Well, our wish came true. Ronan got to leave the hospital on the afternoon of July 3, after 20 long days in-patient. Come to find out, a fairly complex discharge that multiple specialties and pharmacy has to sign off on feels as messy on the patient side as it does the nurse side. Renal, check. Oncology, check. Pack the room and load the car which had to be moved up from RMH to transport all the things we've accumulated, check. Endocrine, check. Pharmacy, check. De-access the port and physically leave the unit, check. Take Ronan outside for the first time in almost 3 weeks ♥️ (Side note: Why is this a policy btw, how can a lack of fresh air and amazing June sunshine be healing?) Tram it down to the waterfront with Ronan, who loves and adores the tram like no other ♥️ Reunite with a wild and crazy, best hug giver little homesick brother. ♥️ 

Between the hospital load of things, including a pharmacy of meds and supplies, and Jack having just returned from a trip, the room was insane. There were a million things to organize. Yet I felt like I could take a deep breath for the first time since we learned Ronan's diagnosis. In some ways it was a feeling of relief and peace and in others...I was back in a state of feeling like everything was surreal. This isn't happening. We just got out of a weird nightmare. My child is not this sick. It was almost like when you feel deja vu but in reverse. But the frailty and fatigue of my previously wild child and the pharmacy of meds we are giving all day quickly being you back to reality.

We got the room mostly organized after sending car load of stuff back to Albany with Bryce's parents. We spent a mostly quiet day sitting outside in the shade a lot while Jack raced around the little playground. We made Ronan's requested dinner of hot dogs, macaroni and cheese, and jello parfait. We snuggled up in what we call the River room and watched the boats go by. We watched fireworks from our window over Portland. Jack wore a million glow sticks. 

Friday, Ronan had to go to the clinic for a lab check. As suspected after borderline discharge numbers and Ronan's level of fatigue and lack of color the last couple of days, he needed some blood. It is expected right now that his numbers drop pretty low. The steroids he is on in this phase of treatment are suppressing his bone marrow, telling it to stop producing wacky cells, but really all cells. Still, he has parameters for how low things can get and when they reach that point, he needs red cells or platelets. He's had both several times already. Anyway, he needed blood which takes a few hours. He also needed magnesium which also takes a few hours so...we spent most of the day at the hospital. BUT then we got to leave. We had the requested spaghetti and a family movie night ♥️

Other labs of note were his renal labs which almost made me do a happy dance. His creatnine is almost back to where it was when we came in and his BUN is trending down sharply. For those of you new to this medical world, those are two big important markers for kidney function. We know he is still struggling a little because he's taking a lot to help his acid base stay in a normal range. His magnesium being low again is another one of those things related to kidney function, but still, we take the big wins where we can. 

one big struggle right now is the huge number of meds Ronan has to take on a daily basis right now in this phase. He is literally the best medicine taker of any kid I know but he struggles because of the shear number right now. 

Dexamethasone- a steroid he needs to suppress his bone marrow and help the chemo do its' job, 2x/day

Famotidine- an antacid to help protect the lining of his stomach from the damaging affects of the steroid, 2x/day

Amlodipine- a blood pressure medication he had to start when kidney function was at a low in the hospital, 1x/day

Sodium Bicarbonate- a pill we crush and mix with pudding, etc that helps his body balance its acid base, 3x/day

Magnesium- a pill we crush to help his body replace magnesium he's losing in less concentrated urine, 2x/day

Tums- to help replete low calcium and help with acid base as well, 2x/day

Fast acting insulin, 3ishx/day given as an subcutaneous shot with an insulin pen

Long acting insulin, 1x/day given as a subcutaneous shot with a tiny insulin syringe 

Bactrum- an antibiotic given to people with very low immune systems to prevent an opportunistic pneumonia that likes to get people with low immune systems ill, 2x/day on weekends only 

Vitamin D- to combat the bone weakening effects of steroids, 1x/day

Miralax- to combat the constipating chemotherapy he gets every Monday

Those are the dang daily, required meds! In addition to all of that are the as needed meds like those for nausea, excessive constipation, sleep problems due to steroids, etc. An actual Saint would struggle with all those and he's literally so good even though he hates it all. We know many of these will be discontinued when induction is complete, and we are hoping several others that came about because of induction will also be discontinued (ie insulin and BP meds, acid base meds, etc.)

