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Background on Alex's Fight Against Leukemia

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July, 2009

Alex at Diagnosis - 11/10/98My beautiful daughter Alexandra who is now 11 years old was diagnosed on November 10, 1998 with Acute Myelogenous Leukemia (AML). It's a very rare form of Leukemia for someone her age, I believe the odds are 2 in 1 million that a 10 month old child will be diagnosed with AML. The typical AML patient is a 55 year old male, so all of us including the doctors were shocked by the diagnosis.

Over the next five months Alex went through three rounds of intense chemotherapy. At her worst she was in the Pediatric ICU on a respirator because of seizures caused by high fevers, but for the most part she made it through with flying colors. In April of 1999 she had her final IT (interthecal) chemotherapy injected into her spinal fluid and we thought we were done. Our peacefulness lasted for five months.

Immediately after Alex's initial diagnosis we had begun searching for the most effective treatments in case she relapsed. The standard way to treat an AML relapse is a Bone Marrow Transplant with a 28% chance of survival. Not content with those odds we began looking at Duke University's Cord Blood Transplant Unit.

While Cord Blood Transplants had only been done for about ten years, the initial statistics were promising. Of the nine children who fit Alex's profile at Duke, seven had made it through the transplant and were still in remission. It wasn't very hard to make a decision between 28% and 78%, so we decided that a Cord Blood Transplant would be the next step. Only six weeks after Alex's initial diagnosis in November 1998, Duke University had already found two cord blood matches. Or course we never thought we would have to use it. We just thought we were being careful.

Alex Before Her 1st Transplant - 10/18/99On September 30, 1999 after weeks of troubling blood test results, Alex was diagnosed with a relapse of her AML. Within a week we had relocated from the San Francisco Bay Area to Duke University in Durham, North Carolina. It would be our home for the next four months. Alex was admitted to the hospital on October 12, 1999 and immediately began receiving high dose chemotherapy and an immuno-suppressant drug. which knocked out her immune system and killed her bone marrow in preparation for the transplant. Eight days later on October 20 she had her Cord Blood Transplant. It was actually kind of non-climatic as the transplant itself is very simple. A small IV bag of cord blood, taken from the placenta and umbilical cord after birth, was given to her through her broviac (central line).

Unfortunately the actual transplant is the easy part of the treatment. The following weeks were much tougher on Alex and us, as she battled high fevers, mucositis (sores in the esophageal and stomach lining), vomiting and all of the other things that develop when your body has no immune system. Still Alex did better than most kids and we actually left the hospital after only 29 days post-transplant, which at the time was a record. We stayed in a rented apartment for another 2 1/2 months while Alex recovered from the transplant. At the end of January 2000 we were given the go ahead to return home.

Alex's During 2nd Relapse - June 2000Upon returning home we immediately started looking into moving to Washington state. My then-wife Andrea and I were both concerned that Alex's Leukemia was somehow linked to environmental contamination near our house in Vallejo, CA. Within two months of arriving back home we had bought a house near Lake Stevens, Washington. By the middle of May we had sold our house in California and moved up to Washington state to begin our new life. Two weeks later Alex relapsed for a second time.

This relapse really caught us by surprise. Alex had been doing so well and looked completely healthy, albeit hairy from the anti-rejection drugs she was on. <grin> Luckily we had again prepared for this moment by researching new treatments for Leukemia including Mylotarg. Mylotarg is a smart chemo that targets Leukemia cells, while leaving healthy cells alone. At the time Alex relapsed Mylotarg was not widely available, but we were lucky enough to get into a Mylotarg Drug Trial at Fred Hutchinson Cancer Center in Seattle. Alex was given the first of two doses of Mylotarg on June 8, 2000 and then we waited to see if it would work.

Two weeks later Alex had a bone marrow aspirate to determine if the Mylotarg was working. While the number of Leukemia cells in her bone marrow had been reduced, it had not been reduced enough for the head transplant doctor at Fred Hutch. She immediately began pressuring us to agree to a second transplant (this time bone marrow) while assuring us that her odds of survival were good, as high as 70%. Since I was aware of the 28% survival rate for Bone Marrow Transplants, I was skeptical of her figures.

