Sunday, February 28, 2010

Happy Day!

Amanda just turned nine! Wow. She made it! When she was originally diagnosed with Leukemia and hospitalized one of the first things she demanded was no hospitals and no blood draws on her birthday. Mission accomplished! At one moment on her birthday I looked at her smiling and realized how many times she's been sad this past year. It was so rewarding to see her enjoy something she has looked forward to so much.

A fun birthday play-date with cousins

Perhaps mom is more happy than Amanda to celebrate such an important milestone.

Yes, she was spoiled. She deserved to be.

As our family gradually enters back in to society among an exceptionally bad cold/flu year, we have been dealing with our fair share of bugs. Amanda is doing an exceptional job with her new sanitation skills. She reminds us to Clorox items and knows when and where to avoid germs. I am so proud of her and what she has adapted to. She no longer complains about wearing masks like she used to. Unfortunately she has not gone unscathed. I can tell when she's fighting something. She gets really pale, lethargic, and her head aches. She's doing a wonderful job at communicating to me her physical limitations and fortunately she's avoided any real nasty bugs for several weeks now. Her weekend chemo dosing still remains tough on her little body and school usually wipes her out. But she is happier. Her birthday greatly added to her health and happiness. Happy age nine Amanda!!!!

Friday, February 12, 2010

Staying Positive

Despite feeling run down most of the time and very out of sync adjusting to a new phase of life, expressing gratitude fuels my optimism. And I have good reason to try and stay positive.

Amanda's birthday is coming up. Need I say more. What an honor it is to have it granted to us again. She is of course very excited. She is also feeling better once again. I continue to be amazed at how quickly she bounces back. She is scheduled to finish chemotherapy treatment in July of 2011, so long as the cancer doesn't relapse (which she is low risk for). I originally thought it was November 2011. I was so excited to hear an earlier end date to her treatment. Although she still has 16 more months of treatment and five more years of close monitoring, there is now a light at the end of a very dark tunnel.

Erin tested negative for her food allergies. You wouldn't think that garlic and coconut would be that hard to work around, but I can assure you that they derive into about three pages worth of chemical compounds that exist in just about everything processed and cosmetic. She will always have various allergies and intolerance's, but her doctor is optimistic that these two are behind us. I still can't figure out what to feed her. She's rather leery of her newly expanded diet. But she can finally eat the salsa and Spaghetti'os that she has longed for. And I no longer have to banish Amanda to her bedroom to eat forbidden food.

Will is doing great. His blood clot is almost completely gone. One more follow-up visit in the summer should end this medical chapter of his life. Our hopes of getting him to weight one pound and make it to 26 weeks gestation are becoming a fading memory replaced by a happy and active five month old. Much to the surprise of his doctors he is doing everything a baby his age should just at half the size. He is adored by our family and the majority of the time is a delight to take care of. He continues to bring much needed joy into our home!

Thursday, February 4, 2010

Poor Thing

Amanda had a difficult treatment day yesterday. It started with not being scheduled at clinic despite being told we had the first appointment of the day. Her appointment seemed to go to a worthy recipient and instead we had to hang out for a few hours without her being able to eat or drink before her lumbar puncture. Since we have yet perfected a treatment regiment to prevent her massive headaches following the procedure I agreed to try a different anti-nausea medication. Long story short, it was a big mistake. We traded in the massive headache for vomiting every 12 minutes for several hours. I know that misery well and felt so bad for her. She didn't complain or cry, just puked and became increasingly lethargic. "This isn't the usual reaction" was the comment made by the doctor. I'm getting tired of hearing those words. And of all the days for home health to be four hours later than usual with her hydration pack. Once drugged (IV benadryl may become our best friend), she slipped into a very restless sleep and soaked up the fluids like a sponge. She has five more of these procedures left (so long as she doesn't relapse). I want so badly to find a way to prevent it's nasty side-effects, but am afraid that we'll perfect it too late or not at all. Sometimes with cancer you just have to painfully accept what's out of your control. On the bright side, today she is quietly playing, with no headache, and acting like it never happened.

On a lighter note, I need to put a plug in for Amanda's cousin, Benjamin. He was just highlighted on the make-a-wish web site for Feb 1st. He's been a great inspiration for us to hang in there!

Speaking of make-a-wish, many have asked if we plan to have her participate in the program. We all eagerly look forward to it for her, but after a week like this one we are reminded why we have chosen to hold off a while longer.

One last comment; thanks for the water drinking ideas. I met with her teacher about it. I think we have a pretty good plan in place that we'll try along with suggestions to try different water bottles.

Monday, February 1, 2010

Before and After

"How fragile we are" - Sting

A chaotic life and dying computer modem has limited my ability to blog. In my mind I've already published two other posts outlining her science day (which I'll just post pictures below) and feeling a bit more optimistic (which was a fleeting moment). I had this gut feeling Amanda was going to decline again. She had a mild cold last week - no big deal. But trying to get her to drink has become a huge challenge, especially when she doesn't feel well. She earns an allowance by drinking, but that doesn't seem to be enough motivation to get her to remember. It's not realistic for me to follow her around all day with a straw shoved in her mouth. It caught up to her Saturday night and the migraine hit. And they aren't normal migraines. They are cancer migraines. They are much worse. A combination of her Methotrexate dosing and not enough fluid intake makes for a pretty toxic little body. Once again, screaming pain, throwing up several times, and lots of crying. I'm getting better at distracting her from the misery. But it still remains an exhausting ordeal for the both of us. Any suggestions to get her to drink more, especially at school?

During her migraine and then 12 hours later.

As for science day; she enjoyed a trip to the planetarium. Our first big outing in over a year! She loved it. The next day was an ice skating field trip. I really thought she wouldn't fare well. She proved me wrong and has been begging me to take her again.
She loved learning about the moon, planets, and constellations.

Here's her science fair presentation. I'm amazed how how much darker her hair is coming in now and very thick!

Erin's watching me and asking where her picture is. I'm not in the mood for a tantrum, so here's one of her going to school.