Beautiful Baltimore

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... 

Tumor Review Board Results

I am having mixed emotions as I contemplate the call from Dr. Viskochil. He called today to tell us the results from the tumor board this week. He confirmed that the tumors in her chest are growing. As they discussed Ricki's tumors they felt that surgery for the tumors was possible and really the only option we have right now to give her relief from the pain. Unfortunately the only clinical trials right now are connected to the vestibular schwanomas and she has great hearing in her one ear so she does not qualify and we can't try to see if Avastin would shrink those tumors. Dr Viskochil felt it was very important we get a second opinion and it is a good thing to be going to Johns Hopkins.  The surgeon we will see there at Johns Hopkins is one of the best and Dr Viskochil said we would have to determine what will be best for Ricki and if it is even feasible to have the surgery done there. We do have fine doctors here but we want only the best for our sweet Ricki especially when it comes to surgery close to those vital organs. It will be interesting to hear the opinions and solutions the doctors at Johns Hopkiins come up with. 

In the meantime he said he would get an appointment with a cardio thoracic  surgeon who would assist our neurosurgeon with the surgery if we were to do the surgery here. We are always learning new medical terms and I wasn't exactly sure what a cardio thoracic surgeon was .....

A cardiothoracic surgeon is a medical doctor who specializes in surgical procedures of the heart, lungs, esophagus, and other organs in the chest. This includes surgeons who can be called cardiac surgeons, cardiovascular surgeons, general thoracic surgeons, and congenital heart surgeons.

Just reading this broke my heart. It is so difficult to see my daughter in daily pain and just want to be held. I wish  and long that there were better solutions for these tumors other than surgery. There are so many risks to surgeries and I hate to see her have to go through this. 

We will continue to keep you updated as we learn more....

More MRI's, hearing tests, and a spirometry

We have had a busy few weeks trying to get all the testing Dr. Blakeley has requested. 

After our appointment with Dr. V we had a Spirometry test done to get a baseline of her lung function. It came out within normal limits but did show a slight obstruction in her lung function. 

Next were hearing tests. Her hearing continues to remain stable in her good ear which we are so grateful for!

Following that last week she had a searies of MRI's. She has been in a great deal of pain and did not feel that she could hold still for the whole time so she had general anesthesia for her  MRI. When the anesthesiologist spoke with her before he asked of there was anything he could do to make it more comfortable so she requested something for the pain before they finished. When she woke up and I let her know her sister Angie was there she opened her eyes smiled and said "yo, what's up."  It was delightful to have her wake up in a cheerful mood. 

We received confirmation that they are planning on seeing us at Johns Hopkins at the end of the month. We are excited to get some opinions from NF2 specialists to know what route we should take to help Ricki with all the pain she has been experiencing lately. She normally is pretty optimistic but it has been wearing on her so we are hoping for some fresh perspectives and ideas on how to help her. 

Tomorrow Dr V meets with the tumor board to review Ricki's case. The tumors in her chest have a slow but steady growth pattern so it will be interesting to get their perspective as well.