March 25th Biopsy results

Dr. Bollo gave us the results today from Ricki's biopsy. Ricki was disappointed that all that pain was for not and that she might have to do another biopsy again.. Here is what the dr emailed us today.

"The report basically says the biopsy may have been on the edge of a tumor, and as such there’s little they can say concretely.  Specifically, while they didn’t see anything too concerning, they’re not even sure it’s tumor, and if so even what type it is.  I suspect to answer this diagnostic question another biopsy may required, but I’ll discuss it with Dr. Mahan as well and we’ll plan on seeing you on Tuesday."   

We had an appointment today at Primary's in prep for her surgery next week.  Ricki was feeling down afterwards for several reasons...one she might have to have another biopsy, the surgery is in a few days and to top it off her friends and dance team were off to a dance competition today and tomorrow. It breaks her heart not being able to participate and do the things she loves to do.  We went to the mall to try to get her mind off of things and we came up with something for her to get excited about. She absolutely LOVES anything Disney! We have taken her to see Zootopia three times since it came out and her favorite character is the Flash.  As we were shopping we came up with a plan to get a few things to decorate her hospital room with Zootopia. It seemed to cheer her spirits.. 

As parents our hearts are aching and we are anxious for this coming surgery. Each surgery it seems she loses a bit of something. We love her and want what is best for her and as usual are hoping good things will come to Ricki. 

March 15th CT guided scan tumor biopsy

Today Ricki had a biopsy to make sure one of her tumors isn't becoming cancerous. She got to be one of the first patients in their new same day procedures facility. It was fun being in a room with all new things...so new neither the tv or the computer were properly hooked up and working. 

Once she had her IV in and was ready to go they let us walk down with her into the room where they would be doing the biopsy. It seemed fitting since she had just been to her first Jazz game to have the room all decorated with Jazz murals and memorabilia. It was comforting to be in there with the nurses, anesthesiologist and the dr performing  the biopsy. It was comforting knowing we were leaving her in good hands.  The procedure went well and took just over 2 hours.  Unfortunately however she woke up in a great deal of pain and after 31/2 hours was still experiencing some pretty intense pain.  They determined she would need to spend the night to get her pain under control. We ended up spending 2 nights and got her pain at least a little more manageable so we could take her home.  We were all very relived to be home after planning on only bring gone for a day:) 

Fun afternoon

After a Dr. Appointment on the 4th Ricki dropped off some more craft kits at Primary Children's hospital. She has donated 500 items already this year. I am so proud of her!  Next we ate at her favorite place..Chic-Fil-a and then off to her other favorite happy place the Disney Store to look at the new movie Zootopia memorabilia.  Her favorite item...a little girls jacket with a bunny hood, bunny tail and to top it off a police badge. I am grateful for the magic of Disney that always brings a smile to Ricki's face. 

March 2,2016 back in the ER

Ricki has really pushed herself the past few weeks and by last Friday she had a migraine. Since she has been living with these so long we have a lot of different things we try but by Wednesday it was more than she could bear and the neurologist sent us to the ER where he had ordered a treatment for her.  She slept for the next couple of days had a good day yesterday and is back with a migraine today. This girls just doesn't want to be down! 

Surgery and Biopsy Scheduled.

This week Ricki's surgery to remove the tumor by her lung was scheduled for March 29th.  It seems so far away but it will be nice because I am about out of days off and her surgery is scheduled for Spring Break. Little tender mercies... They also have scheduled her biopsy for March 15th. They said to plan in 4-6 hours so it will be another long day for Ricki. She is relieved they will do it under general anesthesia - it sounds like a long and painful undertaking.  It has been interesting with each scheduling of a surgery I feel like I go through mourning....my heart aches and I am sad. I am grateful for the wonderful medical advances that we enjoy and know we are so blessed. Yet, I wish my sweet daughter did not have to endure the pain and challenges that she does so gracefully.  I have to reach for a deeper purpose in why she has to endure such suffering.  Down deep I believe that we have a loving Heavenly Father that gave us the choice, the opportunity to leave his presence and experience mortality. The only way to grow and learn is through experience. Ricki with her sweet and kind heart knew if she went through these experiences not only could she develop faith, strength, perseverance, compassion, patience and a myriad of other attributes I believe one of the main reasons why she agreed before she was born was that she knew she would be able to help others as well. As a mother I have learned much from her laughter, form her patience and from her kindness. She continues to inspire me and I have to have faith that come what may our Heavenly Father has a beautiful plan and he will be with her as she goes about accomplishing her purpose here on the earth as she grows and also blesses others along her journey. 

Rare Disease Day 2016

With everything going on this has been a sweet diversion for Ricki. She had the opportunity to go to the state Capitol and participate in the Rare Disease Day. What a blessing to advocate for new need for more research for those with Rare diseases. They say a picture is worth a thousand words so here are pictures.

Family support of Ricki

It was an amazing day for Ricki.  All of her siblings but her brother serving a mission were there to support her. It was such a blessing to have some fun family time together! Thank you Gina for making it possible! 

February 27, 2016

Ricki was pretty excited! We attended our first Rare symposium today followed by Ricki getting to join thenJazz on the court for the national anthem. We are so blessed to be working with such a caring group of people. They made arrangements for Ricki to rest in a hotel room knowing that it would be a long day for her. We feel so blessed!

