Well today proved to be the longest day we have spent at the clinic thus far. Our day got started when we left at 5:45am to head to MDA with James, who couldn't have anything to eat or drink until after his lumbar puncture (LP). We arrived at the clinic at 7:00 and he got his blood drawn and then got to play in the playroom. We waited a little while and then we were taken back to see the doctor and get his counts. James' counts had recovered so that he could start the next phase-Delayed Intensification
Some things that happen in this phase(which is 60 days long) are:
Day 1-21-steroids morning and night
Day 4- chemo(peg asparaginase) that is injected by 2 shots into his legs
Day 1-8-15-two different chemos(vincristine and doxorubicin) that he will get in the clinic through his IV. Interesting tidbit - Doxorubicin turns pee bright red for 24 hours. Merry Christmas!
Day 1 and 29-lumbar punctures with chemo(methotrexate)
Day 29- we will be admitted to the hospital and James will be given fluids and chemo(cyclophosphamide)-this will be a new chemo he has never had and has some nasty side effects
Day 29-32 and Day 36-39-James will get one shot a day in his leg of Cytarabine(chemo)
Day 29-42-an oral chemo(thioguanine) that James will take every night
After Day 42 they will give his body rest for a couple of weeks so that it can recover. Whew!
We also found out that James' liver enzymes had come back down to normal and that it was in fact medicine related. They will continue to monitor his liver enzymes throughout the rest of his treatment. Please pray that his liver can safely metabolize the medicine--it is so very important for James to take all medicines related to his 3 year treatment to stay at the 95% chance of cure. I do not envy the doctors that have to decide between the likes of potential acute liver failure and relapse of leukemia. Pray for God's guidance of their decisions!
Around 9:30am we were taken to the procedure room for James to have his LP. We returned to the clinic around 11:30 where they began to do his IV infusion of immunoglobulins. That infusion ended around 4:30pm, and then they gave him his vincristine and doxorubicin. We finished up around 5:30 and returned to our home at 7pm-a fabulous 13 hour day!
James was a trooper today-he did everything they wanted him to with little to no complaining. We are so proud of how brave he is and so thankful for his sweet disposition and fun personality. Everybody at the clinic loves him and he loves them!
Please pray for us-we began steroids tonight and continue through Dec 5th. This will be a very trying time for our family because of how the steroids make him feel and act. Please pray for Greg and I to have the wisdom and patience to care for him during this time. We continually thank God for your love and support.
Wednesday, November 14, 2007
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5 comments:
I'm so glad he had a good day today... which made you ALLhave a better day too, I'm sure. I think you are an amazing mother, Joy! Especially finding humor in his Red Pee! You are such an amazing, strong woman. I will continue to pray for James, liver enzymes, everything. Love you guys! miss you!
I'm so glad that today went smoothly! I would always HATE those long clinic days. Whenever I received a LP, I was one of the last procedures. I'm one of the older kids in the clinic, so it's only fair to allow the little guys to go first. I totally agree with that, but my empty stomach doesn't. I know that the steroids will cause some mood changes and a BIG change in appetite, but remember to take it one day at a time. Oh, and the red pee was pretty funny the first time I saw it. I got used to it after a while. Know that you have a team of prayer warriors in Georgia and Tennessee. Stay strong, because y'all CAN do this!!!
With MUCH love,
Katherine
Adrianne was a trooper, too. Four bottles of breast milk, 14 hours without nursing, and only about one hour of being totally ticked about it!!
Granny
What a brave boy you have, Greg and Joy. 14 hours without nursing???? Poor Joy!
He really is amazing!!! But... you ALL are amazing. The visit from Nana, Rebekah and Reid had to have been uplifting. I saw Rebekeah on Thursday but didn't get to ask her about the visit. Always on the run! I think of James everyday and hope for the very best for the little guy. Have a wonderful Thanksgiving and enjoy your precious little angels.
Lori Hamilton Osborne
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