not to give Mylotarg a fourth time before going to transplant.

Thanks again to everyone for all your support. Take care.

-- Todd

Quick Update: Tuesday, November 5, 2002

Hi Everyone,

The other shoe has dropped yet again. A blood test today confirmed that Alex has 9% leukemia blasts in her blood, which means she has relapsed for a sixth time. She'll have a bone marrow aspirate tomorrow, and bone marrow samples will be sent to Johns Hopkins to check for the FLT3 mutation. As long as the FLT3 mutation is still present she is a candidate for the FLT3 inhibitors, but we will still need to convince the drug company to make an exception for her age. If we can't convince them to make an exception, we have very few options left. Let's hope they have hearts.

After the hospital we're going to take Alex to see Seussical courtesy of Starlight Children's Foundation, so at least we'll have some fun tomorrow. I'll try to post more info and some photos later this week.

Take care.

-- Todd

Quick Update: Friday, October 25, 2002

Hi Everyone,

Just when you think you've got this disease figured out, it throws you a curveball. We decided to have another blood test taken today in case Alex's counts had fallen into critical range. The results that came back were mind boggling. Her platelets were down a little more (but still within normal range), but her ANC had jumped from 765 to over 1300 in three days. So the bone marrow aspirate is off and it appears that the sixth relapse hasn't begun yet. Instead it appears that Alex picked up a virus that is now working its way out of her system. That would explain the low ANC, as well as the slight drop in platelets.

As you can imagine we're relieved, but realistic. We know there is still a 99.9% chance that she will relapse in the next few months, so you can only get so excited. At least it looks like she'll be able to go out trick & treating! <grin>

Hope everything is going great. Take care.

-- Todd

Quick Update: Tuesday, October 22, 2002

Hi Everyone,

Toothless Smile!Just a quick update. Alex's ANC has fallen to 765 and while her platelets and WBC (white blood count) have remained steady, it's pretty obvious that her sixth relapse is imminent or has already begun. Alex will have a bone marrow aspirate next Monday to confirm the relapse and then we have to hope and pray that we can get an exemption to one of the FLT3 trials. We still do not have approval for a second transplant, so there are very few other options. We could try Mylotarg a fourth time, but the remission time has been decreasing with each dose (15 months to 5 months to 2 1/2 months). The only other option is R115777, which is another drug currently in trials, but is not a FLT3 inhibitor.

I'll post more info as I have it. Take care.

-- Todd

Thursday, October 17, 2002

Hi Everyone,

Family PortraitIt's a boy!!! For obvious reasons it only took the doctor about 30 seconds to determine that we're having a son and not a daughter. Needless to say Andrea is still in shock, as she was totally convinced we were having another girl. She just walks around in a daze, muttering "it's a boy, it's a boy..." <grin> She's also taken to calling him "Tripod", for reasons that I'll leave unspoken!

Seriously we're both very happy to have a son on the way and Alex is looking forward to meeting her baby brother. So far everything looks great and he's measuring about a week ahead of schedule. I would post a photo here, but we were both so in shock that we forgot to ask the doctor for one. We'll be sure to get one at the next ultrasound in three weeks.

Alex w/ her buckets of applesWe've still got a few months left to pick a name, but I'm already tired of calling him baby boy. So far the  leading candidates are Jacob, Ethan, Joshua & Samuel. I think we watch way too much West Wing, as two of those names are names of characters on the show. At least we've ruled out Josiah!

Alex had a bone marrow aspirate and spinal tap last week and she continues to be in remission. Her platelets and ANC (immune system) are slowly returning to normal, although not nearly as fast as they have in past remissions. It's a little scary to be heading into flu season with a weakened immune system, but so far she's doing okay. Barring a relapse she'll be receiving a flu shot in the next few weeks, so hopefully we can avoid her getting sick.

Enjoying a relaxing tractor ride!In more medical news, Alex lost her first tooth! She walked up to Andrea the other night and told her that her tooth was loose. Of course Andrea thought she was kidding until Alex started wiggling her tooth in front of her. It took less than a day for the tooth to fall, or should I say be pulled out completely. I was teasing Alex that I could pull her tooth out for her if she wanted me to and of course she said no. She then stuck her hand in her mouth and pulled out the tooth on her own! Needless to say I was pretty shocked that she could do this, but then again she's proven that she is a tough little girl. She spent the next hour or so dancing around, singing "I lost my tooth" until we finally convinced her she had to go to sleep so the tooth fairy could pay her a visit. Unfortunately the tooth fairy (or fairies) didn't have any singles in their wallets/purses, so payment was a stack of quarters which were somehow placed under her pillow without waking her up! <grin>

Making Daddy Work!As you probably guessed from the photos on this update, we went apple and pumpkin picking last weekend with Alex and some friends. We had a fantastic time at Terry's Berries in Tacoma where you can not only pick your own apples and pumpkins, but also press your own apple cider! I grew up back east and went apple picking just about every fall, but I had never pressed my own cider. Let me tell you there is nothing like fresh apple cider. Now if I could just convince the apple farms in Washington State to start carrying Apple Cider donuts. The highlight of the day for Alex was when she suckered me into pulling her (and several large pumpkins) around in a cart! Between the cart, lugging around buckets of apples and the cider pressing I was pretty sore the next day, but it was well worth it.

Thanks again to all of you for almost 4 years years of love, support and prayers. Special thanks to the folks at CouponMaker for their support of Alex's Coupons, including their offer to increase our commission by 50%! Special thanks also to Pauline & Terry Ryan for sending us a half dozen of Apple Cider donuts via FedEx. Ten seconds in the microwave and it was like being home for the fall!


Todd, Andrea and Alex

Donations for Alex

Mail to: Frontier Bank
c/o Alexandra Elaine Martini
P.O. Box 527
Lake Stevens, WA 98258


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