Baltimore in July is beautiful! We have enjoyed the sights and tried to not let the impending stress take away from enjoying our time together. It is hard not to let the worries and concerns from our day of doctor appointments today creep into my thoughts. My son reminded me of a song my brother sings "His eye is on the sparrow" so.. Each time those thoughts begin to creep in I am so grateful for the peace and strength that comes when I pray and remember to have faith. There are tender mercies all around if I pause and look. Another tender mercy was our taxi driver this morning singing along to the song on the radio. One of the lines was "The Lord won't let me down."
We started the day with Ricki getting a CT scan then off to see Dr Belzberg. He reviewed Ricki's pain issues and she was tough as usual. She hardly complained to him. However, when he made light of her pain - bless her heart she had a total melt down and he realized how much pain she has been in. It seemed to melt his heart. He reviewed her MRI's and for the first time we saw some pretty clear pictures of the tumors. Next we met with Dr Blakeley and she did a very thorough check and over all- with the exception of the paraspinal tumors in the thoracic area the other tumors in her body are pretty stable. The culprit of her pain is the deeper one near her aortic arch and one sitting by her left lung. The one by her lung is beginning to cause some small issues with her lung capacity. Currently we are grateful the one by her arch is not causing problems but they don't want to wait until,it does and then it could become inoperable. Ricki is in pain so much she can't even sleep and they suggested sleeping in a chair to improve her quality of sleep because it would put less pressure on her chest. We realized some of Ricki's best sleep lately is when she is sitting in a chair leaning next to her mom and dad. We discussed a few more ways to help her be as comfortable as possible until surgery.
Unfortunately her pain isn't going to go away because the tumors are only going to continue to grow and all of her options for pain relief are not working. Currently there are no other options than surgery. We would prefer to be at home for the surgery but they have an amazing collaborative NF team here at Johns Hopkins that have already met and been discussing Ricki several times before we even came to Baltimore. There is no doubt she is in excellent care here at the NF clinic. Because the tumors are deep it would be a very invasive surgery it will likely require a 4 week stay in the hospital here in Baltimore and then 2 more weeks in the hospital when we get back to Utah.
We hate to see Ricki have to go through such an invasive surgery and then in addition be so far from home, family and friends for such an extended period of time. We will be meeting with the thoracic surgeon and cardiac/vascular surgeon the next couple of days.. Our neurologist warned us it would be overwhelming hearing all they would be doing but to be reassured that they wouldn't even consider doing the surgery unless they felt there would be a positive outcome from the surgery.
Ricki only lasts for short periods of time when we go out but we have enjoyed the beautiful sites here in Baltimore. Honestly though I had a hard time enjoying it because my heart was aching and longing for a time when surgery is not the only option... I would love to see the day when they are able to put and end to NF...
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