Guest Blog – Ryley

**This is the family we are honored to support through tonights San Jose Mamas Night Out. In honor of Jennifer we strive to find a local family for each of our events that need some unrestricted financial help.. This is their story..**

Ryley’s Story by Lisa Strickland

Ryley is our three-year-old daughter that was diagnosed with stage for non-amplified high-risk neuroblastoma Thanksgiving Day of 2014. Her tumor extended from her adrenal gland all the way up to her neck; it was one of the biggest tumors the doctors had ever seen. The neuroblastoma had also metastasized into her bone marrow and 80% of it had invaded her marrow; she had mets in her bones, and the doctors explained to us that it was “wide-spread” and it was going to be a very long road ahead of us with a ton of treatments, which included approximately 6 rounds of chemo, surgery, stem cell transplant, radiation, anti-body therapy, and then maintenance therapy for six months. She would also need follow up scans throughout the years of being in remission, and would be followed for the rest of her life. Neuroblastoma is one of the most aggressive forms of cancer, and survival rate is 50%; and if it comes back, survival is at a devastating 10% chance.

We are in the process of adopting Ryley and met her in February of 2015 after being in a hospital for three months without a home. She had been a foster child and when she was diagnosed the hospital and social workers could not find a home for her because of her complex medical care. We found out about her just three weeks after being approved to be foster parents, and knew she was meant to be ours through prayer, and of course right when we met her.

Throughout the year, Ryley has done exceptionally well with her treatments. The chemo managed to break up her tumor into four separate tumors making surgery extremely successful. Unfortunately, her cancer was not as responsive to the chemotherapy and instead of the protocol of six rounds, she needed nine, which is a lot for this type of cancer and a three-year-old little girls, but thankfully after the ninth round, her bone marrow was clear, and she was set for surgery. In fact, when the surgeons went to get two of the tumors, they had disappeared! The surgeons had explained to us that one of the tumors (behind her heart) was life-threatening to remove, and the surgery was going to be extremely complicated, and we could possibly lose her during the surgery because it was wrapped around her aorta that attaches to the small intestine, and vena cava.

We were very afraid, but knew that we were not in control, but God was, and we trusted Him. We prayed the entire surgery, and when the surgeons came out after 11 hours of surgery they gave us the best news we could ever hear; when they went up to get the tumor out that was behind her heart, the tumor was no longer there! This was the same tumor that had been visible just 24 hours before on her scans. We were so very happy! The other tumor that had disappeared (also visible on the scan the day before) was in her neck. The surgeons were ecstatic, just as we were as you could imagine. They explained that her surgery was “textbook” and could not have gone any more perfect. They had managed to remove the other two, and also spared her kidney, which we were told she was going to lose as well. We knew right then and there that God had a big plan for this little girl, and that she was going to be okay.

After Ryley recovered from her surgery, and after the scans, and bone marrow aspiration confirmed that she was free from cancer (praise God!) She was ready for stem cell transplant. We knew this was going to be another tough treatment, but we also knew through our faith that we were not alone going through this, and that God still had big plans for Ryley. We also have Ryley’s four-year-old sister so it was a pretty stressful time knowing these two sisters would be separated once again while Ryley was in the hospital. The stem cell unit does not allow siblings under the age of six to visit, so we did not know how this would affect either of them. My husband and I had to figure out the best options for all of us, and decided I would stay with Ryley during the week, and he would go and relieve me on the weekends so we could be with both girls. Steve works and I do not so it only made sense. We were told we could be there up to two months.

Ryley again did amazing through her stem cell with some of the side effects that were expected. She developed mucosisits (mouth sores, and sores all the way down her digestive tract) that was extremely painful to her, and had developed urinary track infections that left her with fevers for 8 days. Instead of the two months, Ryley managed to get discharged after 45 days of being in the hospital, and recovered amazingly. We were able to get through it as hard as it was with the support of family, our church family, and the incredible community we live in. I look back now, and even as hard as it was to watch a three-year-old go through what she went through, I know it was our faith in Jesus that has got us through the most difficult times we have ever been through. He has managed to bring her through the most difficult treatments with flying colors.

Her stem cell transplant was four months ago as I am writing this. We were told when we were discharged to prepare to come back either with an infection or a fever. I told the nurses, thanks, but not Ryley. In the entire year we have had her, she has had one fever where she had to get admitted, and never had any form of infection, and we knew she was going to continue to amaze the doctors. Well, guess what, she did and still does continue to amaze the doctors. Ryley has done so well since her transplant that she in fact, did not need to go back because of an infection or a fever, but went back for her routine clinic appointments only to be told how outstanding she is doing, and how incredible she looks. Her blood counts have recovered, and have managed to stay stable, and we just got home from her Make-a-Wish trip at Disney world last week, and were told after four months, she is finally free from being on isolation, and can be a “normal” child again!

Ryley has just completed one round of antibody and she will have four more. She has also begun maintenance medication, which also helps destroy the tiniest cancer cell that may be lurking around in her body.

By June, she will have her central line removed after her last round of antibody just in time for summer, and we can hardly wait. Her first round was not very pleasant as she experienced a few of the side-effects mentioned, which included pain, high fevers (105 degrees), and unfortunately they had to cut the treatment short because her eyes became dilated, and her vision changed. Once they did stop the antibody, her side effects dissipated all except the dilation of her eyes; they are now getting better, but we are not sure what the rest of the antibody will do, so we just do what we have done all along, and trust the One who does know, and we put our faith and trust in Him. We know that the hand of Jesus has been on her, and will continue to be on her for the rest of her life.

I truly hope that Ryley’s story has encouraged those who are going through, have gone through, or are just about to go through a similar situation. The best advice I can possibly give is to increase your faith, and to reach out to those around you to help you get through this. You cannot do something like this alone; we were meant to be supported by each other, and to live in community together. I know each one of you can get through this, just as we have gotten through this. “With God, ALL things are possible”.

3 Responses to “Guest Blog – Ryley”

  1. What a beautiful picture of faith lived out… Beginning to end. Prayers for your family, Ryley and the hearts hearing your story tonight. Thank you for sharing!

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