After some research I determined that her figures while technically correct only applied to those children that she had allowed to go to transplant. I discovered that in many cases this doctor had refused to transplant if the child was too sick after beginning conditioning for the transplant, even if there was no other hope of survival. After adding back in all of the children that had started transplant conditioning, but were refused a transplant we arrived back at the 28% survival rate that everyone else quoted.

Faced with this information, we began to look for alternatives. During a conversation with Andrea's Father (Bob) he mentioned that it didn't make sense that they wouldn't give her the second dose since the first one had at least done something. That set off a light bulb in my head and I immediately called Dr. Joanne Kurtzberg at Duke to see if she would be willing to give Alex the second dose. After confirming that Mylotarg had been recently approved by the FDA, she agreed to our request for a second dose. Two days later we were on a plane headed back to Duke.

August 2000Soon after arriving at Duke, Alex was given the second dose of Mylotarg and taken off all immuno-suppressant drugs with the hope that her donor immune system would fight the Leukemia. The best case scenario was that Alex would achieve remission, so we could put off the second transplant for a few months and give Alex a better chance of survival. For the next two week we waited and prayed that she would achieve remission for a third time. At the same time we knew that she might not survive a second transplant, so we decided it was time for Alex to spend a week at the beach! The three of us and Andrea's parents made arrangements to spend a week on Bald Head Island off the North Carolina coast. On July 15, 2001, the day before we left for Bald Head Island, we got the news that the second dose of Mylotarg had worked. Alex was in remission! We left for Bald Head Island with renewed hope that things were getting better.

Before we left for our vacation, Alex had a bone marrow aspirate done to determine what % of her bone marrow was still donor. We never gave it a second thought as we had resigned ourselves to the fact that the transplant had failed. There was no way we could put off a second transplant. Five days into the vacation we got the most incredible news. Alex's bone marrow had returned to 100% donor, which meant that the Leukemia was completely gone and she wouldn't need a second transplant! After only seven weeks at Duke she was in complete remission and her transplant had been saved! As a precaution she was given a second infusion of cord blood from the original donor to induce a GVL (Graft vs. Leukemia) reaction and then allowed to fly home on August 2, 2000.

Halloween 2000Over the next 13 months Alex continued to do well and we started to live a somewhat normal life. We began to feel confident that things were going to be okay, but that's when we got blindsided again. In July of 2001 Alex began to have problems with her right eye swelling shut. At first the doctors thought it was a sty, but when it didn't go away after two months a CT scan was scheduled. On September 12, 2001 the CT scan revealed that Alex had a tumor behind her eye. Two days later it was confirmed that it was a Leukemic tumor and that there were also Leukemia cells in her Central Nervous System (CNS). The Leukemia was back for a third time. Over the next 18 months we were hit with a series of other misfortunes including:

  • The near collapse of my business after the 9/11 attacks. I ran a web design business that worked on several local and state government projects. The majority of these projects were canceled in the days after 9/11.
     
  • Alex relapsing four more times with the length of her remission decreasing each time. These relapses and subsequent treatments resulted in several long term hospital stays. (Note: You may notice that Alex had hair during this time. Alex was treated with Mylotarg, a targeted chemo, which doesn't result in hair loss)
     
  • The 14-week premature birth of our son Nicholas (he was 13" long and 1 lb, 9 oz) on 12/13/02 (Friday the 13th if you can believe it!)
     
  • Andrea developing a serious staph infection, after Nicholas' birth, that left her near death in the ICU at Tacoma General, while Nicholas was in the NICU at the same hospital, and Alex was in-patient at Children's Seattle.

September 2001 to November 2002
Targeted Radiation - October 2001 November 2001 Family Portrait - Easter 2002

Alex's 5th Relapse - July 2002 September 2002 October 2002

Nick - December 2002
Nicholas Ryan Martini First Touch He's Got My Nose!

