July 24, 2011 in Uncategorized with 10 Comments

Gray completed the first half of round 2 of his proton therapy this week. According to the doctors, this was supposed to be a “boring week” of treatment! It was scheduled to be routine and simply a preparation week for next week when the tougher treatment would begin. That proved to be anything but true, though! After only two days of treatment Gray became extremely swollen and spiked a fever of 105! The doctors immediately ordered a blood transfusion. It was a scary day. The transfusion WAS able to lower Gray’s fever! We were thankful for that. The rest of  our hospital stay was tiring and mentally exhausting, though, as the nurses decided it would be best to hook all of Gray’s monitors up to screens that they could see at their station in the lobby just in case any of his vital signs showed a need for  immediate attention. Needless to say, we didn’t get much rest physically or mentally after that!  It is very scary to think that our “boring” hospital stay was so eventful knowing that this coming week’s treatment has higher risks of side effects and will take a greater toll on Gray’s body. Sigh. Gray goes back into the hospital tonight. He will be admitted this evening and after they place a picc line in his arm tomorrow they will begin the final portion of his 2nd round of proton therapy. Gray is going through alot with this treatment. It causes him widespread pain and his recovery, as he comes home each weekend, is rough because after being in a bed for a full week his muscles and joints are sore. Gray is also on a variety of medications and shots at home. It’s overwhelming for us and a struggle each and every day just to get all the necessary meds into Gray. Simply to say he “doesn’t like his medicines” is the understatement of the century! Gray has also become extremely agitated and angry with his proton therapy thus far. As we were preparing to leave the hospital after last week’s visit, the nurse came in to remove Gray’s IV’s he began screaming at her and even kicked her a couple of times while she tried to do her job. Gray is also very moody at home. He will be happy one minute and very angry the next! If it’s possible, he often seems both happy and mad at the same time! He is also very hard to please, changing his mind on a whim, and like any three-year-old is very demanding. The only difference is Gray is demanding and in pain so it makes it harder to deal with then dealing with a normal self centered toddler.

As we go into this next week of treatment, we ask for your constant prayers. We’ve been warned by Gray’s doctors that this week will be rough. It will be painful for Gray and carries with it the possibility of many serious side effects. They will also be placing a new picc line in Gray’s arm which he will be required to keep in until his proton therapy is completed, which is still several months away according to our schedule. The difference between this new picc line and the port Gray already has is that Gray’s port is internal so when it’s not accessed during hospital stays it is underneath his skin and requires no extra care but the picc line they are putting in Gray’s arm tomorrow will be external meaning it will have tubes hanging externally out of it. These tubes will require us to flush them each day at home, when we’re  not in the hospital, and also require extra care. We cannot get them wet and, of course, Gray can not pull them out! Please pray that Gray’s mood will improve and that his emotions will level out. Pray that his pain will be minimal and that there will be no surprise side effects during this treatment. Our family, as a whole, is exhausted and so ready for this therapy to be over. The hospital stays are so very rough. We know it is for the long term good of our baby but it’s so daunting to watch Gray recover each weekend and just begin to return to somewhat of a normal little boy only to be thrust back into the hospital, hooked up to an overwhelming concoction of drugs and be exposed to so much pain for an entire week. It’s sad to know that you’re having to make your baby sick in order to get him better. It just doesn’t make sense. We do thank you all for you constant concern and willingness to help our family through this time. It means the world to us and we are so grateful for our friends, family and thousands of prayers that are offered up each and every day for Gray and our family.

“And the prayer offered in faith will make the sick person well; the Lord will raise him up. If  he has sinned, he will be forgiven. Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous man is powerful and effective.” James 5:15-16