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Update on Alex's Fight Against Leukemia

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Quick Update: Monday, August 4, 2003 (Day 125 Post-Transplant)

Hi Everyone,

Just a quick note to let everyone know that Alex was released from the hospital on Thursday, July 31st and is doing great. On Sunday we took her and a few friends to a private screening of Finding Nemo that was arranged by Zach Sheets at Regal Cinemas (Thanks Zach!), and we had a fantastic time. When I have some time later this week I'll post some photos, but right now I'm just going to get some sleep!

Hope everything is going great. Take care.

-- Todd

Quick Update: Tuesday, July 29, 2003 @ 2:00 am (Day 119 Post-Transplant)

Hi Everyone,

Alex was admitted to the PICU at Childrens Seattle on Monday afternoon as a precautionary measure, after spiking a fever and experiencing low blood pressure. Her fever broke almost immediately and her blood pressure is responding to the medication (dopamine) with which they are treating her. If she continues to progress, she should be out of the PICU in a day or two at most and be moved to a HemOnc room. At this point we do not know what is causing these problems, but it is most likely a blood infection or (less likely) GVHD. I'll try to post more tomorrow.

Hope everything is going great. Take care.

-- Todd

Wednesday, July 16, 2003 (Day 106 Post-Transplant)

Hi Everyone,

Cuddling w/ Moose Dog!Home Sweet Home!!!!!! What a wonderful thing to be able to say!

We made it home Friday evening and it was strange to walk through our front door. On one hand, it felt like we had just left. On the other hand, it felt like we had been gone forever. We're having fun "relearning" our house! I'm constantly turning on the wrong light switch and I'm having fun trying to learn how to use my oven again! Alex is in heaven. She's been playing with all her "stuff" and we've been going on walks to check the blackberries to see if they're ready yet. We have wild blackberries growing on some of the lots that haven't been built on yet and they are soooo good. Nick wasn't too sure of the house the first couple of days. He's so use to being in very tight quarters that all the space of the house was a little much for him I think. One thing that didn't take any time at all for him to get use to was his crib. He loves it and has been sleeping great.

Saying Goodbye to Dr. KOur trip back couldn't have been better. Wednesday, the Mitchems (thank you Mike and Marian!!!) came and helped us finish packing and get the van loaded, and I do mean LOADED!!! By the time everything was in, there wasn't an inch of space left open. We were lucky there was still room for us to sit! Our grand plan was to be on our way up to Cape Charles by noon. Of course reality soon hit and we were on the road at 5:30! By the time we got to the bridge that we were so excited about seeing, it was 10:00 pm! Oh well, maybe we'll be able to catch it when we go back for a check up in October! We stayed at a little B & B called Chesapeake Charm and the owner, Phyllis, couldn't have been nicer. In the morning, she took Nick and fed him his bottle as well as some mashed banana (which he loved) so that we could eat breakfast. Her daughter brought out her guinea pig for Alex to see. She was so excited about this! The rest of the day until about Sunday, everyone heard how she got to pet a guinea pig! Alex was so quiet most times in the car that we kept thinking that she was asleep. We'd look in the back and see her looking quite contently out the window. The thoughts that must have been running through her mind!

Silly Nick!We got into D.C. and found our hotel, The Fairmont, pretty easily. While we were at the desk, the staff was so nice. Alex was going on and on about the guinea pig and then she started talking about getting to go home. We explained to the girl that we had been gone for four months and why. As we were collecting the keys from her, she told me that the room she put us in wasn't the one we booked (bargain basement Expedia) but, she thought that we would really enjoy it since it was our last night. We got upstairs and she had put us in a suite. We were floored. It was so beautiful, and big! Of course, the first thing that Alex makes a V-line for, was the $9 jar of Jelly Bellies! We told her that there was no way she was to open them! When the bellman came up with our luggage, she started telling him how she wanted the jelly beans, but mommy and daddy had said they were too expensive.... Later when we ordered dinner, it came up with a large plate of chocolate chunk cookies, milk, and of course, a jar of Jelly Bellies. All on the house. She was in heaven and so were we. To have such thoughtful people working at a large hotel trying to make you feel special, meant so much to us. Back in our expense account and pre kid/cancer days, we used to stay at really nice hotels all the time. The Fairmont and their staff was the best hands down, even to the Ritz Carlton! One of the things that makes the experience more unreal is that they were one of the least expensive hotels listed on Expedia! We can't recommend them enough.

