January 26, 2011

Today I just want God to have all the glory for the great things he has done.

Over the weekend we were told that if Grayson's liver numbers didn't improve/come down by Monday morning we would have to start another round of high dose chemo that targets the memory T cells. The weekend was rough because Saturday his numbers increased and then Sunday they stayed the same. Just to give you an idea a normal total bilirubin is between 0.8 and 1.2 and a normal direct bilirubin is between 0 and 0.4. Saturday Grayson's total bilirubin was 6.1 and his direct was 5.5. Sunday everything stayed the same. So we were nervous Monday morning when labs were drawn. I asked for the results at 2:00am and when she brought them to me a little after 3:00am it showed a slight decrease in both total and direct. I was happy but not sure if it would be enough improvement for the doctors. When they rounded they told us they were happy with the progress and decided to wait and see what a few more days of being on the Tacrolimus would do. Tuesday morning his number took an even bigger drop down to 5.0 and 3.7. This morning his total was 3.4 and direct was 2.2! Very good progress. Although we are not in normal range yet, the numbers are trending down and that means NO CHEMO!!!! YAY!!!

We also met with the eye doctor because Grayson's lower lids were sagging a bit which could be a sign of chronic GVH but the doctor said it wasn't GVH just some puffiness and sagging from the chemo or steroids. He said his lids will look normal again it will just take some time and healing. This was a major relief!

Grayson has been eating pretty well. The steroids increased his appetite and his willingness to put food in his mouth so he has been eating mashed potatoes and little pieces of chicken, cheese sticks, applesauce and any junk food he wants. In the family lounge on the 8th floor there is a piece of paper taped to the door and the title is "You know you're the parent of a kid with cancer when...", It goes on to list 101 items and one of them says "You are thrilled that your child ate cookies for dinner". It is so true because even the doctors encourage us to give him whatever he is willing to put in his mouth and swallow. In Grayson's case the doctors told us they were shocked at what he was eating because they assumed he would have more problems because of his age. Normally kids that go through a BMT, especially children have negative associations with food and eating because of the intense pain they had with mucositis. For older kids they can remember liking food, but the babies tend to have long-term problems with eating. The doctors have decided to start weaning Grayson off of the steroids since the Tacrolimus seemed to be helping the GVH. We will see what happens to his appetite and eating habits once the steroids are out of his system.

I think that weaning off the steroids could be good and bad for Grayson. There is no way of knowing whether the decrease in bilirubin was due to the Tacrolimus by itself or the combination of the Tacro and steroids together. We will see as he weans whether the GVH flares again. One good things about coming off the steroids is that I will hopefully have my happy, mellow baby back again. Steroids cause major mood swings and fits of rage and I found it both disturbing and comical to watch my 1 year old glare at me and start screaming till he was red in the face over nothing at all. Other times he would fall apart in a puddle of tears. I am hoping that this isn't a preview of his teenage years ;) The steroids have some other yucky side effects too that I will be glad not to have to worry about. Anyway I am praying that the Tacrolimus is all that is necessary to treat the GVH and that the lack of steroids won't cause his skin or liver condition to flare. Today he had some good moments. Here is propped up on his elbow watching Sid the Science Kid.

I am going to try to get Mason to sing the song Sid sings to his mom each day: "I love my mom, my mom is cool, but now it's time for having fun at school". Is it too much to ask a 10 year old to sing that before school everyday? ;)

Grayson is also taking his feeds through his NG tube very well. He is up to 20cc per hour of breast milk and sometimes pediasure. As this amount increases the IV nutrition can decrease which means less stress on his liver and a happier digestive system. They are tossing around discharge dates again and the latest we heard was that Monday we will get to move to St. Casmir's. This is the other housing facility we will be in for the next couple months until Grayson is well enough that we can go home to our house. If he can take enough food by mouth and through the NG tube, then we won't have to go home on IV nutrition which means he won't have to be hooked up to a machine all the time when we leave. That would be optimal but we will deal with a machine if we have to as long as he is healthy and safe.

We had our first light therapy appointment today which went well. It is essentially a stand up tanning booth with UVB lights all around you. Grayson got a special pair of goggles and so did I which made for a fabulous photo opportunity which my lovely nurse Sam was too eager to capture with my phone! Fortunately the amount of preparation took much more time and effort than the actual time in the lights. We were in the lights for exactly 33 seconds. I had to turn him around at about 15 seconds to get both sides. I was glad because the booth was very cramped and if we had been in there any longer I am sure he would have peed on me.

You know my goggles are going to be the next BIG fashion trend!

The light therapy was in the outpatient center so we actually got to take Grayson off the 8th floor and out through the main hospital. It was kind of neat because it was the first time he had left the unit since we arrived on December 12. His eyes were huge and he was pointing and babbling under his mask. It was a pretty exciting day for us. We won't see the effects of the lights for a couple weeks and this will be something he will have to keep up for several months 3x a week. In the meantime I have been giving him soothing oatmeal baths and slathering him in aquaphor every couple hours.

I have to laugh because even though we may leave Monday, we will still be spending the majority of our time back in the hospital. At least we will have a place where my other two boys and Tom can come and stay on the weekends and we can spend time altogether again. That will be so wonderful!

I continue learning my lesson that worrying is superfluous because prayer is so much more effective. Time and time again God has met our needs and answered our prayers. He continues to prove that despite the odds the doctors give us, He is in control. I have peace knowing that I can hand my worries over to Him because He loves Grayson even more than I do and is taking such good care of him. I feel him continually saying "Don't worry, I got this!" All I really need to do is just continue to spend time with and love on my baby which is such an awesome gift. Thank you all so much for your prayers. God is so faithful to hear and answer them.

Here are some other pictures and videos I thought you all would enjoy. The grandparents visit regularly which I am thankful for because they bring me good food!

Pop Pop Brown

  

Grandmom Brown

Pop David

MeeMom David

Grayson's Team of Nurses:

Alex

Kasey

Sam 

Suzanne

Grayson LOVES his nurses!