Monday was a fairly uneventful day medically, and that is a good thing. Our doctor is back on rounds this week. He is very prompt and fast so I made sure I was here on time to begin at 8:30am. He said that he would expect to see some cell activity in the next few days. He could give a dose of stimulant to see the cells in her labs more quickly but that could increase risk of graft versus host disease. So we’d rather not. This is where being patient is so hard. It could be said that her behavior and how well she feels is evidence of cell activity but until we see the white blood cell count rise we can’t assume it has. Remaining cautiously optimistic is the goal.
Naomi had a tube and machine change again today. She was able to get a bath and play ball in the hallway unattached to poles while free for over an hour. I am truly amazed at how well the nurses and doctors tolerate and actually encourage children to be children in this hospital. It is common to see a child on a trike being pushed in the hallway with mom or dad pushing the trike with one hand and the pole with the other. You might also see a child riding a trike a lone and the parent chasing him or her with their pole.
Yesterday, a 2 year old boy here was playing ball with Naomi. They kicked it back and forth while his mom struggled to keep his lines out of the way. At one point she bent down to hold his line better and Naomi accidentally kicked the beach ball towards her and it bounced off her head. We all laughed. The boy was cracking up, doubled over and pointing at his mom. Then he suddenly rubbed his head and pointed at her and asked if she was hurt. It was so sweet. He is used to older children at home as his sister is Naomi’s age (and was here this past weekend and played with Naomi) and his brothers older than the sister. Naomi is used to younger children. So the two of them play here together often. In the evening, he and his mom and Naomi and me all were in the playroom at the same time. It really helps to have made this friendships.
While in the room today we have struggled to stay busy and distracted from all the anxious events this week. We started another puzzle during a moment close to despair as we were both extremely sad about missing everyone. We worked on this puzzle for HOURS today. It was Naomi, a volunteer and myself. It is the hardest puzzle we’ve done as inpatients. It contains irregular shaped pieces and a lot of similar colors across the entire puzzle. The tiny orange fish throughout the water and the water covering the length of the puzzle have made it a real challenge! It doesn’t help that the serving tray is about 2 inches too narrow for the puzzles to fit on it well. A little larger of a table would be nice!
We have been here a month on the calendar now having arrived in Wisconsin on 2/20. Today marked our 29th day. 4 full weeks. It was an emotional day for us as we see what is ahead and getting closer and brace for that transition. We will miss Micayah’s birthday but have a visit from Aaron, Cait & Sinead; we will hopefully see white blood cells and possibly even move out of here but will lose the daily contact with those who are most familiar with here. Some of our friends at the RMH have left, are planning to leave soon or could be leaving as soon as x happens for them.
It has brought to the forefront of my mind how quickly things change and that life truly moves. Our current circumstances when uncomfortable or disheartening can feel as though they will never end. Good experiences are certainly taken for granted. We made a very difficult decision to bring her here, leaving my home, children, husband, career, having no vehicle or means of taking care of myself provisionally. Naomi has had to leave everything behind, but really she was losing things continually since last October when her blood counts started to drop again. It was a slow gradual change for her. It was sudden for me.
I can say without blinking that this has been one of the best decisions of my life. We have been immensely blessed by our time here. Nurses, doctors, social workers, care team partners, recreational therapists, psychologists, other patients, previous patients who deliver treats, weekly chaplain visits, pet therapists who bring their fuzziness at just the right time, volunteers who join us to talk, play and help us do really hard puzzles…. the amount of people who have made this work as well as it did is truly an act of God. It all seems unreal that within a few days this experience could be over. We feared it for so long and on the backside, we have been abundantly blessed to have met these people. I am so proud of Naomi and how well she has handled everything here. It is so fitting that we continue to spend so much of our time putting together puzzles. Puzzles are a perfect analogy to life.
One thought on “BMT+13 (Monday, day 29)”
So eloquently put, Kristy! I pray you have a joyous visit with Aaron and your other children. You all remain in my daily prayers🙏🏼