Saturday, October 15, 2011

How much can a little boy take? It seems we are being forced to push his limits. Where do I start? With the good news or with the bad? I guess I will start with the bad first, and end with the good.


This week has been one of the worst so far. I have seen my little bundle of boundless energy reduced to a lethargic, week little boy who didn’t even want to get out of bed.

Derek is still not able to eat by mouth. This is day NINE! Originally when we went in, the oncologists were saying that if he remained symptom-free they would allow him to return to a normal diet in 72 hours. As that drew to a close with no change in the lining of his colon, the oncology team realized they would need to defer to the surgery team who was saying a week to 10 days with no food. He has not exhibited any of the typical symptoms of pneumatosis which is baffling the doctors, and they are not sure what to make of it. We know we cannot go on symptoms alone to determine his treatment or the length thereof. Now as we near the end of the 10 days, they are saying it may possibly take 2-3 WEEKS!!! We pray it is not that long.

They now think Derek may have had the pneumatosis for several weeks before it showed up on the scan. To add irony to irony, the drug which caused his intense hunger contributed to (if not caused) the problem which is now preventing him from eating. But it may have masked the symptoms so it was not detected sooner. His last dose of this medication was last Sabbath morning, and we were hopeful that the result would be a lowered metabolism and also the healing of the lining of his colon. It does seem to have helped with diminishing his intense hunger but has by no means eliminated it. He is receiving IV nutrition, which is giving his body the nutrients it needs, but the IV has not taken away the feelings of hunger either.

How do you tell a 5-year-old that he cannot eat for a week? It has been too much for even us to grasp. He has not handled well the thought that he will not be able to eat for even two days, so we have to take it one day at a time and just tell him that for today he cannot eat. It has gotten to the point that he rarely even asks. He knows our answer and seems resigned to it. The fact that he does not complain does not indicate he is not still suffering. Any time he asks now, he gets teary in the asking, anticipating our response. It breaks our hearts again and again. I feel guilty when I slip down to the cafeteria to eat some breakfast.  I felt even more guilty one morning this week when they served biscuits and gravy, an item in the list of things which Derek says he wants to eat. That list also includes 18 hotdogs (linkettes), one plate of haystacks, peaches, macaroni and cheese, spaghetti with garlic bread, a big glass of apple juice, and other items that vary. He is still very hungry.

The week has been a week of waiting: waiting for the almost daily x-ray, waiting for the results of the x-ray to tell if his colon is any better, waiting to talk to the surgery team, waiting to talk to the oncology team, waiting for any signs of improvement in his colon.

As I mentioned in the last blog entry, he came down with a cold Saturday night and was placed in isolation. They cultured it and confirmed it was just a common cold and not something worse. It ended up being quite mild, and at first his spirits were still good. But because he couldn’t leave his room, he couldn’t go see the helicopters on the roof, and he couldn’t go to the playroom. We had to come up with ways to keep him entertained and distracted within the confines of his room.

Monday afternoon he was sedated for a bone marrow test and chemo in his spinal fluid once again. He slept the rest of the day. Tuesday was the day I anticipated the pain in his legs to return, and it did, like clockwork. This time it not only involved his calves and thighs, but also his hips. Fortunately, we were ready for it, and two doses of morphine took most of it away through the night. But the pain continued to linger in his hips for two more days, making it very painful to sit or stand. We put heat packs on it when he was in bed, and he was very reluctant to leave bed. By Thursday morning, Derek had run out of energy. The pain in his hips made standing or sitting very unpleasant, and his cold had removed his ability to leave his room. I could not get him out of bed for anything.

Fortunately, Thursday afternoon they determined he was over his cold and took him out of isolation. Tylenol managed to take the edge off his hip pain, and he went to the playroom for the afternoon. Friday, a little of his energy seemed to return, and he went to the playroom again. It wore him out, and he slept for three and a half hours in the afternoon. My little bundle of energy is running pretty low right now.

Now for the good news. The bone marrow test on Monday was to check for residual cancer cells and to help them determine his treatment for the next six months. They examined it on the molecular level as well as with the microscope. The results came back negative, meaning that even on molecular level, he has no remaining cancer cells in his marrow. Praise God! Now they just have to keep it that way. While Derek has had a serious complication from the medications, in the bigger picture, the medications are doing their job of ridding his body of cancer. We will have to manage the side effects.