April 7, 2011 in Uncategorized with 12 Comments

The past week has been long. If there were a word to describe a week feeling like a hundred years that would be the word we would use right now. After beginning to experience side effects from his stem cell transplant last week, Gray began struggling with stronger side effects over the weekend. On Saturday, Gray threw up and it  had blood in it. Sigh. Due to the blood being present Gray had to receive a platelet transfusion. Over the weekend, Gray also developed mouth sores and so was put on morphine every two hours. We knew this was only the beginning. Saturday night, into Sunday, Gray was up nearly the entire night in pain. He just moans and groans, unable to sleep. Then on Sunday, Gray’s fever spiked. While we had been warned that he would most likely develop a fever at some point this was definitely something we were most afraid of. A fever can mean so many things and can definitely lead to more devastating side effects. Sunday, Gray’s fever rose to over 101 and so the doctors had to access his port, take blood from his arm and swab his throat among a variety of other tests. Even though the doctor reassured us that all of Gray’s side effects thus far, including his fever spike, are right on track for all he has gone through and nothing is out of the ordinary it still doesn’t make it any less scary for us, as Gray’s parents. “Normal” or “routine” offer us no comfort whatsoever. While we waited for all of Gray’s test results to come back the doctors went ahead and started Gray on an antibiotic and increased his morphine to a full time drip. So much had happened and we had only made it through the weekend. Thankfully, Monday did bring a bit of good news. Gray’s culture results came back negative! Showing that everything was normal! The not-so-good news, however, was that Gray was still getting sick AND running a fever. We also learned, after the weekend, that Gray’s white blood cell counts were at ZERO! Yikes! Because his counts are beyond low Gray has developed small bruises on various parts of his body and even on his head. Gray has also lost what little bit of eyebrows had grown back during his break and he is really looking sick. There have only been a couple times that Gray has developed that “cancer look” and now is one of those times. He is puffy, has red eyes and dark circles. He just has THAT look. All of the meds that Gray is on combined with this lengthy hospital stay are making Grayson very very VERY cranky. Not that any of us can blame him. If we’re honest, we’re probably all a bit cranky! Through it all, though, we have definitely seen in our son something that we wish we had ourselves. Here is a tiny little man who is fighting cancer and yet still gets up out of the bed, reads books, plays with toys and simply moves around! There are days we ourselves don’t feel like getting out of bed and yet there’s our strong little son showing us what life is all about. We can only hope to have the strength and courage that he has. He’s most definitely stronger then we would ever be if we were in his place. Gray is also learning through his situation. He is becoming alot more compassionate! He received this stuffed bunny from another patient in the Transplant Ward and this week we found Mr. Bunny tucked into bed covered with Gray’s blanket and with Gray’s binky in his mouth! Gray had obviously been taking very good care of his little stuffed bunny!

The past couple of days haven’t been any easier then the weekend before them. Gray is not sleeping AT ALL and, in fact, he has his nights and days completely mixed up. Thursday night, Gray napped until almost 10PM and then stayed awake into the wee hours of the morning and last night Gray only slept a total of three hours! When the doctor came in today we asked if the abnormal sleeping schedule was being caused by his meds or his treatment or what. The doctor said that all transplant patients generally end up having sleep problems. We also learned that morphine doesn’t allow you to fall into a deep sleep. After nearly a week of horrible side effects and sleepless nights, we were relieved to hear even the slightest bit of good news today! Gray’s blood counts are finally on the rise! As of today, they had only reached 60 but the very fact that they have begun to recover is wonderful news in itself. Gray will soon begin being weaned off of his medications as soon as possible. The doctors even said that if all goes well Gray may be eligable to go home as early as late next week!! You have no idea how wonderful that sounds!! Home!! Gray has been begging to go home since the first day he was admitted and, honestly, so have we all. Gray is still extremely emotional today and can literally be laughing one minute and a sobbing mess the next but the light of home at the end of the tunnel is making it a bit more bearable. We had one more glimmer of recovery hope today when Gray asked to eat!!!! That’s HUGE!!!! Sure, he only ate ONE cool ranch dorito but we were beyond happy!!!! It may only be one chip but it’s a start!!!!

There’s so much that we want to say and yet we’re so exhausted that it’s hard to process our thoughts enough for even ourselves not to mention putting them down on paper. Our brains have literally turned to mush and we’re lucky if we even remember what day of the week it is! While the past 3+ weeks have been a whirlwind of stress, anxiety and even fear we just have to say again how strong Grayson has been. Sure, he’s had his moments, but his courage and strength are qualities that we not only admire about Gray but also hope to have more of within ourselves. Gray is not only reaching around the world with his story but he is also reaching us. Those of us who sit by his bedside day after day and watch him moment to moment. He is truly our hero! Please pray this weekend for Gray to get some sleep. Please also pray that as he is taken off of his meds that his body will react positively and he won’t have any adverse side effects. We would also covet your prayers for the rest of our family. While Gray is in the hospital life in the “outside world” goes on and jobs don’t stop. This weekend is a huge weekend as district youth directors as we are hosting and running a very large talent event for our entire state. This event takes up alot of time and energy and we would greatly appreciate your prayers for us to find the strength to give this weekend all we’ve got. We also need much more rest. Thank you all for your constant prayers and all of your support. It truly means the world to us.

“Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the the crown of life that God has promised to those who love him.”  James 1:12