It is September 30th, the last day of Childhood Cancer Awareness Month for this year. By the end of next September, Ronan should be done with treatment. It's a thought I have barely let myself think about. It is out there, in the universe of my head, but I actively don't let myself think about it too much. It feels like bad luck or something. It feels like tempting fate. 

I've been following a few other families on this journey. One of them is actively losing their child to relapsed neuroblastoma. One of them is losing their little boy to an aggressive recurrent brain tumor. Their posts are getting harder and harder to see, but I also can't seem to stop following their story. It makes my heart hurt so much because I see my worst fears reflected in them living out every parent's worst nightmare. There is just not enough that can be done. Once touched by this, it's hard to go back to being unaware. It's why so many families stay involved. 

This month is a time to call it out from the rooftops. Our kids deserve more options, less toxic treatments, more wraparound care that includes holistic and healing therapies along with traditional medicine. We are one of the "lucky" ones having ALL, the most common and most well researched form of childhood cancer with the best survival rates. Yet, we know, Ronan will require follow-up and deal with lifelong repercussions from his treatment. And that is the best case scenario, the lucky scenario. We don't take it foregranted for a second, but I do still wish for more, for my child, and for every child fighting, or who will fight. Funding was cut from one of the only groups actively studying pediatric brain tumors. One of the only clinical trials available for that cancer is no longer available. I imagine that about the only thing worse than being told your child has cancer, is being told your child has cancer and there is nothing they can do. Kids deserve better. We have all been brainstorming ways we can give back. Ronan has suggested signing up to make food at Ronald McDonald, doing fundraisers for research money, and doing toy drives for the hospital. We will definitely be searching for these opportunities and doing more to give back as time passes. It seems only right to pay it forward.

We've been in go, go, go mode around here. We are officially moved into our new house (thank you to all of our helpers who moved us, cleaned, unpacked, helped fix things at the new house, and organized!) The goodbye to the old house was an emotional one but I think we’re all starting to feel good in the new one. The boys are doing well in school. They actually have a jogathon this Friday! There are some challenges to being back in such a routine but I think it's been really good for everyone too. We've had another cold virus run through our house, right on schedule with the move, which wasn't ideal. However, we managed to stay out of the emergency room with Ronan and that was SO appreciated by all. 

Ronan had an appointment with his new nephrologist on Monday to establish himself as a patient with him. He was pretty encouraging and positive, which is always, always welcome when it comes to kidney news! He thinks we may be able to wean Ronan off of so much bicarb and maybe even his blood pressure med when cancer is said and done. The future, and how well Ronan's kidneys will support him as he grows and goes through puberty as always is a question mark. However, all we can do is what we are doing by supporting his kidneys and taking his meds and crossing fingers and toes that those kidneys keep up! 

We also saw our oncologist on Monday and had labs. Ronan was lower than they'd like again, on all fronts. He was a whisper away from needing blood as he was right on the line. His ANC and platelets were low enough to warrant a chemo hold this week. It's a little hard to say how much the virus he was fighting played a role versus just his chemo but the result is the same. His little body gets a break this week. That always comes with dual relief and worry but best we can do is follow the protocol. 

When we do start back up, we'll be starting at a lower dosage and adding a medication called allopurinol. It's a medication we had during induction for different reasons. This time, combined with his current oral chemo, the hope is that it will change the way his body is metabolizing the chemo. It breaks down into two different biproducts. Some people break it down disproportionally into one over the other. This can cause it to not work as well as we'd like from a therapeutic standpoint, and cause more negative side effects than we'd like, such as the hypoglycemia we've been dealing with. It will be a closely monitored switch though, as combining the meds makes his chemo work so much more effectively, it can go too far. His dose will be decreased to begin with and we'll probably have more frequent labs for a while. This particular action isn't super well studied in this population but is starting to be more widely used. Fingers crossed for good results! Changes like this always come with so many nerves for us. Those nerves also act as a stark reminder that maintenance is still active treatment.  

We are fully decorated for Halloween as of last night. We're also actively planning our costumes! The kids have technically been planning them since last Halloween haha but now the excitement builds! We are going very classic this year and it should be fun! We love this time of the year and all the fun traditions that come along with it. It will be nice to do them Blina free this year! We are ready to fill this house with happy memories. 

Thank you for continued support by so many. If you can, find a small way to continue supporting families like ours! Give blood. Make a donation that will help directly. I have links to three really amazing organizations on this page. Advocate and inform whenever you get the chance! Keep cheering for Ronan too okay? We look pretty okay but we are still in this thing, and we have a ways to go!