We spent 12 hours at Sloan today. I took Ro over there this morning to finish up his stem cell harvest. We are finally finished and they got more than enough, thank the lord. I don’t think I could have handled one more day of him being hooked up and I know he couldn’t have. We did a stem cell collection at Phoenix Children’s and many of you have asked why we are doing another one here. We are basically doing it for “insurance.” IF Ronan’s Neuroblastoma comes back….. which we pray it doesn’t, Sloan believes by having his stem cells before a relapse will increase our chances of killing this god awful disease. If they were to try to harvest them after a relapse, they don’t think the stem cells will be as good. They will stay here at Sloan, frozen, and hopefully we will never need them. We are taking every precaution as parent; we have no choice.
It was a good day though. I had a visit from a friend that just happened to be in the city for the day; a friend who was my very best childhood friend and whom I have not seen or talked to really since I was 13. She was so sweet to come by the hospital to see me. It’s so funny how life works out; as soon as she walked in it was like, hello childhood! She looked exactly the same, except even more beautiful…. if that is even possible. I am so glad I got to see her and so hope to spend some more time with her when she comes back from her trip. Thanks, Jen for coming by. My friend from AZ, Danielle, or DD, is in NYC too! Yay for that! She is staying with her brother in the city for a few nights then heading to spend Christmas with her family. She came by the hospital and hung out with us for a few hours. Always love having her around. So, I had two nice treats today from two lovely ladies. I feel so lucky:)
We have nothing else too major going on tomorrow. Ronan will go to the clinic for platelets and then Thursday we have his CT scan done. So anxious and nervous all at the same time. Please pray extra hard for him…. hoping the tumor in his abdomen has shrunk even more after 3 more cycles of chemo. I will keep you updated as best as I can. We go in very early on Thursday morning.
I am taking a night off from my run tonight and all 3 boys are going to stay with Mimi and Papa. I am going to enjoy a night out with Woody and some friends. A night out together is very much needed. Ronan’s spirits have been great; he is such a little trooper. I am the luckiest mommy alive.
Enjoy the rest of your day<3 It’s the simplest things that are the sweetest!!
Today, has been non-stop. We got up at 7 NYC time, got all ready and headed over to Sloan Kettering. Ronan was not happy and is still not happy about being here. He keeps asking for Sharon, our nurse back home, and said he doesn’t want to make any new friends here. He was so upset over having the blood taken out of his tubes (which is something he’s had done 100 times) that he kicked and screamed the entire time. We have met a lot of new nurses and doctors, all who have been beyond nice. I was a little overwhelmed walking in here. It felt a little like we were starting all over and just being told that Ronan had cancer. I quickly snapped out of it after seeing how much the doctors really do care here. Dr. Modak, who is part of the Neuroblastoma team, has an entire wall in his office full of pictures of Neuroblastoma survivors. Woody and I both got teary eyed over it. It was the most beautiful thing I have ever seen; a wall full of kids, young and old, who have survived this horrific disease. It meant the world to us, as parents. Everything here is very positive, inspiring and everyone wears a smile. We miss our few close friends at PCH but I think we will be o.k. here. It’s not quite as scary as I thought it would be:)
After Ronan’s blood work came back and was super high, they decided on the spot to harvest his stem cells. This is great news! It means everything will move a little more quickly. The Doctor even got his sugary date bumped up to January 3rd, instead of the 7th. We are so happy about that. The sooner we get the job done, the better. Everything here is really fast paced and precise. I like that; cancer is like a job to me now. I know what we are here to do, and we are going to do the best job at getting it done.
Ronan is mad that he has been at the hospital all day. He is finally asleep while they are collecting his stem cells. We asked Dr. M about any restrictions as far as taking Ronan out in the city. He gave us the green light to take him wherever since his ANC is so high. I love a green light:) We are going to make the best of our time in the most fabulous city in the world. Ronan is so going to take it by storm and I know this is something we will look back on in a very positive way.
That was yesterday, I finally got the Wifi set up so now I can hopefully keep you all updated. The stem cell harvest went great yesterday but they did not get the amount they needed so we will have to go back on Monday to let them harvest again. Not a big deal… we are going to enjoy today and Sunday out of the hospital and have some fun in the city. Hope you all have a beautiful weekend!!
Today got off to a bumpy start. I woke Ronan up around 6:45 a.m. and he was not happy to say the least. One, he was mad that I woke him up so early, and two, he was even more mad that he had to spend his day at the hospital. After having him hit, scream, cry, slam doors, and hide.. I finally got him into the car. He calmed down after a bit and I kept assuring him that there were no owies today. Once we got back to the stem cell room, our nurses, Heather and Kim, got things moving very quickly. They gave Ronan his Benadryl and Tylenol and soon started the process of collecting his stem cells thorough his broviac. Medicine and science are so amazing, the whole process was mind blowing. After about an hour, we were able to see the stem cells start to appear in the bag. Ronan slept for the first couple of hours and after that, it was party time. He was a busy little guy but everything he did was done from his bed. We watched a little movie, shopped for Halloween costumes, played Star Wars, colored, did a sticker book, and last but not least, Ronan teased and flirted with the nurses the entire day. He was so playful and cute and he had those nurses eating out of the palm of his hand. Mimi Kay spent most of the day with us and Tricia came to visit as well. Ronan loves having those two around and so do I. It was a long day, but a fun day. Any day that Ronan is in great spirits is a good day for us.
After we got home, we played with the twins and waited for Woody to get home. It was a great day weather wise here… lots of storms and rain. Being a Pacific Northwest girl, a stormy and rainy day always make me happy. After it stopped raining I got a text from my friend/neighbor asking if we wanted to go for a walk. I knew the fresh air would be good for us so Quinn, Ronan, and I walked down to the Tarbell’s to pick our friends up. It was the best walk date ever. Ronan was so happy, running in the puddles and smiling. Laely and Wesley watched from the wagon and everyone was in a great mood. It made my heart melt seeing Ronan running around acting like the little 3-year-old he is supposed to be. What a great way to end our day. I love my neighborhood and I love our friends.
We heard back from the hospital tonight. We will not have to go back tomorrow because they got all of the stem cells they needed today. They needed 10 million and they actually got close to 15 million. So happy about that news!! One less day in the hospital for us! Our next big day will be Thursday when we go in for our MIBG scan, Bone Scan and MRI. We will then find out on Friday more in detail how the chemo is affecting Ronan’s cancer. Please, keep praying and loving him. I know all of your prayers, energy and positive thoughts are working on our sweet baby boy!
He is out like a light now and I am wiped out too. I hear some Nancy Botwin calling my name. I am going to indulge a little bit tonight and watch one of my favorite shows for a bit. Goodnight to all of our angels out there!