|J. Scott Coile | profile | all galleries >> People (18 Subgalleries) >> Aiden's Fight >> Week 18 & 19||tree view | thumbnails | slideshow|
Fever + Low Counts = Vanderbilt
Tuesday we were supposed to make a quick trip to clinic so Aiden's nurse could access his port for Wednesday's early morning procedure. Unfortunately, plans changed! Aiden was covered in red spots again and needed another platelet transfusion. While we waited, we learned his counts were too low to consider his bone marrow biopsy that was scheduled for Thursday. It was delayed until the following Wednesday in hopes counts would have time to improve. We also learned Aiden had officially been moved to the transplant team. This means it's almost time and that scares us both.
Wednesday was a difficult day! We had to be at the hospital very early for his MUGA, a test to look at his heart. It's a 20 minute procedure that includes a large machine which hovers just inches over the body. Aiden had to lay there completely still with his arms over his head. He was so brave! After, we went to clinic to check counts again. They had dropped from the day before. We learned this is normal because of the treatments he received and that it's common with Hypodiploid Acute Lymphocytic Leukemia for counts to take longer to recover. From clinic we had our first consultation with the Radiation Oncologist, he was wonderful! They took measurements for his radiation treatments which meant lying on the floor in a room full of doctors. This was difficult for us but Aiden did great. His radiation will be given two times a day for four days while he is sedated.
Since his bone marrow biopsy had been delayed, Thursday was going to be a relaxing day at home. Unfortunately, Aiden woke up not feeling well. We worried his hemoglobin might be too low. He just wasn't himself. As the day progressed, his temperature started to creep higher and higher. We spoke to his medical team multiple times throughout the day as we monitored his behavior/temperature. Just after he went to sleep, he felt too warm. He had a fever and it was time to go in. They were waiting on us at the ER and quickly drew blood cultures to check for infections and administered antibiotics as a precaution. Aiden was admitted because his counts were dangerously low and would need to be monitored for the next couple of days. We have been extremely fortunate he has been healthy and able to be at home since he was discharged on July 20th. Being admitted was difficult for him, he was scared and so were we. It was a long night, he felt miserable and none of us slept.
Friday, Saturday and Sunday we spent trying to get him comfortable. He was feeling bad from low counts and in terrible pain from mouth sores. He hadn't eaten for several days, so he was weak. Even his favorite things tasted bad. The good news, the cultures never presented infection. He will remain on the antibiotics as a preventative measure until his counts come up. This will help keep him in a safer place prior to transplant. More good news, the results came back from Tuesday's preparation testing proving his heart and kidneys are healthy. We are doing everything we can during these painful times to stay positive and celebrate the good news.
Monday he was able to have his first visitors (Grandma, Mimi and Ashlynn). He was so excited! His counts are too low to take chances this close to transplant with outside exposure. However, visitors have always brought him strength and smiles so the doctors approved. He received another blood transfusion which helped boost his energy. Later we made six laps around the myelosuppression unit, each lap picking up more speed and more smiles. We didn't think we'd ever get him back in the room. We can't explain the joy this brought us. He hasn't walked that much at one time since before his diagnosis.
Today is Tuesday and he's feeling much better. Some of his counts are starting to improve which is the key to helping the mouth sores. He's gone all day without morphine, a first since we got here. During morning rounds we were informed Aiden's transplant date with probably be moved out two weeks to allow his counts time to recover. His team is making efforts to change dates with the donor, we should know within the next couple days. If the date is delayed, we may be able to go home in a couple of days when his counts are in a safer place. Although we love being home, it comes with mixed emotions. When his counts are so low it's extremely scary. Being in the hospital brings a sense of comfort should there be a need for immediate attention.
It's been four months since the doctors told us our sweet boy had a rare form of cancer and was going to have to fight for his life. Our faith is strong and we refuse to be anything but positive. However, we are emotionally exhausted. It hurts from the inside out watching your child suffer in such a way. Our current focus is keeping him healthy in preparation for days ahead. This means avoiding any sickness while his counts are non-existent, trying to maintain his current weight when he has no appetite and exercising his leg muscles to keep his strength before transplant.
Thank you for being part of Aiden's journey! Your faith, hope and love are incredible medicine for us.
For now, please keep praying!