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A Letter To Wish Families Fighting An Illness, From Ryan’s Parents

Children’s Wish Foundation is delighted to introduce a guest post from Ryan’s parents. In the midst of devastation, overcoming loss or coping with a recent diagnosis, we hope this letter will encourage and inspire parents, siblings, grandparents, aunts and uncles to endure difficult circumstances and to cherish every moment possible while fighting an illness.

Ryan with MickeyWhen Ryan was first  diagnosed our whole world fell apart.  Nothing can prepare you for your son having a cancerous brain tumor.  We were grateful that they found the tumor when they did, because if they hadn’t it could have killed him.  Ryan had a 10 hour brain surgery within which they were able to remove his entire tumor.  That was the longest 10 hours of our lives.  Having to hand him over to the surgical team was one of the hardest things I have ever done.  The risks with that kind of surgery are daunting.  We just wanted him to wake up and be okay.  Ryan did well and recovered quite nicely from his surgery.  We were very lucky that his side effects from the tumor and surgery were minimal.  Then we waited, and waited, and 4 days later the Neurosurgeon came in to tell us that is was indeed cancer.  At that point we just wanted to know what kind of treatment plan we were dealing with. A few days later we met with Ryan’s Oncologist and we were told that his best chances were a protocol that involved 5 months of Chemotherapy and then a Stem Cell Transplant.  The transplant involved 6 days of high dose chemotherapy and then giving him his own stem cells back.  Ryan’s chemotherapy took place inpatient which was very difficult.  Having our family torn apart was very, very difficult.  We treasured our days at home together as a family.  I tried to work during the first two rounds of chemo, but it was just too difficult to be away from Ryan when he needed his mommy the most so I went out on leave.  Ryan tolerated his first two rounds of chemo pretty well, the usual nausea and vomiting, but overall he did okay. After his 3rd round of Chemotherapy Ryan got very bad Mucousitis and ended up in the hospital over Christmas. Ryan was in so much pain as as a mom it tore my heart out.  That was the most difficult Christmas ever.  Ryan got very bad Mucousitis after his 5th cycle of chemo and ended up in the hospital again.  After he recovered from that he went straight into transplant.  We were so grateful Ryan tolerated the high dose chemo well and he recovered quite quickly.  Ryan was in the hospital for 61 days straight because of the mucousitis and transplant.

CYNWU7mW8AAtxeBWe first contacted the Children’s Wish Foundation when Ryan was in treatment.  We found out about the “Young Mind’s Program” and it was perfect for Ryan.  Ryan received an iPad and with our laptop at home, he was able to Skype with his sister, Hope.  As part of the Young Mind’s Program we were told that when Ryan turned 5 he could pick a wish.  It helped us SO much during treatment to dream of a wish trip.  Something to look forward to after all we had been through.  We just wanted our precious son to be well and to be able to have a dream come true.  After Ryan was discharged his little body needed time to recover from all the chemotherapy.  He was in Physical Therapy and as the weeks and months went on he got stronger and stronger.  His immune system was fully recovered 6 months after treatment ended which meant he could be a normal kid again!  10 months after treatment ended Ryan turned 4 and was discharged from Physical Therapy and was able to start preschool.  We were so grateful he was continuing to be in remission and to improve physically.  We started talking to Ryan about his Wish Trip and what he might want to do.  We showed him pictures and videos of various things and he was sure he wanted to go on a Disney Cruise.  Ryan loves Disney Characters and has had a love of ocean creatures since he was very little.  In June 2015 we were contacted by Children’s Wish Foundation about what Ryan might want to do for his Wish.  We submitted what Ryan wanted and a few weeks later were informed that Ryan’s wish of going on a Disney Cruise would come true in January 2016!  We cried tears of joy and excitement!  Could it really be after all we had been through that Ryan would get to have a Wish come true and that we would be able to have this incredible experience as a family?  Honestly, we were in shock for a few days!!  We pulled up videos to show Hope and Ryan and there was even a show on TV all about Disney Cruises. We asked Ryan what he would want to do on our trip and the one thing that stood out is that he said he would love to meet a dolphin.  Ryan LOVES to swim, loves the water and the beach, and getting to get up close and personal with a dolphin was right up his alley! 

Ryan_snorkelWe left for our trip and Ryan was SO excited to get on a plane.  When we were on the shuttle on the way to the Port he couldn’t believe his eyes as we approached the Disney Dream cruise ship.  His face lit up at how large and majestic it was and that we were going to get to sail in the ocean on it!  We had the most incredible time on our cruise.  Our cabin was amazing- both kids loved the bunk beds and our cabin host was so incredibly nice.  The kids both LOVED the kids club and all the pools on the ship.  Hope and Ryan are both picky eaters and the staff on the ship was so accommodating.  Our first Port was Atlantis.  Ryan had so much fun swimming in their pools.  There was a huge, shallow pool that was 3 feet deep that our kids just loved.  The grounds were truly incredible.  We made our way over to Dolphin Cay to have our dolphin encounter.  Ryan could not have been more excited or loved it more.  When we got in the water and the dolphin came swimming over his face lit up with excitement.  He loved getting to pet her, feed her, and interact with her.  It really was a dream come true for him….and for us getting to see him so happy.  The next day we were at sea and got to explore the ship and all the fun things it had to offer.  The kids club, a scavenger hunt on the ship, and so many characters to meet!  Hope and Ryan also loved all the shows on the ship.  We will forever remember their squeals of excitement and laughter!  There was also a special Wish Trip meet and greet with Mickey Mouse with the 10 other Wish families that were on the cruise.  We also had special treats waiting for us in our cabin every afternoon- a stuffed Mickey Mouse, cupcakes, cheese and crackers, chocolate dipped strawberries.  We really got  the royal treatment!  
Ryan A.-Dolphin1Ryan’s wish was beyond a dream come true.Most days we could only focus on the moment because you never knew what was going to happen that day.  It is a life changing thing to contemplate your child might not survive his diagnosis. It cannot be described adequately. 

  When we found out about Children’s Wish Foundation and their young minds program we were very excited. We were not sure what kind of wish they would give Ryan but we knew from day one what he would want. When we actually found out it had been approved  my wife and I just sat and cried. We had dreamed of being past that nightmare we had been living and actually doing something “normal”.

Ryan A._dolphin and parentsKnowing that Ryan could have a Wish trip during treatment meant a lot to us because it really gave us something to look forward to at such a dark and difficult time.  Getting to see the joy he got out of every moment on his trip is something we will treasure forever.  We never would have been able to give him this kind of trip ourselves and we are SO very grateful for the Children’s Wish Foundation!!  When we got home Ryan said “I can’t believe my wish came true!!!”. We ate, swam, played and watched all the shows until we all could not keep our eyes open any more. This is something we will remember for a lifetime.

 

Thank you for reading.

Sincerely,

Ryan’s Parents

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