When I blogged last night's entries, I had no idea of what was going on probably even as I sat at my computer painting what I thought was an accurate picture of how things were. Upon speaking with Greg and Joy today, I feel like I need to give you a little more detail about their struggles. Last night from about 5:30 or 6pm until 10:30 pm was miserable. Because of James' young age, he has absolutely no understanding of what is going on in his life. Many years down the road this may prove to be a blessing due to the lack of memory of the experience, but for now it is making things very difficult and frustrating to say the least.
Joy and Greg must administer meds to James at home 4 x a day. He has developed a gagging response when he sees the syringe coming his way. Of course, we as adults know that the medicine has to go down in order for it to do its job. It goes without saying that James has no concept of this. The first time he threw up mentioned in yesterday's entry was just the tip of the iceberg.
When he threw up, he soiled the dressing that covers the central venous catheter in his chest. It is imperative that this area remain dry and sterile. A dressing change involves pinning him down. It takes two people to accomplish this task and a third person to do the actual change of the bandage. One holds his upper body, careful to restrain his head from turning towards the site. The other holds his legs still. The third person has the task of unsticking the huge and very sticky bandage from around the tender site, cleaning the sticky off of the skin and removing all of the skin oils, applying iodine all around the site, and reapplying the dressing carefully. All the while he screams, becomes hoarse, and struggles to get free. This is a lengthy process anyway, but seems eternal when your child is screaming and you are sweating and trying to remember the tedious and precise steps to go through as your back aches and you pray to God for strength to do what you know has to be done.
To make matters worse, the second time they tried to give the meds, the very same thing happened no matter how hard they wished that it would not and tried to make adjustments to that end. So a second time in a matter of hours, the dressing had to be changed. All the time knowing that the meds had to be given a third time. On top of all of that, James' vomiting set Joy off and she began vomiting as well. Bless their hearts! It is a learning process for them and the doctors gave some suggestions during their three separate phone conversations with them, and they came up with some ideas of their own that may help in the future.
Today they gave meds mixed with oatmeal and put on a plastic coated bib and kept a towel handy. So far so good.
You can only imagine the total exasperation they all felt when trying to go to bed last night. Even sweet James, when Joy took him up to his room nearly leaped from her arms reaching for his crib, completely exhausted from the events of the evening.
Sorry to paint such an awful picture for you all, but you are in the trenches with them. Thank you for accepting the role of going to God on their behalf and standing side by side with them against this foe. Let this entry be just a small eye opener to the harsh reality of this cancer that is sinking in further as each day goes by. However, never forget the victory that is ours in Christ Jesus and the miracles we have seen thusfar.
Tomorrow they head back to the clinic at MDA very early in the morning. They will draw blood and a transfusion is a possibility. (they are thinking he is looking pale today, indicating a possible decline in hemoglobin and/or platelets) Pray they will still find zero blast cells in his peripheral blood. He will not get intravenous chemo again until they return to the clinic on Friday. Also pray for them to continue to find creative ways to get his meds in him at home, making that whole experience a better one. Pray that he does not lose any weight and is able to keep his appetite for healthy foods that he needs to stay strong. Lastly, pray again for a good night tonight, they need it!!