Just Keep Swimming
Donation protected
This has been such a journey...a rough bumpy one that started out like this:
McKenna, my 10 year old daughter came to me one day in July. I called the doctor and asked them to send her for an xray and I made her a follow up appointment. I took her in for the xray on the 26th of July and went in for the follow up that following Tuesday. It was that day that I was informed she had a lytic lesion on her tibia around her knee. She had a referral sent out to orthopedic. Our appointment wasn't until late September. She was already using crutches and got a knee brace to help stabilize her knee.
On August 26, the day before school started I took her to church as I often did. After church I had to run to a store to attempt to find her some shorts that she could wear to school. That is when I saw her left ankle was also swollen. I called the doctor on Tuesday after giving it two days of resting, ice and elevation. Nothing seemed to help with the swelling and she also got an itchy sensation that caused pain. Weirdest sensation ever.
I was told by the doctor on Tuesday that if she was getting worse that I could take her to driscoll, our local children's hospital. So Tuesday after my husband got home from work and the kids got fed dinner I went ahead and took her to driscoll. I explained why we were there and got puzzled looks from the doctors. She had been on crutches for 5 weeks and hadn't had any new trauma, falls, or any kind of injury yet we had a swollen ankle. We got admitted to the hospital that night and the next morning we heard from the orthopedic doctor who decided to do a bone scan on her. Shortly after the 2 hour bone scan they told me that she would be having surgery later in the afternoon to remove fluid from both her knee and ankle, as well as having a piece of bone removed.
Two days after surgery she was feeling great. The infection control doctor came in and told us that her pathology was negative and because of that, he thought she had a classic case of chronic recurrent multi focal osteomyelitis. However, while her pathology was negative at that time, it wasn't negative overall. It took 10 days before it finally grew something. That bacteria was one commonly found in the gastrointestinal tract. Once we were discharged from the hospital we had to follow up with Dr. T. the orthopedic doctor. He has several interns that follow him learning things that they need for class and there were three or four in the room while he was talking to us. It was crazy busy and he talks so fast. Lesson learned because he said he highly suspected she had something that I didn't catch. We were told to come back at a later date and he wanted us to go to Houston to see a rheumatologist. We have that appointment on December 10th.
I recently took McKenna back to the er. She was in so much pain she was crying. To the point to making her cough. So I took her in and was again explaining our situation to the doctors. Again I got that puzzled look that I had seen many times before. It really gets old when they give you that look. But this time, I saw that puzzled look along with determination. Those lovely er doctors spent more time in the room getting history then leaving with what I told them and researching it. Then repeating the process all over again. I found out so much that night. That condition that Dr. T. thought she had....histiocytosis x. She warned me that google would scare me so she braced me if you will. She let me know that this is a condition that mimics cancer and that she would have to be treated by oncology.
Oncology...that one word no parent wants to hear. That word is devastating....a low blow...worse than most curse words. So I put google to good use. Now I know that everything you read on the internet isn't always true. Half is fact, the other fiction. But I'm pretty good at remembering what I read then bringing it up to the doctor. So that is what I did. I went and requested copies of her medical records today. I also called the pediatrician because upon google search, McKenna has more symptoms of this than CRMO. I can't shake the feeling that we are getting on the right track, although our wheels are still spinning without traction. So I simply asked him why. Why are we being sent to a rheumatologist when they can't treat this. And since Dr. T. has thought this is something she has had since day one, why not go for the gusto and send us to oncology.
So that is where we are going right now. Oncology. It scares me to even look at that word as I type it. It takes my breath away...brings tears to my eyes. Based on what I have read and been told this condition is treated a few ways...all depending on the severity of the disease. It can be as easy as steroids to as complicated as chemo and radiation. It is a very rare condition, 1 in 200,000 and not much research has been done on this.
I don't know right now if I can get her into a local oncologist, or if I will have to travel with her. Anything that is donated to her fund is put into transportation back and forth to her appointments. No amount is to small. Anything and everything helps right now. McKenna is going to keep swimming in this battle. Please have the heart to help her out.
