We should be getting the results of all the scans tomorrow...hopefully! Actually, I know both the MIBG scan and the CT scan are negative, which is awesome, but the HVA/VMA urine test was slightly elevated. Medications and foods can cause this, so on Sunday we began a 24 hour urine collection which will give more accurate results. I keep telling myself not to worry, especially since the MIBG was clear, but its been hard, especially since we dont have the results of his bone marrow. I will find out tomorrow the results of his bone marrow, the 24 hour urine collection and if we will get to go home on Friday. I had thought we would be going home on Thursday, but our doctor wants to test how well Waylons kidneys are working and that test is on Thursday. Yesterday was the bone marrow biopsy and aspirate but not before first having to get platelets because they were only 11. Going into the procedure room, Waylon was happy and having fun playing on the child life specialists tablet, but waking up was a completely different story. Initially, I thought he was having a sort of night terror type episode because he wasnt himself and crying so much, but soon after I realized it was something much scarier. He was extremely belligerent and angry with strength I have never seen before; kicking, hitting and screaming with his eyes about to pop out of his head. At one point while the nurse was trying to restrain him from hurting himself or anyone else, he threatened to bite her and tried to but luckily she moved her arm in time. I was in shock at his behavior and cried as I wondered what the heck was happening. I dont really know how else to describe it but to me, he seems like he was having a pychotic episode. The nurses and doctor said it wasnt pychosis and sometimes, for whatever reason, patients can awaken from anesthesia like this. After about 30 or 45 minutes of this and realizing that he wasnt going to calm down, we gave him ativan and within minutes, he was asleep. About 30 minutes later, we woke him up and he was back to normal. A mother should not have to see the things I have seen with Waylon over these 3 years. Today we only had one appointment so I was looking forward to a very short day at St. Jude and then coming back to RMH for some relaxation. His appointment today was with audiology to check for hearing loss. Since his diagnosis in 2011 he has periodically had hearing tests because some of the chemos are known to cause hearing loss. When hes been tested in the past, I was told that he had some minor loss with high pitch frequencies, but it really wasnt anything to worry about, so I didnt think too much about this appointment. Well whether it was a delayed side effect from the chemo he had in San Antonio, the carboplatin that he received in his last two rounds here, or a combination of the two, he now has moderate loss of high pitch frequencies. I was heartbroken as I was told that he needs to wear hearing aids and that the damage is irreversible. The audiologist gave me a tissue to wipe my eyes and as I gathered my thoughts, I asked what we needed to do next. In the grand scheme of things hearing loss and hearing aids are not that big of a deal. Ill take that any day to have him cancer free! So he picked out what color he wanted his hearing aids to be--surprisingly, he picked out blue instead of green--and then he also picked out what color he wanted the ear mold to be--he chose 3 colors to be swirled together: green, blue and red--to be like the Ninja Turtles. He will also get an FM receiver with a microphone so that when hes watching tv or playing on his tablet or computer, the sound will transmit directly to his ears. We will also talk to the school about getting a microphone so that he will hear his teacher clearly without all the background noise. It takes about 2 weeks for the hearing aids to come in, but they will ship everything to an audiologist I select in New Braunfels so we arent delayed in going home. I will post another update as soon as I have the results of the bone marrow and HVA/VMA tests. Thank you for your continued prayers and support!
Posted on: Tue, 09 Sep 2014 21:54:57 +0000
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