The last five days have been a total blur. It feels like it's been weeks since Friday but here we are, only 5 days later...an update and some word vomit to clear my head. It's the first night I've spent away from the hospital and I am in serious need of some sleep but my mind is too full to reach for it. I'm hoping this helps. 

This induction phase of treatment starts with 4 drugs. The first was injected into Ronan's spinal fluid when they did a lumbar puncture to check for leukemia cells there. If my tired brain remembers correctly, he'll have this again on days 8 and 29 of induction. The second will be given once a week on Mondays. The third, a steroid, also started Monday and will be given twice a day all month. The fourth will be given once, on day 4, and tomorrow will be that day. 

Every day has had good moments and really hard moments. The team has been riding a fine line of balance with fluids. Additional fluids will help flush out Ronan's kidneys and act protectively for them. However, he wasn't tolerating that super well and got super puffy all over. So they backed off on fluids and it has improved substantially but tonight, some numbers were high enough they need to start fluids back up, which means he will probably be more puffy in the morning...it's a balancing act. Additionally, this first week brings higher risks for electrolyte disorders and things like that due to all of the lysing cells. Phosphorous has been a tricky one for us as the medication to correct high phorphorous is truly awful. Ronan is SUCH a trooper when it comes to medications but he reallllllllly hates that one and it's been super hard to get him to take it and to not feel absolutely horrible when we have to try to make him. 

For every win, like he got to take a bath today and got all bandaids and medical things off save his port, there is a hardship. He was SO tired tonight and all of our plans for a restful night are now interupted due to lab results and a need for interventions. There are no words for how painful it is to watch him be sad or be scared, or ask if we can please just go home. I seem to go between feeling tearful and feeling so angry that this is happening to him, angry enough to just want to smash things. 

The other piece of my heart is also really struggling and has been full of attitude and defiance and spiciness the last couple of days. They do some things to try to help siblings through this too but of course it's hard for Jack. We are completely out of our routine, in new places, and are needing to focus a lot energy and time and attention on Ronan. I think he is feeling like his little world is out of his control. I am an adult and I can barely hold it together or put this all into words. I can't imagine trying to do it at 4 years old. 

A bright spot in this dark week is that we got a spot at the Ronald McDonald House here for the next month. It is very close to the hospital. It is literally the most incredible, extremely generous, warm and healing place to get to be. Every little thing down to the painted murals on the walls, the garden, the play areas, the meals provided by volunteers, the grab and go snacks and breakfast and dry food pantry all provided to us at no cost is simply amazing. We could not stop crying when we checked in and got the tour. There are so many places for the kids to be and have fun and be safe while Ronan gets through this first month. This place takes such a huge burden off of families going through things like this and we are so grateful to be here. I think I will donate to this organization for the rest of time. Child life at the hospital, the arts and craft people, and the hospital social worker have also been incredibly helpful. They have offered fun and distraction between the moments of sadness and hardship and those moments have been everything. 

Thank goodness for the family and friends that have supported us all week, that came from out of state to be here, that called, that played with Jack, that loved Ronan from near and far. It has been completely overwhelming. We are very thankful for all of you that have reached out, sent coffee cards, called, donated money, flew here to be with us, cleaned our house, took care of our dog, sent drawings and letters and toys. We feel like we've joined this amazing club where everybody is so generous and kind and there are so many things to help us through it...even though it's a club we'd give anything NOT to be a part of. 

Please keep sending all the love and healing to our boy. He is only just beginning this climb. Send us strength to help him, and to lean on each other as we do. ❤️