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Update on Alex's Fight Against Leukemia

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Quick Update: Monday, December 9, 2002

Hi Everyone,

We had the ultrasound today and the amniotic fluid increased from 3.5 to 8.5! Anything above 5 is considered normal, so Nicholas is staying where he belongs for the moment. The best case scenario is that we make it to 32 weeks, which would be the end of January. Andrea still has preeclampsia, so she will remain on bed rest (most likely at the hospital) until the baby is born. Hopefully she'll be able to go home for Christmas for a few days.

In other good news Alex was released from the hospital today, just in time for Andrea's ultrasound. We'll probably need to go to clinic at least once a week for a platelet transfusion, but other than that she is doing fantastic. Her ANC was up to 1500 yesterday which is almost normal range. As long as she continues to do well we'll be able to take her to see the Nutcracker later this month, which is something we've been looking forward to.

It's very doubtful that Andrea or the baby will be able to fly until February or March, so we're going to need to postpone Alex's transplant until then. We may try IL-2 a second time to give Alex's immune system enough of a boost to keep her in remission. If so we'll need to go in-patient for four days to receive the high dose IL-2 treatment.

Special thanks too all our neighbors in Gig Harbor who took care of our house and pets over the past few weeks. I don't know what we would have done without you.

Thanks again for four years of love, prayers and support. Take care.

-- Todd


Quick Update: Saturday, December 7, 2002

Hi Everyone,

Andrea is going to have another ultrasound on Monday. If the amniotic fluid remains low, they are going to deliver the baby via c-section immediately. Nicholas will only be 25 weeks which is at least 13 weeks premature. If the amniotic fluid has increased they'll try to wait as long as possible. The best case scenario is that we make it to 32 weeks, but at this point we'd be happy to get to 28 weeks.

Alex's ANC was over 500 today which means we should be going home soon. She'll have a CT Scan tomorrow morning (Sunday) to make sure there are no fungal infections lurking. As long as the CT Scan is clear we should be out of the hospital by no later than Tuesday.

I'll post more tomorrow after the CT Scan. Thanks again for four years of love, prayers and support. Take care.

-- Todd


Quick Update: Friday, December 6, 2002

Hi Everyone,

The news isn't good. Andrea is being admitted to the hospital this morning and will remain there until the baby is born.  They're going to try to delay the birth as long as possible.

On a positive note Alex's ANC is up to 90 which means that her ANC should be strong enough to go home by next week, barring any unforeseen complications.

I'll post more after I get Andrea into the hospital. Thanks again for four years of love, prayers and support. Take care.

-- Todd


Quick Update: Thursday, December 5, 2002

Hi Everyone,

Just when you thought it couldn't get any worse, it does. Andrea definitely has preeclampsia. Both uterine vessels have restricted blood flow and the amniotic fluid level is very low. We'll be lucky to make it to 28 weeks (she's currently at 24 weeks) before she gives birth, which means Nicholas will be very premature. She had additional blood work done today and has started on blood pressure medicine and steroid shots. If the blood work comes back looking bad she will be in St. Joseph's hospital in Tacoma by tomorrow and will remain there until the baby is born. Going to be a lot of fun shuttling between hospitals 50 miles apart. If it looks like Alex is going to be in-patient for a few more weeks, we may look into transferring Andrea to UW Medical Center which is about a mile from Children's Seattle.

Of course all of this means that Alex's second transplant at Duke next month will probably not happen. Andrea more than likely will not be able to fly until after the baby is born, and once the baby is born he'll have to remain in the hospital for long term care. At this point I have no idea what we are going to do, as there are few good options left. We may be forced to do a second transplant at Fred Hutch, which considering our past experience with their head of PBMT would not be a lot of fun. The other option would be to leave Andrea and Nicholas here in Seattle and fly back to Duke with Alex, but I can't imagine having to do that. Right now I wish Seattle and North Carolina weren't so far apart.

Thanks again for four years of love, prayers and support. Take care.

