Mason Lee's Journal
Jiena's bone marrow biopsy
Written Apr 9, 2014 2:44pm by Maly LeeJiena and Mason had an hematology appointment yesterday as well as lab draws. Both kids were entertained very thoroughly by Amplatz' Child Life Specialists that neither made a peep during the blood draws- not even Mason, who hates his port being accessed! We found out that, from Mason's biopsy at 1 year old, his bone marrow cellularity (the number of blood cells made by his bone marrow from 90-100%=just born to 0%=not alive) is only 20-40%. That's the same as someone who is in their 60s to 80s. Their hematologist says there's nothing to worry about though because he's still producing enough blood cells to function. Jiena's is at 20%. Jiena was to have a bone marrow biopsy as well, but literally with only ten more minutes before heading down to sedation, we caught her munching on her after-biopsy snack so we had to cancel and reschedule it for this morning instead. Fasting before sedation is hard.
The biopsy today went well, but it didn't quite start out that way. First, we forgot to put numbing cream onto Jiena's arms so the hospital used the "J-Tip", which is a fast-acting lidocaine. It doesn't hurt, but it makes a loud popping noise that scared Jiena. Then, it took three pokes before they got an IV in. Jiena was in tears by the time they were done. I'd told the doctor about past pain that she'd have so the doctor made sure to give her a bit more numbing shots than usual at the biopsy site. Jiena woke up very upset and restless so some Tylenol was given as well. For what she went through, she got to pick out two prizes from the Bravery Box and she got a cherry Icee. We're back home now and she's doing well. If the results come back good and there's no major change in cell mutation, her hematologist says we may be able to hold off on doing it for a year! Prayers are much appreciated!
Written Mar 19, 2014 1:36pm by Maly LeeMason is 2 years old! We just had a birthday party for him and I think he enjoyed it! We had a great time with family and friends and are so blessed to have such great people in our lives!
On a side note, Mason recently had a follow-up hearing test done and we found that he is losing his hearing in the good ear. He already has severe hearing loss in his right ear. His audiologist says the new hearing loss is conductive, which means there's some kind of blockage between his outer ear and his eardrum. She believes the blockage is fluid build-up so we're to see his Ear, Nose, and Throat doctor about where to go from here with it. They'll probably put in a tube to help drain his ear, but we'll see. I hate that FA causes so many problems...
Written Mar 13, 2014 2:38pm by Maly LeeMason had another dilation today and we didn't get any good news :( His esophagus is continuing to scar shut. Today it was the size of a pin point. His GI surgeon doesn't think there's any more they can do for him and wants us to start getting opinions from different specialists for other options. We already tried surgically removing the scars and, one year later, we're battling new ones at the same site. What we've already been told is that our only other options are to surgically remove the scars again or undergo a magnet therapy trial in San Francisco. I don't even know how our family is to afford San Francisco! We're incredibly bummed out.