02/10/2026
The past week and a half has been incredibly difficult for me. I have been suffering in silence, waiting for answers, but still have nothing concrete. Isla has been at the doctor 7 times over the past 9 days. Last Thursday she woke up with swollen, red, crusty eyes and lots of boogers. I figured she had a cold, since it tends to settle in her eyes, and sent her to school. She called me after lunch and said āmy head hurts when I press on itā, of course my response was āwell quit stinking pressing on it!ā
Just kidding, I knew immediately it was a sinus infection and called the doctor. He saw her an hour later and treated for a sinus/ear infection and gave intramuscular antibiotics since her immune system is so low and it was her birthday weekend, so we needed her feeling better STAT! We also had instructions to go back the next day for another round of shots, boy was Isla not happy with us those two days.
Later Thursday night her doctor called me, he said he had been looking over her chart for the past couple of months and he was concerned with what he saw in her ear. When I asked if he thought we were looking at an infection or relapse he said he couldnāt be sure what was going on and asked me to reach out to her ENT to try to be seen the next day, I was able to get her in Monday (everything happens on the weekend I swear!). When ENT looked at her ear he said that her ear canal was swollen and he couldnāt see her ear drum, but was able to remove her ear tube since it was dislodged. He put her on drop 3x a day (she was pi**ed, she HATES drops) and asked us to come back Monday, today. We then when back to her pediatrician for a follow up. Ultimately, he said that her ear looked better to him than it had Thursday and to come back Monday after ENT for a follow up with him.
Today, ENT was able to get a slightly better look and said that he thinks what is going on is that her ear is forming scar tissue/granulation tissue and that that is what we are seeing in her ear. He ordered imaging for a better idea of what is going on and her pediatrician agrees that imaging is the best route at this point. I am waiting for a call back from scheduling to get this taken care of, but in the meantime, I just want to puke.
Please, please, say some extra prayers that all we are dealing with is scar tissue and nothing more. My heart literally cannot take anymore heartache. Isla is a freaking trooper, obviously she doesnāt know the extent of what we are dealing with, but she continues to be amazing with all of the appointments, pokes, and me constantly asking her if anything hurts. She is so tired of all of these appointments, but is trucking along like a boss.
Some better news, she had therapeutic phlebotomy on Friday and her Ferritin level is FINALLY UNDER 500!!! This means that if she is under 500 again next month we may not have to continue with blood therapy any longer. We will follow up with an MRI of her liver to make sure she is no longer in iron overload and HOPEFULLY we can finally graduate to every 3 month appointments with her oncologist. She also got to discontinue a med she has been on for YEARS because her potassium levels are stabilizing!! She was so happy, she hated that medicine, said it was like drinking the ocean.
Today she had a field trip with school and we had to be at the doctor right after pick up, so she decided to snooze in the waiting room. I wish I could sleep anywhere like this š