McKenna, my 10 year old daughter came to me one day in July. I called the doctor and asked them to send her for an xray and I made her a follow up appointment. I took her in for the xray on the 26th of July and went in for the follow up that following Tuesday. It was that day that I was informed she had a lytic lesion on her tibia around her knee. She had a referral sent out to orthopedic. Our appointment wasn't until late September. She was already using crutches and got a knee brace to help stabilize her knee.
On August 26, the day before school started I took her to church as I often did. After church I had to run to a store to attempt to find her some shorts that she could wear to school. That is when I saw her left ankle was also swollen. I called the doctor on Tuesday after giving it two days of resting, ice and elevation. Nothing seemed to help with the swelling and she also got an itchy sensation that caused pain. Weirdest sensation ever.
I was told by the doctor on Tuesday that if she was getting worse that I could take her to driscoll, our local children's hospital. So Tuesday after my husband got home from work and the kids got fed dinner I went ahead and took her to driscoll. I explained why we were there and got puzzled looks from the doctors. She had been on crutches for 5 weeks and hadn't had any new trauma, falls, or any kind of injury yet we had a swollen ankle. We got admitted to the hospital that night and the next morning we heard from the orthopedic doctor who decided to do a bone scan on her. Shortly after the 2 hour bone scan they told me that she would be having surgery later in the afternoon to remove fluid from both her knee and ankle, as well as having a piece of bone removed.
Two days after surgery she was feeling great. The infection control doctor came in and told us that her pathology was negative and because of that, he thought she had a classic case of chronic recurrent multi focal osteomyelitis. However, while her pathology was negative at that time, it wasn't negative overall. It took 10 days before it finally grew something. That bacteria was one commonly found in the gastrointestinal tract. Once we were discharged from the hospital we had to follow up with Dr. T. the orthopedic doctor. He has several interns that follow him learning things that they need for class and there were three or four in the room while he was talking to us. It was crazy busy and he talks so fast. Lesson learned because he said he highly suspected she had something that I didn't catch. We were told to come back at a later date and he wanted us to go to Houston to see a rheumatologist. We have that appointment on December 10th.
I recently took McKenna back to the er. She was in so much pain she was crying. To the point to making her cough. So I took her in and was again explaining our situation to the doctors. Again I got that puzzled look that I had seen many times before. It really gets old when they give you that look. But this time, I saw that puzzled look along with determination. Those lovely er doctors spent more time in the room getting history then leaving with what I told them and researching it. Then repeating the process all over again. I found out so much that night. That condition that Dr. T. thought she had....histiocytosis x. She warned me that google would scare me so she braced me if you will. She let me know that this is a condition that mimics cancer and that she would have to be treated by oncology.
Oncology...that one word no parent wants to hear. That word is devastating....a low blow...worse than most curse words. So I put google to good use. Now I know that everything you read on the internet isn't always true. Half is fact, the other fiction. But I'm pretty good at remembering what I read then bringing it up to the doctor. So that is what I did. I went and requested copies of her medical records today. I also called the pediatrician because upon google search, McKenna has more symptoms of this than CRMO. I can't shake the feeling that we are getting on the right track, although our wheels are still spinning without traction. So I simply asked him why. Why are we being sent to a rheumatologist when they can't treat this. And since Dr. T. has thought this is something she has had since day one, why not go for the gusto and send us to oncology.
So that is where we are going right now. Oncology. It scares me to even look at that word as I type it. It takes my breath away...brings tears to my eyes. Based on what I have read and been told this condition is treated a few ways...all depending on the severity of the disease. It can be as easy as steroids to as complicated as chemo and radiation. It is a very rare condition, 1 in 200,000 and not much research has been done on this.
I don't know right now if I can get her into a local oncologist, or if I will have to travel with her. Anything that is donated to her fund is put into transportation back and forth to her appointments. No amount is to small. Anything and everything helps right now. McKenna is going to keep swimming in this battle. Please have the heart to help her out.
Organizer
Carla Rios
Organizer
Corpus Christi, TX
