Movin on Up...to room 4404.

In our roller coaster world that we have been living in, it is difficult to miss a few days blogging because so much has happened. I don't really know where to start. Good news I suppose...and there is so much of it. On Wednesday her CRP hit .8. We weren't sure that would ever happen. She is doing physical therapy twice a day and progressing little by little. She uses a walker to get around the room. Although she can't put much pressure on her foot, she continues to try. It is the most difficult for her to flex her foot. The muscle that controls that movement has been through the ringer. She has fallen in love with an alternative medicine doctor who is not only coming up with visualization strategies to help her move her ankle, but also teaching her some pain coping techniques. Her cyclosporine level is back down to 120 and we want it to be 200-250. Her chest pain is getting much better and after several EKGs, they are attributing it to esophigeal spasms most likely triggered by acid reflux from all of her meds. She was able to talk to a doctor about some of her traumatic experiences, and I think it was great for her to be able to articulate her feelings to someone besides her parents. He quickly discovered what most of us already know, that Timmie is always more concerned with others than herself. He assured her that she doesn't have to handle this trial perfectly, that she is allowed to have bad days and break downs, and that it is okay and probably necessary to focus on herself during this experience and put changing the world on hold. She was able to articulate her fears, her fears of not getting back to school, not being able to reach her academic goals, not being able to play basketball, not being able to walk, letting people down. As positive as we all try to stay during all of this, the reality is that it is extremely difficult, at times overwhelming, and constantly very frightening. Wednesday and Thursday went so well that they were thinking they could discharge her home to Pocatello on Monday. She has been ecstatic. She still has no neutrophils and would rely on Home Health for IV antibiotics, physical therapy, and medical equipment, but everyone agrees it would be beneficial for her mentally and emotionally to spend some time at home healing while we continue to pray for immuno-suppressant therapy to work and her bone marrow to start functioning once again. Just as she got her sights set on coming home...a curve ball. It was late Thursday night after her best day in the hospital by far. Physical therapy was great and her need for pain meds was minimal. She laughed, visited, worked hard, and even replied after dinner that she had "felt normal." After some friends left, she crawled into bed and I saw a large patch of red skin on the calf and knee of her good leg. I rubbed my hand across it and could feel an immense heat. My heart sank as I had the nurse page the resident. After examining the area, the resident suggested that we draw a circle on her leg to make sure it wasn't spreading. The thought of trying to fight another life threatening infection was more than I could bear. The mask of strength that I have been able to put on during previous traumatic situations disappeared. The nurse asked if I wanted to draw the line around the area. I flashed back to all of the hours spent watching the infection spread on the other leg, all of the times we had to enlarge the drawn circles, all of the pain from the heavy weight on my chest sitting through eight surgeries, all of the prayers offered that her leg and life would be spared. "No. No circles," I replied, and I burst into tears. I knew I should stop because I didn't want Timmie to feel more terrified than I already knew she was. A few tears trickled down her cheek, and she said, "It's okay, Mama. It will be okay." I wiped away my tears, grabbed the marker from the nurse, and drew yet another circle, this time on her healthy leg. We prayed but not for long because her knees and groin and lower back began to hurt. For three hours she struggled for relief. No meds seemed to be working. I held her hand and tried to reassure her, but ran out of words of hope. Finally, at 2 am, a med was given through the IV that subdued her pain. As she clutched the pillow lying across her chest, she slowly closed her eyes and fell asleep. I offered a prayer of thanks and begged the Lord that she didn't have infection in her other leg. This morning the redness and warmth were gone. The doctors think that it was not infection at all this time, rather a rash and joint pain from Serum sickness - a reaction to the ATG immuno-suppression drugs she received early last week. Apparenly, patients are at highest risk of acquiring these symptoms 10-14 days after the treatment. A difficult thing to deal with for a bit, but not nearly as devastating as infection spreading to her other leg. So you see, a lot happens in a few days around here. We are still praying for her to be able to come home next week sometime. Thank you all for your kindness, support, letters, and generosity. We continue to be uplifted by your support. Oh...I forgot some good news. We were able to move to a bigger room which is nice, especially for Timmie's physical therapy. It is brighter, has a couch that folds into a bed that is so much more comfortable for me to sleep on, and has a giant bathroom! Not that we need a big bathroom, but still, something for us to be happy about. The best thing about us moving on up (I keep singing the song from the Jeffersons, but Timmie doesn't get it and it just gives her one more opportunity to tell me I'm not funny) is that our little friend, Millie, who has been "kicking leukemia's but since 2009" moved on out. She had a bone marrow transplant and grafted so was able to go home. She is an inspiration, and we feel the good vibes from her room. Timmie was also able to go for a late night wheel chair ride (with a mask on of course.) We went outside at about 11 pm when very few people and their germs were out. When we got outside, she took in deep breaths, reached out to touch a plant, and of course shed some tears. We sat for a while by a pond with a few flowing fountains. I could write a whole post about our experience and our talk, but I won't. I will say that sometimes we take the simple beauties of the world for granted. I will stop now before I start quoting Thoreau.