Who's in control here anyway?

That's the question that I've been pondering these last two and half days that we've been sitting in the hospital with Katherine. Consolidation, the second phase of Katherine's treatment, begins tomorrow--Wednesday. Dan and I have been trying to decide whether or not to participate in a case study for the remainder of the treatment plan, and in a way it feels like we are trying to take control over something we can't really control.

Let me back up just a bit. When we started the treatment, we were given consent forms to sign if we wanted Kateli to participate in the national Children's Oncology Group study. Every child with standard-risk ALL is asked to participate in this study; as it is a means to improve the cure rate (currently 80%) for Acute Lymphoblastic Leukemia. The first portion of the study was standard treatment plus some additional tests to determine specific genetic characteristics of Kateli's leukemia cells. Now we are considering whether or not to consent for her to take part in the latter part of the study, which is consolidation through maintenance. This portion of the study is done to compare the effects, of four different treatment plans or arms for ALL. One treatment plan is standard therapy, while the other three are experimental. The experimental treatment plans are more intensive and therefore could cause more side effects to the child than standard therapy, but also could reduce the risk of relapse which would improve on the 80% cure rate.

The chemo treatment for ALL moving forward is broken down into four phases--Consolidation (C), Interim Maintenance (IM), Delayed intensification (DI) and Maintenance (M). As mentioned, there are four ARMS to the study, in which the above phases are in combination of either standard or intensified/Augmented. The arms are as follows:

SS - Standard C, Standard IM, DI and M
SA - Standard C, Augmented/Intensified IM, DI and Standard M
IS - Intensified C, Standard IM, DI, and M
IA - Intensified C, IM, DI, and Standard M

You'll note that Maintenance is standard on all four arms. SS is standard therapy arm; which has a cure rate of 80%. SA, IS and IA are the three experimental arms. IA is the most intense of the three. Keep in mind that I'm just scratching the surface with the information that I'm presenting you with here. Dan and I have done a little more in depth reading and comparison between the arms of the study and we find ourselves in a tough predicament. It is our desire for Kateli to take part in the study, as she would be contributing to improving the treatment for children in the future. I mean, if it weren't for all of the children that have participated in studies like this over the years in the past, there would not be such a high cure rate for this illness and the prognosis would be nothing but sad. At the same time, our concern is to shelter Katherine from being exposed to too many of the chemo drugs. After all, each drug comes with a LONG list of side effects, both immediate and delayed. To think that there is a chance that our daughter's learning could be delayed, or that she could become infertile are tough things to deal with. It's even harder to consider the side effects of damage to her organs, a heart attack, stroke or blood clots--it's scary!! The catch to this study is that we can't pick and choose which arm of the study to participate in. Neither does the doctor. Once we sign the consent forms and agree, Katherine will be randomly placed into one of the four arms by a computer. Yes, to leave such a decision to a computer is mind boggling. So, I struggle with this! How does a computer know what treatment our daughter needs? What if it randomly places her in the IA (the most intense) arm? Is that too much?? Should we pull her from the study?? Would standard treatment be too little?? Does anyone have the answer? Does anyone know? Are we leaving this up to chance?? Do we go with what a computer tells us?? Some quiet time to think and to spend in prayer and I realize that Katherine's treatment plan is not up to me. It's not up to Dan. It's certainly not up to the computer in itself. There is a greater being behind all of this, Our Mighty Lord. He is the one in control here and we need to give it over to Him and not try to take it into our own hands. Because it is a sure thing that we will fail if don't put our complete trust in Him. I trust Him. I know that He is in control. I give Katherine over to him again and again each day and each night. And still, I'm a bit apprehensive. Is this me, not being a good christian? is this me, doubting our Almighty Father, who has vowed to keep us in His care and love us, and see us through it all. Who promises to not give us burdens we don't have the strength to face. Who says he will not leave us, but carry us through the time when we most need Him. Who am I, to doubt? Who am I in the grand scheme of His plan. So, I will trust. I will have faith that He will reveal his hand in this "random" drawing, and that it will be clear as day to us.

Aside from contemplating all the options, I'm sitting here enjoying some quiet time while Katherine naps this afternoon. I have no complaints. She's had a wonderful day. She's been so happy. She's been giggly, playful and silly. She's feeling great!! In fact, we've hardly been in the room. We've been up and about most of the morning and early afternoon. The playroom has been open, so we've spent some time in there playing and watching other kids play. This morning, I learned that Katherine is really good at playing memory. Granted, we played with only a few cards, and I changed the rules a bit for her, but she was having fun finding the matching pairs! We've also walked around the floor several times. We even took a stroll off the floor and got to ride in the elevator to the lobby to pick up lunch. Kateli was really excited to do that. On the way back up to the room, she climbed the steps from the lobby to the "B" floor and then we rode the elevator the rest of the way. Anyway, all of this to say that she's doing great today! She has not run fevers since Sunday afternoon--that's good. Her blood cultures have all come back negative--that is even better. And her blood counts look exceptional...

• Please pray for me today.
  

• Pray that I will trust completely in Him as Katherine is randomly placed in one of the four arms of the study.
  

• Pray that I will see God's hand in this process clearly, day in and day out.

• Pray for discernment for both Dan and I, as we move forward in this journey.

• Pray for strength and energy for our entire family.

• Pray that we would seek our Lord first and foremost in our daily life.

• Pray that Katherine would feel His presence in her heart; that she would call him Abba!