The Roller Coaster Ride has begun

Friday Ricki went in for the embolization procedure. They didn't put her totally out because it is more effective if she can take deep breaths when they are doing the imaging of the arteries. Unfortunately it became too painful for Ricki and they had to start and they were only able to start one artery.  She was in an extreme amount of pain which is unusual for this procedure and it really through them off. (This is not uncommon with Ricki) that night was a. Very rough night with a lot of nausea as well.  

By Saturday afternoon things had settled down but they still would only let Ricki have sips of water with her meds. She was stir crazy and hungry. In addition this is the first time she has been in an adult unit and it is pretty boring compared to Primary Children's Hospital. ... In fact you even have to pay $10 a day for the tv...we decided it was worth it to distract Ricki.. We all know Ricki's happy place is with Disney and the shows on the Disney Channel make her laugh. The final straw was after we had the TV we discovered here in the adult unit there is no Disney... So gratefully we have netflix and we found a tv series  to start watching. 

Sunday morning when the Drs did their rounds they determined that it was in Ricki's best interest to embolize the arteries so she is scheduled for another Monday morning procedure but they will use general anesthesia.  They did give her the ok to eat solids until midnight tonight. Ricki really needed a break in scenery so we went exploring the old hospital and found a beautiful statue of Christ. It was comforting to to have the sweet reminder that he is always there to lift our burdens and help us through our challenges. Next we discovered a peaceful area with a pond. It had some beautiful goldfish that brought a smile to Ricki's face. She always amazes me at her ability to find the joy in her life even amidst the challenges. We got back to her room and her little body had enough and just started shaking and she was so miserable. They were able to give her some medicine and she was able to get some rest.

This morning they are trying to embolize the arteries again and we are praying it goes well. We did get a smile out of her when they came to take her to the operating room the cute ladies told her she was the prettiest patient they had seen. They teased her and told her they needed to check her wrist band because she looked too good to be having surgery. 

We are waiting and praying for a little smoother experience today.

We truly have been carried on the wings of angels and our burdens have been made light. It has strengthened my testimony in the power of prayer. When we first began this journey and I would hear of miracles and I would sometimes doubt my faith and the reality of the power of prayers. But, over the years I have been slowly learning that faith is more about believing that God has a plan for each of us to learn and grow while we are here on this earth. God knows and loves us individually. Tonight as I was visiting with another couple here in the hospital we agreed the only way to get through hard things is to have the faith to put it in Gods hands and turn it over to him.  It is through faith and prayers we are able to find peace in our lives and joy in this journey. 

Back in Baltimore

It has been an extremely busy few weeks getting ready to travel back to Baltimore for the removal of Ricki's tumors that are located between her left lung and heart in addition to preparing my classroom for while I am gone. I just looked over my lists and am amazed that everything got done! We couldn't have accomplished it without so many angels coming to our aide. Those sweet Angels cleaned, cut out things for school, made copies, pasted, sewed, fed us, prayed for us, gave us lots of hugs of reassurance, and were so generous in every way in helping us get to Baltimore. How blessed we are to have such sweet support! 

So that I could get in the first day of school our flight left later and we arrived at the Ronald McDonald House at about 1:30 a.m.  We are resting up today in preparation for her first surgery tomorrow. We will see how our sweet Ricki is doing and try to something a little fun too. 

I have been asked what Ricki's schedule is for her upcoming surgeries.

Friday morning she will have a two hour embolization procedure where they are going to embolize the arteries that are near the tumors in order to minimize the bleeding during surgery.  

Tuesday will be the big day. To remove the tumors they will approach the surgery from her left side. In order to get to the tumors they will deflate her left lung. They are hoping the tumors are not attached to the organs and that they will be able to peel them off her lung and heart. If they are not able to peel them off they will remove most of the tumor. The other concern is that these tumors grow from nerves. These tumors are coming from some of her autonomic nerves. Because of the location of the tumors they are hopeful this will only affect her bodies regulation of hot and cold on her left side. Likely after her surgery her left side will get randomly cold, or have like a hot flash and get sweaty on her left side. 

We have felt peace and comfort as we have approached this surgery. We are so humbled by the outpouring of love and support for Ricki. Please know how much your prayers are felt. The power of prayer is real. It is hard to put into words but when The drs told us of the seriousness of the situation as a family we were overwhelmed and distraught. As soon as others began praying a calm settled over our family and we were given the strength to move forward in faith. 

We finally made it on the plane!

This is a side view of the tumors that are coming out...

Ricki's Bucket List

When it was determined that they would do surgery to remove the tumors  Ricki made a bucket list of things she wanted to do before the surgery. She has been pretty determined but I wasn't sure we were going to be able to pull off her desire to go to Lagoon. Saturday morning began with the long list of things that needed to be done.  It was crazy but during our conversation I just started crying. So while sitting at the breakfast table we decided we really needed to do something fun instead of all  the things on the "to do" list.  We discovered they had a date night special if you came after 5.  The timing was perfect and Angie was able to join us as well so off we went to Lagoon.  We all needed the diversion and some fun. From the smiles you can see it was a pleasant and enjoyable evening ....Ricki even went on the newest biggest ride - the Cannibal.  What perfect Saturday night! 

Surgery Date

Johns Hopkins called and gave us the schedule for Ricki's surgeries... She will be admitted to the hospital on Friday the 25th and have a 2 hour surgery for the embolization of some of the arteries. This will prepare her for the main surgery on the 28th. 

Yesterday we went to Dr Randall at Primary Children's Hospital and he will be taking over Ricki's care when we return home from the surgery. He could have done the surgery for us and there is no doubt he would have done a great job but it was assuring to me when he told me that if he had a daughter with NF2 he would be taking her to Johns Hopkins. 

Now that the date is set we get to figure put plane tickets, place to stay, and all those details....But of course we have to add some fun. The fun keeps our minds occupied with things of a lighter nature. So Ricki has a to do list,.. Decide on a theme, make a few decorations for her hospital room, get some fun pjs and socks, make a pillow case, and do something fun with her hair and get her nails done before  surgery. 

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.