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!

Sunday, April 03, 2005

Love Wins

Just was listening to a Christmas sermon by Rob Bell, ya I'm a bit behind, talking about who Mary was when the angel told her that she had the savior in her womb. She wasn't this little frail girl but more a woman that knew that that a new kingdom would be coming and that the oppression of Caesar and Herod and such would go away soon. Not by brute force, not by fear, or even by sheer numbers but by the love that that little baby would bring to this world.

I don't know why this all struck me so much but it did. Maybe it was because Mary knew how to trust God in the midst of hard circumstances. I really desire that more, I really desire having that kind of trust in the Lord. I also resonate a bit with Mary, I don't know why I always seems to resonate with these females in the Bible but I do. I think I know a little bit what it may have been like to trust in a plan that seems so odd, that seems so hard at times, and that yet is so brilliant. I can't say that I know why Abby has Leukemia or even why we would be the ones that get to be part of this journey with her. She's no Son of God but she is my little angel. And probably like Mary, I wonder how she brings so many smiles to this world, so many laughs, and so much peace to the hearts of the people that she comes into contact with.

Just last Thursday I saw yet another instance of this while in the hospital. We went down to CHOA, our cancer doc's practice, to get Abby's blood run, an exam, and see if she would still need a platelets transfusion. Abby runs into the clinic and immediately brings smiles to the receptionists faces as she prances around the lobby squeaking out something about the Dory fish in her high pitched, cute-as-a-button, little girl voice. Soon after the vitals nurse checks her weight, temp, blood pressure and draws some blood for testing. Abby jabbers away the whole time telling the nurse what she needs to do next. The nurse, smiling the whole time tells me how much everyone fights over who will get to take care of Abby and how since Joanne isn't there today that the other nurses will get a turn, Joanne always pulls rank on the younger nurses so that she can have Abby as her patient. Soon after the stats. were taken and while we waited for the blood to be run, we moved to the recliner area and played a quick game of Candy Land, I think she beat me, I can't remember. Anyway Dr. Smith came over and pulling his seniority card too informed Sara, the nurse practioner that he would be seeing Abby today, with an "I got here first" sort of smile on his face. He also, informed me that Abby was their favorite.

It's just like that, time after time, Abby's smile, little voice, and peaceful attitude seems to be a light to people, especially people in these medical professions. As we walked down the day procedure ward hallway, on the way to get platelets the whole group of nurses, 6 to 7 in all, stopped what they were doing, turned to watch Abby, holding the hand of our nurse mumbling something about how she liked the hospital how the beds that go up and down, and of course they all smiled. Big grins, and she just smiled back. She's always had a great smile. From a little smiley 3 month old to a just over 3 year old, her smile rarely fades. The nurse at the hospital also told me how Abby had won the hearts of all the nurses the last time she was there too. I don't think it is the smile that really gets me, or all these nurse and doctors that have commented on her, I think it is just the expression of the love that is inside her. Abby truly is a little angel, my little angel. She truly does, in her little 3 year old way, really want to brighten up people’s days. I don't think she understands it yet, or does it in some co-dependent way like we are more prone to do; she just does it because that's who God made her to be. A little loving 3 year old, who somewhere in the depths of her sole, without ever have being told, knows that regardless of the outcome of her trips to the doctors, regardless of the side-effects of her meds, and regardless of the outcome of this whole crazy disease that love still, and only will win.

Smile on Abby :)