August 1, 2011 in Uncategorized with 20 Comments

There are truly no words to explain what all this week has held for Gray and our family. Gray went into the hospital just over a week ago for part two of his second round of proton therapy. We had been prepared on paper as best as we could by Gray’s nurses and doctors for what would happen this week and what the possible side effects would be but no amount of words or explanations could have prepared us for what we have dealt with over the last seven days. The week started off rough when the nurses were simply trying to place Gray’s second picc line and something went wrong. As they attempted to place the picc line Gray suddenly turned bright red then just as quickly his entire body turned white and his blood pressure dropped to a dangerous level. Gray started coughing violently. We were ushered out of the room and the nurse went in search of the doctor. It was chaotic, frantic and very very scary. The nurse, the doctor and several OU Medical students all came back rushing into Gray’s room. Moments later the nurse came back out and said that Gray was OK but when we re-entered the room they had placed Gray on oxygen and Gray’s skin from the top of his head all the way down past his shoulders was broken out in petichia, which are tiny bruises that form under the skin. Sigh. I think it goes without saying that not only was this one of the scariest moments we’ve had thus far in Gray’s treatment but it was also overwhelming to think that this was day one in the hospital for the entire week…and we hadn’t even began treatment yet!! It was hard to calm down after that morning. After running some tests we found out that Gray’s picc line had been placed too close to a vital vein and so when they flushed the line it caused the serious reaction. Fortunately, they were able to remedy the problem without having to totally replace the line. Almost immediately after beginning treatment that afternoon Gray began experiencing side effects. Overnight his fever spiked to over 102 and his blood pressure dropped yet again to an extremely dangerous level. His blood pressure was 75/24!! The doctors made the decision to stop Gray’s treatment for about an hour and see if his vital signs would rebound on their own. Unfortunately, his blood pressure wasn’t returning to normal and so they had to treat him for it and then wait a bit longer. Just as the doctor was coming into our room to inform us they would have to take Gray to ICU because of his low blood pressure and severe side effects Gray’s blood pressure jumped back to a normal level and we were able to stay in our room and eventually begin his treatment again! Thank you Jesus! We truly credit Gray’s sudden rebound in blood pressure to the prayers being offered up on his behalf! The entire week of treatment continued as a roller coaster of side effects, stopping treatment, a variety of medication cocktails and then beginning treatment yet again. Each time Gray would have an allergic reaction to his IV treatments the nurses would have to take him off of everything, return him to some form of normalcy and then as they returned Gray to treatment they would change his doses hoping that the new dose wouldn’t cause another reaction. Unfortunately, the allergic reactions continued until the very last day of treatment. Gray would spike a fever and develop rashes and spots all over his body. We would then go through the cycle of stopping treatment, treating the reaction only to put him back on the very drugs Gray was reacting to only hours later. There’s no way to express the emotions you feel as a parent to watch your child be given medicines and a treatment that makes him appear even worse and even more sick then he does on any normal day. It’s a mind game to know that, in the end, these treatments will only improve Gray’s long term health but in the moment you just want to scream “STOP!”, unhook your baby from all the tubes and wires and take him home! It’s very emotional. Then, in the midst of Gray’s treatment, we found out that a little girl who is a couple years older then Gray and who we have seen on several of our admissions at OU Children’s Hospital passed away. We had become sort of “hospital friends” with her and her family. She too had been fighting a rare form of childhood cancer and we knew that her cancer hadn’t been responding to treatment and was spreading. Unfortunately, she lost her fight. As we sat in Gray’s room watching him go through cancer treatment and fighting right along side him we couldn’t help but let our hearts sink. There’s not always a happy ending and, when it comes down to it, cancer is simply unfair. No child or family should have to endure the diagnosis, the battle or the end result. We feel so blessed to have so many praying for Gray and so much support on a daily basis, and while Madison had a strong support system as well, she is proof that what we want isn’t always what we get. It was a dark day in the hospital.

On Friday, Gray finished his treatment and was released late in the evening. We were happy to be home and hoping to get some sleep. While we got one night of sleep, it wasn’t nearly enough, when the hospital called Saturday morning and told us some of the cultures they had taken from Gray on Friday before he was released looked like they could be showing signs of an infection and so we were asked to come back immidiately. They told us Gray would be admitted for a minimum of another 48 hours while they watched the cultures and treated him for any infections that may occur. So…back to the hospital we went. It is now Monday and Gray is still in the hospital. The good news is the doctor’s no longer think the cultures are showing any signs of infection and so hopefully we’ll get to go back home today! Keep your fingers crossed! As soon as we can get home and settled in we will have almost three full weeks at home and as a family before we have to return for another round of proton therapy. It almost seems daunting to try and list prayer requests. There are so many. We are quite simply exhausted! Our entire family needs rest and just some drama free time to ourselves. We also would very much appreciate your prayers for our faith. Hearing of little Madison’s passing was a huge set back on our mindset. We know God is greater then cancer and has a plan for Gray and our family and we just need a fresh vision for the future. Also, please pray for Madison’s family during this time. Their loss is so great and simply beyond comprehension. Please pray for us as Seth begins school in just a few weeks. We have been joking that we don’t know what we did to have a 3-year-old with cancer and a budding teenager at the same time (Ha!) but that’s the hand we were dealt and so we’re doing the best we can. Seth starts junior high (sigh) in a few weeks and his first day will actually be during Gray’s third round of proton therapy. It seems overwhelming just to think about what that week will be like. Please just remember us over the next few weeks and pray that the last week of August will hold few side effects for Gray and a positive junior high experience for Seth.

“Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? WHO OF YOU BY WORRYING CAN ADD A SINGLE HOUR TO HIS LIFE? And why do you worry about clothes? See how the lillies of the field grow. The do not labor or spin. Yet I tell you that not even Solomon in all his splendor was dressed like one of these. If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you, O you of little faith? So do not worry, saying ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ For the pagans run after all these things, and your heavenly Father knows that you need them. But seek first his kingdom and his righteousness, and all these things will be given to you as well. THEREFORE DO NOT WORRY ABOUT TOMORROW, FOR TOMORROW WILL WORRY ABOUT ITSELF. EACH DAY HAS ENOUGH TROUBLE OF  ITS OWN.” Matthew 6:25-34

“Sometimes you have to get out of the way, REST and let God be God in your situation.” Rob McClure