Madelynn’s Story

Site created on April 25, 2015

Madelynn Joyce and her twin sister Allison Marie were born premature on December 6, 2014. Allison came home after 17 days in the NICU and Madelynn came home 2 days later on Christmas day to play with big brother Michael Raymond. The last ultrasound I had before I delivered they noticed that Madelynn had some extra fluid around her kidneys. They were not concerned and said that it was fairly common but wanted to keep an eye on it. While in the NICU they repeated the ultrasound and found one simple cyst but did not think it was anything to worry about and said the her pediatrician could follow up with it. At her 1 month check up they ordered and another ultrasound and noticed there were multiple cysts in both kidneys and referred us to a pediatric nephrologist. The diagnosis was either some form of polycystic kidney disease or renal dysplasia but they needed to have more ultrasounds as she grew to see what her kidneys were doing. They did some lab tests to look at her kidney function and those all came back great. April 7th was the next ultrasound and they wanted to check Madelynn's liver as well because with polycystic kidney disease patients have liver involvement. The next day we met with her nephrologist and were excited that everything looked great and she thought that Madelynn had undeveloped kidneys (renal dysplasia) and that she would be fine as long as her kidneys continued to grow with her. Then we found out that she had what appeared to be a solid mass in each kidney and they ordered a CT scan to get a better look. On April 16th Madelynn had the CT scan and the nephrologist called us that afternoon and stated that she was referring us to a pediatric oncologist if we could see him the next day. We were anxious and wanted answers...fast! We met with the pediatric oncologist the next morning and he thought that our daughter had bilateral Wilm's tumors. He said they are rare and wanted to refer us to a doctor at St Jude in Memphis for confirmation on the diagnosis and recommendations on chemotherapy and that eventually the plan would be for her to go to St Jude to have surgery to remove the cancer once the diagnosis was confirmed and she completed some chemotherapy. This is a place to share our journey with family and friends as well as a source of information because it never gets easier for us to talk about it.

Newest Update

October 01, 2021

Journal entry by Kara Johnson —

I have not posted in a while as we have had a very rough month. Madelynn’s counts have been very low and needing transfusions. We found out about 2 weeks ago that the chemotherapy is not working and we are out of options. We underwent a CT scan to get a better view of everything in her chest and it was not good. She has fluid around her lungs the tumor is taking up almost her entire left chest and is pressing on her heart and all her major airways on her neck. It is nothing short of remarkable how she is able to breathe and continue to be our Maddie girl. 

We have focused on family time and wanted to keep this news to ourselves for a while. She is slowly deteriorating and it has been difficult to watch. Losing weight, increasing pain, more tired and pale has been an everyday thing we face. Of course we are all feeling defeated and we have told Michael and Allison who are struggling at times. We are remaining positive that our last days with our girl will be peaceful and that we are able to manage her pain and breathing. We were able to make it out to the zoo last week and we will always cherish moments like these.

“Trust in the Lord with all your heart And do not lean on your own understanding. In all your ways acknowledge Him, And He will make your paths straight.”
‭‭Proverbs‬ ‭3:5-6‬ 

Read More of the journal titled "October 01, 2021"
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