I am so excited to report that we have only 4 more clinic days left! He still will have to continue on oral chemos until May 15th but clinic day will end prior to that. We have to plan for his port removal and other things.
I didn't tell you yet here, but we did that blood check 2 weeks from last clinic day because they wanted to increase his chemo. Do you remember me saying we have to recheck? Well, it was at just the right level that they made a small increase, thankfully he is tolerating that well.
Today things were similar in that they only increased his prednisone dose, but no chemo increase. They weren't high enough for that. This med, prednisone, can have some serious side effects like vascular necrosis which is death of blood flow and tissue in the joint areas in boys his age. Sometimes these kids are doing well or look good but this is the war raging inside of them as their bodies try to cope with such attacks on their system. Some of the boys I know have serious limps and can't even raise their arms above their heads.
Definition
By Mayo Clinic staff
Avascular necrosis is death of bone tissue due to a lack of blood supply. This can lead to tiny breaks in the bone and the bone's eventual collapse. Avascular necrosis most often affects the head of the thighbone (femur), causing hip pain. But it may affect other bones as well.
We made it out of there in decent time but had a horrible wait in the pharmacy. since they did not even start the new med order until after I came down to get it, then taking forever. Normally I pre-order all my refills and by the time I get down to the very slow pharmacy, they have it ready and we can get out of there pretty quick, but today was a real trial. This time though, the meds we needed had to be re-ordered by the doc, so I had them send it in ASAP, reminding them how slow they are down there.
They were remodeling the normal pharmacy so we had to go to another one. I used all the strength and pain free moments my feet had on getting us lunch today, so we took the little golf cart thing they have to pick you up , which was so nice. However, when I got there they hadn't even started filling his med order, telling me they have no way of knowing when it was sent! I suggested kindly that there be an easy way for clinic patient orders to let you know that they will be right down. If I had known they wouldn't start right away, I would have called them. Ugh. We keep learning these little things.
Since I couldn't go walking around, we were stuck there. Long lines, people coughing, boy tired, leaning on me, resting. We needed water badly. I was patient as people answer their phones talking loudly like no one else is in the room. The lady behind us complained loudly with a few ____ words despite my young child being there. I was sorry her doc didn't even get her order in, but most especially when her meds were filled before ours even though hers were called in after us and 'they were working on ours' so they said!
I must admit that by the time they finally called us I was a bit tearful. It was a long wait and I was tired. I thank the Lord for the ability to stay calm in this stress which I cannot say would have happened before I new Him. I was fine. I wiped my tears and we headed home.
I can't wait for May!!
Also, on a lighter note, don't forget an easy way the whole family can help others in need is to save those pop tabs. Let me know if you want me to take some up for you. The Ronald McDonald House uses these full aluminum tabs to raise money for their house where we and many other families have stayed for a very affordable price while their child is in the hospital. Also, if haven't lately, please go give some blood. When you are do, you are helping the many kids that are in treatment fighting cancer. We appreciate it greatly!
Many blessings to you all!
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