Recurssion Pharmaceuticals

Ricki just finished an amazing weekend!  Recursion Pharmaceuticals ask her to speak at their symposium and it is a sweet experience she will never forget. 

 

Words can't express the overwhelming love and support we felt from all the amazing and talented individuals that were gathered together at the Recursion Pharmaceuticals Symposium. They all had one purpose- To expedite the process in finding treatments for the many who are affected by rare disorders. All the individuals we met had come to work for the company because of their passion to do something that would make a difference. They had such burning desires to help children like Ricki who are diagnosed with something rare with no treatments or cures. It gave us such feelings of hope as we sat and listened to their excitement and love of what they were doing. Even on the bus rides to and from activities we would here them discussing what they were working on. What a comfort it is knowing there are people out there working so hard to help not only our daughter but the many out there like our sweet Ricki. 

 

 

Ricki always amazes us how she can pull it together and function on borrowed energy. When we got back to the hotel she crashed and was sound asleep before she had even taken off her coat. We look forward to the day we find the solutions and treatments and she can enjoy days like this on a regular basis and not have them totally exhaust all that she has to give. 

Botox Treatment #1

"Blood, blood, blood!"  -Ricki's Disney quote for the day from Zootopia 

In August Ricki's neurosurgeon suggested that it was some of her tumors that  were causing her migraines and that because of their location the botox treatments for migraines could possibly help. Unfortunately insurance can slow down the process and finally 7 months later... Ricki was able to get her treatment yesterday. It requires 32 injections and Ricki opted to be sedated for the procedure. We have never had a nurse come in when she is going to give an IV and bring in a towel and put it on Ricki's lap and say "I am a little messy when I do this" I assumed she meant she was messy with all the papers from the packages for doing an IV. Little did we know what Ricki was in for... The veteran nurse was teaching a new nurse and was explaining things as they went. They asked Ricki where she preferred her IV and she showed them where she liked them.  They did the usual prick and it didn't work so they tried again. Second time they pricked and after a considerable amount of digging gave up and went to the other arm.. Third prick was making me sick and it wasn't even my arm as I watched her keep moving the needle around in Ricki's arm trying to find the vein. I was relieved when she finally found the vein. However my relief was short lived as I began  seeing blood from Ricki's arm shooting all over and landing on the white towel she had laid on Ricki's lap... Ricki has been through a lot over the years but this has never happened before.  Poor Ricki went into shock and about passed out.  They had to give her oxygen and had her lie down. I couldn't understand how they salvaged that IV but they taped it all up and said it was good. I walked back with her and the anesthesiologist began putting the sedation medicine through the IV. He told Ricki it would sting - which again she is all too familiar with. She kept telling them it was really hurting but they kept putting the medicine in anticipating she would drift off to sleep-but she never did because it was all going into her arm and not the vein:) So... IV #4  the anesthesiologist was awesome and had it in with no problem.  Within seconds the medicine went in quickly and she was good to go for her treatment. 

Ricki awoke from her treatment feeling great.  As everything wore off she did have some pretty miserable nausea which they had anticipated. It breaks my heart how we fix one thing but there seems to be a trade off. 

This morning has been great so far with minimal head pain. It is kind of sad but a 5 in pain is where Ricki is able to function and push through things. So when I say minimal it is still not gone but she is able to get up and do things. It would be so wonderful if some day she were pain free but we will take it at a level where she can function.  We are hoping this Botox is the answer to keep her there. 

Pain

In the past month or so Ricki's pain has kept getting progressively worse and we were so grateful when they decided to admit her this week. After admitting her One of the questions they keep asking is when did the pain start? .... I can't think of a time she hasn't been in pain for over 4 years... Before we even knew she had brain tumors  and NF2 she  complained of constant headaches and pain. 

Ricki has become a champion of living with constant pain and patiently seeks help to find relief. She has endured painful surgeries. She has tried many different medicines and had to endure their side effects. She has had to deal with doctors that tell her it's all in her head and people around her that think she is faking it... 

It has been a rough 24 hours that feels like it has been several days. They have been doing some infusions through an IV but she has had to endure 5 IV's (of which they have literally had to dig to find the vein) and the IVs keep going out. Tomorrow she will have a pic line put in so they can finish the infusions. 

