At 5:30am on Monday, we headed to COH for Naomi’s weekly appointments. We arrived easily with no traffic or delays and were even able to stop for a breakfast smoothie before checking in at the hospital. Labs and vitals went well; no fever, blood pressure normal and the best news of all, she went up 1.5 lbs in one week!
The next appointment was in the imaging department for her Ultrasound to check on her kidneys. The emotions while taking off her top and putting her into a hospital gown caught me off-guard. The last time she had an ultrasound was when she was admitted on October 13, 2013 and would have surgery just a few days later, on October 17th. She seemed to control her emotions well, lying on the bed holding her St. Nicholas pendant and rubbing her fingers over it, as though soothing herself. She thought ahead enough to wear her essential oil diffusing necklace and asked me to refill it with peppermint for her. My stomach was in knots. While watching the ultrasound screen, I did not see anything unusual and assured myself that the nephrologist was not concerned but just wanted some pictures for verification. I was thrilled to get out of there though. The hospital bed. The ultrasound screen. The technician with a straight face not telling me what she is seeing. Her leaving the room to ask the dr if he wanted more shots, twice. Him wanting more shots, once. It really has been a growth in patience for me these past few months!
We had a few hours until Naomi’s appointment with the doctor. So, we went to grab some lunch. Throughout the morning, Caitriona had told me, “pee bad!” 4 times and I had hauled her to the bathroom that many times. At some point she learned that if she says “bad” after “pee” that I will take her right away. Remember, I have major public bathroom phobia, and this was really grating on my nerves today.
When we sat down to eat, Cait was dancing all around and would not settle to eat. I sat her on the chair and she jumped off of it. We repeated this a few times. She started pouting, “pee bad! pee bad!” I did not take her to the bathroom though. I was sure she was exaggerating and did not need to “pee bad” since she had gone 4 times in the past 2 hours. So, she one-upped me and started to say, “pee bad! POOP! pee bad! POOP!” Her cries were loud enough to get the attention of the woman at the next table who looked over her shoulder at us. Mortified, I gathered Cait in my arms, and like a loving mother, sat her on my leg and told her to open up for a bite. I also whispered in her ear to “hush and not say pee and poop again.” As she stopped crying, I felt a warm sensation run down my legs. I plopped her to her feet, looked at my pants and was stunned to find that it looked like I had peed bad. Thank God there was no poop!
After running back to the car to clean up Cait and get into my extra clothes, it was time to rush to our appointment. It would happen that we were called into Naomi’s appointment about 30 minutes late. I spent many of those 30 minutes taking Cait off the sofa where she insisted on walking and jumping. Fortunately, Naomi’s ultrasound results were perfect. Her hemoglobin and platelets remained stable from last week, but her WBCs and ANC plummeted again. She is back at 900 ANC and 1700 WBC. It continues to be a struggle to keep her meds in the therapeutic range. Cyclosporine was at 143 at the last appointment and at 241 the appointment before that. The levels keep going up and down. It could be due to not drinking enough, or maybe her weight gain. Perhaps the warm weather here in Vegas last week means we need to increase her fluid intake yet again. The delicate balance of all this is slightly overwhelming at best and completely maddening in reality. I feel like a pusher making Naomi drink as much as she does. I was happy to start our drive home and make it there in semi-silence as the girls napped. We made it home to Vegas mostly in the daylight and were able to enjoy dinner as a family.
That was all on Day +89.
Today, we awoke to Day +90! On one hand, I cannot believe that we are here and STILL dealing with such fluctuating numbers. I had this idealist vision that around day +30 her WBCs would engraft and begin to double and then double again and that it would all be better. But this is certainly teaching me to find the good and be thankful for it! So, I force myself to look at the other side of all this – I AM thankful that she has remained healthy with no readmissions, has good energy to the point of NOT napping even when I insist she lie down at quiet time; she spends her days being a normal child: playing, running, learning, eating, laughing… We feel incredibly blessed to have her health improving and look forward to her continued increased health. We had hoped that she would be able to return to gymnastics and have a coming home party within the next few weeks, but with such fluctuating counts, we have to put those plans on hold. We are now looking at a celebration in the fall when things cool down here to celebrate one year since her initial admission and diagnosis. Your continued support means a lot to us. I cannot say thank you enough!