Day 134- THE BIG TRIP

We are back from an incredible trip! Refreshed, a little more relaxed, and MOST importantly, armed with answers that led to DECISIONS. 

Where do I start? From start to finish the whole thing was incredible to watch and took an absolute army of people. I'm still reeling from how many! Within only a day of posting about our needs to make the trip happen, they had all been met. This was an incredible gift as it freed my time up to hound all of the doctors we hoped to meet with during our visits. It took a tremendous amount of fenagling, but we were able to line up all the necessary appointments in the nick of time. And only a week after we made the decision to go, it was 5:15am and we were heading towards the airport, three very excited pajama-clad kids in tow.

The boys were absolutely thrilled to ride on a plane, and kept squealing 'WE'RE GOING THROUGH THE CLOUDS!!!!!!' while they happily chomped on their gum. You're welcome for the early morning entertainment, plane full of nicely-dressed adults. 

Once we were all seated and all our bags, stroller, carseat, and everything had made it on board, I couldn't help but get emotional. It was finally happening. We were getting the chance to have every expert to put eyes on him and weigh in on his unique case. We were going to get to ask more questions, and get even more answers. 

The meetings at CHOP and Sloan Kettering went very well. We were excited to be able to meet with both the oncologists and surgeons, and went in with lists of questions about the surgery. Although we only had a handful of visits of scheduled during the trip we ended up being at the hospital for a meeting, scan, or something, almost every day. I was grateful we had thought to add a couple extra days in there as a cushion... we needed them!

The meetings provided us with some different opinions to consider, which is always both good and stressful. But, despite the differences, all of the doctors agreed on a few main points... his tumor is one of the biggest they've ever seen. He shouldn't receive any more chemo. And symptomatically, he's doing shockingly well. 

1 scan, 20 meetings, and 1,000 questions later we feel that we have heard all the opinions, and are aware of the options. We are armed with the answers we needed, and have finally made a decision. We have decided to take a watch and wait approach on his surgery date... With the anticipation that each month he gets stronger, bigger, healthier... and would handle a surgery of this magnitude a little better. Something that will stick with me for the rest of time... when we asked one of the surgeons, who had decades of experience with this type of tumor, how risky this surgery was, he replied that on a scale of 1-10, Red's surgery would be a danger level of 7. So, it's important, CRUCIAL, that we let him be as tough as he can be going into it. His tumor is continuing to grow, but it's growing slowly and it's very unlikely it could invade any surrounding organs. This means any critical situations would give us plenty of warning through his vital signs. The doctors don't think it's possible for us to be blindsighted by an emergent situation with the tumor's growth. So, as long as he's doing well, growing, having consistently good vitals, and staying on track developmentally, then all signs point to us being able to continue to observe. And truly, Redden is doing AMAZING. He has gained a lot of weight, especially recently, and his consistently good vitals indicate we can start to wean him off of some of his medicine and allow his body to start to strengthen further. Going into each meeting and hearing 'Wow, would you look at this kid? You'd never know! He looks great!'... that felt good. 

And developmentally? Well, he said 'Mama' yesterday, and 'Mommy' today. That's all I have to say about that!

There is no definite timeframe for the surgery, just a long list of symptoms that could indicate the surgery should happen. For now, under the guidance of doctors, we are going to be observing VERY CLOSELY for the indefinite future. We are focused on monitoring his vitals more closely so that we can be even more acutely aware of his baseline on less medication, so that we can track development and be in tune with any tumor risks. This adds a few things to our day (like blood pressure monitoring... the search for an infant sized blood pressure cuff is on!), but it also removes parts of our routine. Already since the trip he's started to wean off of 2 of his medications. By next week those two medications will be gone. He has grown out of the need for them and we can start to let his body become more 'normal'. Stronger.

With the excitement of our new plan and being able to push surgery off a little longer, comes the fear. The knowledge that waiting and watching, is more watching. More staring. More counting breaths, evaluating cries, stressing over little symptoms. It's an ongoing weight that we know is continuing indefinitely. We are excited, yes, but we're worried about our ability to do it.

Above and beyond all else, we are filled with HOPE. And during many moments of the trip, we forgot the hard reason that brought us there. Forgetting can be a good thing, but being back home has reminded us of the reality of our childhood cancer life. Today we celebrated from afar with a dear boy that finished his last day of chemo. Yesterday, we felt broken when we learned that two children we've followed since our own day 1 have come to the end of their battle. The rawness that has become our constant hasn't gone away, and I hope it never does. We appreciate everything so differently now.

We are thankful. So incredibly, overwhelmingly, thankful. Even the biggest words I can think of don't describe how we felt being on a trip that was pulled together by the incredible love and generosity of so many. Not only did we get so many expert eyes on Red and so many discussions happened as a result of it, but we got time together as a family. We got a break from an extremely stressful home renovation project. We got to have someone else make the bed and wash the towels. We got extra sleep. 

Well, some of us did... 

THANK YOU. For praying for us, for loving us, and for taking care of us. Thank you for helping us get flights, for getting up at the crack of dawn to surprise us at the airport and help make sure we made it on the plane. Thank you for letting us borrow bags, a stroller, and other travel goodies so that our trip was easier. Thank you for renting cars, borrowing vans, and finding carseats to get us where we need to go. Thank you for giving us gift certificates, sending us food, and filling our bag with snacks so that we weren't hungry or without ways to cure the toddler hangries quickly. Thank you for donating so that we could afford meals easily while traveling. Thank you for helping arrange hotel stays that were so relaxing and luxurious that the first day all 5 of us didn't even leave the room! Thank you for coming to see us during our visits. Thank you for hugging us and reminding us that you are there. Thank you for not telling us the truth about how much we've aged these last few months. Thank you for sharing our story with others that were perfect strangers when we started the trip, but during it became friends as their kind hearts led them to help us. Thank you for helping to keep our kids entertained and safe so that we could focus on many many MANY doctors visits. Thank you for the cards, emails, messages and texts checking to make sure we were doing ok. Thank you for the room full of boxes of gifts and supplies that was waiting for us when we got home. Thank you for crying with us, for being invested in Redden's story, and for caring well for us so that we may care well for him.

We are living the story I used to read about... where strangers/friends/family all come together and form a village of support to carry a family through a tragedy. THANK YOU.