Sorry this is so long in coming. Life is so full and demanding and it’s hard to clear my mind and put down a post which makes sense. So much has happened, and I know I’ll leave a lot out. First of all, I want to thank everyone who sent John birthday cards. The outpouring of love meant a lot and thank you especially to the Weirton, WV and Burgettstown, PA area people. A lot of people heard of John through Aunt Karen and we thank you personally for spreading the word about John so people can keep him in their prayers. I know that this simple web log reaches 100’s of people a week because I can check the statistics online, and that statistic alone comforts me knowing that people care. When I hear from you, by way of emails or letters, that can encourage me so much to keep on fighting the fight. Some people have commented on the “comment forum” being closed. We had to close it because we had to delete up to 100 spam messages daily. The only way to do this was to open them and check the contents. Sorry for the inconvenience. Now, to update you on John.
John’s 19th birthday was Wednesday, September 28th. He had an appointment with the Endocrinologist then an appointment in the Stem Cell Clinic. He was having problems as soon as he woke up. The nurses in Stem Cell had planned a party for him and he had commented Tuesday that if he had a suit, he would wear it to the party. The next day he didn’t even feel up to changing. At the Endocrinology Clinic we discovered he had a fever of almost 101. After the appointment there his temp went up to 102.6 in Stem Cell. So, of course, he had to be admitted on his birthday. The nursing staff was very sweet and compassionate. They were so sad; one looked to be almost crying. Nevertheless they had pizza and brownies and came in his room singing “Happy Birthday!” He had planned on doing the Chicken Dance with everyone, but he had to give a rain check.
Monday night he started having problems with his big toes, believe it or not. By Wednesday they both were infected and appear to have grown in toenails. Chemo can wreak havoc on your nail beds and I think they have grown some horizontally. He recently found a couple of hairs growing between his cuticle and nail on his finger. Anyhow, the theory at this point is that the infection has caused his fever. He was put on antibiotics, Fortax and something else, and within 2 days he developed C-Diff again from the antibiotics, which causes bad diarrhea and cramping. They were going to let him go back home yesterday, but his temp went up to 101.1 as we were waiting to discharge him.
The diagnosis of hypothyroidism was made on the 20th and he started on the Synthroid then. Within a couple days he started feeling better and so many changes began to occur. His skin started to heal, finally! He began eating and soon was eating 3 meals a day in addition to the g-tube nutrition. Before he was getting his nutrition through the tube and eating maybe one very tiny meal a day, if that. He started daily walks outside. He got strong enough to walk up to the clinic and down to the parking deck when through at clinic. He didn’t need the wheelchair anymore. All this within a week of being on Synthyroid.
On his b-day he was too sick to walk much and his toes hurt so bad! He continues to have bad shakes and chills, with or without fever. This has been happening for months now. The doctors don’t have any answers for it. My personal theory is that the chills are connected to his skin healing.
He has had the same doctor for over a month and now a new one has come on rotation. The main doctor had been out of the country and another is one maternity leave. So this particular doctor had an unusually long rotation. I felt he did a good job. But, maybe a fresh pair of eyes will be advantageous.
I have been sleeping at home. When John is home nights are disruptive because of the feeds and various reasons. John and I are usually up 3-6 times a night. Each of the past 3 nights I slept 11 hours. I feel somewhat restored.
Some of John’s friends are coming up soon for a party for his birthday. I get some pizza and they’ll have cake and I’ll make myself scarce. I’m so happy he’ll get to be around his peers.
I’ll try to post soon! Keep praying!
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