August 24, 2020 was the start of a long journey for our sweet Finley Reese. Actually it started at 8 months old. When she was 8 months old Ryan and I noticed Finley Reese’s left leg was much “chunkier” than her right leg. We had trouble getting shoes and boots on her leg. I took her to the pediatrician in California and she assured me it was baby fat and would even out.
Three months later, it continued to get larger and I asked again but it was dismissed as baby fat. This continued until 18 months. I kept saying something isn’t right, baby fat doesn’t just grow on one side. Fast forward to May when we moved back to South Carolina. I took her to her new pediatrician for a well check and the first thing I said was I need you to really take me seriously, her left leg is a lot bigger. Immediately he said you need to get her into Shriner’s for an orthopedic eval. Of course this mama got on google and found something called hemihyperplasia and hemihypertrophy. I told Ryan I think I found our answer but we will see.
August 24th I took her to Shriner’s hospital. Due to COVID only one parent was allowed inside. We went in had some x rays run and her leg length was the same but there was a big circumference discrepancy between not only her left leg but her ear, arm, leg, and foot. She was diagnosed with hemihypertrophy/ hemihyperplasia. Hemihypertrophy is a genetic disorder characterized by overgrowth of one side of his or her body in comparison with the other. Since hemihypertrophy is an overgrowth syndrome, children are at risk for developing certain childhood cancers. The two most common forms of cancer are Wilm’s tumor (kidney tumor) and hepatoblastoma (liver tumor).
After receiving the news the orthopedic surgeon referred us to genetics to see if she has my other syndromes associated with hemihyperplasia, but first he ordered a stat abdominal ultrasound to check for tumors. The ultrasound was scheduled for 8am September 9th. Ryan and I planned on leaving from there to go visit his parents. Again due to COVID one adult in. Finley Reese and I go into the ultrasound room. Things were going well and then we turned over. Finley Reese was in some serious pain when they were viewing the kidneys. The tech took a minute and said I’ll be back. I immediately felt sick to my stomach and texted Ryan I think something is wrong. After 20 minutes she came in gave Finley Reese and I a smile and said you’ll get your results soon. We walked out and I was so weak I said Ryan you’ve got to put her in the car I don’t feel good about this. He did and we started to go to Aiken. Ryan being the guy he is tried to reassure and calm me down. Maybe it was just taking time to review but deep down he knew too.
We got about 20 min away from Aiken when we got the call that would forever change our lives. “Hey Mrs. Izard we wanted to call and let you know the result of the ultrasound. We have found a tumor above Finley Reese’s left kidney. She needs to be at oncology by 8 am in the morning.” I had Ryan pull off and we just lost it. Both girls in the cars asking questions and us not having the words to say. We felt our world crash down. How long had this been in here? Why have we been dismissed so many times? What’s next? All we knew is we needed time to process and so we went to Ryan’s parents and let the girls out and then talked it over.
8am Thursday was oncology and our girl there. Again due to COVID one parent. Oncology with your 2 year old is the last place you want to be alone. We went in she ordered CT Scan and labs. Our labs were hard to get. Her veins were blowing and blood was clotting. After multiple sticks we got two tiny tubes. Bloodwork came back great but the CT scan showed the tumor and an enlarged pancreas. We went back for the game plan. That day we met with the team and surgeon. This needed to be removed and at first look it looks like neuroblastoma. Her adrenal gland would need to be removed along with an ultrasound once inside to check out the pancreas. We talked about some what ifs and some plans but all everyone could conclude was it needed to come out then we would talk.
Tuesday September 15 was the hardest day of our life. Our fighter went back for surgery and I sat alone in the waiting room alone for 3 hours while Ryan had to say goodbye to his world outside and wait in the parking lot during the procedure. After what seemed like an eternity the surgeon came out.
The surgery was successful in removing the tumor. The problem is nobody has seen this tumor before and nobody know what it is. There was also a little surprise and some tissue that did not show on the scans attached to the pancreas. In order to remove that they had to cut her small intestine and repair it. When they repaired it they put in a temporary JP drain. This monitors leaks from the surgical site. This will tell us if when she eats and drinks if there is an issue that needs to be repaired inside. The tumor some lymph nodes and the other tissue is being sent off and still trying to identify what tumor this is.
So now we still wait. Finley Reese is still in the hospital. She has had a long 4 days. Her daddy has seen her a total of 3 hours since he said goodbye to her for surgery due to COVID and mommy has left for 3 hours to see Bowman Claire. Finley Reese finally got her first thing to eat.... a handful of goldfish and some water today for the first time since Monday. We will see how her Jp tube does tonight but we are leaking blood a little which could be due to moving around. She is on lots of pain meds and still has a long road. Thank you for all who have called, texted, prayed, offered things we are so grateful for our tribe. We wanted to create this because her journey doesn’t stop here. This is an easy way to update. Thank you for continued prayers for our little fighter!
Finely Reese got to come home this afternoon with the understanding of a long week of recovery. We are so thankful she is not inpatient and can be happy in the house with her family. She is still on some medication and we hope to see symptoms begin to disappear in 3 days and for her to begin to eat again in the next three days. She is happy (for the most part when not in pain) and talking again! Thank you for prayers! Please continue to pray for her this week and for next Monday’s cancer scans. It will be a hurdle after such a traumatic visit.
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