Yeesh, I think I last talked about things being good, being somewhat quiet and boring? I take it back. The weeks since my last update have been obnoxiously not boring. In the last few weeks, we’ve had 4 ER visits and a surprise in-patient stay at the hospital. Ronan tested positive for the flu in the wee hours of the morning on Bryce’s birthday. Remember that low bar for celebrating from last year? It wasn’t quite anaphylaxis but having to cancel our night away the next night and having sickness make its way through our whole house wasn’t exactly what wehad hoped for.  

I can’t remember if I’ve laid out our fever protocol before but basically, if Ronan gets a fever of 100.4 or higher, we have to go in, usually to the ER. A friend of mine wrote a beautiful excerpt about all the reasons this sucks. A fever often goes along with viral symtoms of generally not feeling well, which makes you want to comfort your child. Offer them tylenol, popsicles, extra snuggles. Lean into caregiving. Instead, as cancer parents, we are required to drag them out in the middle of the night, to go be poked, given antibiotics they probably don’t need, and then be sent home again. In our case, that also usually means a drive to Portland and back.  

So, fever, round 1. Ronan wakes up in the night not feeling well and we confirm a fever. Quickly throw some things together. Wake Jack to explain Ronan and I are going up because he really hates waking up to us being gone in the morning. (This way he isn’t surprised and gets extra dad snuggles.) Get Emla cream on Ronan’s port to numb it on the drive. Call the after hours on-call pediatric oncologist to tell them we’re coming. Drive to Portland. Have a successful, though more difficult than normal port access due to how hard the nurse wanted to feel around and anchor the port for access. Get a blood culture and labs drawn. Get a nasal swab, which was positive for flu A and a common cold virus. Get the dose of IV antibiotics we likely don’t need but are given on the off chance the fever is due to a central line infection. Get a fluid bolus. Give a urine sample. Wait on lab results. Find out his counts are okay and that we can go home. Talk the ER into letting us keep Ronan accessed since those viruses likely mean more fevers and the antibiotics only cover us for 24 horus before we’d have to go back and repeat this whole thing over again. (I have been shown how to deaccess Ronan at home if needed so this is his preference when we may end up needing repeat visits.) Drive home.  

Fever, round 2. Over 24 hours have passed and Ronan wakes up with a fever in the morning. He is already accessed so we decide to stay more local. We feel most comfortable at the Children’s Hospital. There is less variation in skill with pediatric patients, and generally, even with the drive, it can be faster. But, with the barrier of access removed, and the hour making it less likely to be insanely busy, we are hopeful our more local hospital will suffice. They repeat almost everything from the day before and then we are allowed to go home. Tamiflu was prescribed with our first visit so Ronan has added that to our regimen of meds. In the meantime, the rest of us get sick too. I haven’t been quite that sick in several years. Luckily, the kids weather it better than we do, and we think perhaps we’re in the clear. We deaccess Ronan because keeping him accessed has its own risks. (In fact, it’s amazing what you can get used to. In frontline, there were so many times Ronan had to be accessed for multiple days while home. Not to mention Blina, when he was accessed for 28 days straight. But it’s been a little while since all of that and it was unnerving how nervous I felt about him being home and accessed and how often I was keeping an eye on things.) 

Fever, round 3. It had been 5 days since Ronan was last in the ER. We thought we were in the clear on these viruses. Ronan woke up in the middle of the night with full onset chills and tremors. Fever is high this time and he is feeling pretty bad with it. I’m more nervous it’s not a virus this time because it’s been some days without fever. Repeat fever protocol but add on a chest xray in the ER due to Ronan’s increased risk of pneumonia after viruses. It’s clear. They think this is still the flu despite the gap in timing and the completion of Tamiflu. We round out the week with a trip to Urgent Care for Jack once we get home, who developed an ear infection after his illness. It’s the first one he has had since he had tubes placed a couple of years ago. He is done with his round of Tamiflu but now starts on an antibiotic for his ear.  

Over a week goes by and we are all still recovering with maybe a lingering cough, etc. But everyone is feeling okay and we made it to school, etc. Jack’s little birthday party has snuck up on us. My sister’s family is supposed to be coming from Idaho and the boys are SO excited for cousin time. The day they are supposed to leave, my nephew woke up not feeling great. They waited an extra day to feel out if he was sick, if he’d fever, etc. He seemed okay and never spiked a fever, etc. They came a day late but in time for the party. We were able to celebrate our little fire cracker turning 6 with his cousins and his friends. His real birthday is technically Feb 29th but we had picked this earlier date for the friends celebration. It was a success. Thank goodness. There is so much put on cancer siblings so I’m so thankful it was able to happen. 

