Hello, If you live in Canada this past weekend was the time we celebrate Thanksgiving. It was a tough weekend for Melodina but we ended up with a lot to be thankful for. If you live in other parts of the world thanksgiving is a three day weekend in October that comes just after most of the crop harvesting has been finished. Originally Thanksgiving was so that we could communally show our thanks for the fruit of the earth after harvest. Now it is mainly a time for family to get together and enjoy a feast.
Melodina appears to be cancer free. She has been through a lot and is still in the hospital but the present issues are minor compared to what she's experienced. Melodina is relatively healthy. Having said that her skin is peeling or the sixth or seventh time since January. On the weekend we had planned to go to her cousins for a Thanksgiving dinner on Saturday. The parents , my cousin and her husband are both medical specialists so we felt safe. Melodina would wear a protective mask to protect her from viral or bacterial or fungal infections. She would be in a wheelchair because of weakness. We were looking forward to the mental health break that being away from the hospital together with family would bring.
Melodina had been put on a steroid called Hydracortozone. This was given after her blood pressure dropped as a result of another steroid being removed too quickly. While all steroids have negative side effects, we know from past experience that Melodina had some very uncomfortable allergic type responses to this drug. Slowly Mel's reactions were betting worse. Two or three weeks ago I had asked that she be changed to a different steroid to avoid the type of situation described below but was told that it could not be changed. Certainly a steroid is necessary because Melodina's adrenal glands have suffered from steroid reliance and her body needs time to re develop adrenal function.
By last Thursday Melodina was getting a red angry rash after every dose of the Steroid. It was so bad that she couldn't sleep because of extreme itching and depression about her condition was very evident. When the rash was at its worst she had a lot of pain in her hands and feet; her elbows were raw and painful as well. By Saturday we had cancelled our Thanksgiving diner. Saturday night was the third night she didn't sleep. Sunday Melodina left the hospital for a few hours and lay on a couch at the apartment where we stay in Toronto. She talked to her niece and nephew, her sister and brother in law and my aunt and uncle. We had a great few hours but by the time we got back to the hospital she was itching again. Saturday night was sleepless and the depression was worsening. Melodina began thinking that she might never get out of the hospital. She started believing that she was ruining her mother and father's lives. Melodina expressed thoughts that she thought she was going to die. The situation, in our opinion, was desperate.
On Monday we talked to the staff doctor on call regarding changing to dexamethazone, a different steroid. He agreed. The rash subsided as soon as the new steroid was administered. While she still appears to have drug reactions, they are comparatively mild and short lived. The doctor who told me we couldn't change the steroid expressed his displeasure but he offers no explanation why and no alternatives and Melodina is suffering less the way things are.
The Good news!!! Melodina's CMV, the virus we are so worried about tested negative for activity this week. We know it could come back but for now it is under control. Good news #2! The malaria drug we want to use to control CMV on an ongoing basis may be available to us soon. Sick Kid's Infectious Disease Doctors have a lot of paper work to fill out but hopefully that will be the final hurdle. If we get the drug, it is administered orally. As long as it works we should be able to leave the hospital. Her kidney and liver functions should slowly move towards normal and life outside Sick Kids can begin. We have a lot to be thankful for. I pray that all the readers of this blog and their families and loved ones had a loving and healthy Thanksgiving. "God Bless Us Everyone!"
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