After what seemed like the longest day ever; we returned home around 7:30 tonight. Ronan insisted we stop at CPK for pizza so we met Woody for dinner. I ate my one meal of the day, Ronan didn’t eat a thing and ended up just making me hold him while I ate. As soon as we got in the car I was almost instantly sick to my stomach. I told you I don’t do well with food anymore…. we got home and I threw up my entire dinner. Awesome. Ronan is so used to seeing me do this now he just looked at me and said, “I sorry Mama. Do you want your toothbrush?” It was the sweetest, saddest thing ever. He then asked to be put in my bed and for me to go to sleep with him. That is precisely what I did. I curled up beside him and 5 minutes later we were both sound asleep. I feel like I’ve been hit by a bus and am physically and mentally beat. Ronan woke up around 9:30 tonight asking for some pizza, carrots, apples, and whipped cream. Nice combo. What Ronan wants, Ronan gets. He ate all of the food that I got him and went back to sleep. We have another early day tomorrow at PCH trying to finish up his Audiology test and then going to the clinic for a possible platelet transfusion. When they drew his labs today, his platelet count was low. “A” wants them checked again tomorrow and told me he will more than likely need to get them.
After Dr. Maze came to get me when he was done with Ronan I returned to a very sleepy little boy. I sat quietly and let Ronan wake up on his own and Aubrey tracked down Dr. Wood for me so he would come down and go over the MRI,CT, and Pet scan results. The results are all preliminary results, but I’ll take them. Dr. Wood told me that the Neuroblastoma is still showing up in a few areas, which he expected. Ronan’s shoulder bones, his upper thighs, and his spine all seem to have some Neuroblastoma left in them. The activity has decreased immensely and he said for as much cancer as Ronan had in his body, in no way shape or form, did he expect it to be gone entirely. This is what the Stem Cell transplant/radiation/antibodies will do. Remember, Ronan had Neuroblastoma in every bone in his body; even his pinky fingers. I asked Dr. Wood if he saw anything he was concerned with and he said not all, that Ronan is making great progress. I wish I could say a huge sigh of relief came over me today, but I am still left with a feeling of numbness and sadness. Ronan’s results are amazing and I am elated that his cancer is responding so well; but the bottom line is my beautiful baby boy has cancer and I just want it gone. Now. I know, I know…..this is not a sprint it is a marathon. We will get him there but for some reason today was a hard day for me. Harder than yesterday. As I said before, all of these results are preliminary and we will know much more next week after he does the MIBG scan. That is on February 10th. As of now, we are moving forward and preparing to go ahead with transplant.
I have not spoken to anyone on the phone tonight except my dear Fernanda. We talked about Ronan’s results and I listened to her as she told me how she took the time today to research what exactly needs to be done for isolation and she made out a list for me that she got from the internet of other Neuroblastoma moms. I mean really, Fernanda. Never in my life will I be able to thank you enough for all the things you are doing for me without me even having to ask. I am so thankful for you every second of the day. Fernanda’s list includes everything from scrubbing down our isolation room with a toothbrush (not even kidding), to making sure every item of clothing is bleached and sealed in a bag before it goes into the room. She told me to stop doing my laundry for the next two weeks and to leave it at my door so she can pick it up and I won’t have to waste time on that bullshit so I can fully be focused on Liam, Quinn, and Woody. I said to her, “Well what if I like doing laundry?” She then told me that the only reason I like doing laundry is because it gives me a sense of normalcy and nothing in my life is normal at the moment so to knock it off. I had to laugh as this is so true. Laundry makes me happy because it is the one thing that I freaking have control over in my life and it is something that will always be consistent and never change. It’s true; I absolutely love laundry:)
I am trying to wrap my head around giving up complete control of my life once this isolation thing starts. Just the thought of this gives me such anxiety. I think I need to make a list of the things I can control, just to make myself feel a little bit better. I have no idea what that even will consist of because my “normal” life is pretty much going to be gone. All I have to say to this right now is HOLY FUCKING SHIT. I still cannot believe any of this is real. Shouldn’t this be a movie that I am watching in the theaters or something?? This cannot be real life, this cannot be my life or Ronan’s life. I will never stop shaking my head and the tears will never stop. This is all too much. What I wouldn’t give to complain about the things I used to complain about like having to take Ronan to the grocery store because he would NEVER sit in the cart and would insist on running up and down the aisles which would drive me crazy. Or how I would feel so overwhelmed with my daily “to do” lists….. what a joke. Nothing in my old life was anything to ever complain about. I would give anything to have my worries of the day consist of what I was going to make for dinner and how I was going to squeeze in Ronan’s nap for the day because of all of the “things” we had to do. My past life all seems make believe, like it was never really real and it was all just a dream. I could sit and cry just thinking of all the things I was ungrateful for and how much I miss what we used to have. That won’t do me any good tonight though. Tonight I am not going to sit and cry myself to sleep because today was a day full of good news. I have to remind myself that on days like today, I am not allowed to be sad. Ronan is working too hard so I will take tonight to be thankful for the progress he is making and be proud of what a strong little boy he is. He is the bravest soul that has ever existed.
Tonight, while we were waiting for my car from the valet, I caught a glimpse of myself holding Ronan in the doors to the clinic. It was another one of my out of body experiences as I looked at my refection and almost didn’t recognize who this person was with her baby boy draped over her body. It was me but I felt as though it wasn’t. It took my breath away for a second and I almost felt like I was going to faint. Had nothing to do with the fact that I had not eaten all day I’m sure;) It had everything to do with the fact that I will never get used to the fact that I am now a mom to a child with cancer. I will never accept this and I will never come to terms with it. This is just a moment in time, a sick and twisted way of Ronan having to prove how much he deserves to be on this earth. It’s my way of proving how much I love my son by fighting as hard as I can fight to keep him here and surround him with every ounce of love I have in my body.
