On Thursday July 7th, we were told she would have a bone marrow aspriation. They originally wanted to do a spinal tap as well (also called a lumbar puncture or LP for short) but were concerned with her anxiety. She and I both have high levels of anxiety but she tends to have more of a sensory issue than I do. She suffers from misophonia which is caused by a reaction to sounds. In her case eating or chewing sounds. She also has an extreme phobia of a spinal tap or anyone near her spine. They told her that due to this they would just do the BMA instead and do the LP only if necessary.
At 11:45 they began the needle insertion which started with some numbing medication being administered just under the skin. After this numbed the area, the PA. would proceed downward inserting more numbing medication as she went further. Once she reached as far as she could she grabbed another needle that was around 6 inches long which enabled her to reach all the way to the hip bone.
In the meantime, Mayleigh was doing great keeping her anxiety and pain at bay with some amazing coaching from my wife. She has been through 16 surgeries herself and has a pain threshold probably much higher than my own and did an excellent job getting her through this. Mayleigh needed to be face down throughout and this created a major issue with breathing. She was already short of breath and having difficulty due to the tumor on her thymus gland.
She finally reached the bone and was able to switch out the needle with a coring device. This would be inserted like a corkscrew and taken again down to the bone where she was asked if it was sharp or dull. It was dull every time and she seemed to be struggling to find the right place to go through the bone. She removed the core device and inserted the needle again going up and down, right to left, stabbing profusely but not applying any numbing medication. She seemed stuck and Mayleigh was having a very hard time staying calm due to this. The pain threshold began to get worse and she began to remove everything to allow for a different position for her as it was again hard to breathe.
She let her re position herself on her side so that she could breathe a little easier but the PA said she was having a hard time finding the right spot and that she felt she would need to move over another 1/2 inch and start from the beginning. Mayleigh was a trooper and said go ahead and so she started over with the smaller needle, then the bigger one until she get get all the way down again.
This time she never did get to the coring device. She continued to stab endlessly trying to find the right spot by moving the needle right to left, up and down and all the time not really administering any numbing fluid. I was getting major anxiety watching this and knowing she wasn't getting relief as the plunger was not moving. Several times I had to look away and ignore what was going on as I felt the staring was making it drag on longer.
After over an hour of this, the PA finally pulled out and said "I am going to get Dr. Medvedova to come take a look and see if she can get it". Mayleigh had had enough. She simply could not continue and mom and I both agreed that it was enough. This was extremely painful for her (and I) and she had endured over an hour of this and it was not doing anything for our confidence nor for her anxiety.
The best solution was for her to be put under conscious sedation where they could do the BMA and the LP both at the same time. This made us all feel more at ease and they were able to get an anesthesiologist to attempt this the next day at 11:30.
The wife and I both spoke to the PA who attempted the aspiration and told her we believed in her and agreed it was a difficult situation with her anxiety and tumor pressing down making breathing difficult. She appreciated our words and we also thanked her for being on her team. She is a great person and it was just unfortunate to have such difficulties. We appreciated the alternative though as it's usually not suggested. We would have to wait another day to find out what was hiding in the bone marrow but thankful all of our anxiety would be at bay.
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