May 5, 2011 in Uncategorized with 14 Comments

The past couple weeks at home have, to be honest, been a bit draining. While being in our own home always trumps the hospital it can sometimes be more difficult to be caring for your sick son at home by yourself while also feeling the pressure of all the other to-do’s that come along with a home and family. Mom’s will surely understand. Lately, Gray has been in very good spirits and has had alot of awnry energy! He’s been active at home playing, singing and dancing but definitely has moments that remind us he is still fighting cancer. Whether we’re administering medicine, refusing him food and drink after midnight because of an early morning procedure or simply cuddling him when he doesn’t feel well the fact remains…our baby has cancer. It can also be daunting how unforgiving cancer in a toddler really is! Most of the time it feels like we are either caring for “sick Grayson” or doing our best to raise and corral “3-year-old Grayson”. He seems to be either not feeling well or he’s a typical, all boy, pushing the limits three year old! Either way, our world never stops! Yesterday, Gray started his radiation treatments. We have to be at the hospital no later then 6:30AM which makes for a very long day. Because of Gray’s age he has to be completely sedated for each radiation session. Once he is actually asleep, the radiation only takes about 15 or 20 minutes! Both yesterday and today we were home by about 8:30 or 9:00 in the morning. Gray has thankfully done very well during his radiation thus far! He has cooperated with the nurses and doctors and honestly this has probably been the easiest part of Gray’s treatment plan, to date. We have been told that there are possible short and long term side effects of the radiation, like anything else, but so far Gray has handled his treatments very well! The possible short term side effects seem to be like any others. He could experience sickness and crankiness among other things. The long term side effects are the ones that are more concerning, though. While preparing Gray for radiation the doctors did another round of tests to be sure that all of Gray’s tumors were in the exact spots they thought the were, etc and when the results came in there was some news we weren’t expecting. The main tumor inside Gray’s abdomen follows his spine up further then they originally thought. It goes all the way up to his diaphragm. In our first talks about radiation the doctor’s only expected to radiate one disc in Gray’s spine but now that has changed to seven discs! Because the tumor is so high the radiation will probably effect Gray’s spine in ways we didn’t initially discuss. They say that it won’t effect his ability to walk or anything like that but they did tell us that it’s likely that when Gray reaches puberty he will not grow in height as tall as he probably would have had he not had cancer. In their words, Gray will most likely be “short in stature”. I guess in the grand scheme of things, we’ll take a shorter Grayson over no Grayson at all! The other long term side effect that is more concerning is the fact that the main body of tumor the doctor’s are treating through radiation is centered right on top of Gray’s kidney and so the likelihood that Gray will have kidney failure and/or damage is pretty high. That’s a bit of information we are simply tucking away until the day comes that we have to deal with it. We can’t handle it all at once. Like I said, Gray has done very well in radiation so far! We’re very proud of him! After they put Gray to sleep and take him back we’re not aloud to follow and so we have to sit outside the room. The light above the door comes on when they begin Gray’s treatment. It’s emotional and even takes my breath away to see that light come on and know what is happening to our son behind the closed doors. Although, he’s not in pain and we know that all of this is ultimately for Gray’s good it doesn’t make it any less surreal. It’s like a lighted reminder of our current life. Flashing. Reminding.

As we left the hospital this morning Gray, of course, HAD to have his chocolate milk!! And then when we got home he put on quite a silly show jumping into the front seat, sporting sunglasses and pretending to drive away!! He’s always a bit loopy when he comes out from under the radiation sedation and this morning inparticular he was very silly!!

Cancer most certainly has a way of changing you. I’ve heard it said that “when one member of your family has cancer the whole family has cancer” and we’ve definitely learned what that means. We’re still learning what that means. Cancer isn’t just a sickness. It’s not like someone in your home has a cold or the flu and you get a prescription knowing that in 7-10 days all will return to normal. Cancer doesn’t have a time limit or a reliable protocol. It doesn’t act the same in everyone and no one can answer all of your questions. They can’t even answer most of your questions with any amount of certainty. Cancer truly is life. Don’t get me wrong, we’re still a family. We don’t sit in our home just staring at each other, moping and sobbing that Gray has cancer all day but it still becomes very much your every day and every moment life. Cancer changes your perception. Cancer changes your thoughts. Cancer changes your concerns. Cancer changes your complaints, it changes your priorities and it most definitely changes your plans. Cancer dictates your choices and quite frankly wears you down further then you ever thought possible. While we know that the night is always darkest just before the sunrise, even the promise of the breaking dawn doesn’t make the current darkness any less dark. Our baby has cancer. Our family has cancer. And until the sun actually breaks over the distant horizon we will continue our stumbling walk through the night. Please, we beg, for your continued and constant prayers. Statewide Youth Camp begins in just a matter of weeks and youth camp is an event that is a full time job without the added schedule of Gray’s cancer treatment. We truly need strength both physically, mentally, emotionally and spiritually as we enter the next two months of our lives. Our career doesn’t stop because of cancer and the needs of the students of Oklahoma don’t go away because of cancer either. We want to continue to pour into the lives of Oklahoma’s young people, especially during camp, but in order to do that we ourselves must be full and overflowing. Please please pray! Also, we would appreciate your continued prayers for the everyday basics in our home. We need rest and peace. Please also pray that Gray’s radiation will continue to go as well as it already has! It is sometimes overwhelming to see that of everyone under our roof Gray brings us the most smiles and laughs! He truly has the faith of a child and we all can learn from him!

“I’m trading my sorrow, I’m trading my shame, I’m laying it down for the joy of the Lord! I’m trading my sickness, I’m trading my pain, I’m laying it down for the joy of the Lord! I’m pressed but not crushed persecuted not abandoned, Struck down but not destroyed, I’m blessed beyond the curse for his promise will endure, And his joy’s gonna be my strength! Though the sorrow may last for the night, HIS JOY COMES WITH THE MORNING!!”