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Team Sofia

Supporting Sofia in her fight against leukemia

Latest journal entry

One month of Chemo...

Well, it has been one month since we finished chemo! It was a pretty great month for the most part. Sadly the post chemo high didn't last too long.
One thing we always knew was that the drugs Sofia took for two and a half years cause some pretty bad side effects during and also after treatment. 70% of all Pediatric Cancer survivors end up getting another serious health issue from the chemo. I wasn't quite prepared to be experiencing this so early!
About two weeks ago Sofia complained about pain in her left foot. She limped for about an 5 hours than she was running and jumping again. The pain would come back and then go away. On Monday night I noticed that she was now walking with her foot pointing in, so I took her to the Dr. first thing on Tuesday. After an x-ray we found out that Sofia has Avascular Necrosis (AVN) of her Navicular bone. Basically there was not enough blood flow to her done so it died and collapsed. The oncologists were not surprised as this is a pretty common side effect of the steroids that she was on for 2+ years. They also told us that if she has AVN in her foot she also probably has it elsewhere. My head was spinning as I thought about what this meant.
Today we went into Stanford Pediatric Orthopedics to find out more. The Dr. was running behind so some other Dr. came in and told us that there was pretty much no good news. The bone was dead, it would never come back, Sofia would end up with arthritis and eventually an arch collapse. She she avoid running, jumping and dancing for the rest of her life. And yes, she probably has it in other parts of her body but they aren't going to check. I was not ok with this so he went to get the main Dr. so I could discuss it all with him.
Mike and I were crushed. Sofia dances all day every day, she jumps on our trampoline daily and loves to run! Sofia asked what it all meant and we told her she could swim, take art classes, play golf. She started sobbing and said it all made her really sad. She said the only sport she wants to play is baseball. Mike jumped up and said "you are going to be a Designated Hitter and play first base, and I will make sure you are the best DH ever." We told her we would get rid of the trampoline and get a slide. We will make it work!
After a couple of minutes the Dr. we were there to see came in. He explained that yes the bone is dead but eventually a small amount of the bone will grow back. He also explained that the reason they do not x-ray other areas is because nothing can be done if they find it. There is no cure but many young AVN Leukemia kids only feel symptoms for about 5 years. He said she can dance around the house, she just shouldn't take tap or plan on being a dancer. She can run around the park, she just shouldn't play soccer. He said if you are going to get AVN, you want it in your navicular. When it hurts, let her rest and when it doesn't hurt, let her have fun. He agreed to do an x-ray of her hips/knees in six months but because she can run perfectly and with no pain there is no need to do it now. He actually had her running up and down the halls and said "she looks great!" Oh, the waves of emotions!
So, is it great news, no. But, as long as she stays cancer free,we can handle anything!!!
Now,we will mentally prepare for her every four week blood work in a week and a half. Hold our breathe and know everything will be fine.
As always, we appreciate the love and the prayers!!

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