Alex had her first appointment at Children's with Dr. Hawkins on Monday. She had been talking about seeing him for about a week and was so excited. We were in the room for about 5-10 minutes and she had just started to ask when Dr. Hawkins was going to get there and Doug walked in the room. It was so sweet. She "ran" over to him squealing his name and through her arms around him telling him that she missed him. It was great. Her labs look really good. Her platelets are still taking their sweet time coming back. They have been hanging out in the 30,000 range for about a month now. What's amazing is that her bruising isn't too bad with it. We got to see everyone in clinic and they were all amazed at how good she looks and how huge Nick is! We also got to go to the floor to see all our nurses there. It was so great to see everyone and we're so thrilled to be home. We were even more thrilled when we left clinic after only being there for 2 1/2 hours and that was with a 2 hour infusion of Cytagam!!! Oh the joy of a REALLY efficient clinic!

So far, we have been able to have dinner with our neighbors Dan, Nancy, Chrissy and Pat who took such good care of the house and pets while we were gone. We also had the pleasure of having our new neighbors over for dinner last night. They moved in while we were gone, but we were able to form a very strong bond before we even met in person. As we have been on this journey with Alex strange things have happened with every move when it comes to who our neighbors are. A few months after we moved to Lake Stevens from California, we got some new neighbors. We were blown away when we found out that Courtney had been a bone marrow nurse! It was such a great thing to be able to talk to her and have her understand everything I was saying! Just before we moved here to Gig Harbor, we were able to meet most of our neighbors at a neighborhood barbecue. Two people that we really enjoyed talking with were Tim and Debbie. We thought it was amazing that they were understanding everything we were talking about and were asking questions that a medical person would ask. We then found out that Tim is a pediatric Anesthesiologist and Debbie used to be an ICU nurse! Again, we thought of how cool it was that people that would really understand what was going on with our family were put in our lives. You'll also remember Tim as my Knight in Shining Armor! He was my anesthesiologist when they opened be up for the third time and he made sure the fluid that had collected in my lungs was pushed out by "a few big puffs" so that I didn't have to stay intubated after the surgery like they had planned.

While we were in Durham, we were told that not only had the house next to us been complete, but the people moved in! About a week later, Todd received an email from Brandi, our new neighbor. Before they purchased the house, the builder told her and her husband Mike that we were in North Carolina because of Alex's leukemia. For most people this would be sad information and that would be about the end of it. The difference here was that a year ago, Mike and Brandi lost their 15 month old baby boy, Mitchell to AML. Brandi had come across our website a while ago when she was doing some research on AML and thought we sounded familiar. Sure enough, she looked on the homeowners list and there we were, her next door neighbors. Needless to say, all four of us were pretty freaked out by this very odd common bond. Even though we had emailed back and forth and were both excited to meet, we both did the "chick" thing! All weekend I was afraid to go over and say hi because I wasn't sure if they were really ready for us. I was afraid of the pain that seeing Alex might bring up and I thought that I should just give them time and space. Then, yesterday when I was walking Nancy and Chrissy out, Brandi was also in her front yard. We got a good laugh that she was doing the same thing and was worried that we might not be ready to meet them! They came over for dinner and it was wonderful. I have talked in the past about how strong the bond is with cancer and transplant families, because they truly understand what you go through each day. I also wrote about having a harder time leaving Durham because of all the great friends we had met and how well we understood each other. Last night wasn't like having dinner with people we had just met, it was like having dinner with old friends that you have had forever. It really amazes me the way God works and puts people that you really need in your life. We are so thankful that He led Mike and Brandi here.