On the literal drive home from the party, Ronan asks if he feels warm. I think he is probably just hot from playing and nervous after all the recent fevers, because he often goes through a period of hypervigilance afterward. No such luck. When we get home, we check his temperature several times over the course of about 15 minutes and get everything from 100.5 to 101.3 degrees. I’m pretty tired from staying up late with my sister the night before and having a rough night of sleep in general. Kelsea offers to stay with all the rest of the kids while Bryce and I both take Ronan to Portland.  

For the first time ever in the children’s hospital since Ronan’s diagnosis, we aren’t taken back immediately. There are no rooms. We stay as far away from people in the waiting room as we can and they clean a room for us as fast as they can, but we worry about catching something else from the ER itself. We go through all the things all over again. This time though, bad surprise for us, Ronan is just under the threshold for allowing us to go home. We are admitted to the floor, in isolation due to him still testing positive for the flu, despite it having been over 2 weeks. We get him settled and Bryce stays with him while I go home for the night.  

It’s the first time that Ronan has been in-patient that I drive all the way home. Every other time, I’ve stayed with him or we have been at RMH. It feels awful, and yet Jack is at home waiting for me, and my sister too. Ronan is [retty well feeling and I know Bryce does an amazing job. Still, it is hard for me to drive away. It feels all kinds of wrong to be away from my child when he is in the hospital. I have a hard time sleeping despite being tired until Jack makes his way to my bed. He does this often right now and we let him. It seems like he needs the extra comfort, and on this particular night, I did too.  

Another fun surprise in the morning...the weather is turning. Kelsea’s family is going to have to leave a day earlier than planned to beat a storm on the eastern side of the state. Talk about a weird visit! SO much driving for such a short time, some of which was cut short for Ronan due to the hospital. They all stop up to see him to say goodbye before they hit the road. Thankfully, they made it home safely, though they did hit a nasty patch of weather right after it got dark.  

Jack and I also went up to the hospital when everyone else did. We stick around and the boys spend the day watching movies in the room and playing with various things we packed. Jack has a hive like rash starting. Our little red head has sensitive skin. It is not uncommon that he gets these little rashes, especially in the heat, or in times of great stress. The summer of diagnosis, it seemed like he constantly had a patch of itchy skin with a sprinkling of hives. We saw an allergist who really had no wonderful advice for us, and by the time we saw him, this was happening less. We figured it might be related to the stress of Ronan being back in-patient. Jack and Bryce headed home for the night in the early evening. Ronan’s counts had gone down more that day despite holding his chemo starting the night  before, so we really had no idea how long we could expect to stay. We planned to switch off staying with each boy. 

Ronan was feeling pretty okay during his stay. He was bored out of his mind since isolation means we can’t walk the halls or go to the playroom. They brought him a race track toy and he had mini magnatiles and play doh and planes and drawing supplies, but he was still bored. I just tried to keep him entertained. I couldn’t help but notice that we were back in the same room we’d been in for the majority of our first stay. This was the room we’d come up to after our night in the PICU. There are these tiles in the bathroom and each room has a different one. This room had a turtle, Ronan’s favorite animal, and an animal that symbolizes healing. I remember us talking about that during that long stay.  

And here we were, back in the turtle room, in such a different place in treatment, but stuck in-patient nonetheless. I remembered viscerally getting up to this room after transfer from PICU and being very worried about Ronan’s blood sugars, which climbed into the 500s that night. I remembered dialysis being hooked  up multiple times. I remembered feeling so lost and scared and alllllll the things. It was a bit of a trip. Don’t get me wrong, I am so thankful that it’d been over a year since our previous in-patient admission, the one we had just prior to Christmas when Ronan started his second round of Blina. I know how lucky we are that Ronan’s leukemia is the kind where we get to be out-patient most of the time. But there’s room to be thankful, and room to acknowledge that it still sucked to be there. This has been the big theme as of late and I’ll get into it more later.  

The next morning at home, Jack woke up covered in rash. This no longer felt like stress hives. Bryce took him to the pediatrician to be sure, but it looked instead like our good friend, Erythema Multiforme. Jack had this as a baby, once really bad and once moderately bad. It is basically, his immune system going a little hay wire after a virus or an antibiotic. In this case, he finished the antibiotic for his ear on a Friday and the rash started on a  Monday so that was the likely trigger. It’s not an allergy...because he finished the entire course first. It’s his body’s crazy reaction to having it in his system I guess. But poor guy, it is such an itchy and miserable illness. 

Anyway, Bryce was dealing with Jack’s situation at home. We were climbing the walls of the hospital room. After a couple of days, (though it felt longer,) we finally had enough count improvement, with no additional fevers, to be able to go home. However, Ronan’s counts were still low and we needed to be mindful. We kept him home from school. Jack was also home because he was so miserable. It was a real hoot at our house, BUT we were glad to all be home under one roof.  

