First, we want to say thank you so much to everyone who has called, texted, wrote messages, made donations, watched our dog, watched Jack, offered to watch Jack, did laundry, cooked or bought meals, sent coffee gift cards, dropped off or mailed care packages, been here to help, literally so many things. We read and cry through your beautiful notes and comments and are overwhelmed by all the love over the last week. We don't know the full impact all of this will have on our finances yet but having a little pot in savings for whatever may arise gives me a little peace of mind in that area. All of those things make a difference, so thank you. ♥️

It's has been an insane last few days.
Many of you know that Ronan was born with what we have always called special kidneys. He was born with bilateral grade V urinary reflux. Due to placement/angle of his ureters, his urine was able to back flow to the kidneys instead of being a one way street down as is typical. As a result of this, his kidneys sustained damage during their development under this high pressure system. At birth until around age 1, he also had Renal Tubular Acidosis. We've seen urology and nephrology since he was born, every few months in the beginning and gradually once a year. Each year, he gets renal labs, and has a renal ultrasound. Less frequently, he had a test called a VCUG to evaluate the reflux. 

We have always been told to treat him as though he had Chronic Kidney Disease. We push fluids. We avoid ibuprofen. We give him less wiggle room with dehydration when he's sick. We also get a urine checked with every fever, just to make sure there's no UTI. With reflux, any infection would go immediately to the kidneys and could cause scarring and more damage. We have thought about and worried about his kidneys since we saw they were enlarged at a random 30 week ultrasound.

Fortunately, Ronan has never had a UTI or kidney infection. This allowed us to wait until he was five to decide to surgically fix the reflux by undergoing bilateral ureteral implantation. We waited in hopes that his reflux would correct itself (which can happen, though it is less likely with higher grades than lower.) We waited to allow his brain to be more developed before being exposed to anesthesia. We waited so he could understand what was happening, participate in his pain management, etc. Ronan had this big surgery last spring and though it was not an easy recovery, it went perfectly. The urinary reflux has been fixed.

We can see on ultrasound that Ronans kidneys are damaged. The structures are less defined. They are smaller in size, though they do, and have grown with him. His kidney labs prior to all of this showed that his kidneys are not perfect, but they are functioning well. Enter leukemia. 

The beginning phase of cancer treatment can be a challenge for anybody's kidneys. Tumor Lysis Syndrome, a series of electrolyte disorders caused by the lysing (dying, opening, etc) of cancer cells can cause problems for anyone undergoing chemotherapy. This period was always riskier for Ronan with his kidney background. That is why they guaranteed us at least a week here before we started.

There are certain lab values they've been very closely monitoring since admission, every 4-8 hours. On Thursday morning, all of these went a bit haywire. Calcium was low, potassium was high, and phosphorous was high. When these electrolytes get out of whack, it can cause serious problems.

Very early Thursday morning, Ronan got a second IV placed, got put on a cardiac monitor, got some IV replacement of various electrolytes, etc. They also gave him things orally to try to remedy those numbers. This was a lot of busyness, a lot of messing with him, and it was pretty scary for Ronan. He also had to drink seriously icky stuff that would attempt to help fix the lab values. Through it all, he was insanely brave and such a trooper, even though he just desperately wanted to sleep. None of the interventions were quite enough though. There began to be talk of dialysis and the pediatric ICU.

Ronan ended up going to Interventional Radiology to be put out once again for placement of a Hemodialysis Catheter. This is another type of (large) central line specifically for dialysis. When that was done, he was sent to the Pediatric ICU where he received dialysis right away. Our dialysis nurse is my favorite. Ronan's nephrologist has also been incredible. She has been a frequent presence which has obviously served to make sure Ronan is getting what he needs. However, she is also a source of comfort as she is one of the warmest and most amazing people, and she's known Ronan his whole life, since he was 1 day old in the NICU. We are so thankful she is on his team. Between her and our amazing dialysis nurse, I feel like we have a kidney dynamic duo. (Side note: we met another nephrology doc and his fellow today and they were also fabulous.) 

Ronan tolerated dialysis beautifully and it did its job. It really is very cool how it works, literally acting as a giant machine kidney that filters all of Ronan's blood. The scary lab numbers all improved. They rebounded hours later as expected but not back to the same height they'd been at previously. Every day they've improved more and rebounded a little less so it is working. However, Ronan is still in the early stages of treatment and he may need this for a little while, daily. While it sucks that he needs it, we are so thankful for it because it's helping him, because it is giving his kidneys a breather. The team believes Ronan actually had some leukemia in his kidneys (just like it's in his liver and spleen) so that could also be contributing to problems. 

