Thursday, April 07, 2005

Concern for the new phase

I'm sick right now and probably should be in bed but I can't go to bed mad, so I type. I get more emotional when I don't feel good so that's part of it, but this is still a stressful gig that we are in, this Leukemia thing, and maybe I've just been hiding from the stress of life. Maybe I'm not so mad about our situation but instead, all the things that I have to deal with because of it, pretty selfish really, but that's the truth. Basically, I really don't want to start this next treatment with Abby. Once again, I'd just like to be done. She's done so well on this last phase and I just want it to last. I want to continue to live in my world of pseudo control and pretend that all is well. Part of it too is that I don't feel like I have anymore emotional energy to deal with more of the unknown. And that is what the next phase is for me, the unknown.

The phase that Abby starts this coming Tuesday is called Interim Maintenance, a fairly restful time for the body prior to the final big push called Delayed Intensification, DI. During DI they open up on her again with both barrels in hopes of eradicating any remaining stubborn cancer cells. That starts in 2 months, start praying now for that one. Anyway, this phase that we are about to enter is the experimental part of the study that we are on. The thing that they will be studying with Abby's group is if High-Dose Methotrexate will attain a higher cure rate for kids with high-risk Pre-B ALL. This method has had good results with T-cell ALL so they want to see how it does with other types of ALL. This is a good study and I'm glad to be on it but also concerned for Abby.

You see, one of the rare side-effects of high-dose Methotrexate is short term and long term learning disabilities. As a teacher that is hard for me to swallow. I want the best for Abby, and education is important to me. Thus my fear of my daughter having a disability because of a treatment that she gets. Now the standard treatment isn't much different, they still give Methotrexate, just a lower dose. Some of the research shows that learning disabilities were from people that received extremely high doses like 33g per meter squared. Abby's high does will only be 3g per meter squared, so really not as high. Also, most of the people that have gotten high-dose methx, even as high as 33g have done just fine.

If I wanted to, I could pull her from the study because of my concerns, but that seems to lay a big burden on my shoulders, a burden of responsibility for how it all plays out. I mean who am I to say, that this is good or bad. For all I know, this may be the only thing that will truly cure her, I'll never know. So, she got randomized to this arm of the study, and we are going to stick with it, anxieties and all. Just another uncontrollable factor in thing called Leukemia treatment.

Please be praying for this next phase. For no side-effects and for peace. Thanks!


Anonymous said...

Definitely praying for Abby and her family too! Hang in there!!!!

Anonymous said...

We continue to pray for Abby and your family.
The Nicholsons

Anonymous said...

I've never met your family
Know about Abby via Natalie
and her efforts. I pray
for Abby everyday.
I will add you to my prayers
as well.