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Update on Alex's Fight Against Leukemia

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November 22, 2009

Hi Everyone,

It's been a long time since I updated this page. The last few years have seen some major changes in the lives of me and the kids (as I'm sure you know from Andrea's post last year). Some good, some bad and everything in between. Let's start with Alex, who will be turning 12 years old on January 10th.

Those of you who have been reading Alex's updates regularly, know that Alex went through a health scare last year, when her platelets began to drop. At the time we thought she was on the verge of complete bone marrow failure. The good news is that almost two years later her platelets have remained steady. Of course it's also bad news that her platelet count has remained steady, as that means they haven't gone up either. They remain in the 70-80 range (normal range is 130-300) and if we're lucky that's where they'll stay.

Because of her low platelet count Alex bruises very easily, but she hasn't let that slow her down too much. Her new favorite thing is riding a Razor scooter and she's taken a few falls with it. It's a little scary to see her flying down the street sometimes, but I'm happy to see her regain some of her confidence physically. Before her second transplant Alex used to ride her bike like a maniac around the Oncology ward at Children's Seattle, but she's been unable or unwilling to ride much since. Hopefully someday soon she'll be riding again and yelling "c'mon bike go faster" like she did when she was five.

Alex has had several other serious medical problems in the past few years, all of them the result of the radiation she received during her second Cord Blood transplant. First she was diagnosed with Pituitary Dwarfism. The lower half of her body was growing at a normal rate, while the upper half of her body was not. Once Alex was diagnosed with Pituitary Dwarfism, she was placed on Human Growth Hormone (HGH) by Mary Bridge Hospital and started a growth spurt, but after a short period of time they reduced the dose (they said her levels were too high) and she stopped growing. Andrea and I both agreed that it would be a good idea to have Children's Hospital Seattle intervene, as we've always felt more comfortable with the care they provide. They increased Alex's HGH earlier this year and she has once again started growing.

Alex has also had numerous problems with her teeth over the last couple of year. The radiation weakened the roots of her teeth, so that her adult teeth have very narrow roots. She's had to endure a couple of dental surgeries at Children's Seattle, which will hopefully help, but the reality is that she will probably need false teeth very early in her life.

Earlier this month one of Alex's doctors at Childrens took a look at several abnormally shaped moles on her body. The largest one of them will be removed and biopsied in the coming weeks, as they're concerned that it's skin cancer. She'll also have all of the moles on her body mapped and going forward she will go back for regularly schedule appointments to make sure none of them become cancerous. Hearing the C word is always scary when it comes to Alex, but we're cautiously optimistic that the doctors are on top of the situation.

In addition to her physical problems, Alex has faced many developmental problems in the last few years (radiation again). She's currently in the fifth grade and while she spends part of her day in a regular classroom, the bulk of her serious class work is done with her special education teachers. She has short term memory problems, cognitive processing issues and works at a very slow pace. Unfortunately her difficulties in school are probably going to continue to get worse as she progresses to the higher grades. To make matters worse her social development has been severely hampered and has resulted in incidents at school where kids have bullied her for being different. Andrea just spoke with her class earlier this month about what Alex has gone through over the last ten years, so hopefully we'll see less bullying problems. Still we'll need to make some hard decisions about her education going forward, including deciding whether or not she should stay in public school, and if not whether I can afford private school for her.

Nick, who will turn 7 on December 13th, has also faced several problems over the last few years. Last year Nick started Kindergarten and almost immediately started showing problematic behavior including outbursts, inability to concentrate and argumentativeness. Earlier this year he was diagnosed with ADHD (which is common in micro-preemies like Nick) and was put on Adderall for a short time and then Concerta. While the Concerta helped him focus in class, it led to more and more outbursts and out of control behavior at home, which isn't surprising since it's a stimulant. After the school year was over he was put on Strattera, which helped with the mood swings and outbursts. However once the school year began it was apparent that it wasn't doing the job, as Nick was once again unable to concentrate in class. We decided to take him up to the Behavioral Clinic at Children's Seattle and after a couple of sessions with a psychologist he has been placed on an anti-anxiety drug (BuSpar). It will be several weeks before we know if it's really working. It's been a rough 14 months since Nick first starting having these problems, but hopefully we're a little closer to finding a solution.

