We are officially halfway through the Delayed Intensification phase, or DI1. It has been kind of a bear of a couple of weeks! Between the Rylaze shots and the frequent appointments required for them, the snow we were threatened with and then finally received, and the diabetes that flared again with the steroids...we are tired around here. We've also just reached that point of winter that is always a struggle with so much grey and cold and yep, it's still February. We are all ready for some sunshine around here, though we are doing our best to keep spirits up with our Valentine's Tree, soon to be switched to St. Paddy's. 

Steroid induced hyperglycemia is kind of a crazy thing to manage. It came on after about the 6th day on the steroids. Then he ended that week and came off them...but started Rylaze which also messes with the pancreas and can raise blood sugar. As we got further out from the steroids, he was requiring less and less, but then we started them up again for the second "pulse" and his insulin needs jumped big time. It's a lot of guess work in figuring out the right ratios to correct and how much long acting insulin will help without bottoming him out! BUT Ronan took his last dose of steroids on Monday morning, yay!  Obviously there is no more Rylaze this week, so we are just waiting for his system to clear and for everything to kick back into normal mode.

Since Monday, we have been able to heavily wean off of the insulin and our hope is that it will continue to head that direction. It generally takes about 3 days for everything to really clear your system. It makes management a little tricky to have things change so quickly. We anticipated less need overnight on Monday since he didn't take a dose Monday night. His long-acting insulin dose was cut in half that night. Still, we had to wake up several times early Tuesday morning to deal with low blood sugars due to the long acting insulin he had had. He was completely off the long acting insulin last night and we still had a low blood sugar this morning that required me to wake him up to eat something to bring it up. 

Monday, during the day, Ronan got a total of around 22 units of fast acting insulin for the day. This was to correct high blood sugars and to correct for carbs he ate. Yesterday, he required only 4 units all day. So, things are changing in the right direction quickly! I've been sleeping in the boys' room because the monitor likes to disconnect from my room even though it's within the feet it's supposed to be in. I was worried it would disconnect and I wouldn't hear a beep for a low and I was constantly waking up to check it. This way, when there is no alarm, I can actually sleep a little better. I do miss my bed and my husband though. 

The other tricky part of steroids is that they have a depressive effect on Ronan. It wasn't nearly as bad this time as it was during induction, as the duration was much shorter, but it still started to have that effect, which is always hard to see. Tonight, he was a little more himself and we heard some real belly laughs which lifted my heart tremendously. Ronan packed on a few extra pounds this phase, as the steroids make him ravenous at all times. It was hard to restrict him for the carbs and timing of food, but he did so amazing with it, even though he was miserable in that way sometimes. He told me that the steroids make him even dream about food! The extra pounds may do him good in the next part of this phase, or in the phase after this as his appetite is likely to be down. Other than that, his hair has thinned way down and we’re waiting to see if he gets to keep what’s left or not. He has been very fatigued and he has one little mouth sore. 

Ronan's counts are definitely down, as expected for this time period. He is officially neutropenic again, which makes him vulnerable to infections. Fevers would mean admission. However, his hemoglobin and platelets are holding their own and we did not need any transfusions this week. Friday, we will get local labs. If his counts have recovered enough for chemo on Monday (an ANC of at least 750,) we will proceed with the next step on Monday. If counts remain low, we get a week off, and we'll check next Friday, and move forward the following Monday. We are kind of hoping for a week break from this exhausting stuff, but if his body is ready, we will push onward, and be one day closer to maintenance. 

Let's see...kidney things update. We saw our wonderful nephrologist. I was pretty devastated to learn she will be retiring this summer. She has seen Ronan since he was 1 day old in the NICU and she is just the most warm, wonderful human being. She was such a comforting face in our scariest days last summer when Ronan had to be put on dialysis and transferred to the PICU. I am so sad to be losing her. She had us go in for a renal ultrasound, get a whole bunch more labs and urine tests, and wear a 24 hour blood pressure cuff to really see what Ronan's blood pressures are doing on the regular. He was briefly on an antihypertensive last summer after dialysis but it was discontinued during Blina, when Ronan developed hypotension (low blood pressure) and he hasn't needed it since. However, lately his blood pressures are a little elevated and they debate putting him back on it. He is still taking his bicarb three times a day also.

Basically, she said his kidneys aren't looking super happy. They are sensitive and they are being bombarded with chemo and it is having a predictable negative effect. His eGFR (the rate at which his kidneys can filter his blood) has dropped a bit since last summer. However, he is still considered in stage 2 of Chronic Kidney Disease. She is looking into anything we can do to offer more support to his kidneys through treatment but basically...we can't let up with treatment...because we have to save his life. Treatment is going to be hard on his already damaged kidneys and we just have to hope like hell they can continue to withstand the onslaught and hopefully, many, many years afterward. This is extremely hard for me to swallow and I feel a lot of anger and sadness flare up when I worry about the future. I just want Ronan to have a normal childhood at some point, and I hate thinking we get through one medical crisis to face another. (I really do want to go to the smash room.) But. all we can do right now is what we can do. We take one day at a time, one fight at a time, and we kick this cancer's ass. Then, we deal with what comes next. If Ronan can be as tough as he is, so can I. 

