We finally made counts (ANC above 750) on Friday so we are back up in Portland at RMH. Tomorrow, we will start the second half of Delayed Intensification, or DI2. It will be a long day. 

Our first stop is the clinic for an 8:30 appointment. We will check in, get Ronan’s port accessed, get labs, and see our doc for a check in. Then, unfortunately, we will have to head over to the in-patient floor. The infusion center is totally full tomorrow so we will be admitted (hopefully just for the day.) 

Once admitted, we will start pre-fluids for the Cyclophosphamide. It can be hard on the bladder so Ronan will be loaded up with fluids before they give it. An hour or so after this, he will have an LP where he will get IT methotrexate. Then he gets his actual cyclophosphamide infusion over a couple of hours (I think.) Then he gets post fluids for it. He will have to pee a certain amount before we are allowed to go. Ronan has never had this chemo before, and it will be the only time he gets it. 

He will also get his first dose of IV Ara-c (or cytarabine), something he has had IT before, but not IV. It will be given fairly quickly. He will get this one once a day for the next 3 days. Bryce and I will actually be taught how to give it tomorrow and we will be the ones to give it on Tuesday and Wednesday. We will be able to leave while he is accessed and once he’s had these three days of chemo, we will de-access him at home. This is a process we will repeat on Monday, Tuesday, and Wednesday of next week for this chemo. 

Lastly, Ronan will start an oral chemo tomorrow night called Thioguanine. It is similar to the mercaptopurine chemo he took at home during the month of consolidation but it is stronger. He will take this once a day for two weeks. This is also a new medication and one we will not have again. 

The biggest thing we have heard about this combo this week is nausea, vomiting and a decreased appetite (along with low counts.) We will be watching fluid intake carefully to make sure Ronan can still drink enough to keep his kidneys happy, despite those lovely side effects. There is also some chance that the Ara-C will cause a fever which would land us back at the ER (hopefully not for very long but still.) We are hoping to stay up here at RMH for a few days to circumvent needing to drive back up in a hurry if he does spike a temp or have issues with fluids. 

I feel a little anxious going in since these chemos are all new for Ronan. There are many other less common but scary side effects listed that you really hope never show up. We also have our normal LP nerves due to his past seizure, and just hating sedation days. BUT…once these couple weeks are done, we’ll have only one phase of frontline treatment left, and that is something to celebrate. 

Please send us good luck vibes for our day of new meds, with well managed side effects for Ronan. ❤️‍🩹 Being on the in-patient side of things almost guarantees that things will move a bit more slowly and a bit less easily so send hopes for a smooth day with a great nurse. The rain is supposed to kick back on tomorrow so at least we won’t be missing this beautiful false spring weather to be stuck in the hospital! (We’ve all so been enjoying the weather reprieve. I even saw trees blooming today. Ronan found this lady bug a couple of days ago. 🙃🐞 We decided it’s good luck.) Onward to DI2 we go.