So there's all that. There is trying to keep a busy and energetic 4 year old happy while keeping an exhausted and sick 6 year old rested when everyone wants to badly to be together. There is the constant worry about Ronan needing to go back at some point during induction, as it is so common and he is so vulnerable now. There's worry around a good plan for coming home and what comes next and what day 29 will show. There's so much sadness in seeing Ronan be such a shadow of his normal self right now, but also joy when we get a smile out of him. There's worry around his weight loss and how tiny he is right now. So. Much. Worry. This is when we remind each other to breathe, and to take one day at a time. Celebrate the wins and take one freaking day at a time.

I met another mama tonight whose 4 year old has a different kind of cancer, but a similar treatment trajectory. They are further along and her son has more energy and it makes me hopeful. Hearing her story also makes me angry. It is similar to ours in that she knew for weeks that something was wrong, but is different in that nobody was taking her seriously. I can't imagine the frustration in that. I hurt for how she must have felt worrying and worrying and nobody listening.

I am thankful for my background when it comes to navigating all this because it makes me a stronger advocate for Ronan. It isn't something I always share immediately because I don't want it to set a weird tone with staff but my questions generally lead to someone asking me and then it comes out. It is odd though how easy it is to get a bit shuffled in the system without knowing how things work. Our team would often start rounds outside and then come in for a quick exam and update, and I had to be pretty forward about then please making sure to include us in all of it. I was ready to lose my biscuits on Monday when Ronan had been NPO (not allowed to eat or drink) most of the night so he could get his dialysis catheter out and nobody seemed to know a time or a plan because we were an add on and he was losing it because he was so hungry (thank you steroids.) I had to push back quite a bit on endocrine to get a less rigid plan in place because he needs to eat, period. Oncology backed us up on this but not in a written order kinda way so it took some pushing. Everything from clustering care to using a lab draw for a blood sugar to just avoid even one poke, asking for a med a different way so we can make it easier for him. For the most part, we had great nurses and doctors and CNA's but these little moments of advocacy are definitely easier with a medical background. It also makes it easier to know what the heck is going on and what the meds are and for etc. It is a LOT of information and it would be 100x more overwhelming if I wasn't a nurse. 

It has been so strange to be walking this path and being back on a unit I did my senior practicum on as a student. 10 years ago this summer, I worked as a student nurse on the floor we just left. My preceptor still works there. In some ways it feels like somehow that set a Ronan up for this horrible diagnosis though I know that is ridiculous. In some ways, it feels like it set me up to best support him too. I was meant to have that exact background and be a nurse at all because I was meant to have this amazing boy who would have to have this fight. I'm not big on religion but I am spiritual. I may not know exactly what I believe but I believe there are things we don't know or understand. I am angry Ronan has to do this. I am furious at the unfairness of it all. I think it sucks that his cells went wonky and now he's stuck with the consequences. But I also believe Ronan is exactly the boy I was meant to grow and love and mother and maybe that means I was meant to be who I am too so I'd be here in this moment to help walk us through this. That feels better than thinking my background somehow set him up for this by some weird fate. 

Im so thankful for Bryce in all this. I know this experience will test us. Couples who have kids with big illnesses often fail to make it through because of how stressful it is. I don't doubt we will be tested, and already have been. It is my hope we can continue to lean on each other though. I am so thankful to have him, and his patience, and his caring, giving heart. He has taken on all of this new information and teaching and every new hurdle tossed at us, and he's been amazing. If I have to walk through this with someone, I'm so, so glad it is him. I'm so glad Ronan has him and Jack has him. It's hard to say anything positive about the cancer that is hurting my son so much right now, but if there is any positive thing about cancer, it is the gratitude you can't stop feeling for the little things, and the freedom of letting go of everything else that doesn't matter ♥️

Next steps... we go to clinic on Monday morning for new labs. If needed we could have any infusions required and then we see our oncologist in the afternoon and get the next dose of chemo. I believe we are seen agin in clinic on Wednesday or Thursday and then the next time will be Monday the 15th for the big check in, last day of induction chemo, LP and new bone marrow aspiration. This is all assuming we have no need to go back for any other reason and please let that be so. Positive energy only. We also continue to check in with endocrine and adjust accordingly. Since this is a medication induced problem and Ronan still makes his own insulin/may start to do this more efficiently again, there are constant changes. Today we had our first low sugar outside the hospital and so all dosages were lowered. We trudge forward. 

One day at a time ♥️