I have to start out by thanking everyone who has reached out to us directly to check in and make sure we're ok, your kindness has given us something to hold on to thats steady and sure.  It's been almost 7 weeks since I last posted and while a lot has happened, the good news is we have Griffin finally back to baseline.  He has lots of weight to gain back but I believe we are on a good path to get him there.  Last time i wrote we were halfway through our second 5 day of Regimen M.  I'm happy to report that even though day 5 was our longest everrrr, we made it up to my parent's house with enough time to celebrate my birthday with cake and candles before the day was done.  

The weekend before Christmas was filled with magic and big smiles.  We spent the Saturday exchanging gifts with my mom, enjoying the quiet and peace of my childhood home and the best food.  Griffin was tired but that Christmas adrenaline was the best medicine.  We knew Griffin's worst day of chemo recovery would fall on the 25th and our fingers were crossed he'd wake that morning feeling well and much to our surprise he was feeling fantastic.  Greg's family came over for brunch and we spent the whole day together relishing in the moment.  It's a way we've always tried to live that's been reinforced these last few months, but it's often much easier said then done.  It's really all we've got and life is much more meaningful when lived that way.

We had a wonderful 3 day break thanks to the clinic being closed for the Christmas holiday but we were back to clinic on the 26th.  Gavin was able to make the trip with us for the first time since October.  Griffin had a sense a pride about him, excited to show Gavin the ropes with a whole new level of comfortability.  Gavin hasn't been with us since griffin's surgery and port placement so he was brave and stayed in the room to watch all that Griffin has to go through each clinic visit.  Even though Griffin's bloodwork was trending down (as expected) he was still at a safe level so we planned for repeat bloodwork on Friday the 29th.  Unfortunately that evening after we got home is when things started to shift.  Looking back I know we just assumed his throwing up was the chemo but with the benefit of hindsight I realize it had a lot to do with radiation side affects too.  On the evening of Thursday the 28th we noticed Griffin was more tired than usual, dark circles under his eyes and was feeling feverish to the touch.  After taking his temperature a few times with similar 102.2 results we realized we had to follow fever protocol and take him to the emergency room.  While we had been told this situation was pretty much inevitable, of course the last thing we wanted to do was visit the ER.  We packed everyone up and the 4 of us drove down to CHOP Main.  Multiple blood draws, antibiotics, red blood cell and platelet transfusions and12 hours later we headed home.  All of us had horrible flashbacks from his original diagnosis and hospital stay but both Gavin and Griffin were such troopers through the whole ordeal.  Not exactly how we saw our Christmas break going but we were grateful to have the opportunity to go home this time and rest.

The following few weeks were really difficult physically and emotionally for all of us but Griffin especially.  Throwing up almost every day, loose stool, headaches, battling dehydration, low blood counts requiring a 3rd transfusion of hemoglobin and platelets, we just couldn't get his system to settle despite our efforts.  We were working hard to get his body right before he started his third 5 day of Regimen M on January 25.  After meeting with a nutritionist, we changed the type of formula we were using, a gentler version and one that's easier for the body to digest and finally we saw our boy come back to life.  Ultimately our Oncology team determined that a combination of the side affects from radiation treatment, chemotherapy and a stomach bug, created the perfect storm.  He lost about 8 pounds and was almost back to the lowest he hit in September of last year, the weight is coming back slowly but surely.

Last week we completed the 3rd 5 day treatment and had our 6 week post radiation CT Scan of his chest and today we had the MRI of his abdomen and pelvis.  The anticipation of scans, the waiting for results has easily proven to be in the top 3 of the most debilitating parts of this Cancer journey.  So much is riding on the images, they are the only tangible evidence we have that show what we're doing is working and determines the course of treatment moving forward.  We have tried to continue living normally but there's always a dark cloud looming in the corner blocking the sun and never quite out of view.  We are exhausted and I recognize in these last few weeks that all of the stress and fear and worry was taking over my body without my even noticing.  Some days I've had to tell myself out loud "just get through the next 5 minutes, you can make it 5 minutes".  I realize now, for the last 5 months of our son's cancer journey, we've made it through just 5 minutes at a time.

With all that said, I have some incredible news to share.  Griffin's CT scan and MRI results have met, and in come cases, exceeded our expectations.  The CT of his chest showed NO NEW GROWTH!  There is inflammation in his lungs due to Radiation Therapy and though the original tumors in his chest still appear in images they were measured as smaller in size.  There is a chance that scans in the near future and even for the rest of his life will show those spots, but that alone does not indicate active cancer.  We may have reason to biopsy those spots down the road to know for sure what tissue remains is cancer free, but we might also get to the point where we can safely assume without biopsy that they are benign masses.  The MRI of his pelvis and abdomen also show NO NEW GROWTH!  There are no residual cancer cells at the origin site where his kidney was removed or in the surrounding area where cells had been present in his scans last Fall.  To say we are happy is a huge understatement.  This is a MAJOR milestone for Griffin.  While we are extremely measured in our excitement, there is so much to be grateful for and we can see a glimpse of the end.  The treatment is working, the cancer is responding as expected and prayed for, and Griffin continues to blow us away with his resilience and courage.  We have a few months of treatment remaining and we are acutely aware that these results do not mean we are completely out of the woods...But for one night, we are floating on that looming cloud instead of being stalked by it.

As we are over this hurdle we are reminded of so many that came before.  We have laid our son in the arms of countless doctors and nurses, spent countless nights awake just to watch his chest rise and fall, we have slept upright in hospitals chairs, we have listened to the beeping and whirring of machines and been simultaneously terrified and thankful, we have smiled through tears and found strength when there wasn't any left.  Our love in tandem with all of yours is the force that allows our baby boy to do the impossible.

Guys, he's doing it, Griffin's Got This!

💙🧡💛