So, that's where we stand, waiting to see if we start the next part of this phase on Monday, or we get a week in between. In the meantime, Jack is about to turn 5! I just can't believe it. In some ways, he's grown up SO much this year. I'm so excited for him to get to start kindergarten next year and I think he will absolutely thrive. I also still see that squishy, smiley little babe, and I feel like I blinked and here we are. He is quite the character and he makes us laugh all the time. He is a huge bucket of love, always with a smile and a hug or 10, and he gives the very best, wrap his legs around me, squeeze tight bear hugs.

These couple weeks have been really hard on him too with allllll of the clinic appointments and required focus on medical things again. He is a champ about things and he loves Ronan so dang much, but it's hard on him anyway. He's mentioned a lot lately that he wishes there was a button that he could push to make the cancer go away. He tells me things like he loves this picture best because it was before Ronan got cancer. It's a little heartbreaking. He's also been having tummy aches a lot, so much so we took him into his pediatrician just to check on it. He is very healthy and we all think they may be more related to stress than anything :(  We want his birthday to feel so special to him, even though we will hold off on a real party until probably April. He wants Star Wars for his party theme! Both boys have recently discovered Star Wars and love it. Nobody is allowed any countdown style things for his Birthday because I'm afraid of a medical crisis messing it up. Dates can be moved when you're not quite 5 but count downs are hard to change. We are crossing our fingers for a fun celebration that is uninterupted by anything medical!

While I don't want to get political here, there has been a lot happening that is weighing heavily on me in addition to all of this lately, and it is no longer just political. So many things go beyond political, but I’m going to keep to a narrow scope in this forum because I don’t have the energy or bandwidth for debate in this space that’s supposed to be my space to vent and share and update. But everything is honestly a lot to be inundated with on top of how heavy our little family world feels right now. To be in the position we are in right now and to see a total upheaval of public health and health communication, research funding slashed, etc. to see St. Jude is posting about how their research will be negatively impacted, it all adds thick layers of stress. 

Pediatric Cancer research is already underfunded. We are "lucky" to have one of the more common kinds of pediatric cancers that has been more heavily researched than others, and it's still not enough. Kids are still in treatment for years. They face all kinds of side effects from treatment. So much more is needed, not less. Ronan is already an anomaly because of his renal issues, but that is only scratching the surface. I read a book this week detailing the story of Jessie Rees, the little girl who started Team NEGU (Never Ever Give Up), and who started what became the Jessie Reese Foundation, that now sends Joy Jars to thousands of families like us every month. She lost her fight with DIPG only 9 months after she was diagnosed. DIPG has seen no advances in treatment in decades. As awful as this journey has been, I can't even fathom what it would be like to be told your child has cancer, and oh, there's nothing we can do. 

There is also a lawsuit filed by multiple states that is questioning the constitutionality of 504. It began with trying to eliminate language that was added around gender dysphoria, and it has now widened to include the entirety of 504. If you have ever followed Sharon McMahon (or sharonsaysso on instagam,) she has a great breakdown of exactly what the lawsuit is along with copies of the peititions filed. 504 is applied in many, many different ways in the US. One of the most widely known is the 504 plans in schools, which allow for children to receive special services they need for various medical conditions, or learning needs. Ronan's 504 plan is what is allowing him to receive tutoring services while he cannot be at school in person, and what allowed him to miss extra days, and have some safe guards in place when he was able to attend. It is much bigger than that in the way it is applied outside of the schools, but that's the example that is so personal to us at the moment.

Anyway, states are suing to abolish this law, and when confronted, many of them were outright lying about what they were trying to do to people writing to the various AG.'s Kansas finally recognized their lie when called out and said they would be changing the language in the petition…but these are just a couple examples of things that could directly impact us on our cancer journey, which is what I will stick to talking about here. Please be informed and be involved. Please consider the people on the other side of these policies and changes when you consider them. There is so much more I could say but again, I’m keeping it narrow here. 

Please send healing to Ronan as we continue into this second half of this brutal phase. Please send love to both boys as we navigate everything. Ronan has really been missing school and his classmates lately. If any of you are still following his journey, he could use some little hello videos from his friends! They would really give him a big boost right now. Thank you for your continued love and support. I don't actually know how to reply to comments on here but I promise we read them and are heartened by all your thoughtful words. NEGU with us ❤️ 

Edit: 16 other states have removed the language from the lawsuit that asked that all of 504 be declared unconstitutional due to public outcry. There is still a lawsuit pending regarding the language around gender dysphoria... BUT one win today that demonstrates how our voices and our advocacy can make an impact. Do something good today.