We have had a few weeks of highs and lows around here. Our very first round of chemo in this new phase brought a lot of nausea, some vomiting, and a difficult time reaching our 2-liter/day fluid goal, plus some major fatigue. We did not, however, have any fevers after the IT Cytarabine and for that we were very grateful. No ED visits! 

For this second round last Monday, we added a new nausea medication, an infusion that will cover him for 3 days, in addition to the other nausea meds we have for home use. It helped a lot! No vomiting, less nausea, and therefore an easier time meeting our fluid goal. He was still pretty fatigued, especially the couple of days following, but it was manageable. 

Today, he also started having some symptoms of a mild amount of mucositis, which is a potentially very nasty and painful side effect of methotrexate that results in sores in the GI system, appearing anywhere from his mouth, all the way down to his bottom. He has had a few mouth sores in the past but nothing extensive or crazy painful. We have some tools to combat this and we're using those. So far, just some very mild symptoms so we're hoping that we can keep it that way. At worst, kids tend to stop drinking/eating well because it hurts and this can result in hospitalization for help managing that. Pain or infection can also go along with bad cases of it...and again, all things we hope to avoid. 

The other thing Ronan is experiencing, without a full explanation yet, is hoarseness. Initially, we were thinking it was allergy related and weren’t associating it with the chemo. However, it has continued to get worse over the past several days. He isn't ill, so it doesn’t seem to be related to a cold or something. He has complained of a very mild amount of throat pain only yesterday when the Mucositis symptoms appeared but it doesn’t necessarily feel connected to that either since it started much sooner. There are multiple possibilities for what could be causing it. Our understanding is that it could be just a sign of inflammation in his throat from the chemo and/or Mucositis, or it could be a very rare response to one of his chemos that can mess with nerves. Usually it is more known to cause peripheral neuropathy but it has also been known to cause issues with vocal cords. So far, the guidance we have received is wait and watch, and report changes. It is not currently painful and it is not affecting his breathing, or causing issues with swallowing. So we wait and see, and try not to be excessively worried, or freak him out in the process. 

Good things we have fit in, despite all of the things and worries…With our team's blessing, we finally got to travel to see family in Idaho for the first time in a year! Many nerf gun battles ensued between all the cousins. The kids also did lots of playing outside too, and even had the first water fight of the season. The boys really did not want to come home. My mom also met us there. It was very nice to spend some family time, especially after such a long period of true isolation in the last phase. 

We got in our first beach day since September, and it was a blast. The sun shine came out and it was a next to perfect day. It was also nice to spend it wjth friends we haven't seen much of recently. 

Both boys had their hair cut this week, and are looking super handsome. It was the first hair cut Ronan has needed since he had me shave what was left of it last July. It was weirdly long in the back and some of the top was very short (from the fresh loss in DI) while some was longer because it managed to stay put this last phase. Now it is evened out and has shape and he looks more like his old self! Jack got a little trim too, as he was getting close to man bun status. 

Ronan has been back at school for half days for the past couple of weeks, and he tried his first whole day on Friday! As expected, it was quite tiring for him, but we figured a Friday was a good bet so he could have the weekend to recover and rest up. We've all been fully appreciating the sunnier weather and getting to be outside. We are soaking up the friends and family time and counting down the days to summer. We are making hopeful plans.

I mentioned in the last post that this time of the year is a bit triggering for me. It has made all of these good things feel a little bit surreal. We took a trip to Idaho at the end of March last year. We had a couple of beach trips in the weeks leading up to diagnosis. Mother's Day is approaching and though we made a fun day of it last year, what strikes me most about that day is thinking about how worried I was about Ronan's belly being so big all of a sudden. It was a couple of days before his first visit to the pediatrician to follow up on the anemia (and his belly.)

There are moments that do feel so normal now, but they still exist in the context of the reality that Ronan is still in this fight. I'm not sure that makes any sense, and it's hard to explain. Sometimes I can be wholly present in the now, like for most of our beach day, for example. The boys were having so much fun and I was just having fun with them, and for a few hours, it was almost like I could forget the other part. It was almost like a before day. On the way home, when I was feeling that, I became super emotional in a happy way, for how good it felt. 

Other times, I feel like I'm participating in the moment but I'm still keenly aware of that other reality and it sometimes makes me feel like I'm on the outside of whatever is happening, spectating. I guess an easier way to say all of that is that sometimes I'm more in my head, and occasionally I can be in it less. It isn't really a voluntary thing at this point, but feels like something that catches me off guard in a good way, when it happens. 

As we enter this time period approaching the anniversary of his diagnosis, but we're also finally getting to have some of these happy, normal moments, I find myself flipping back and forth between those two states of being  a lot. I want to just be there, in those happy moments. I want to be able to forget for just a little bit, about all the memories and worries, and what's next, etc. Often though, I'm appreciating the happy while the rest runs as constant background noise in my head. 

There is also a lot of anxiety and excitement about entering the next and last phase of treatment. Ronan will spend the next 15ish months in maintenance. The excitement comes from getting to this milestone, and being through frontline, which has been brutal (and isn’t over yet.)  Maintenance, is no picnic, but it is the time when we can supposedly go back to our lives as much as possible. It will be one clinic visit a month, with an LP every 3 months, and daily oral chemo at home, plus an additional oral chemo on weekends when it is not an LP week. The anxiety comes from understanding that this is the first time since diagnosis that we will be backing off a little bit on fighting the cancer. Obviously there is a protocol for this, and odds are good that it will be fine to do that, but the worries of relapse are there. We try not to dwell on that possibility and only look forward, but that worry is always present. We are so thankful for Blina becoming available, and our for Ronan to have tolerated two rounds of it, because it decreases his risk of relapse. So, there is a dual excitement anxiety about entering maintenance. It is also, yet again, a new phase that we haven't tried yet so we worry about how he will tolerate it. Most kids do well. We hope hard he is one of them. 

**As I was working on this update, a friend messaged me to share news that her son is losing the fight against his cancer. Doctors are telling her he has very little time left to live, and she is at a loss. How does she breathe, or move? How does she begin to process that, much less share it with her child? My heart breaks for her, for them. It's your worst fear at diagnosis, and every time there is a complication. It's the nightmare that comes back to haunt you. I wish things were different. I wish she was breaking up an argument between him and his sister over a television show or whose turn it was to do something. I wish she was annoyed that he was giving her attitude about his homework being done before he can go out with his friends. I wish she was watching him play a sport. I wish she was teaching him to drive. I wish they were on vacation. I wish...for a cure, for a miracle, for more time for them, for managed pain, for support, for strength. I wish. 

After talking to her, I think to myself that I will take no moments foregranted. I will be thankful for attitude and arguments, right along with the milestones and proud moments. I will try to see my messy house through the lens of gratitude that we are home together and it is messy because they are well enough to play. I will appreciate eye rolls along with smiles. When I am struggling in the challenge all this is, I will be thankful anyway, that we are moving forward, that he is getting through this, that we all are getting through this. I will carry their names in my heart and thoughts and I will remember to be grateful. 

Please say a prayer for this young boy and his mama, and for every family out there facing news like this. There are far too many. 

Please continue to send love to Ronan, as we push through this last phase. Healthy kidneys. No complications. Managed side effects. Answers and reassurance.