December 29, 2010

This is the fourth night in a row that I am sitting in front of my laptop, wanting to write an update yet struggling to do so. I am praying that God will give me the words to type so that I can be encouraging to all those praying even though some of what I have to say is probably hard to read.

Christmas Eve- Tom, Gavin and my in-laws (Jo and Ronnie) came to the hospital to visit. Grayson had been throwing up a lot and had entirely stopped eating table food. His white cell counts had also dropped below 500 which means he was and still is neutropenic (no immune system). There were only 4 patients on the entire oncology floor that night so we were able to go out of the room and set up a nice seafood dinner in one of the conference rooms. The nurse Joanne was great at setting all that up for us and tried to make our Christmas Eve family time as nice as it could be in a hospital. We were in a conference room with hospital equipment all around us and some carry-out boxes. Gavin refused to eat and instead ran circles around the table and tried to push buttons on the surrounding equipment. Grayson sat for a little while in his booster but started fussing and then throwing up. Tom and I hadn't even eaten and we had to take Grayson back to the room to clean Grayson up. Our dinner felt like wasted effort. My in-laws were a huge help in trying to orchestrate a family meal and incredibly patient with the reality that it just wasn't going to happen. Anyway, we did get to eat our cold seafood eventually but Grayson was just very sick to his stomach that night. It was sad when everyone had to leave. They all went back to spend the night at my in-laws and Grayson and I stayed at the hospital. I hated seeing my family leave. I also hated the elevator doors that night. They seemed like scissors cutting our family in half as Gavin and Tom got in and Grayson and I stayed behind. Then I walked back to my room to hold my sick baby for the rest of the night.

I have to say that I do feel blessed for every night that I get to hold my sick baby.

On Christmas day ~ Grayson's First Christmas ~ he and I woke up alone in the hospital room and he seemed like his normal self other than the fact that he hadn't nursed much through the night. His appetite had been steadily decreasing since we had started chemo so I wasn't surprised. The hospital has something called Santa's Workshop and Santa comes around on Christmas Eve and delivers stockings full of small toys and then a few larger presents to each of the kids on the floor. I tried to take a video of him pulling the paper off his presents but while I was taping, he puked, so I didn't want to post that one. I did take another of him afterward while he was playing with his new toys. This hospital is extremely generous and we have received so many gifts just because we are on the cancer floor. The nurses told me if we have to be in a hospital on Christmas, this is the place to be because everyone loves to give to the bald headed kids. Anyway, he got some neat toys and this was the last video I took of him looking happy and normal. It didn't feel much like Christmas morning but I didn't dwell on that too much.

Christmas Morning~  http://www.youtube.com/watch?v=Gln__7t4OGo

My sister Andrea and her husband Kris came to visit me and brought a huge Rubbermaid container of snacks for me to have at the hospital. Plus some cool insulated cups from Kris' golf club that I have been wanting for a while. You made my day Kris! Tom and Gavin arrived a little after that and stayed the day with me. That night I was changing Grayson's diaper in his crib and he was talking to me and kicking his feet and seemed happy, but when I went to pick him up, he sort of grimaced and arched his back and he quickly turned blue and his eyes rolled back and he went limp. It was very different from his previous breath holding spells and it turned out he was having a seizure. The nurse was fortunately in the room and hit the code button so a doctor was in the room within 30 seconds. Tom and I just held him calling his name and trying to get him to breath. He was blue for a good 40 second and even the doctors hands were shaking as she put the oxygen mask on him and called for help. He started breathing slowly and his color started coming back but he just sort of whimpered and seemed very different.  He opened his eyes up eventually but still seemed lethargic, sleepy, and confused. They rushed us to a CT scan and x-ray and praise God they were both clean. The doctors still aren't sure why he seized but we are now hooked up to additional machines 24/7 to monitor him more closely. I am sad to say my Grayson has not yet returned to the normal happy baby that was in the video Christmas morning. The seizure didn't cause any real changes in him, but was just the start of seeing outward signs of the disease wreaking havoc on the inside of his body. I held him all night long and Tom stayed with us. My poor Gavin was a bit traumatized because he was in the room during all of this. He kept telling the doctors to "Get off my baby Gwayson!" He'll be fine, but it made me sad that he was there for that and Tom and I decided the hospital room was no longer a place for long visits with my three year old.

The next day Grayson's hair started falling out. He would lean against my shirt and it would just be covered in his bright blonde hairs. He is a baby so the hair falling out wasn't a big deal for his image; it was again an outward sign that he really was sick inside. He had looked so good for so long it was almost hard to believe that there really was anything wrong with him. He didn't want to get down and walk or play with his toys. He just wanted to be held and he just wouldn't smile for us. There were times when he would be looking at us but seemed lost in his gaze. He was very fuzzy but not very loud about it. He stopped cooing and baby talking and was just quiet all day. The nurses told us that mucositis had most likely set in and he was feeling "your worst sore throat times 10". He didn't eat at all that day and they started IV nutrition for him which looks like a bag of milk and a bag of Gatorade that goes in through his central line. They also started him on a morphine pump because the pain would only get worse. They have since changed the drug from morphine to some other narcotic because Grayson was scratching his face due to "itching" for the last 2 days which is a side effect of morphine.

He did wake up one afternoon long enough for Image Recovery to come buzz his head. When you get chemo your hair falls out piece by piece and it was itching him and getting in his face so I went ahead and had them shave it. Here is the video if you care to see my baby's first haircut ~ http://www.youtube.com/watch?v=7HMTjl4l2RE

I taped it because it was a milestone. I smiled in the video not because I was happy about what was happening but because as a mom you provide comfort to your baby. Your tone sets the mood. I didn't want him to be scared of the clippers so I smiled and smoke happily to him when inside I wanted to cry. Not because I care about his hair but because sometimes I still just can't believe my baby has cancer. His hair is falling out because the only way to treat cancer is to poison his body with chemicals. The pain he is feeling from mucositis is worse than any pain I have had to endure and he is being forced to endure it without any means to communicate his pain. I hold him all the time for the majority of the day and night and he just looks up at me with a pained look and helpless eyes. He has no idea why he is in pain or why he is in this room all the time or why he can't see his dad and his big brothers or why he keeps throwing up and feels so bad. It really sucks! (Yes mom, I know you hate that word). I am sure Job had to have thought the same thing when all his kids were killed, his wealth was gone and he was sitting alone with painful boils all over his body. But Job continued to trust in the Lord and so will I.

I had to write about the depressing stuff because if all I ever wrote about was the things I was thankful for during this time, than I wouldn't be being honest. A friend of mine who happens to be a nurse on my floor reminded me tonight that Christ was scared on his way to the cross. He was scared, he was sad, he had doubts, and he cried out to His Father. That is such an important piece of Christ’s redemptive works on the cross because it showed his humanness and complete submission to the plan that God the Father had laid out for him. God has laid out a plan for my baby and for me and for my family and though I feel so vulnerable in my humanness and in the humanness of my baby I know that God is my refuge and I will take comfort in his everlasting arms.