Description
Our son David is 5 (will be 6 in June) and starting in November 2022, had been complaining of knee pain, especially at night and first thing in the morning. At first we thought growing pains, or fighting sleep or that (since he tosses and turns at night) he hit his knee on the rail or back of his bed. After a couple of weeks of same complaint, same knee, I took him to the pediatrician. We saw a different doc than normal, and she said it was a little swollen but wasn’t hurting him at that time so she wasn’t worried.
2 weeks later, back to doc because he was asking to see the doctor but wouldn’t say why. When asked “this much is wrong” with arms spread is all we got. We saw his normal doc this time. He didn’t mention his knee, and so she checked him over and ear infection and home we go. 2 weeks later we’re back again, this time I’m pushing for the knee to be checked again, regretting not mentioning it at the prior appointment. Doc orders full blood panel and xrays. Blood work all normal. Xrays ended up being 2 appointments because they didn’t get the correct images the first time.
Phone call from doc January 27th letting us know that there was something on the xray, she’s not really worried but wants us to see ortho quickly. Let’s me know if we don’t hear from ortho Monday to call her. Monday at 8am ortho calls us to schedule, we see ortho Tuesday afternoon.
We get into the ortho office, doc introduced himself and then says he wants us to go home, pack a bag and go to Texas Children’s ER. Says that there is a tumor on David’s femur, and that he “isn’t sure it isn’t so he needs a MRI quickly” doc tried very hard not to say cancer the whole time we were there. He had me take photos of the xrays on my phone. He said for him to get MRI as outpatient since it requires sedation for David’s age, it would be 2 to 3 weeks and the scans need to be done faster than that.
So home to pack a bag and off to Children’s we go. So extremely grateful for my inlaws who were watching Louise and who hosted Louise for her first sleepover during this. Texas Children’s was so kind and helpful, they redid 2 of the xrays to save time, then after discussion with ortho and radiology, determined that if the tumor was what they thought, CT would give them answers. CT would also allow David to eat (at this time it was 11pm) and he wouldn’t need sedation, and it would be faster. Wins all around. CT was completed by midnight, and just after 1am, the boys fell asleep and we had answers.
David has an osteoid osteoma on the lower portion of his right femur, just above the knee. It is 7 x 6 x 12 mm. This type of tumor is non-cancerous, and cannot become cancer. If the pain had been ignored, it would eventually burn itself out and be covered in bone, however that can take 2 to 3 years. None of us want him in pain that long. We had an ortho followup February 8th, and she has ordered a procedure to remove the tumor. The procedure is scheduled for February 22nd.
The biggest risk with the procedure is with sedation as he will be sedated, it is an outpatient procedure. There is a small (less than 10% chance) that the tumor can return after procedure in which case there is another procedure to try. Worst case if no procedures work is surgical removal, however it’s highly unlikely that will be needed. With the procedure, he can be his normal active self until procedure day. Post procedure, there will be 2 weeks no playground, no trampoline, no bike, nothing with heavy leg activity. The procedure recovery is less painful that what he is experiencing now.
Update April 25:
The week before the procedure, David needed pain medication every 3 hours around the clock because of how much pain he was in. David had his procedure February 22, and is now doing a lot better. He is healing slower than anticipated, and still has bad pain days when he does too much running. However, those are getting fewer and further between.
We do have insurance, but I was laid off from my 2 jobs in December, and am not back to work. I am a stay at home mom with a small business.
Update May 16:
David saw the orthopedic doctor 2 weeks ago today, and was given the all clear to return to full play. He has been pain free since, even with some heavy activity days! He will still need to return in 6 months for xrays to verify no tumor reoccurrence, and will likely need regular xrays for the next few years. However, we are hopeful that we are through the pain, and now just have to handle finances to have this behind us.
We were originally told the procedure would be about 4300, we were able to cover the ER bill with emergency savings and with some assistance from the church. My mother-in-law has contributed a significant amount, but the procedure ended up needing a nerve block due to pain, and that wasn’t covered (the hospital is contesting this with insurance). We currently owe just over 3200, and still have xray visits to go. Each of those is $60 plus travel costs.
Update January 2024:
We had David’s appointment today to check status 1 year after diagnosis. Not only is there no signs of regrowth, but the surgery site is healing better than expected. He is considered ‘fully clear’ and can return to life as if none of this occurred, with the caveat that if he experiences knee/leg pain in the future, first step is urgent x-ray to check for reoccurrence. Additionally, during follow-up, the orthopedic doc noticed that he has some hypermobility in his joints beyond what is normal for his age, so he is being referred to genetics for testing to determine if there is anything to be concerned about.
All this to say, we have had some very scary things happen recently, but it’s getting better. We are fortunate and grateful for our community who has had our back through everything, and supported us.