Long Time, No See

As some new issues have arisen with Mac, I thought I'd resurrect the ol' blog to keep all of you who care about our sweet guy updated.  We appreciate you all so much and are grateful for the care and support you've shown our whole family.

I'm going to start at the beginning.  That seems like the logical place to start.  I mainly need this all written down for myself, so that I have a record of it somewhere other than my brain!

On March 20th, Mac was diagnosed with pneumonia.  Not unusual for him, but it wasn't following the path of his "normal" pneumonia patterns, so I had a weird feeling about it.  Sure enough, the PA that we had seen called and I could tell from his tone of voice that the chest x-ray looked weird.  I assumed that he'd say Mac had aspirated and that's what had caused the pneumonia.  Instead, he said that the x-ray confirmed a pneumonia, but there was also something strange looking on the x-ray and they couldn't quite tell what it was.  We were told to go back for x-rays in a month to see if it was just some sort of weird infectious process that came with the pneumonia.

Fast forward to April 27.  We went and had the x-rays repeated, and what do you know.  The "strangeness" was still there, and more clear than it had been on previous x-rays.  We were quickly referred to Spokane for a CT of his chest to get a clearer idea of what we were seeing.  We tried to do the CT that Wednesday without sedation.  What a huge flop!  No one bothered to tell me ahead of time that Mac would have to be able to hold his breath at certain points and lay completely still (very different than the brain CT's that we're used to) for the imaging to work.  So, we made plans to come back first thing Friday morning for a sedated CT.

We got the images with no problem and Mac handled the sedation like a champ.  I, being the crazy person that I am, knew I couldn't go home without answers, so I waited at the hospital until the radiologist read the CT and uploaded the report.  It confirmed that there was a 4cm mass butting into Mac's spine, that it could be several different types of things ranging from totally benign to terrifyingly malignant.  It also found that Mac had another moderately severe pneumonia (again, he was nearly asymptomatic).  As I was standing in front the elevators, reading the report over and over again and trying to make sense of it, our ped's office called.  He knew that I was waiting for the report myself, so he just went over it with me and told me he already had a call into the on call peds oncologist at SHMC, and if I could just hang out, he'd call me with further instructions.  After several phone calls and lots of pacing, the on call onc decided we didn't need to be admitted, and we were set up with a clinic appointment on the following Tuesday.

We really like the oncologist.  He's fresh from St. Jude and very knowledgeable and easy to talk to.  He told me his plan, and I liked it as it matched with what all that Dr. Google had told me we should be doing when I researched throughout the weekend.  So, he did labs and a urinalysis, and that Friday scheduled a MIBG scan, bone marrow aspiration and biopsy, an MRI and more labs. 

We did all the prep work on Thursday, then arrived early Friday morning and met with the surgeon who would perform the tumor resection if need be.  He reviewed the images with me and explained how he would remove the tumor and his plan for Mac's recovery.

We got the news that evening that Mac's MIBG scan did NOT light up, which really didn't tell us a whole lot of anything, but the good news was that his bone marrow and blood labs didn't show any involvement.  At this point, the type of tumor that the oncologist thought it was was 90% ruled out, so he mentioned that we may even be able to just wait and watch the tumor with serial scans to see if anything changed.  My gut did not like this answer--I just really felt deep down that it needed to come out, it is touching too many vital organs (spine, right lung, esophagus and heart) for me to feel comfortable waiting and seeing.  I didn't argue though, as he was ordering one more scan to rule out a malignant process in the tumor one way or the other.

The PET scan happened Friday, May 15.  That evening we got a call confirming what my gut had told me all along.  That the tumor did light up on the scan, confirming that there was some sort of malignant process.  This was the confirmation that the oncologist needed to move forward with surgery, there is no longer any question at all that this is what needs to happen.  The good news is that it appears to be slow growing and not aggressive (in that it has not invaded any organs). 

So, surgery to remove the tumor will happen Wednesday May 20.  It will be an invasive surgery.  Although this is surgery #10, it's on a whole different body part for a whole different reason, so it feels very new and uncertain to us.  The surgeon will be doing an open thoracotomy--think rib spreaders and cutting through major muscle groups.  He will need a chest tube in for probably 24'ish hours after surgery, and is expected to stay in the hospital for 4-5 days, and recovery is expected to last 6-8 weeks. 

We are, honestly, flabbergasted by all this.  Who would've thunk Mac would have a whole different type of major medical issue, completely unrelated to hydrocephalus?  Not us!  But, it is what is and we are ready to get this bugger out of there, and find out exactly what it is so we can formulate a plan from here.  Our hope and expectation is that surgery will BE the treatment, and he won't require anything further.  All signs point to that at this point, so we are counting on it :)