Goodbye Port

It’s September 2026. Part of me has a hard time believing that. This is the September that felt so unbelievably far away when we sat at the beginning of all this, looking at the “road map” of treatment. 2 years from the date Ronan started the first round of Blina would be his end of treatment. Our 6 year old would be a 9 year old by then. It feels both that it took forever to get here and that we blinked and here we are. Cancer in some ways feels like a worm hole in time, both time that is lost, or stolen, and time that moved at the pace of a slug. I wonder how it feels to the boys? They’ve both changed so much, grown so much. I’ve watched them have to process the cancer of it all at each new developmental stage. Ronan was 6 and Jack was only 4 years old when all of this started and I fear that some of these days may be some of their earliest memories. That breaks my heart in some ways. What will they remember when they look back?

Ronan had surgery to remove his port, on August 27th, the day after his 9th birthday. For the first time in 2 years and 3 months, his chest is free of the little medical device that helped to save his life. It’s a very big moment, a physical acknowledgement of being done with treatment that required constant access to his large blood vessels. Through that little device, he received antibiotics, multiple units of blood and platelets, fluids, sedation meds that allowed for all of his lumbar punctures, and most of his chemotherapy medications. Blina ran for a continuous 28 days, twice. It also allowed him to bathe and swim normally when he wasn’t accessed. Ronan was lucky to get his port right away when he was diagnosed. It was hard for him to get used to being accessed. Because it lays under the skin, a needle has to poke through the skin to grant access. He had to build a routine around this procedure. Apply magic Emla cream for 30ish minutes to get the skin numb (we have a spot we always stop on the way up to Portland.) Wipe off the cream and feel that it’s numb underneath before the nurse cleans. It is a sterile procedure so once it’s clean, he can’t touch. Get a 1, 2, 3 countdown and squeeze mom’s hand. Re-accesses were much harder because the numbing cream was less effective. If he was accessed for 7 days, the needle had to be changed (like on Blina or during long hospital stays.) Rona became quite the little self advocate, and he learned to be so, so good for these but I don’t think they were ever easy. He was lucky to never have had any problems with it, and no infections. I will forever feel thankful for that little round device.

The surgery team allowed Ronan to keep it. I could tell that he had a bit of a moment the first time he was able to take it out of the little specimen cup. You can see the little, tiny holes from all the needle pokes. He even found the spot that was hit when a home health nurse missed the center during Blina. It’s a story in and of itself. I’m glad they let him keep it. I wonder how it feels for him to hold what used to live in his chest. He sure is processing a lot these days.

For every day since Ronan had his port placed, we’ve had to be within an hour or so of a hospital that could take care of him if he had a fever. Every single fever above 100.4 has meant an immediate call to his team and a trip to the emergency department. Labs, a blood culture, antibiotics, all within a 2-hour window. It has meant staying very close to school at all times when Ronan was there so I could quickly scoop him and go if needed. It has limited travel plans to places that met that time frame. It has meant carrying around magic emla cream and press and seal and correct needles for access in our go bag in the car. It has meant good friends from work being my secret back-up in the middle of the night on the off chance I need to leave my shift to take Ronan up (without having to drag Jack too.) Until he is officially done with all his chemo and has had adequate time for count recovery, we still have a modified fever protocol with a higher limit on what we can wait out at home.

This is freeing. How I would love to just offer Ronan snuggles and popsicles and maybe some Tylenol to ride out a cold at home. How exciting that we can widen our adventure circle again to be outside that time frame from a children’s hospital. AND it’s nerve wracking. Fevers from viruses and strep throat were some of Ronan’s first ambiguous symptoms before diagnosis. It’s scary to feel like there will be less eyes on him when he’s sick. What if it’s more than a cold? These are the fears that live beneath the relief. My cancer mom friends tell me that I will know if it’s more, if it’s worth more eyes. I hope that’s true. I feel like once you’ve had the far out “rare” diagnosis that you spent weeks talking yourself out of, you can never really go back to normal. You spend a good part of the time analyzing symptoms. Is this chemo related? Is this worth a call to his doctor? Am I making too much of this? The last thing I want is to drag him in for something that is nothing and put him through even more medical crap for what may be no reason. This is the internal soundtrack of a cancer parent’s surveillance. I do not imagine this gets better when there are less eyes and less checking, but I do hope it gets better with time.

We’re alllllll feeling the hugeness of the end of treatment. There is so much that is hard to explain about why it feels as heavy as it does celebratory. We are so incredibly thankful to be here. We are painfully aware that so many kids are never able to be here...or that they are but not forever. That not forever piece is a big part of the AND it feels pretty scary to stop treatment. The fear of relapse feels like an elephant on my chest some days. I know Ronan feels it. He can’t put words to everything he’s trying to process right now but anxiety seems to have hit him like a truck in this last month. I’m very thankful we have a counselor on board to help him navigate this, and help us to support him. I’m hoping school starting will provide a good distraction for that busy brain of his, and that time and space from all this as we move forward will help too.

In the meantime, we keep on keeping on. We have a long awaited little day trip to visit some good friends in Hood River planned for tomorrow. Monday is our rest and ready day for the boys and Bryce heading back to school on Tuesday. (Bryce technically started back last week but hasn’t had students yet.) And we’re in the final stretch for oral chemo days...less than 2 weeks. A few days after the bell, we’re heading to the Redwoods. I felt magic in those trees the first time I visited as a child and we are hoping to find a little of that for the boys too. They are convinced we may spot Big Foot and/or Elliot the dragon as well. I think they definitely stand their best chance in the trees of the giants than of any other forest we’ve been to! We’re staying at a little Air Stream in the woods and on the way home, a covered wagon on a farm in southern Oregon. A little glamping adventure to get our minds off everything else and celebrate this milestone.

Thanks for continuing to follow our story and root for our guy! Please don’t let your support end with us. 

September is Childhood Cancer Awareness Month as well. For those of us who have lived it, every day is childhood cancer awareness. But this month is meant to bring it to people’s attention who haven’t. It’s meant to promote funding for research, for better, less toxic and more specific treatments. It exists to stand up for the kids who are fighting, to remember and honor the ones who are gone way too soon, and to improve the future options for those who have yet to be diagnosed. Every 2-3 minutes, worldwide, a child is diagnosed with cancer. That’s almost 500 children a day. Half of them will die from their cancer, or treatment related complications. These are sobering and sad statistics. But to us they are no longer just numbers. These are real people, real families. They are little boys who just turned 3 and whose moms are making choices about taking them home, or fighting like hell with odds like 26% being thrown at them. Fight for them. Scream it from the rooftops. Demand more from our government. Fight for legislation that removes barriers, allows for parental leave, guarantees insurance coverage for children, and supports families. Fill the blood banks! Local organizations always have wish lists and needs. The Ronald McDonald House in Portland, Ukandu, and The Light Collective are all ones that have helped our family a lot if you’re unsure where to start. Make a Wish Oregon is another great option. The boys are also still collecting for their airplane and stuffy drive. https://www.amazon.com/registries/gl/guest-view/R3WMQE756FO3 Please share! They are getting excited to deliver what is already two big garbage bags of each to Ronan’s hospital when he rings the bell. 

*Pics: First look at his port on the outside, a close-up of the special Huber needle used to access, a tough guy Ronan post first shower after first long Blina infusion, and finding a smile on a sedation day while accessed.

Oh and also find me on substack these days. Jenna | Substack