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Update on Alex's Fight Against Leukemia

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Friday, August 29, 2003

Hi Everyone,

Yes, we're still alive! I'm sorry we haven't updated in 3 weeks. I wish I could point to one thing and say, "this is why", but there isn't just one thing. Things are crazy around here. Without even trying too hard, Todd is getting closer and closer to his goal of convincing me that we need a nanny. If only we had a way to pay for one!!!

Looking at Daddy!Things have been going well with the kids. It's hard to believe that just a month ago, Alex was in PICU fighting for her life. In fact if you had seen her while she was in the PICU, you would have had a hard time believing she was fighting for her life! We were not too surprised when Alex got sick. In fact we would have been surprised if she HADN'T gotten sick! A few days before getting sick, Alex had been having some diarrhea and thought that she had to "toot" while she was in the bathtub... It turned out that it wasn't so much a toot. As soon as we realized what had happened we pulled her out of the tub, did a dressing change and changed the caps on her lines. I called Dr. K and she wasn't too concerned about it, but we were flipping out to say the least!

She loves her baby brotherSure enough, two days later Alex complained of being cold, even though it was close to 90 degrees that day. I took her temp and she had a fever, but I wasn't too concerned since she had no other symptoms. I called Doug (Dr. Hawkins) and told him that we were coming in, but made him promise that we wouldn't have to stay, since it was probably just a mild GvH attack. I started packing an overnight bag just in case and while I was doing this, Nick started screaming and wanted to be held and Alex started vomiting! So what started out as a low stress trip to the hospital, became an emergency situation which required us to move quickly. Luckily, our next door neighbor Brandi was home and came over immediately to help. (Thank you Brandi!!!!) I called Doug back and told him things had changed and to have a bed ready, as I knew there was no way we were coming home. By the time we took off for Seattle, Alex had stopped vomiting, was in great spirits and didn't seem sick at all.

Still smiling!Once we got to clinic, Todd and the kids went back to the infusion area and I went to look at wedding pictures with one of our favorite nurses. I was gone for about 10 minutes and when I came back, Todd was moving all of our things to the Procedure Room, as Alex's blood pressure was really low. They started Alex on antibiotics and started bolusing her with tons of fluid to get her blood pressure up. Throughout all of this Alex still looked great, as she was talking to everyone, watching TV and laughing. They finally got her stabilized enough, so she could be admitted to the regular oncology floor.

As soon as we got to the room, they took Alex's blood pressure and it was 68/34. They called Doug and he told them to get us to the PICU. They sent the PICU docs down to look at her and Todd was really feeling like they were jumping the gun. I was having a hard time believing that she was sick enough to be in the PICU, but remembered something that Nancy Ramsey (Nolan's mommy) had passed on to me from one of the Duke PICU nurses. She was told that a lot of times the floors hold on to the kids for too long trying to stabilize them there and by the time they call the PICU, it's often too late. I didn't want to get into a situation where she started crashing and they had to call a code. If we were in PICU, all of the doctors who would be involved in a code, would already be there and no time would be wasted trying to get to her.

So I convinced Todd that we needed to go to the PICU and off we went. I can't say enough about the PICU at Children's. They are incredibly family and kid oriented, and do a great job of making sure the parents are involved in everything. The rooms all have beds for the parents and every morning when they round on your child, they come to get you so you can be there. I was very glad that we made the decision to allow her to be transferred because later that night she did crash. Her blood pressure went down to 60/18, so they immediately started her on a dopamine drip and alarmingly her blood pressure went down even further. The nurse increased the rate of the dopamine drip a couple more times and Alex finally stabilized. If we had been on the floor, they would have had to call a code and a full crash team would have been involved. And of course, the entire time this is happening, Alex is watching Funny Pet Videos on Animal Planet and laughing her head off!!! The nurses and doctors kept coming to her room the entire time we were there, to see this kid who was laughing so hard! They all told me how much they loved to hear laughter, since it's so rarely heard in the PICU. She was discharged 4 days after she was admitted and even with how serious it was, it was one of the easiest hospital stays we've ever had!

Nick is still doing amazingly well. He is sitting up on his own and his first two teeth just broke through! He is such a happy little guy and we're all having a great time with him. He is still growing like a weed, eating non-stop and watching everything we put in our mouths. We joke that he got teeth early just so he could have steak! He is babbling up a storm and really trying to talk. Every once in a while he gets a "mama" or "dada" out along with other words that we swear we hear, but we know it's a fluke!

Hanging out in the sink!Sitting up like a big boy!Beautiful Boy

Now for the rest of Alex's medical update. Two weeks ago Alex had her single lumen broviac taken out, which left her with only a double lumen broviac. Of course Alex's favorite part of the broviac removal was the "magic milk" (propofol). My druggie child! Now she can't wait until she gets the remaining broviac out so she can have "magic milk" again! And here is some even more good news. Alex is down to 1 mg of prednisone every other morning, so her extra weight is starting to come off. She was down to 42 pounds at clinic today and while she still has a ways to go, her leg strength is getting better.

