Unfortunately, a whole season passed and I didn't blog at all. I don't have a lot of positive news except to say that the kids are happy and healthy, and we are so thankful for that. On November 15th, John's dad was told he was in remission. All the tumors had gone away from the esophagus and the liver. We were all very ecstatic as you can imagine. Dr. Barnett told him to go enjoy life and not think about doctors or cancer and come back in 2 months for a blood panel. The plan was to have PET scans every 3 months at least for the first year. It had been 3 weeks at that time since his final Chemo treatment - Dr. Barnett told him in 2 more weeks, he would start to feel like his regular self again and have so much more energy. We all looked forward to this for him. We were thinking "Man, we could go to hawaii or Seattle!" Two places he always wanted to go. Just ask soon as he felt like his old self again...then we were going to book a trip and cherish the time we'd been given. Well.....he never got more energy and he was never back to his old self in that regard. He had been having a lot of weakness in his legs - we all thought this was him just regaining use of his muscles again after resting so much during all the months of chemo. On December 1st, he fell and really screwed up his knee. After about a week, we all finally convinced him to go to the ER to have it checked out since it was so black and blue and to make sure there was no blood clot. On December 12th, we got the call that they did a CT scan of him and found several (~8-10) tumors in his brain. Two really large ones and at least one was bleeding. they immediately started him on steroids and Dr. Barnett planned 3 straight weeks of Whole Brain Radiation Therapy (WBRT). Christmas came and went somberly. We had to still be merry on the surface for the kids but it was hard. On January 13th, John and I both talked to him on the phone and his speech sounded awful. This alone made me think things were not going well. His MRI was scheduled for January 20th but we weren't event there yet. John's mom told us he didn't look well.....he needed to go to the ER. He was severely swollen and seemed really out of it. We finally talked him into going to the hospital and the next month was spent in and out of the hospital. They couldn't pinpoint what was wrong, but basically, it seems he had all-over problems probably being caused by the brain tumors. We finally got hospice set up on February 8th and he got to go home with a personal 24/7 nurse on the 9th. He went downhill pretty fast, and we got a call from the hospice nurse on Wednesday, February 15th to bring the kids to see him - that it would probably be the last time to see him coherent. We rushed over there that evening, and I am so glad we did. He had moments of opening his eyes and was able to say "I love you" to Noah and Grace and all of us. John and I tossed and turned all night............He died the next afternoon on the 16th at 3:30 PM. The funeral was on the 22nd. I don't know what else to say except that it's still painful to think about. i mostly feel sad and upset when I look at my children. Why do they get robbed of his love? He loved them so much and they brought him so much joy. Noah flew his first kite with him and hit a tee ball for the first time with him. Why does Noah (and Grace) get robbed of more memories like that? Christmases, Easters, birthdays.........
The Monday after the funeral, John had surgery to repair his shoulder (instability). It has been a rough month since then. The worst part is the doctor said it was much worse once he got in there and John is going to need another surgery for a different, more aggressive procedure. This is scheduled for April 23rd. Now our latest blow - John was diagnosed with strep throat AGAIN. he just had it the week of his dad's death. We can't catch a break it seems!!!!!
The kids are a joy though and I love watching them bloom into their individual personalities. We are busy planning Noah's birthday party on April 14th. i wish Nana and Papa could come but they are going to visit my grandma in N.C.
Grace was initially evaluated for a speech delay and they recommended an evaluation/consultation with BVSD for a program that can help with therapy. it is all covered by the school district, so I think we are going to go ahead and do that. We really don't think anything is wrong but since it is offered for free, we might as well.
I hope to stay up to date with this again! Sorry, it has been a rough 4 months.
No comments:
Post a Comment