August 31, 2011 in Uncategorized with 12 Comments

Last week Gray went through his third round of immunotherapy and he came thru it successfully. He did endure some issues with his oxygen levels, he developed a rash on his face and began having night terrors, though. Gray’s doctors decided that after having such extreme side effects with the last round of proton therapy that they would reduce Gray’s dosage of medicine and run it for longer hours, instead of much stronger and shorter doses. The new treatment plan seemed to help. Unfortunately, since we returned home Gray’s night terrors have continued. We are running on no sleep or rest as an entire household. On Thursday, during his hospital stay, Gray spiked a fever. This wasn’t too unusual as he has also ran a fever with each of his other proton therapy treatments. On Friday, despite the fever, Gray’s doctors decided he could be released to go home. By Saturday, though, Gray’s fever hadn’t gone away and he had also developed a pretty bad cough. We ended up taking Gray to the emergency room Saturday morning simply to rule out any serious infections. The hospital ran tests and did a chest x-ray to make sure Gray hadn’t developed pneumonia. After spending most of Saturday in the ER, we were thankful to hear that Gray’s x-ray came back clear. The doctors gave us the option of admitting Gray for observation if we didn’t feel comfortable treating and caring for him at home but after just coming out of the hospital only the day before we opted to take Gray back home. Gray has continued to suffer from night terrors and has been extremely irritable. To say the past week has been exhausting would be an understatement. The past ten days have held some of our lowest lows but have also given us our highest highs! Just a few days ago we were able to attend Praise4Gray, a worship night with artist Jason Upton held in Gray’s honor. Gray had just been released from the hospital only hours before the concert so he was tired and cranky but we were honored to meet one of our worship heroes and also humbled by the response from our community and friends. Probably the worst part of Gray’s latest hospital stay is the addition of Gray’s night terrors. There’s nothing more exhausting or heart wrenching then to be awaken from sleep by the screams of your 3-year-old who seems to be reliving his past week of shots, pokes an medicines in a terrible nightmare. As a family, we are in desperate need of rest and peace! Cancer and all the treatment that comes along with it effects our ENTIRE family. God has been so faithful, though, and we know that Gray’s healing has come only through His mighty hand, but it is at the end of the race that you need the most strength to ensure crossing the finish line. We feel like that finish line is within reach and we can see it in the distance, but our physical bodies are losing the ability to move forward and our mental exhaustion is keeping us from focusing on the goal ahead. Through this process we have concentrated so much on Gray’s physical body that we sometimes forget the toll all the stress, the sleepless nights and the unrelenting treatment schedule takes on our physical bodies, as Gray’s parents. We truly could not have made it this far, and certainly could not continue in this fight, if it weren’t for your constant prayers. We thank you and love you all so much!

Just yesterday we received some news we simply didn’t see coming. After having blood work done at clinic this week, Gray’s doctors decided that he needs to have a feeding tube put in. Gray will have to have surgery in the coming days and a tube will be placed directly into his stomach. It will hang out of his stomach kind of like the way the picc line in his arm does. Because of all his treatment, Gray just isn’t eating enough. He doesn’t feel hungry and it’s nearly impossible to force your strong willed 3-year-old boy to eat! As a result, Gray isn’t getting all the nutrition he needs to grow and maintain his weight and thus the need for the feeding tube. Gray will still be able to eat solid food whenever he does want to and whenever he actually feels like it but each night we will have to put nutritional supplements into Gray’s feeding tube. We will  also be able to put some of Gray’s medicine into his new feeding tube so that we don’t have to hold him down and force feed him his meds every day. I guess if we HAD to find a silver lining through this sudden new phase of cancer treatment it would be that…Gray hates taking his medicine! It’s still a shock to know that our baby will have to have a feeding tube. You can’t imagine the anxiety knowing your baby won’t eat. The nurses assured us, though, that feeding tubes aren’t entirely uncommon for children with cancer. If they don’t feel like doing something they’re simply NOT going to do it…including eating! Please continue to pray for Gray and our family. Gray’s treatment is going very well, overall, and we couldn’t be more thankful for all your support and for God’s faithfulness. It truly is, though, the time in Gray’s treatment plan where we are pulling strength from any place we can possibly find it just to make it through the next few months or even each day for that matter. We are  exhausted, worn and weary but we know that by God’s strength alone we will cross that finish line that seems so close and yet so far away at the same time.

“That day when evening came, he said to his disciples, ‘Let us go over to the other side.’ Leaving the crowd behind, they took him along, just as he was, in the boat. There were also other boats with him. A furious, squall came up, and the waves broke over the boat, so that it was nearly swamped. Jesus was in the stern, sleeping on a cushion. The disciples woke him and said to him, ‘Teacher, don’t you care if we drown?’ He got up, rebuked the wind and said to the waves, ‘Quiet! Be still!’ Then the wind died down and it was completely calm. He said to his disciples, ‘Why are you so afraid? Do you still have no faith?’ They were terrified and asked each other, ‘Who is this? Even the wind and the waves obey him!’ Mark 4:35-41