February 17

We met with Ricki's neurosurgeons today to review her PET scans. She has a little more than we had anticipated going on. The doctors informed us that Ricki's tumor in the thoracic outlet is growing and is about the size of a small orange and needs to come out. They will schedule a time when both surgeons can perform the surgery.  We also discovered she has another small orange size tumor sitting just above her aortic arch. This tumor is on the threshold of being cancerous and so they want to do a biopsy of that tumor but it will be quite the procedure because they will need the guidance of a ct scan as they do it.  Even if it comes back negative we will have to have another PET scan in 6 months and they will be monitoring it closely.  Not exactly the news we wanted to hear.

On the bright side however...in preparation for Rare Diseaase Day they posted Ricki's photos and story ! They turned out beautiful!  If you are interested in viewing her story her link is;

http://utahrare.org/ricki/ 

http://awareofangels.org/ricki-neurofibromatosis-type-2/

February 3, 2016

Have you ever heard of Nuclear Medicine? Well we hadn't until recently.  In Ricki's journey with NF2 it seems that we are learning something new at every turn in the road.  Tomorrow we will be under the care of the Nuclear Medicine department at Primary Children's having a PET/CT scan as they determine how best to help Ricki.  Although Ricki may be missing a tumor suppressor gene she is not lacking in other areas.  She has a lot of faith and hope that the Dr.s will be able to fine the answers that will lead to some relief from the pain she has been in the last few months. 

February 3

Who would ever think a Dr. Visit for Ricki could be a blessing in disguise? It was a beautiful and peaceful drive to Salt Lake.  Then afte the appointment since it was rush hour we went to dinner and just relaxed. It was a much needed break!  They have scheduled her PET/CT scan for next week.  Ricki you amaze me with your faith and endurance as the wait for relief continues. 

January 2016

We were able to have a quick get-a-way.  It was like a breath of fresh air. Angie was able to come and join us. Sometimes that is just what Ricki needs -a little sister time.  It was great to see some smiles. Thanks Angie! 

January 27, 2016

We are feeling grateful tonight. We have a warm cozy room at the Ronald McDonald  House so we don't have to get up at 3:30 a.m. to take Ricki for her another MRI. She is grateful they will do it while she is under general anesthesia because it has become to painful to lay flat on her back for so long.  

January 23,2016

These are just a few more pics of Ricki's amazing day! 

January 23, 2016

Ricki has been so excited at the opportunity to participate in the Utah Rare teen photo shoot. Today she had the opportunity to be with some other pretty amazing teenagers all with challenging and Rare health issues. The two amazing women, Gina  and Season, who spear headed this project really understand what these kids are going through.  The feelings of isolation, not getting invited to activities and parties, not being able to attend school, losing friends, not getting to participate in the activities that you love, and watching others your age move on with their lives. She thoroughly enjoyed the companionship and being pampered for the day. She was exhausted when she finished but said it was totally worth it! 

January 15, 2016

Ugh! Ricki was actually feeling good today -(the first time since the middle of November) She had a seizure at school and was unconscious for about 8 minutes so they called the ambulance.  She is doing better now but they want to run some tests.  I am glad it's Friday. It has been a long week. 

One more January 12,2016

One last post for the day....after finishing up her EMG and dr appointments she finished off the day by taking in some more craft kits.  It has been fun to see how that always lifts her spirits.  It has been a good day...feeling blessed, grateful, and hopeful. 

January 13, 2016

Today started out early with our first appointment at 8:30. Ricki was checked in at the University of Utah for her EMG.  Ricki is so Brave! I was just sick watching as she had the EMG done. BShe did request to play some Disney music to keep her mind focused on something else other them poking her with needles and shocking her to see if the nerve would react.  She has become pretty amazing with her breathing techniques as she deals with her pain. We met with the neurosugeons after and they EMG showed she did have nerve damage in about half the nerves they tested.  Ricki walked out of her appointment with a smile on her face.. There is hope for some relief from her pain.  She is in good hands with Dr. Bollo and Dr. Mahan. They both agree the tumor needs to come out! It is kind of sad to be excited about surgery.     

January 12, 2016

They got. Ricki's EMG scheduled for tomorrow along with an appointment to visit with the neurosugeons afterwards. It is a crazy set of emotions that are just hard to express...I found this picture yesterday and it made me so grateful for the time in her life we didn't have to worry about the tumors in her little body. Looking back however we had begun to notice some small things that weren't quite right but couldn't pin point the problem.  

January 7, 2106

Ricki's neurosurgeon Dr. Robert Bollo contacted us today to update us.  He has been working with Dr. Mark Mahan to determine the best treatment to address Ricki's pain. New are excited to have another wonderful surgeon on 

Ricki's team. Life is always an adventure with Ricki.  She has had EEG's EKG's and now they want her to have an EMG! Thanks again for all the prayers in her behalf.bI can see in her countenance that although the pain has not been removed that her burden has been made light. 

January 5

We are still waiting to hear from the doctors and Ricki amazes me with her strength and patience.  She laughed and smiled tonight when her youth group came over for a visit and afterwards she cringed in pain but said it was totally worth it...Last night she wanted to put a few more coloring kits together to give her something to take her mind off the pain. She is definitely stronger than her mom because during those moments when she just wants to hold my hand because she is really hurting -I think my heart is going to break :(