Oncology held Ronan's fourth kind of chemotherapy  that was due the Thursday this all happened temporarily. It was given yesterday, Monday, instead. What we have been told is that we will not hold back on treating Ronan's cancer because of his kidneys. We can adjust timelines and dosages a little. We can loop in nephrology as much as needed. We can give Ronan dialysis to support him but ultimately, cancer and the treatment may further damage Ronan's kidneys. He can't go on to use his kidneys if we don't treat his cancer. That being said, we fully expect to get him through this so he also is going to need his kidneys when he does! It is unbelievably hard for me to swallow that he is going to get through all of this and may someday also need a kidney transplant. The unfairness of it all sometimes makes me want to break things. 

As you can imagine, Thursday when this all went down was hellacious. We had to send Jack home with Bryce's parents so we could just focus on being here with Ronan. We had to try all the interventions that they did before deciding on dialysis and then we had to wait for them to coordinate everything to get it done, move to PICU, etc. It was a lot. However, when all was said and done, he got a great night of sleep (somehow) in the PICU. We had an amazing nurse the next day and then were moved back up to the hemonc floor the next night❤️ This was obviously great news as Ronan was stabilized. It also means it's safer for Ronan to walk the halls (no infectious patients floating around. It means access to the playroom, less bugging, access to the bath tub, etc. 

On Friday night, we began dealing with a new issues, hyperglycemia (high blood sugar.) This is not an uncommon side effect of one of the medications Ronan has to take as part of treament. It does involve a lot more pokes, and that truly sucks. Have I mentioned how brave he is?

Saturday, he got dialysis again but had a relatively quiet day. Sunday, he got dialysis and a dressing change in his dialysis catheter. He handled it like a champ and his nurse was great at helping him through it. Then, Jack came to visit. He was feeling okay and had a lot of time out of bed, playing on the couch with Jack. He also had his first dressing change and the-access of his port which he was incredibly brave for. He had a wonderful and sensitive nurse that helped him through it. 

Yesterday, he squeezed in some time in the play room, play time with Jack, lots of walks, and a repeat LP (lumbar puncture) with some intrathecal chemo injected there. He also had his second dose of the chemo he got last Monday, and the first dose of the chemo that was originally scheduled for last Thursday but was pushed to yesterday. So, procedure with 3 different chemo meds. But he still had a great day overall. His hardest part of the day was being without food all day as his procedure was at 2 pm. 

We've been ending each day with a bath, which Ronan really enjoys. Maybe it feels like a tiny piece of normal? He has to have a daily CHG bath with his lines anyway. So he sits the tub with lower water level, and we use the CHG wipes on top so we don't have to cover everything. Then he bathes the bottom half like normal. He isn't a huge fan of the shower cap hair washes so we've done just one of those so far, plus one real one before he had his dialysis line. We seem to be the only ones on the floor who like the tub! I'm thankful for it. Most every evening he's been able do this, get on fresh pjs on, brush teeth, etc. 

As of yesterday evening, Nephrology was hopeful we could back off on needing dialysis now that his kidneys are beginning to wake up and improve. It will be a day by day decision for a few days and if all is well, we will remove his line in a couple of days. They are closing watching urine output, blood pressure, and fluid balance, as well as labs. We get to skip today! We also got approved to add a little more phosphorus back into Ronan's diet and this was the best news. It's been so hard for him to eat while we're here and having most of his favorite foods restricted hasn't helped. Progress! ♥️

So there's the medical update. So many people are asking how we are holding up. It feels moment to moment also. Sometimes I'm okay, staying busy. Sometimes I'm a total basket case who is crying over a pretty sunset watching Jack play because Ronan is missing it, because we aren't together all of us, all the time. It is hard to have Jack be here for too long because it is so much hospital time but it is so hard having him be away too. Until this, I think the most I have ever spent away from him is two, maybe three nights? It's hard. Watching Ronan be so tough and brave but then be tearful at the idea of losing his hair. Hearing Ronan ask to go home, ask why he has this sickness, suggesting gifts we can bring to the nurses when he gets to leave for taking such good care of him; Meeting another family going through this hell and seeing their little girl with the bald head play with Jack. Those moments break me a little.

I would give anything to rewind and be at home... annoyed at the boys for fighting over magnatiles, cleaning my messy kitchen wishing for a laundry fairy to come fold and put away clothes. Keep sending healing and love and prayers to our guy. And squeeze your babies a little tighter, soak up those normal moments ♥️