On top of trying to get unpacked and settled, we will be attempting to buy a new car in the next week or so... We came home to a $2000 car repair bill and then yesterday, we had to take it back in because it started leaking coolant! So, all 6 heater hoses have to be replaced!!!! UUUUGGGGGGGHHHHHH!!!!!! Our mechanic has been so wonderful to us. Normally, if you had a bill that high from the mechanic, most of it would be labor... Fritz only charged us $600 in labor and all of the parts were given to us at cost!!!! I don't know what we would do without him! We were hoping to wait a little while to get a car and get back on our feet a bit, but at this point Alex's life could be in danger if we don't have a reliable car. So, hopefully we will be able to get a good price and a good loan rate!

Many of you that have also become faithful in checking our friends sites know that we have difficult news to report of some of them...

  • Jillian passed away on July 8th. Our prayers remain with her family. This was not only very difficult for our family, but for everyone at clinic. Jillian was such a sweetie, loved everyone and like Alex, knew no strangers. She touched so many lives in her short life, and I'm sure will continue to touch many more. Her parents, Ken and Laura handled her passing with such grace and courage, it was amazing. They are an inspiration to all of us.
  • Taylor has been unable to get back into remission and is about 99% blast. Her mom is looking into a treatment at MD Anderson in Texas. Please keep her and her family in your prayers, she needs a miracle.
  • Madi has also relapsed. The last FISH they did revealed 83% of Madi's cells and 17% of the donor's cells. They have taken her off Cyclosporine and are hoping that GvH will kick in. They also have several other options in the works. We have become so close to the Mitchems and to see them having to go through this is torture. Mike and Marian have such wonderful, positive attitudes and are handling this with great courage and strength. They amaze me! Please pray that Madi gets back into a permanent remission.

We would like to thank everyone at Corporate Angel for their hard work and for getting us on the flight on the 11th. They new how important it was to us to get on this flight. Not only was it an empty flight, but it was a non-stop. A lot of times when you fly with them, it will take 2 or 3 flights to get home. Each time you take a flight, you have to stay overnight, so it takes a while to get home and it gets very expensive. Liz and her staff work their tails off every day to get families like ours to and from treatment in the most direct manner possible. It really helps when you don't have the added stress of having to fly commercially. Thank You!!!!

Alex's Small Lunch!We filled that plane to the ceiling!Eating at 30,000 feet!

We have gotten permission to thank Boeing Corporation for flying us to Durham and back home again! Our crew this time was just as great as the one we had when we went out. We were lucky enough to have John Seek as our pilot again. Don Balish was our copilot, Nick had a blast sitting in his lap and "flying" the plane! Kathy Martinson was our attendant and we had such a wonderful time talking and spending time with her. They had all kinds of goodies for Alex and they spoiled us all rotten! We hope to see them again in October when we fly out for our six month studies. Thank you all for taking such good care of us!

When we got to the hanger on Friday, the rep behind the desk immediately told us that she had to go get someone that wanted to see us. I was a little confused, because I hadn't even told her who we were! Once my brain and common sense returned to me, I figured that they probably don't see too many families with a bald 5 year old and a baby come through their corporate hanger! About a minute later, Jeanie came out of the office. She had been there when we came in and had showered Alex and her friend Grant with attention and candy! John told her the day before that we were flying out, so she went shopping. She had a bag full of gifts for Alex to keep her entertained on the plane. Then she took Alex all over the hanger so she could visit. Alex loved it! Jeanie, she hardly ever puts the "yoyo" down! Thank you so much for your kindness.

Nick & Captain Don at 30,000 feet (Don wasn't flying the plane at this point!)Captain John, Alex, Kathy & Captain DonSeattle!!!

We also need to thank the Piedmont Hawthorne Corporation. We found out from John that whenever they have an Angel Flight, all of the normal fees are waived for the corporation doing the flight. This is hundreds of dollars each time. What a great company! We got to meet the general manager Jamie Wilson and he was great and made us feel very special. Thank you!

It has taken me all morning and into the afternoon to get this far!!!!! My non-working brain combined with interruptions is a bad thing! My parents will be here in a few hours and will be staying for 6 days. It will be such a great help to have them here. I still have so much unpacking to do! Thank you all for your thoughts and prayers. Please keep them coming, because we still have a very long way to go before we are out of the woods. We'll try to update again soon.

Take Care,

-- Andrea, Todd, Alex & Nick Martini


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


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


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

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