6/11/16. Update 2

We still have several tests and second opinions pending with the various divisions, but they are really leaning toward thinking Cole has the IMT (inflammatory myofibroblastic tumor). Yes, the extremely rare tumor(s) even seen in adults let alone children.

One key review they are waiting on is the second opinion from the specialist at Harvard, then deciding if they also need to send to St. Jude.  Because his body is so incredibly inflamed they cannot differentiate based on the scans which is inflammatory tissue vs. tumor.  Additionally, they cannot tell if anything is attached to organs/other tissue because he is so inflamed. It is way to risky right now for surgery again if they need even more samples to send out.

Because they are leaning toward the IMT and the Infectious Disease team does not feel this was infection-based, HEMOC has consulted with ALL specialty teams on his case (5 total) and feel it is safe to begin steroid treatment to try to bring down some of the inflammation so they can further explore things on scans and possibly surgery again if needed. This was treatment they were hesitant to begin before now because they were concerned it may "mask" things therefore making it difficult to truly diagnose him and may allow for things to worsen.

So we started steroid treatment this afternoon along with other medications to try to protect his body since the steroids will lower his immune system. They are similar protective medications used with chemotherapy so they feel good about it. He was also started on IV nutrition through his PICC line as his body is in desperate need.  He is receiving various medications throughout the day through the PICC along with scheduled pain medication through it as well.  Trying to keep him as comfortable as possible and build his system up while receiving the steroid treatments. We also can't forget the anemia and low hemoglobin which causes him to feel bad. Hoping all of this helps him feel better!  And we still need "movement" in our tummy so he'll want to eat! Nobody wants to eat when their tummy hurts.  Praying for good "restroom" visits soon!

As we've shared, Cole has a very long road ahead of him and we still don't have an exact diagnosis or treatment plan, but we feel very confident about the HEMOC doctor leading the charge as she is very aggressive and has already spent hours/days constantly thinking about and working on Cole's case. I am so impressed with her and we feel we are at least moving in the right direction, and hopefully on the path of diagnosing and treating our little mystery machine.

As always, we are extremely grateful for the continued thoughts and prayers on this unknown journey we're on.  

Bless you all