This photo is the first one of our family “after”. Our brave smiles break my heart, but the strength that would carry us through is there also. It will be 9 years ago tomorrow.The truth is, eventually you can learn to live with anything…because you have to. In the world of cancer things move along at a breakneck pace immediately after diagnosis. It can’t wait until you get your mind around it, and there is not much time to mourn your life, which has just imploded. There are tests to be done, procedures to be endured, medicine to be swallowed or injected, arrangements to be made, and in our case other children to be considered. And always, always, the silent specter of cancer in the corner of every room you go in.
In Childhood Leukemia, the first phase of chemo is called Induction, and lasts 29 days. At the end of it the bone marrow is sampled to see if the chemo has “induced” a remission of the cancer. Everything hinges on that, and no future can be envisioned without that information. Each week brings different medicines and treatments. I learned to only plan a week ahead, and it ended up being a pretty good way to not lose my mind. Jackson didn’t want to think about the clinic when he wasn’t there, so we began to wait until Sunday evening to talk about what would happen that week. It ended up being a pretty good way for him to cope too. The rest of this post is from our Caring Bridge Journal entries about this time.
October 11, 2008-Caring Bridge Journal
“Yes, though I walk through the valley of the shadow of death, I will fear no evil, for Thou art with me…”-Psalm 23:4
Good morning everyone,
I hope you enjoyed the nice weekend. The big boys went to church with Jamie and jack and I went to the park for a little while, but he got tired and we had to come home.
We celebrated jack’s last dose of Prednisone by grilling hamburgers tonight. He will not be allowed to eat in the morning. He is already worried about that.
Tomorrow we head to Birmingham for a lumbar puncture and a bone marrow biopsy. These will be tested for the presence of leukemia cells, and see if the chemo has put him into remission. The doctors will look at it there and will be able to tell us something, although it will go to another lab for the final report. The possibilities are: complete remission, partial remission and no response. Because his day 8 bone marrow was completely clear, making him a “rapid, early responder”, it bodes well for remission. These results will determine the rest of his course.
I think Jamie and I have both been feeling anxious these past few days. I have had trouble sleeping and have felt a little out of it. Even when you know God has you in the palm of His hand it is hard. It is an odd thing to walk into a room with a doctor and know that whatever he says will direct the course of your life. Oh the power a sentence can have.
I have spoken with all the boys and they know what is ahead tomorrow. I think they are doing well with it. I am so proud of them.
I prayed for all of you today. You cannot know what it means to have your love and support. I hope you never have to.
God bless you!
October 13, 2008-Caring Bridge Journal
From your lips to God’s ears:
More later, we are headed home!
October 14, 2008-Caring Bridge
“Our God is an awesome God, He reigns from Heaven above.
With wisdom, power and love, our God is an awesome God.”
Good morning everyone,
I hope you will forgive us for not posting an update last night. We both agreed we were EXHAUSTED. The tension of the day caught up with us and we could barely move. Think deflated balloons.
Thank you so much for your wonderful posts and the way you shared our joy. Obviously, it is the best news we could hope for. Jack feels great and his immune system is in good shape and will stay that way until we go back on Monday. We are hoping to ALL come to church on Sunday, and Jack is definitely hoping to come to Fall Festival at church on Sunday night.
Now, what comes next? Remission is not cured. It means we have induced a remission of the leukemia, hence the name “Induction chemotherapy”. Research has shown that most kids would not stay in remission without further treatment, the leukemia could come back or “relapse”. Jack is at more risk for this because he has T-cell ALL as opposed to Pre B-cell ALL, and because his WBC count was so high at diagnosis. He is considered “Intermediate Risk” but not “High Risk” so he will not have to have as much chemo as those kids.
So, starting Monday we will move into a new phase of treatment called Consolidation. It will involve some of the drugs he has been on and some new ones. It will be a two-month cycle. He may feel pretty bad and hi immune system will be even lower than it was before.
After Consolidation, he will move into Interim Maintenance, then Delayed Intensification and finally Maintenance which will last the remainder of his 3 ½ years of treatment. At some points during these treatments he will be able to do normal kid things. We are told that he should be able to go back to school before the end of the year.
So, now you have completed Childhood Leukemia 101. There will NOT be a test! If you feel confused, you are not alone. I had to consult my notes several times while writing this. I am trying to process our new road too, but like everything else so far, if I just focus on what’s right in front of me, and stay in today, I do fine.
We are still eating elephant…one bite at a time.
As I wrap this up I want to share with you something else that happened today. After our sweet doctor gave us our good news, he went across the infusion room to give another family theirs. I could not hear the words, and didn’t try to, but I could see that their news wasn’t as good as ours. My heart just bled for them. All around us are children in worse situations than ours. We are so thankful, but just so you know, God is still God no matter what he had come and told us. I turned it over to Him that day in Dr Phillips office and have not felt the need to take it back.
I hope you have a great day, and if you need me look on the ceiling!