This post was written a few days to and sat around waiting to be edited.
The plan for Day 100, April 25, 2014, was to have a picnic at the park near our house. Two other families were supposed to join us there and it would be a surprise for Naomi. Niamh was onto it all day and was questioning my activities all day long. She saw me sneak the cake into the van and I had to lie and tell her it was for a friend. It was, really, we WERE sharing the cake with said friend that evening! Niamh also made sure to ask why I was making Naomi’s favorite food for said friend that night – the story was that we were taking dinner to a friend that night and sloppy joes were easy.
On our way out the door, as we were supposedly going to deliver a meal to a friend, I needed the children to cooperate because some of them wanted to stay at home until I got back. I had to get cooperation… FAST. So, I whispered to Lauryn, “Go upstairs and comb your hair, put earrings in your ears, and change into your Day 100 t-shirt because we have a surprise party to go to.” She smiled, started giggling and sprinted upstairs. She then proceeded to help me get Cait and Niamh ready and into the van. She was giggling the whole while and the whole drive.
I also had to tell Malakye, “Go change your shirt to your day 100 t-shirt because we need to leave now for Naomi’s surprise party.” He started pumping his fists and his smile was as bright as the sun.
The weather had turned bad with high winds that would have left us picking cake out of our hair. Another friend of ours, not the one who was getting the cake, was sweet enough to offer their home for all 22 of us to gather so that we could move the party inside. Their home was perfect with adequate space for the children to play and the adults to chatter.
When we arrived, they opened the door and yelled, “surprise!” Aaron had gone there directly from work and arrived before us. Caitriona was scared by this and clung to me for about 30 minutes before realizing that playing was a much better alternative. Naomi was surprised and smiled BIG all night, coming over to hug me often, running around the house playing with friends, and being so glad to be somewhere other than home or a hospital. Sometimes we would explore the house together; we played hide and seek, too. Naomi choose to wear her mask, even though she was told that she did not need it after day 100 anymore. I appreciate her maturity to do what she can to stay healthy. Mostly, the children played and the adults chatted. It was wonderful for all of us to not be isolated for the evening!
Although at Day 100 and she was told she could remove her mask, she is still on immunosuppressants. As long as she is on cyclosporine, she will be at increased risk for infection/illness. It is hard to know what is safe for her to do and where to draw the line. At this point, it is still too risky to return to gymnastics due to the bacteria and fungi on the mats, and the fact that she has a catheter in her chest, still. We will continue to hike and climb to help her build her strength. She also spends quite a bit of time on her bike. I would say that she is rather active. It is rare to see her laying down, resting, etc. In fact, at quiet time, when everyone MUST rest for an hour, she reads that whole hour, if I can manage to convince her to stay still at all!
We have another week before we return to City of Hope. I will inquire as to when we might expect her catheter to be able to be removed. With her chimerism test coming back so high, her transplant is obviously doing well. To remove her catheter would reduce risk of infection, eliminate dressing changes, and mean that we would not need to do daily line maintenance. It would mean that she would need to be stuck with a needle every time she has an appt……
We are very anxious to move forward to more normalcy… but that risk of illness due to a weakened immune system hangs overhead. We have to constantly weigh risks and benefits, and I am afraid to admit that I evaluate everyone in terms of potential risk to our health. When I am in a room with someone who is coughing, I jump and look for an exit. Seriously. When I hear someone sneeze, I make a note of that and monitor it to see if they sneeze repeatedly.
On Saturday, I attended a class for my Midwifery Program. I noticed that whenever the instructor said “fever,” or “bleeding,” I thought of Naomi’s bruised legs while she was very sick and her soaring high temperatures right before she was diagnosed, and my right eye twitched. I had recognized this issue over the past few days prior, too. So, I took out some essential oils and dabbed it on the temple next to the twitching eye. It happened three times and I applied the oils those three times. Then, the twitching stopped. On Sunday, Naomi fell off her bike and got a brush burn. We had to clean it so that it did not get infected. Seeing her injured, my eye started twitching. Some of you may remember the bruise Naomi got on Christmas Eve 2013 when her platelets dropped severely and she needed a transfusion the day after Christmas. The bruise came from her last dose of Neupogen. After that dose, her doctor decided that since it was not helping anyway and only caused further bruising to give the shot, then it would be stopped. Well, 4 months later, the staining for that bruise is STILL on her leg.
Most days fly by doing homeschool, playing, and living and loving life. We are all enjoying as much time together as we can get. I am returning to the midwifery center part time this week and really looking forward to it. I love that sometimes we realize we are 30 minutes late for meds. I love that Naomi knows how to gather her meds and the materials she needs for flushing her line each day. I am so amazed by her strength, discipline and endurance. She is truly brave!