It hasn't been all work and no play for us. A few weeks ago the Starlight Foundation arranged for us to take a cruise around Lake Washington on a schooner (the Mallory Todd) with a number of other families. All of us had a great time, especially Nick who spent most of the cruise being held by lots of woman. We have another flirt in the family! We've also been visiting the Point Defiance Zoo at least once a week. The zoo is very hilly and gives Alex a good workout, while letting her get out of the house for awhile. We bought a one year family pass to the zoo and so far we're definitely getting our money's worth!

We're in the process of getting Alex's home bound schooling set up, but it's been a bit of a chore. At first the school told me that she would only receive 3 hours a week of "tutoring"! Plus, when I looked at the packet that they had sent me to fill out, it said that this tutoring program was only for kids that would be out of school for no longer than 18 weeks. Alex won't be able to start school for at least 8 months!

I was furious and couldn't see how 3 hours of tutoring would allow Alex to keep up with her classmates, and be able to move on to the first grade. Luckily, I spoke to our neighbor Nancy and her daughter Krissy (the former used to be a Special Ed teach and the latter is a Special Ed teacher). Both of them were shocked at the school's decision. Krissy went online and discovered that Alex's needs first had to be assessed, before a decision was made on her schooling. I called the school back and told them what I had been told, and they immediately started working to correct it. Alex will be completely evaluated and have a full program mapped out to make sure all areas are covered.

Even with this good news I'm still having a really hard time with this. I haven't been able to get myself to be active with the Jan '98 board, primarily because every time I go there I see all the happy/sad posts about first days of school. It's a reminder of yet another thing that Alex is being robbed of, because of this stupid disease. Most things I really try to take in stride and not let them get to me, but I haven't been able to do that with school. She wants to go so bad and it's so hard to have to deny her the opportunity. So to all my wonderful Jan '98 mommies who are so faithful in keeping up with us, I love you, I miss you and I'll come back and play soon, I just can't do it right now.

We also had some bad news start trickling in a few weeks ago. We are constantly getting Blue Cross statements showing payments that have gone out. Well lately we've started getting statements where nothing was paid because the transplant cap has been met. Todd called to confirm and sure enough, we have reached the limit. We think that it happened either right before or right after we left Duke. Either way, we will not have health coverage for Alex until 180 days post transplant. Non-covered expenses include the PICU stay (about $50,000) and the two weeks of home antibiotics ($200-$400 per day). If she were to stub her toe right now, we would have to pay for it!!!!! As you can imagine this was devastating news. We have applied for financial assistance from Children's Seattle, but if we're denied, there will be no way we will be able to pay for 3 months worth of Alex's medical bills without losing everything we own. The word frantic and tired doesn't even seem to come close to describing how we are feeling. I'm tired of seeing Todd work so hard and bring in a really good income, only to be completely broke at the end of every month and now it's going to get worse. We are just 2 months away from the 5 year mark since she was diagnosed and we are tired. I'm sorry, this has really turned into a pity fest. I need to change the subject before I'm too much of a blubbering ninny to write.

Some of you may remember that just prior to Alex's first transplant, Todd was going to do a century bike ride to raise funds for the Leukemia Society of America. Well, my sister Wendy has picked up the torch and is going to be participating in a half marathon on November 2nd in Santa Barbara! She has committed to raising at least $1800 for the event. She is afraid that she won't be able to raise enough and I've told her that she won't have a problem. Please don't let me be wrong!!! Click here for a printable copy of Wendy's donation sheet and please support her efforts.

A while back we told you that Madi had relapsed post-transplant. We are thrilled to report that she is back in remission and 100% donor!!!!! Way to go Madi!!!!! Madi and her family are hoping to return home to California next week!

Noah and his parents are still in need of your prayers. His donor status had been trending up for the last couple of months, but it took a dive last week. He has also been having more serious respiratory and mucous problems. Greg and Debbie are exhausted and very discouraged.

Well, I just looked at the clock and it's 1:30 am!!! I think I better wrap this novel up and get some sleep! Thank you for being patient with us. We would love to update more often. We just need more hours in the day and more brain at the end of it! Thank you for all your prayers and support for the last five years. We would have been lost without it! We'll talk to you soon.

Take Care,

Andrea, Todd, Alex and Nick

 

Donations for Alex


We are in the process of raising money for the expenses we incurred during Alex's 2nd Transplant At Duke. We have 3 ways in which you can make a donation:

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

OR


via PayPal using your checking account or PayPal Account (this account cannot accept credit cards)

OR


via PayPal using your credit card (this account can accept credit cards)



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