Jun 15, 2021 Latest post:
Jun 20, 2022
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Our three year old daughter, Claire who has such a big personally, so full of life, and great spirit was diagnosed with Ewing's sarcoma on June 14, 2021.
Claire's background story.
As baby I noticed one of her legs were noticeably different in length compared to the other. Our pediatrician referred us to Dr. Culotta. From our very first appointment in 2018, we fell in love with him. He is amazing and so genuine. He always took the time to talk with us, answer all our questions, and just so caring. Claire was worked up through exams, X-rays, and an MRI. There were no underlying reason for her condition. He diagnosed her with general leg length discrepancy of her left femur. This just meant through the years, we would keep taking X-rays to measure the differences between the legs and to gain statistics that would help guide our plan later. We learned she will need a leg lengthening surgery done at some point possibly between the age of 7-9 in order for the internal fixation hardware to fit.
Fast forward to December 2020, Claire started complaining of pain in her leg. After a couple of restless nights, we brought her in to see Dr. Culotta. Like always, we did an X-ray to check on things which showed a fracture in her tibia. We do not recall any specific injury or how this may have happened besides normal falls that a 3 year old can have. She was casted for weeks and back to her normal self. Nothing that has come her way has slowed her down.
Since then she has complained of random pain here and there, where we have brought her in for additional X-rays to be sure all was well, which it always was.
In February, I lost my sister and was in Ft. Lauderdale with her when my husband called saying Claire was again having some pain spells and inconsolable at times. He brought her in again at this time. Like always , everything looked fine in the area of the previous tibia fracture.
I truly believe everything happens for a reason. Claire had this leg length discrepancy and was already established with a wonderful doctor who we were always following up with for this reason. Thank God we had a current X-ray just from February, 2021. Since then she would have off and on just random pains that we would treat with Tylenol and Motrin here and there. Well all that changed the week before Memorial Day. For two to three nights, Claire was different. She wasn't sleeping much and if she did she was waking up screaming and crying about her leg hurting. Medicines weren't really helping or touching her pain. I also noticed a slightly larger bump than was previously witnessed in her leg was but wasn't sure if I was just being crazy. She just wasn't our Claire. My mommy gut was just telling me with going into a holiday weekend that we should bring her in.
On May 28, Dr. Culotta fit us in for another X-ray given Claire's history. There was a noticeable difference from the previous X-rays and suspected to potentially be osteomyelitis but would require additional tests to confirm. Dr. Culotta direct admitted us to OLOL Children's for blood work and an MRI for the 29th. The MRI was also abnormal and at this point thought it was best to go in for a bone biopsy. This was done the very next day, on Sunday the 30th. He said one of two things could happen: If the biopsy identifies active signs of infection, the next course would be to clean everything out, place drains, and treat with IV antibiotics. Secondly, if no signs of infection were identified, the biopsy would be taken and sent for further analysis. This unfortunately was the case for us. He couldn't give us good news or bad news but said cases like this are frustrating because we do need to be patient and wait for biopsy results in order to treat Claire properly.
The waiting game was HARD!
Results could take up to 1-2 weeks and Monday was a holiday. By Wednesday, Dr. Culotta called me personally to say some results were back but not the pathology. I had a sinking feeling and just knew. He said, it does unfortunately look like we're dealing more with a tumor versus osteomyelitis. It was showing up as a small round blue cell tumor, which could be one of many different types of cancers. He wanted us to see Dr. Accardo the very next day to learn more while awaiting pathology.
Again, another amazing doctor. Dr. Accardo sat us down and spoke with us for a very long time. He was honest and answered all questions we had. He showed us scans so we could see what normal bone versus what her left tibia looked like. He said unfortunately for Claire, it was either Ewing's sarcoma or metastatic neuroblastoma. My husband and I both lost it. Why? He said it was important to move quickly while waiting for pathology from Memphis to confirm diagnosis.
The next day we were sent for a pelvis and Chest CT along with a full body bone scan. While her full body bone scan was normal, her chest CT showed some concerning. nodules mostly in her right lung. The next step was to get a PET scan set up. This takes time so meanwhile we were scheduled to go on vacation. Our doctors all agreed this was best before getting back to start the long, hard journey we were about to go on.
The beach was a little different this year but made the best of it! We were able to get some professional family pictures done, which we are forever grateful for and will share.
PET scan was done on Monday, June 14th. The lungs were still suspicious but did not confirm with 100% certainty the presence of cancer so these results were also sent to Memphis for additional review. While awaiting those results, we are set to see Dr. Raney on Wednesday and will hopefully have the results by then. This is the same day we received the call to confirm it was in fact Ewing's sarcoma. We are set to be admitted after our appointment on Wednesday for Claire to be worked up. Thursday, June 17 she will have her mediport placed as well as a bone marrow biopsy to help with staging and chemotherapy plan.
From here, we will keep family, friends, and those reaching out and following our story up to date through this process.
Thank you so much for all the love and support from everyone. Our girl is strong and has the best personality and spirit to fight this, and we are ready!
Psalm 18:32 "It is God who arms me with strength and keeps my way secure."