January 19, 2011

I feel it necessary to add a disclaimer because it is now 2:00am and I am very tired so my writing may have typos or grammar mistakes. Sorry about that ;) Hopefully it all makes sense!

Today was Grayson's first birthday. We weren't able to celebrate the way I would have like to, but I am thankful that we were able to celebrate this day at all. Back in November when we were first diagnosed I feared that Grayson wouldn't make it to his first birthday. God was and still is stronger than my fears and Grayson is still here and doing fairly well considering what he's been through. We have had some setbacks this past week and that is why I haven't written too much recently.

Grayson has developed a more sever skin rash due to Graft versus Host disease (GVHD) and he now has GVHD of the liver which is not good at all. He started steroids which are what they use to treat GVHD of the skin and it can sometimes work for the liver. They also want him to do light therapy for his skin rash which is like going to a tanning bed. I will cover up and hold him inside a box of UVB lights. I am not sure how he is going to handle this but we will deal with that in a few weeks when it starts. His skin breaks down very easily because of the GVHD and it itches like crazy. Please pray that the steroids cure his GVHD of the skin quickly because he is on so many medications both IV and topical to help with the itching but they aren’t working. I have to put socks on his hands because his entire body looks like he got into a fight with a cat.

The doctors aren’t sure right now what we will need to do in the case of his liver GVHD. He is on steroids which in rare cases have cured the liver GVHD but in most cases they require a long term medication and steroids are only short term medications due to their side effects. Please pray that the steroids will normalize his bilirubin and keep it normalized so that no other medication will be necessary. He also had a lot of abdominal pain after his biopsy yesterday but they put him back on the narcotics which helped by making him sleep all day. He also got an NG tube yesterday (a small tube that goes in through the nose all the way down into the stomach). This allows Grayson to get some food into his stomach without having to swallow it. He is taking the feeds fairly well although he threw-up 3 times today. It is very important that he start eating and even though he has taken a few bites here and there he is just not interested to warrant taking him off the IV nutrition. The poor child hasn’t eaten in a month but you would never know it to look at him. He is still just as fluffy as ever.

During the biopsy they went ahead and did his first bone marrow aspirate. This was the first time they looked at Grayson’s marrow to see whether Gavin’s cells have engrafted. We got very good news for his birthday that Gavin’s cells have in fact engrafted but we do not know yet what percentage of the cells are Gavin’s versus Grayson’s. The best news is that all of the cells in the sample looked normal and healthy! Praise Him, Praise Him, Praise Him! This is very promising news and we should have a breakdown of the percentages by the end of the week. We will have one of these done at day +60, +90, +180, +3??, and +7?? post transplant. If they are all clear after the 2 year make, the chance of relapse drops significantly. Again this was the first of many, but at least we are starting off with some excellent news.

Grayson was awake enough this afternoon for the hospital staff to celebrate him. The doctors and nurses came in and sang Happy Birthday to him and they brought him presents and two cakes. One cake was for Grayson to dig into and the other for his family to eat. Of course I would up with the entire sheet cake sitting in my room with no one but me to eat it, so I gave it back to the nurses who were more than happy to eat it for me.

I will post some pictures and video of the staff bringing in his birthday surprises. The staff on this floor really is a God send because they really love my baby and take such good care of us. Ms. Lizz, the child life specialist decorated his door, bought all the party stuff right down to the “My 1^st Birthday” napkins and plates. She thought to get two cakes and just did so many other little things to try to make his first birthday special even though we were here in the hospital. Thank you God for Ms. Lizz and her kindness.

Please continue for wisdom and clarity in the diagnosis of each complication or condition, for effective treatments and for a quick recovery.

There were other reasons that I did not write last week. I was struggling more last week with hospital living than I have any other week before. My cousin who had a baby in the NICU for 70+ days had told me that dealing with this sickness would be like running a marathon rather than a sprint and we need to pace ourselves. Last week I felt like my legs were kind of giving out on me because I was tired of running this marathon. I know that I am here for a reason and I know that God is working in me and through me during this time, but I miss my regular life. It has been 6 weeks since I left my house, my husband, my kids, my church, my friends, and everything else that screams home and comfort. I don’t like that the hospital life has become my new “normal”.

I miss my husband and my kids desperately. I miss my bed and curling up with my husband at night. I even miss the middle of the night when our bed would go from having two people to four people. Which meant no sleep for Tom but at least my babies were snuggled up close. I miss the sound of Tom’s keys in the door when he got home from work. The kids and I would race to the door to welcome him home with hugs and kisses. I miss hearing their voices, their silliness and their giggles. I want to take Grayson home and be a family again. I know that living apart doesn't change the fact that we are a family but it does make me long for the days when we can all be together again. I keep telling myself “just a few more months”. I know we are strong enough in our faith and in our relationships to get through this but I can honestly say that I took my life and some of the people in it for granted and I didn’t realize that until I no longer had them.

Please pray that I can continue to do whatever it is that God has me here to do and that my attitude will reflect nothing but praise and appreciation for the many ways in which I have been blessed through this.

“I will praise you in this storm, and I will lift my hands.
For you are who you are, no matter where I am
And every tear I cry, you hold in your hands
You never left my side, even though my heart is torn
I will praise you in this storm.”