Me and my Dad asleep at last

For six weeks I faced the very real possibility that I could lose my entire family. Thankfully all of them were fighters. By March 2003 Andrea and Nicholas were healthy enough to fly with Alex and I back to Duke, so Alex could undergo her second Cord Blood Transplant. Her second transplant took place on April 1, 2003 (yes April Fools Day!) and while she had several setbacks including Cyclosporine Toxicity and Grand Mal seizures, we were able to fly back home to Gig Harbor in July 2003.

March 2003 to December 2003
Our Beautiful Kids She's even beautiful bald! Taking a Nap
Smile Nicholas - Today! My Big Girl

It's now been almost six years since we arrived back home. Alex is doing well, but continues to experience side effects caused by her six years of treatment. She has had cataract surgery on one eye, problems with short term memory and most seriously has a chronically low platelet count. Nicholas is now six years old and aside from being small for his age, you would never guess in a million years that he was a micro-preemie. Andrea fully recovered from her near-death experience and other than a six week gap in her memory (a result of the staph infection and the subsequent medical treatment) has returned to good health. Andrea and I divorced a couple years ago, but we continue to work together in raising Alex and Nick.

One of the really good things that came out of the struggle to save Alex's life was the creation of Alex's Coupons. Alex's Coupons was started in October 1999 as Affiliates for Alex, a collection of affiliate links to online stores. The site was designed to raise money for my daughter Alex's Christmas presents, while she underwent treatment for Acute Myelogenous Leukemia. Friends and family did their online shopping through the site and I received a small commission in return from the stores. That Christmas Affiliates for Alex raised nearly $400 for Alex's Christmas presents.

As time went on I started to think of what I would like Affiliates for Alex to become in the future. I wanted it to be a place where people could come to save money and get educated about Childhood Cancer. I also wanted to be able to give back to the many childhood cancer organizations that had been helping my family financially during Alex's treatment. For a couple of years this remained just a dream because I didn't have the time to devote to it, but in September 2001 our finances took a turn for the worse as Alex relapsed and my web design business collapsed.

Desperate to pay the bills I re-launched Affiliates for Alex as Alex's Coupons in December 2001. From the beginning we were able to offer our visitors great stores, coupons to save money and information on Childhood Cancer, but it was still just a little site that wasn't making enough money to allow us to donate to others.

Thankfully by March 2005, income from the site had grown enough that we were able to make our first donation to charity, a $1000 donation to Starlight Starbright Children's Foundation. Over the last 4 years we've donated over $20,000 to childhood cancer charities, including our most recent $3000 donation to Starlight Starbright on May 18, 2009.

January 2004 to April 2006

Alex & Congressman Patrick KennedyWe are very involved in Childhood Cancer activism and fundraising, both personally and through Alex's Coupons. The Cancer Support Groups and Organizations we support include Starlight * Starbright Children's Foundation, Leukemia & Lymphoma Society, NCCF, National Children's Cancer Society, Candlelighters of Western Washington, Make a Wish Foundation and Corporate Angel Network. Twice we've gone to Washington DC (once on behalf of NCCF and once on behalf of LLS) to lobby for increased funding for Cancer Research. During those visits we have met with Senator Maria Cantwell and Congressmen Norm Dicks, and Andrea has testified before a congressional sub-committee on Childhood Cancer.

We are also very involved in providing support to the dozens of families who have contacted us over the years asking for help with treatment options, financial aid, and emotional support. We feel it's both a duty and a privilege to help other families who are dealing with the same situations we've dealt with over the past six years. Many of these families have become our closest friends and we remain in contact with almost all of them.

For those of you about to have a baby please look into the possibility of donating your baby's cord blood to the National Cord Blood Bank. The cord blood is taken from the placenta and umbilical cord after birth, so the Mother and baby don't have to be disturbed at all. The Carolinas Cord Blood Bank website has information on cord blood donation and also links to other cord blood banks. Please spread the news about cord blood donations. Here are some additional resources for those of you who are interested in public donation of Cord Blood:

-- Todd Martini
July, 2009


Alex & Nick Today (July 2009)

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