Is it seriously July 22nd already? The summer is flying by. We've been making the most of it, and trying to make up for the summer we missed last year. It has actually been a whirlwind of a month. We got home Saturday and were like oh my goodness. We have a huge mountain of laundry, the house is wrecked, the yard is full of tall dandelions. We need to make a hundred house keeping phone calls related to bank issues (I had two different cards with fraudulent activity this month,) figuring out why it is taking a decade to hear back about my intermittent leave for this year, registering Jack for kindergarten due to an issue with a technicality a few months ago, etc. We also need to grocery shop, go to the pharmacy for refills on medications, take cans to the bottle drop, etc. etc. etc. Haha. However, we both feel pretty excited to have to catch up on all of this because of happy trips rather than hospital ones!

In cancer news, we are over two months into Maintenance. Other than our rough first week, Ronan seems to be tolerating it pretty well. He does keep getting this pesky rash on his face, which we think is some kind of side effect from the oral methotrexate. However, it isn't painful or itchy if he leaves it alone and it gradually gets better. Confusingly, it hasn't appeared every week after the methotrexate but I think this was the 3rd time? So, we aren't sure what to make of that yet. But still, overall he is tolerating things and his labs looked good at our monthly check-up. In fact, one of the kidney markers was actually in the green for the first time in many, many months. My heart did cartwheels with that information. Granted...we're still on the bicarb 3x a day and a blood pressure medication but I will 100% take the good news as it comes, especially when it comes to kidneys. 

As for our summer trips so far, I got to take a quick overnight to Seattle to see my oldest niece play in her soccer tournament. Her team made it to the championships and her team got second place! It was fun to watch her play, something I don't get to do enough of. After the tournament, my sister's whole little fam got to come to our house for a couple of days. Then a few days later, we all headed up to Deer Park, which is right near Spokane, WA. We stayed in this unbelievable house that had a pool and a zipline and so much space for the whole group of us that was there. Family time, endless swimming with the kids, and 4th of July. It was a lot of fun, and it meant a lot to us to get to go. The kids had SO much fun and did not want to come home. 

We were home a handful of days where I fit in a bit of work and a friend's wedding. Then we headed over to the coast for Camp Ukandu Family Camp. Now, I heard about this camp from a friend whose son is also being treated for leukemia. They have a chemo pal for their son, which is someone who acts as a support for the patient, a help for the parents in the form of a little respite, or kind of whatever helper role they set up with the family. Their chemo pal is one of the lead people for the camp, so she told them and they told us, and we found ourselves going.

It is set up like a summer camp for whole families dealing with childhood cancer. We were assigned a cabin and cabin coordinators and we had a packing list and all the things! We were pretty nervous and had no idea what to expect, but we thought it would be good for the boys, so we went. And in just about every way you can imagine, it exceeded any expectations we could have had. Our hearts are full in a way they haven't been since Ronan was diagnosed, and I think that applies to all four of us. 

Here’s a few things I've learned about the organization because it's pretty incredible. As far as I can tell, this organization has only a handful of paid employees. To put on this camp, those few people and over 200 volunteers put their time and energy and heart into giving us this wonderful experience. It makes me tear up to write about it. These people poured themselves into this experience. Most of them have a very personal stake in the mission to support families. Some of them used to be cancer patients themselves, former campers, or former parents/caregivers of cancer kiddos. It is evident in every facet of the camp how invested everyone is and how much people care. The staff is there to be helpful in just about any way, and they were always very present, allowing parents to relax a little bit and spend time connecting as well as enjoying their kiddos. 

There were all the offerings of normal summer camp with archery and art and boating and swimming, etc. We had beach day (twice) with kites for everyone, where they brought water and snacks and toys and we literally just got to play. We had a movie under the stars where they provided everyone with blow up couches and put a movie on the big screen outside. They had a dance. The theme this year was dinosaurs and there were literally thousands of dinosaurs hidden around camp all week so it was like a week long Easter egg hunt for the kids. There was an extravaganza with a huge blowup obstacle course, blow up water slide, games, ice cream sundays, other treats, etc. They also arranged for a caregiver dinner where we got spoiled while they did dinner with all the kids, and held a beauty shop before the dance that consisted of temporary tattoos and costumes and hair chalk and fun. We also had campfire fun and silliness every night (Ronan’s favorite thing.) The boys really bonded with a few of the staff/volunteers and honestly, so did we. They also tend to come back year after year. 

Each day had activities for the kids in their different age groups, and also voluntary groups for parents to attend while the kids were having the best time. The groups were led by a licensed psychologist with a background in trauma and pediatrics. She was pretty great. The groups were meant to be as interactive as you wanted them to be, or you could just sit and listen and eat the good snacks and coffee they provided. But my feeling was you couldn't help but participate once people started sharing. Each day had a topic of discussion but was also allowed to kind of go where it went. Some of the things we talked about were things like the neurobiology of trauma and how that affects us and our kids in the daily, the effect of trauma on partnerships, sibling relationships throughout this whole thing, feedback from teens having gone through this and what they want their parents to know, etc. They also offered a moms only and a dads only group once. 

I think we both felt so seen, and understood, and just less alone than we have felt in over a year. I hope that isn't offensive to anyone because there are SO many people that have supported us in a 100 different ways this year, and I don't want anyone to feel as though we haven't felt that and appreciated it from the bottom of our hearts. I am SO glad that we can't share the full burden of this with people who haven't been through it, even those who also love us and our boys. I think the magic of this group was that we didn't have to explain anything. Without knowing us, without knowing our specific story, parents in this group understood all the things that this last year has been. Everyone there is at a different stage of the journey, and there were parents of kiddos with all kinds of different cancers. But we get each other in a way others cannot and there was a peace in that that we hadn't found before camp. 
Watching all the kids at camp was something too. Again, all the kids were in various places in treatment, post treatment, etc. Some of them have visible differences, and some of them don't. Ronan had a really noticeable rash on his face this week and nobody even asked about it. Kids at camp are just kids. There is this visible inclusivity and acceptance of one another that is heartwarming to see. The other magic was that families were there together to fully participate in all it had to offer. All the cabins had to put on a skit as a group once, and even the teenagers really fully jump in. There was something special about that. 

There were some special and emotional traditions, especially on the last night. One tradition they call luminaries was for each camper to decorate a little white paper bag with whatever they’d like. Then they place each of them along the path to our last campfire with candles inside. Many of the bags were a memorial of sorts to people who had lost someone. Many of them were a version of you aren’t in this alone. My favorite said, “Until there is a cure, there’s camp” and I think we left really feeling that. We will 100% be trying to go back each year and next year, Ronan will also be old enough to participate in the kid’s camp in June, which he already told me he’s doing. Haha. He really connected with a little girl his same age, a survivor of AML with a big personality. After hearing Ronan talk about feeling different and not wanting to all school year, it was so heart filling to see him connect like that.