-- Todd


Quick Update: Wednesday, December 4, 2002

Hi Everyone,

Alex has an ANC!  Okay so it's only 16 and normal range is 1500-7000, but at least it's not zero anymore! Today was a relatively good day for her. She went to the Playroom with Andrea to play some basketball this afternoon and then went back tonight with me to play some more.

Andrea's blood pressure went up to 162/93 tonight and she has been put on full bedrest, quite possibly until the baby is born. She is going to have an ultrasound and amnio tomorrow morning to make sure the baby is okay. She'll also be going on medication to lower her blood pressure. I'm going to call Ronald McDonald House tomorrow to see if we can get a room, as I'm not comfortable leaving Andrea at home alone when her blood pressure is this high.

Several of you asked for a more comprehensive list of the restaurants, gas stations and grocery stores that we frequent:

  • Restaurants: Outback Steakhouse, Chevy's, Red Robin, Olive Garden, Copper Sky, Taco Time, Taco Del Mar, PF Changs, The Keg, Piatti, Papa John's, Cheesecake Factory and Marie Calendars
     
  • Gas Stations: Union 76, Texaco, Amoco
     
  • Grocery Stores: QFC, Albertsons, Safeway

We have a lot of people to thank today. Thanks to:

  • Everyone who has offered to help out with our hospital expenses.
  • Our neighbors in Gig Harbor, Tim & Debbie Lord, Dan & Nancy Flynn and Tracy Koons, for sending meals and taking care of our pets.
  • The cast of the Beauty & the Beast touring company (Belle, Gaston, Mrs. Potts & Janelle) for posting in Alex's guest book. Alex really got a kick out of seeing your posts!
  • The January 98 Playgroup for the Nintendo Game Boy and accessories.
  • The members of Refunding Makes Cents for all of the cards and stickers.
  • Janet Arsenault (and her son Harry) for the beautiful music box.

...and finally thanks to everyone who has posted in Alex's guest books, sent cards, stickers, gifts, books, prayers, letters, etc... I don't know where we would be without all of you.

Thanks again for four years of love, prayers and support. Take care.

-- Todd


Tuesday, December 3, 2002

Hi Everyone,

Cuddling with MommyIt's been 11 days and we're still in the hospital. Alex's bacterial infection cleared up quickly, but she continues to spike high fevers, possibly from the antifungal drug (Abelcet) that she's on. She has to remain on Abelcet until she has an ANC (immune system), and we can't go home until she can go 48 hours without a fever. Her ANC today was zero, so I think we're stuck here for at least another week and quite possibly longer. Hopefully we won't be celebrating Christmas in the hospital. Being here for Thanksgiving was depressing enough.

While all of this has been going on, Andrea has been having problems of her own. She has edema (water retention) in her hands, feet and face, and her blood pressure has been through the roof. Yesterday it was 163/95 which is dangerously high. They put her on partial bedrest late last week and today she went in for some blood tests to see if she has preeclampsia. If she does have preeclampsia she may need to go on total bedrest until the baby is born in March, which would certainly make Alex's transplant next month more of an adventure!

Right now Andrea is spending 4 nights/week at the hospital (on bedrest of course) and I'm taking the other three nights. We're seriously considering taking a room at the Ronald McDonald House to avoid having to drive over 100 miles each day, but I'm not sure our pets would appreciate that. Once we left our cat Katie at home for two weeks (w/ Neighbors looking in on her) while we were on vacation. When we got back we found that she had used my favorite chair as a toilet for the entire time we were gone!

Several of you have asked for a list of what we need right now. Tops on the list is gift certificates for restaurants (e.g. Outback, Chevy's, Red Robin, Olive Garden, etc...), gas cards and phone cards. We've spent over $400 in the past ten days on meals, another $150 on gas and who knows how much on phone calls.

Thanks again for four years of love, prayers and support. Take care.

-- Todd, Andrea & Alex

 

Donations for Alex


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

OR


via PayPal




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