February 15, 2011

I am losing track of which days are which and what meds Grayson gets on which days because they are changing so fast. It seems like every clinic visit a med gets dropped, added, or changed. It is becoming increasingly difficult to keep organized. Grayson's liver numbers have been worrisome because they just won't normalize. They normalized for a little while (long enough for us to be discharged) but then his enzymes skyrocketed. His bilirubin is staying in normal range but the enzymes and ggt are very high. They believe it is do to one of the medications he is on called fluconozole. It's an antifungal that they give to prevent any fungal infections. Sometimes it can have this effect. However, we stopped that and changed it to an IV med called Ambizone (the one I didn't want him to have when we were hospitalized) over a week ago and there hasn't been much difference. The Ambizone is given 3x a week by IV over a two hour period which is not bad considering he only has to be attached to the pole for 6 hours out of the whole week. The dose is low enough that it shouldn't be too hard on his kidneys. If they notice any problems we will have to restart the IV fluids overnight. We will see. I am hopinh he handles it fine and that the fluconozole was the culprit.

To be on the safe side they also tested him for Hepatitis and a slew of other bacterial and viral infections which can infect the liver without showing other symptoms. We will see what the tests show on Wednesday. He also had his cortisol level drawn on Monday which showed that he was NOT making his own steroids yet. This was dissapointing but not uncommon. We will have to wean slowly and hope his adrenal glands kick into action. He is supposed to start losing the "moon face" now that the steroid dose is low, but I haven't noticed a change yet. I have noticed a change in his appetite. He is much less interested in food but is thankfully still nursing. He actually nurses all day and all night it seems. He sleeps with me all night, well more like on top of me all night because he nurses every hour or so. He is NOT taking much other liquid by mouth so the nursing is important but I am waking up exhausted and sore from the uncomfortable night sleep with a 27 pound kid on my chest. I know I am whining and as I write this I am truly thankful that I can even complain about this because if he hadn't restarted the nursing he would be connected to a pole 24/7 getting tube feeds, IV fluids and IV nutrition.

Hmm, what else. Grayson is not walking yet :( He is 12 months old and my other kiddo was walking by 10 months. He isn't even crawling. He cruises some but I was concerned about the developmental delays they told me chemo causes. The doctors said he looks good and isn't as delayed as they would expect after lying in a hospital for two months. However, because I was pushing the issue they referred me to Kennedy Kreiger who took my information and talked to their MD's. These doctors felt it important for Grayson to be seen and for him to get some PT just to be sure there were no further delays in gross motor skills (all other skills are great). So they put me down for the first available appointment....MAY 3rd! REALLY, YOU THINK I"M GOING TO WAIT THAT LONG!?! First of all I am not waiting that long to find out whether or not there is a problem and then to have to get appointments for PT after that date could take even longer. I started calling everyone I knew to see if there was a way to get him seen sooner or get PT sooner. Enter Holley Hovermale (halo round her head). A gal from my church who happens to be a Pediatric Physical Therapist who was willing to drive down and see my baby boy in 2 days! Man did God lead us to a good church! It is just full of people blessing us! UBC family know that we cannot wait to return the blessings! Grayson took to Holley right away and Holley gave me some exercises to work on with him. I took all the information she gave me back to my doctors and they were very impressed and baffled that I found a Ped. PT to see him in two days. Yup, God's cool like that! Please pray that these exercises go well for Grayson because he is already resisting when I try them and I am a total softy when it comes to his tears. He cries and I give in and pick him up. The child has been through so much I don't want to see him cry...ever! I am sure I am spoiling him and will probably have my hands full when he's three, but I will just be happy at that point that he made it to three.

Speaking of making it to three...

This is now going to take a turn for sad and depressing so stop reading if you don't want a sad and depressing dose of reality.

A friend who had a daughter go through a BMT two years ago for a different condition holds regular fundraising events for a foundation called St. Baldrick's. They raise money for childhood cancer research for some of the doctors that treated Grayson at Hopkins. This organization has team's of people who voluntarily shave their heads (both men and women) to raise money for cancer research. They are holding an event at Martin's East in March and Grayson is one of the children they are honoring at their event. They pick children that have had childhood cancers and share their stories during the event to raise awareness for childhood cancer. I went onto the event site to make Grayson a page and was totally sidetracked with all the other children's stories. Read some if you like. Have tissues nearby: www.stbaldricks.org

I should preface this with the fact that I have done ZERO internet research about JMML and childhood cancer because you can find all sorts of scary stuff on the internet and it seemed counterproductive at the time to read all the worst-case scenarios. There are so many children effected by childhood cancer and 1 in 5 diagnosed don't live. Of course that number varies depending on the kind of cancer you have. Of course once I started reading, I couldn't stop. It was like one story after another grabbed me. It sort of awakened this desire to connect with other parents who have gone through this even if it was only reading their story. I wanted to know about the other children who had JMML. In hindsight I should've waited until we were through our treatment and Grayson was out of the "danger zone" before I read them. There are so many children lost to this disease and for various reasons. We know that a BMT is the only treatment/cure. It does not respond to straight chemo or radiation. We also know that only 50% of those transplants are successful at curing JMML. Those aren't the best odds, but Tom and I really aren't interested in the odds because we are not interested in limiting what God can do. Reading those stories was sad and depressing but also made me so thankful for our current situation. Our son was diagnosed quickly where other children had been sick with this disease for a year before they got to a doctor that could figure out what's going on. It makes me sick to think they might have lived had the doctor diagnosed them sooner. We would like to think that doctors are the end-all-be-all when it comes to medicine but they don't know everything. Many cancers go undiagnosed because the doctors for whatever reason don't run the right series of tests.

Then of course there is the whole process of finding an appropriate donor match. Having a 100% sibling match is not that common and I read stories of children who had no donor matches at all (even internationally). The fact that Gavin was 100% match is nothing less than a miracle. Then you have to go through transplant which is where most children have complications. It is just awful to read but I have to believe that God's hand is on my baby and on my family. Right now I am thankful for all of the things that have gone right and that he is a smily, happy baby right now. Grayson is by no means free and clear; we still have two years before we can say "yes, it worked". There are plenty of kids who relapse 13 months - 2 years out from tranplant, but I just have to continue believing that God is in control. He has given us strength and grace to get through this much and I have to believe that if Grayson's death could do more for Christ than his life, that He would give us the strength and grace to get through that as well.

Grayson will have his second bone marrow aspirate next week. Not sure what day yet, but I will keep you all posted on the exact day and time. He will have to go under anesthesia again. Please pray for a continued 100% engraftment.

People continue to bless us through this and I just want to thank my mother for her continued sacrifice as she stays at my house and fills my shoes as mom to Mason and Gavin. I love you Mom! 

Here is a video of Grayson having a web conference with my in-laws. Very cute. My husband said to only post the short one but I may post a second one that is longer with Gavin and Grayson.
Short Video Clip: http://www.youtube.com/watch?v=IIhaczWjx_A