We are at the clinic while Ronan does his second day of his new chemo. This morning we did his oral dose at the house before we left. Mimi Kay stopped and picked up a Slurpee and I put on my rubber gloves, opened his chemo pill, and dumped the powder into a little cup of Slurpee so he wouldn’t taste it. He hesitated a bit but then downed it like a champ. We arrived to the clinic and they got things moving fairly quickly. Bethany and Fernanda both came and sat with us for a few hours. It was so nice to have their company. Makes the time pass more quickly. We have a couple of hours left of hydration and then we will be set to go home for the day. Ronan is more than ready for that and has asked for the past hour when we can leave.
Today, my stomach is in knots. I know in my heart of hearts that we are taking a different path for a reason…. the only reason which is because we are going to get Ronan rid of this disease FOREVER. It’s the not knowing which path we are going to take that is hard; the anticipation of how this chemo will work is eating me alive. I know I can’t worry too much about the future because we just have to take it day by day. We have a lot of decisions to make and I am so thankful to be surround by the smartest people in the world to help us make these decisions. My head hurts, my stomach hurts, I can’t stop crying and I’m tired and just want to fast forward time until Ronan is back to being cancer free. Once again, my crazy intuition tells me that he is going to be fine and grow up to live to be 100. I know my intuition and it is always right. I also know that it is going to help us in making the right choice for Ronan. I just have to trust in it and trust in myself.
I can’t stop crying today and it is over everything from how blessed I am to have the amazing support I do, to feeling sorry for myself, my family, and my son. It’s been a roller coaster of an emotional day. This new life gets overwhelming at times but I have to just keep pushing forward. There has to be a light at the end of the tunnel someday…. it’s just going to be awhile until we get there. We will continue this fight for the rest of our lives for Ronan and everyone else until a cure is found.
After Ronan and I left PCH it was about 2:30 and he was begging for Mexican food. Like father, like son. I took him to one of my favorite spots, America’s Taco Shop and he ate a huge bowl of salsa, chips, a carnita taco and an entire burrito! The kid has such an appetite and it was so nice to sit outside with my son and bathe in his happiness. My heart skipped a beat. The love I have for him is almost painful at times. After we were finished, we were walking to my car and he grabbed my hand and goes, “Thanks for the date, mom. I love you.” I was overcome with so many feelings at once; of my stomach dropping but my heart was singing. I never knew before all of this how many emotions one could experience all at the same time. These little life lessons I’m learning are not always fun, but I am thankful for them. Ronan and I came home, both tired and we curled up in my bed, I read him a book and then he does what he always does which is snuggled his little head below my chin and goes, “Goodnight Mama.” We both fell asleep. Although my sleep was restless, I still needed it.
Tomorrow, we will be admitted into the hospital until Monday to finish this round of chemo. He is handling it so well and is running around like normal. On Tuesday we will go out to San Francisco to meet with Dr. Katherine Matthay at UCSF. She won’t do a consult without seeing Ronan so off we go. Not excited about putting Ronan on a plane, but we will make sure to be extra careful. We have to get opinions from others so we will do UCSF first, and then head to CHOP in Philly, in early March. That is the plan as of now; but we all know how quickly plans can change. It will all have to do with how well Ronan’s immune system is doing as far as keeping our travel dates.
Thank you for checking in on us and keeping our little guy in your prayers. We know they are going to work. We hope you have a very blessed weekend!!