Change of Plans

Jordan and I showed up at clinic Monday morning prepared for a week in the hospital for round five of chemotherapy. We started with another chest x-ray because Dr. Fritz wanted to make sure the pneumonia had cleared. It looked like the pneumonia was almost gone but there was a spot in another area of Jordan's lung. The question was if this other spot was another pneumonia (maybe due to a fungus or some other organism the antibiotics are not covering) or if it was a partially collapsed lung (possibly due to reactive airway disease/asthma).

The pulmonologist (now her fifth different specialist) examined Jordan while we were in clinic and said her presentation is consistent with reactive airway disease (RAD). RAD sounds a lot like asthma and it seems like a lot of kids get tagged with this diagnosis. The treatment is basically the same as asthma...inhaled steroids, nebulized albuterol, and chest PT. The way the nurse explained the chest PT I am supposed to pound really hard on Jordan's chest to loosen the mucus so the lungs can re-expand...and it would best if I could do this with her tilted somewhat upside down. Um yea, Jordan is really going to love me holding her upside down and beating on her.

Despite the RAD diagnosis, our oncologists also wanted to do a CT to confirm this is not another pneumonia. Craig and I were concerned this lung spot could be spread of the neuroblastoma and when they first mentioned a CT I got very nervous. Dr. Mahmoud and Dr. Miller assured me (several times!) that they were concerned about infection/asthma and not the cancer and I really do believe them... It is just difficult not to attribute every little symptom to the cancer.

Jordan did the CT on Thursday...without anesthesia this time as it can sometimes create spots on the scan. The scan was surprisingly short which was fortunate since Jordan freaked out the entire time. No fungal infection, no pneumonia, no partially collapsed lung. It looks like the temporary line used at MSKCC for the stem cell harvest created some irritation and a blood clot. The plan is to do another CT in a few weeks and hopefully the clot will have dissolved. If not, MSKCC will have to examine and biopsy. The oncologists do not seem too concerned about this clot but honestly, it is making us a bit nervous. I just do not like having additional things to worry about.

So no chemotherapy this week while our oncologists investigated the lung issues. We were a bit disappointed because as difficult as chemotherapy can be, it is great to feel like we are actively killing this horrible disease. But our family did get to celebrate birthday week at home together and it was fantastic. Thanks to all our family and friends for the birthday wishes and treats!!

Check out the leg warmers...how fun are little girl clothes?!?

We tried some music time but on this day Jordan was more interested in the CD cover...
and the power button....

and eating the bells...

Happy Birthday Mommy!

Happy Birthday Daddy! (Jordan isn't asleep...just wasn't feeling photogenic)