All of these various medical treatments have cost quite a bit of money over the last few years. While insurance has covered some of it, a substantial portion of it has had to be covered out of pocket and I recently had to reduce my insurance coverage to the bare minimum, as they raised it over $300/month in the last two years. I did get approved for financial aid at Children's Seattle earlier this year, which has helped tremendously, but at this point we don't even have a prescription plan. I don't even like to think about what would happen if something serious was to strike one of us again.

On the financial side things are pretty bad these days. Alex's Coupons is still not ranking well with Google and is no longer even providing enough money to pay the bills. I've only been able to make one charitable donation this year and don't know when we'll be able to make another one. Throw in some large debt, taxes, medical bills, therapy bills for Nick & Alex, private tutoring for Alex and a down economy and things are looking pretty bleak financially this Christmas. I'm really proud of the $20,000+ that Alex's Coupons has donated to charity over the past four years, but right now all I'm trying to do is survive financially until things turn around. I've tried everything I know to get Alex's Coupons back to profitability, but so far nothing has worked and I've had to take on other jobs to pay the bills. Awhile back I sent an email out to over 1000 people asking for help with Alex's Coupons, and got a grand total of 10 responses, but just in case any of you missed it, here are 10 ways you can help save Alex's Coupons:

If any of you have any other ideas, please email me ASAP. I'm open to anything reasonable. I've also restarted my web and graphic design/Internet marketing business with a new graphic artist partner (, so if you have any needs in that area, please let me know. Okay now that I've given you all the bad news, I should give you at least a little good news.

First and foremost I got remarried last July to a wonderful woman named Maura, who also has two kids (Sophia 15 & Henri 11) and is the graphic artist I referred to earlier! 8-) We're not quite the Brady Bunch, but a family of six is definitely a lot more challenging than a family of four. (Coincidentally we both come from families of six with 3 brothers and 1 sister.) We're currently renting a house in Gig Harbor near Alex and Nick's school. Maura's house in Tacoma has been up for sale since last April, as the real estate market around here is really weak. Luckily the rental market is strong, so we recently made the decision to rent her house, and it looks like there's a good chance her house will be rented soon. Of course it would still be great if the house were to sell, so if you live in this area and are looking for a great 3 bedroom house in Tacoma check it out at

Maura & I on the Oasis of the SeasThe other good news is that I recently won Good Morning America's Get Away with GMA contest and I'm writing this update on the flight home from the grand prize: a free 3-night cruise on the new Royal Caribbean ship "Oasis of the Seas" in Fort Lauderdale! It was a really pleasant surprise when they called me to tell I had won, although I was a little skeptical. I'm from New Jersey where if it's too good to be true, it probably is. Anyway the cruise was a nice break from all the day-to-day stress we're dealing with right now. In addition I was interviewed by our local ABC news station about Alex's Coupons (KOMO Video) and did make a short appearance on Good Morning America last Friday morning (GMA Video). I was in a group of 17 other winners and wasn't asked a question, but at least you could see my face for a few seconds.

The only downside is that it did take me away from work during my most critical time of year. (Black Friday is only 5 days away!) I'll be working non-stop for the rest of this week to get caught up. Last Thanksgiving night I was up until 4am and this year I'm probably going to be up even later, but this time of year is critical to Alex's Coupons. In a typical year Alex's Coupons makes almost 40% of it's income in the next four weeks. With the ways things are going right now, that's probably not going to happen this year, but I'm still going to work my butt off and hope for the best.

Well I think that should bring everyone up-to-date on what's happening in the lives of me and the kids. It seems like the universe still has some lessons to teach me about stress and challenges and I only hope that I'm up to the task once again. I hope all of you are doing well and that you all have a wonderful holiday season. Take care...

-- Todd

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