We were having a sweet conversation that it was a fight for her life. We all recognize how extremely blessed she has been as she has gone through surgery after surgery. But, when you are in pain all the time and it keeps you home most of the time, and when you do go out you cant even enjoy it because you are in pain, there just isn't much  to get excited about. 

As we were wrapping up my "this is worth the fight" talk with Ricki I ask her to summarize where she wanted to be and of course she gave me a very typical Ricki response... She started singing a song from The Little Mermaid....

I want to be where the people are

I want to see

want to see 'em dancing

Walking around on those

Whadd'ya call 'em? oh- feet

Up where they walk

Up where they run

Up where they stay all day in the sun

Wandering free

Wish I could be

Part of that world

.........

I am fine....

2017 started off somewhat similar to 2016...Ricki began having chest pains on the left side that radiate down her left arm to her fingertips.  In addition, the pain wraps around into her back and down her left leg to the bottom of her foot. Initially when her foot was hurting she would hobble but now just walks. When I ask if the pain has improved she responds that it hasn't she is just used to it. I am in awe of her strength and resiliency. She is scheduled for a MRI this next week and then we will go from there.  We are also in the process of fighting with our insurance to get authorization for botox and nerve blocks for Ricki to hopefully give her some relief.

I came across this picture and it made me think of Ricki no matter how much pain she is in she always tells me she is fine :) 

Johns Hopkins December 2016

The Neurology team and staff are so warm and welcoming at Johns Hopkins. We are so blessed to be with some amazing experts in the field. 

Ricki was given a additional diagnosis of Postural Orthostatic Tachychardia Syndrome - which is of course another rare condition! Ricki is definitely one in a million in more ways than one. In some ways it is finally a relief however odd that seems.  We have been to several doctors and they have been telling us it is all in her head:( so it is a comfort having a cause for some of what she is experiencing. The next step is to experiment on some of the suggestions they gave us to lesson the symptoms and make life a little more comfortable for Ricki. We will be focusing on diet and some very specific excercises. They were so cute as they worked with Ricki. One of the challenges is any type of movement needs to be taken slowly.... No wonder she loves Flash the Sloth from the movie Zootopia! One suggestion was to sing "happy birthday" between each movement to let her body adjust to each new level. This is something she already had  started doing naturally but not all the time. 

The other issue that has been of concern was with some of the tumors on her c-spine. There has been talk of surgery but Dr. Blakely felt a better route for now would be an occipital nerve block that could relieve the pain without surgery. Her concern was that surgery could actually irritate all the nerves back there even more and make the pain worse so it is better to wait as long as possible to remove the tumors. 

Several other things we're discussed and we loved how thorough Dr. Blakely was. It was fun to watch how detailed she was and she knew exactly what to be looking for. She was vey optomistic and felt Ricki was really doing great with all she had going on! 

We feel so blessed and have some relief knowing we have someone with more experience keeping an eye on things with Ricki that we can continue to go to for the future care of Ricki.

                             

                                           

                             

Dad's Post fromJohns Hopkins

Johns Hopkins medical team was awesome. So good to be with specialists that understand what's happening with this awesome girl. They said Ricki is coping amazingly well with all she has going on. So true. She is the toughest, most positive person I know. Love you girl! 

    

                                

Big week!

   We have a big week ahead! We are so excited! We had the opportunity to meet Dr. Blakely at an NF conference and she was so sweet and kind to Ricki. Ever since, we have wanted to work with her in trying to figure out what is going on with Ricki. This week our dreams are coming true and we have our appointment with an NF2 specialist Dr. Blakely in Maryland. We have high hopes that Dr. Blakely can give us some answers or avenues to improve Ricki's health and ability to function. Our hearts have been breaking for Ricki. She has been in a lot of pain this week. Ricki has never been much to complain about her situation. She lets us know she is in pain but never complains or cries about her life.... Until this past week. She is tired of being in pain, not feeling well, and not having the energy to do much. Just getting ready for the day wears her right out and she  needs to rest. It breaks our heart to see her eyes tear up in frustration. We are feeling so blessed with this opportunity. We are so blessed by the love and support of many and recognize there have been many miracles that have transpired since we began this NF2 journey with Ricki. Thank you to everyone for the  love support and prayers - we couldn't do it alone.