We have now made it through the weekend and into the next week, with no additional fevers or trips to any medical facilities. Jack is still having his rash. It moves around on his body and it has improved from the first few days, but now the joint pain that can go along with it has hit him hard. It is rotten luck. All we can do is antihistamines, pepcid (because you also have histamines in the gut,) and various creams to help with the itching. He can also have meds for the aching muscles and joint pain. It can last 2-4 weeks or longer, though we do see it improve somewhat.  

Ronan has been on a chemo hold since our last ER visit. We are due to go up to clinic this Thursday for a check up, plus an LP, IV chemo, and the start of Cycle 4 of Maintenance. If his counts have recovered enough from last week, we will proceed with all of that. It will mean 5 days of steroids, plus glucose monitoring, seizure watch and worry. Still, we hope it can go forward because we don’t want to delay an LP if we don’t have to. I despise LP’s with all of my soul but they are so important because they keep any cancer cells from sneaking into his spinal fluid and causing a relapse. So as much as I hate watching him be sedated, and be pumped full of chemo, the fear that seizes my heart when we have to push these things is worse. Thursday labs will determine the plan. He will also start oral chemo back up that day if he is good to go.  

It is truly a roller coaster. I attended a parent chat last night with other cancer parents. We are all a part of this amazing organization called The Light Collective. I won’t disclose anyone’s information but the theme of the night seemed to be the duality we all live with, especially as we progress in treatment, or even finish treatment. Two things can be true and two things can hold space at the same time. All of this really, really sucks, AND I’m grateful it isn’t worse. I’m so thankful we’re moving forward in treatment. I’m thankful we are out of the hospital. I’m thankful we’re able to go to school. It also sucks that I wait for the phone to ring almost every day with Ronan being nauseous or worried he has a fever. I feel guilty for sending him back to class (sometimes after a dose of nausea medicine or whatever) and I feel guilty bringing him home, because he is missing out, because I don’t want him to feel the discouragement that comes with feeling behind. I’m so thankful to get closer to end of treatment, and it’s also true that the idea of stopping treatment, of stopping the chemo that keeps the cancer away, terrifies me.  

What I have come to realize is that the Before...it will never come back. We will never be the same people we were Before. We will never know what that childhood would have looked like for our boys. We will never not feel a deep stab of fear with seemingly innocuous symtptoms of childhood. Every fever, every leg pain, every head ache, every bruise...We are changed. Learning to live in this space is a whole new thing.  

Last year, when everything was fight or flight, and every week held a bunch of new medical crazy, we were just following directions, doing what needed to be done. This year, we are trying to be “normal,” trying to convince our nervous systems that we no longer have to be in fight or flight every minute of the day. Unless the school calls. Unless we get a fever. Unless...but seriously. We are processing a lot, all of us. Weeks like the last few just serve as a reminder that we aren’t really normal yet. I don’t think we ever really will be the “normal” we were in the Before. It’s okay to recognize that, and feel thankful. Trust me, I’m so aware that there are people who have it worse than us, people who lose their children to fights like this every day.  

I’ve been listening to this podcast called The Deep C. It’s done by a cancer mom and she interviews all kinds of other cancer parents, survivors, professionals that work with these families, siblings, bereaved parents, etc. It’s been a really interesting listen and like the parent groups, it makes me feel seen. Life is still life-ing and we are still in this fight. We are exhausted and some days we are in a better place than others. I’m sorry it took me a while to write this. I know people were waiting to hear the update. I just needed to get into the head space to write it. Sometimes it feels hard to share this part. I want to give everyone good news and be positive and be thankful. It feels ungrateful to share the hard parts. But the truth lies in the duality, and though I probably would have referred to myself as a generally sunny, optimistic person Before, that is something cancer stole from me. I don’t think I’m exactly a pessimist either, but I think I live in the in-between now more often than not. It's the overcast, will it rain or will the sun shine today place.  

Oh, AND Ronan lost another tooth. It’s his top front tooth, and I’m dying at the cuteness when he smiles. I was telling Bryce last night that seeing these boys grow up puts an ache in my chest that I think we all feel as parents. We yearn a little bit for the baby years, even as we are so proud of them growing. After cancer, I will say that it’s not like that ache is gone, but it’s different. I feel the privilege of watching them grow differently. My baby turns 6 in a few short days and I remember the tiny squishy baby he was and sweet and sassy toddler Ronan was when we brought Jackie home. There’s the ache. But to look at these little humans and all they’ve overcome and are still overcoming. To see the teeth fall out and see the birthdays pass, there is a deep gratitude.  

I will try to update sooner next time, with an update on Thursday’s LP. Send luck and prayers and whatever wishes you’ve got and thank you for all of those of you still doing that.