Friends, homesickness and mucositis

The day that Michael was admitted, there was another man,there with his mother, Michael and Pat KAnzig, being admitted for the same thing. We, the mothers had a few minutes to chat while our sons were having blood work done. We exchanged phone numbers, hoping to connect later. In the ensuing days we only saw each other a few times, due to the chaos of everything that we were going through. One day we chatted and talked about our families. I showed her pictures of my littlest daughter, 4 1/2 year old Lindi. I didn't think much of it until a few days later a friend of mine from Leduc, Arlene Travnik showed up at Michaels' hospital room. I was somewhat surprised to see her, and especially to see that she had made her way to the room where Michael was.??? We spoke briefly and she explained that Michael and Pat,that we had met the first day were her brother and mother. When her mother told her about us she knew who we were and found her way down to Michael's room and invited me to join them, her family, her mother, Pat, sister, Cheryl, who was her brothers donor, and her nieces, Sara and Paige, and her husband, and her husbands, parents for dinner at Paige's home. I had been feeling a little homesick for my family and kids about this time and was overwhelmed with their kindness to someone that they did not even know. They dinner was amazing. Paige's husband is a chef and everything was beautiful and definitely the best food I had had since....well for a long while. WOW!!! The company was fabulous. It was a wonderful time. I laughed and didn't worry for a couple of hours. I was again touched at the generousity of not just these people, but of our Heavenly Father for the tender mercies that he sent through a warm and loving friend.
I was not the only one feeling the weight of the separation from my family. Lindi had gone to stay at Cindy' home away from the family, and although she seemed to be doing ok, had started exhibiting behaviors that would tell us she was feeling stressed. Jim was back at home, feeling the weight of not having me there and also having Lindi gone and Michael very sick. Andrew called one night crying and wanted to know if it was ok if he came to see me because he just missed m. Jim decided to come down that weekend. IT was a relief to spend some time together and with Lindi. Jim ended up not being able to leave Lindi and took her home so that she would not be away from the family for so long. I think it was as much for him as it was for her. I think having here there was a comfort to him. She is a warm, loving and happy child.
About this time Michael's severe nausea had continued and he was having trouble keeping much down. Twice the doctors gave him day passes from the hospital and both times I had to bring him back. This lasted until about nine days after transplant. About that time he was able to come home for two days and was thrilled that he could finally eat .... until the morning of the second day. He awoke with his mouth feeling pretty sore, so he asked for just a milk shake for breakfast. He drank it and then promptly lost it onto the kitchen floor. Well, we headed back to the hospital and that was the beginning of a severe case of mucositis, a side effect of chemotherapy which causes death of the fast growing cells, particularly affected are the mouth, through the complete digestive tract. This looks like ulcerations, bleeding and sores through the area, making eating and drinking nearly impossible. Also accompanying this is an overproduction of mucus and saliva and an inability to swallow it. It will be a long a very painful two weeks.

CVC lines and other complications

During the next few days Michael was very ill. His neck had swollen to 48 cm and his fever was running as high as 40 C. We called and asked my brothers David and Kevin Thompson if they would come and give him a blessing. We appreciated their visit and the strength and compassion that they brought. His doctors had determined that there was a blood clot wrapped around the CVC line, they were also concerned with infection as that can be life threatening in this situation as it will be blood borne making it much more difficult to treat. They started him on three different antibiotics as well as blood thinners. Within a day or so of Kevin and David's visit the swelling went down 7 cm in one day and his fevers stopped. We breathed a sigh of relief as he continued with a very difficult chemo protocol. One of the drugs that he was taking reduced his seizure threshold, and so saying affected a number of other medication that are normally used to treat chemo side effects. Michael's favored nausea drug happened to be on the list of can't take due to drug interactions, and as a result he started vomiting and could keep little down for about a week. They also used another drug to help keep him from having seizures, a possible side effect of one of the chemo drugs. Michael's response to this drug was interesting, and a little scary. He started hallucinating and then moved into being disoriented and unsure of where he was or what was happening, during that time the doctors were very concerned about his brain, not being sure of the exact cause of his symptoms, they worried about a clot, a bleed, or an infection in his brain. The rushed him down to receive an MRI of his brain to rule out any possible serious problems. Once that was done they determined that it was due to the Ativan. His liver enzymes were high at this time as well, and the liver is how this drug is excreted from the system. Three days before transplant they gave Michael something called ATG. It is an antigen made from rabbits that keeps his body from rejecting Danielle's cells. There is often a number of reactions to this, fever, allergic reactions etc. As a result they give Benadryl to reduce the problems associated with this drug. Fortunately for Michael he did not have any difficulty with the ATG, but the combination of Ativan and Benadryl was a little scary. At one point Michael had an EKG and when they left he was incoherent enough that he did not realize that his CVC line( which is inserted into his jugular vein) was not one of the EKG sensors and he pulled on it. Both Danielle and I gasped. When they checked it later it was bleeding and subsequently about two days later it just fell out.
During the time of his incoherence Michael said a couple of interesting things that made us wonder later how thin the veil might be for him in this state. He turned to Danielle at one point and asked her" What are all these people doing here?" She said that she didn't know and he turned to her and said "They are here to help you." He repeated the same thing to me. The interesting thing about that is that Michael remembers virtually nothing about that 4 days, except the people. HE described it similar to an experience his Great Grandpa Dean had while serving a mission, except he said there intent was good. He remembered one man in particular and described him to me as being about thirty and having hair a little longer than his brother Andrew's. I don't know the meaning of all things, but I do know that there has been a help from God distilled upon us to handle this challenge that I cannot describe, an feeling of hope, and love that we has carried us through so much emotion and pain.
Through all of the time that Michael has been sick he has been strong. This week he cried. He cried for the last three years of his life, for the not knowing, for how hard it has been to be sick and to watch his family suffer along with him. One day he said " There has always been a place where I put my sadness, but now it is full" There were a sweet moment when Michael started crying and my phone rang and I stepped out of the room and when I came back Danielle was laying on the bed nest to Michael holding him and stroking his hair while he cried. There were many tender moments that week that pulled at our heart string to see the pain that he has endured so bravely.