Well, today was the day we went back to the hospital for Ethan's first outpatient visit since having been released to go home on Sunday. I had a bag packed for both he and I just in case they said we needed to be readmitted - and because I wasn't sure exactly what might take place. We went in and they weighed him, took his temperature, and asked me how he'd been the past couple of days. I said he's been great - and he has! Smiling up a storm, talking in his own little ways, eating well, taking his medicine, being very active... and so on. They drew his blood and told me that since he's been acting normal and didn't have a temperature, that we could go home again. They will call me later today with the results of his blood counts, and if they are still good, then we stay home until Friday for our next outpatient check up... or if the counts are low, he'd go back tomorrow for a transfusion. I was mildly shocked at how easy it was... and I'm hoping that his good blood cells either stayed the same, or increased even more! I should find out later today either way. But regardless... how wonderful that we got to come home again!
It takes a lot of work to take care of him here at home - especially since he's a wiggly 3 month old - (chemo medicine by mouth once a day at night, antibiotic by mouth twice a day, pushing syringes of Heparin through his tubes in his chest once a day so his blood doesn't clot, changing his bandages once a week - and all the crazy details in between), but I'm so happy for every moment we are able to be here at home as a family. And I am so thankful that God is with me and Adam each step of the way, and that He's allowed us to be so comfortable with everything that our little boy needs of us right now. Ethan has been such a good baby with all of this. Holding him, hugging him, driving with him, watching him smile and pretend to carry on a conversation with him and his babblings... it's such a joy.
I also found out at our appointment today what the next steps will be. He will continue taking this chemo medicine by mouth for the next 3 days here at home, then he will take a break for a few days. In about 8 days from now we will be re-admitted to the hospital so that he can start back on the IV chemo he received a while when we were first admitted. He will stay in the hospital on that version of chemo for 6 days, with a 2 or 3 day observation period to monitor for possible side effects after the chemo stops. Then, if all continues to go well, we'd be able to come back home after that week or so and begin his 'chemo by mouth' medicine again. As long as Ethan kept responding well and remained "healthy" in every other way, we'd continue this process until a bone marrow transplant was ready.
Please be in prayer that the above scenario would go smoothly and that each step of the way Ethan would continue to respond well and show improvements so that we'd be able to bring him home in between and do some of the treatments here by ourselves... like we're doing now. Also pray that when we go back to the hospital, he'd not have the painful side effects(mouth/esophagus sores) or eye swelling that he had the last time he was on the IV chemo.
All in all, I am pleased with this game plan. I love the fact that we can have breaks at home. Still no word back on the bone marrow findings, so continue to be in prayer for that. The sooner we have the donor, the sooner we can get to Boston for the transplant.
As I was driving home from the hospital this afternoon with Ethan, I was so thankful for him. I felt peaceful about things in general. As I pulled up to our mailbox, I noticed a few cards of encouragement for us. Since Ethan was comfortably asleep in the car seat, I decided to read them before I went inside. As I was reading the first one, my mind wandered slightly to seeing my sweet boy playing t-ball one day, with a cute little ball cap and running around the bases... with Adam and I watching and cheering from the bleachers. It's a vision I think of often. But today, as I started to read the next card and the next card, they each held a verse that brought me to immediate tears.... Mark 11:24 "Therefore I say unto you, What soever things ye desire, when ye pray, believe that ye receive them, and ye shall have them". I don't believe in coincidences. I believe in God's divine intervention. Envisioning my little boy playing kiddie baseball one day, and sitting on the bleachers watching him run and play - and then having that verse pop out at me not once, but twice on 2 different cards - my tears just couldn't stop. I felt yet again, that God was listening.... not to anything I was actually saying.... but to my thoughts. And He spoke to me... through the cards of two different, yet equally as special, people with the same verse and theme.... Whatever things you desire, Kasey, when you pray, believe that you have (or will) receive them and you will have them.
I don't understand the reasons behind this trial we're facing, but I'm confident of three things...
1) It is for a grand and special purpose,
2) The struggle is only for a season,
3) And that God answers prayer.
P.S. - To my kindergartners: Michael, Olivia, Antonio, Joey, Paige, Ethan, Simon and Caleb... In case you are reading this message (via your parents!), please know that I love you and miss you very much! I know that you are praying for Baby Ethan every day and I want you to know that Jesus hears your prayers and He smiles every time you talk to Him. Thank you so much for praying for my baby. Continue to be good for Mrs. Rivera, and know that the only reason I'm not with you is because my little boy needs me very much right now. But I think of you all the time...