God, am I even making sense tonight? I feel delirious and all fired up at the same time. One day at a time, one step closer to Ronan’s wellness, right Auntie Karen:):) She always tells me this…. love and miss you so much. Hope you are having fun in Cali:) Thinking of you there makes me smile because I can picture all of the laughing and fun you are having. That makes me happy and gives me peace tonight. You know what else gives me peace?? All of you. When I get pissed at the world, I think of all of you beautiful souls out there who love Ronan so much and who have faith that his journey is meant for a very special reason. Having you all believe in him and love him so much means everything to me. So thank you a million times over. You all give me strength when I need it most.
Ahhh….. my New York Miss Macy is calling me right now. Perfect timing as she gives me the giggles like no other and I can’t think of a better way to end the night. I am beyond blessed to have the most amazing friends. Love you all! Sweet dreams!!
This picture says everything tonight. My favorite animal is a Giraffe. Ronan’s is a Zebra. Keep on holding on baby. We will get you through this.
9 thoughts on “MRI, CT, and Pet scan results…. kind of”
I introduced myself some months back as knowing your father-in-law because he worked so many years with my father-in-law Bob Stump. Your blog has been one of my five bookmarks ever since and I carry Ronan, you, and your family in my heart always. I have never spoken up, which is not in my nature because I am an assertive, independent nurse. However, I feel compelled tonight to rear my ugly head and express that I am so worried about YOU, my dear. I get what you are going through but you will be no good to Ronan if you wind up in the ER. May I send you a protein shake powder that you can mix with milk and give you what you need for a meal at least? You need the nutritive value and it’s easy. I will also send you vitamins because you probably aren’t doing that either. You need your body to not only function optimally, but SUPER optimally. Please allow me to focus on you and let me send you what you need. If that is possible, please reply.
Hugs and well wishes always, every minute of every day,
Thanks so much for calling me this morning. It meant the world to me.
I want to tell you that I am a very empathic person, and I am SURE that both of our children are going to make it through this. You and I are also going to make it through this. I won’t promise you that we will ever be able to laugh about what we’ve gone through, but I can just see us talking together in years and exchanging pictures of prom, high school and college graduation, weddings and grandkids.
I also wanted to ask if you had heard about the study that connects NB cancer with higher IQ. Dr. L said that the theory is that whatever it is that stimulates the cancer growth also stimulates the neural pathways in the brain, resulting in overall higher IQs in NB children.
I can’t explain why this happened to our precious children. When Kimi first got diagnosed, I remember thinking: “It’s NOT FAIR! My daughter doesn’t DESERVE THIS!” Then I looked around the hospital rooms and saw the little babies getting chemo, the children missing limbs, the teens with no hair at an age when they are so sensitive about their looks and missing out on high school and all the activities that go along with that. I said to myself: “So which of these kids DOES deserve it? The really naughty ones?”
I believe that we choose the challenges we will face in life and that we choose our parents. I am honored that Kimi chose me to help her face this incredible challenge in her life. I know that the experience will change her forever. I told someone that writing about her cancer treatment for her college essay will get her into Harvard.
This challenge is something that we also chose to face in this lifetime. There is nothing worse than watching your baby suffer. Than seeing the perfect little body that you created in your own body be damaged by toxic chemicals and medical procedures. But we will grow spiritually from this experience. We are Mommy Warriors and WE WILL PREVAIL!
I meant what I said about calling me anytime. I only sleep about 4-5 hours and don’t mind if you wake me up because I am a good napper. I also only have custody of my daughter half the time.
I am praying for you and Ronan. Stay strong. You can do this. Ronan can do this. It is all going to be fine. I know the transplant sounds hard, but remember how hard everything sounded, and then we got used to it. The transplant will be the same way.
Mom to Kimi, dx NB4 9/21/11
You’ve probably read or saw the movie Eat, Pray, Love. Try to flip a switch in your mind for the transplant and look at is as your own personal ashram, a place of solace and peace and comfort. If you can look at it for exactly what it is and appreciate the fact that you can’t and don’t have any thing to do except be with Ronan fully for the weeks you are there, you can embrace it.
In a twisted way, it’s an amazing thing because most people never have the opportunity to simply, “be” . The forced isolation because of Ronan’s disease can be a blessing for you. And the good news too, he’ll remember very little of any of this. Wil hardly remembers and he was year older.
That picture just reminded me of the song Johnny Cash sang..and the lyrics went..”How high is the water? Two feet high and rising…”
So hang in there … but we do get tired of hearing the same old things…can’t help it…
During my cancer experience and even now it never stops amazing me how much of our freedom is taken away..and you my dear are doing the right thing by counting your blessings..no matter what they are…proud of you! The pressure you are under is going to result in a beautiful diamond…God be with you!
You make perfect sense to me 🙂 I love to hear about great progress! I knew there wouldn’t be much Neuroblastoma left. He’s doing so good kicking cancer’s butt.
Isolation is intense. When I was at St. Jude we had to dress up like space men to go in an isolation room. But they were the funnest because the kids were sooo excited to see someone new and get crafts or toys. (And they were all individually packaged and never opened before, of course.) Thinking about you all the time. Keep staying strong! Praying for Ro everyday. You’re doing such a great job.
COLE Prayer Team
It was so nice to meet you and Ronan! Great news on the prelim results. Sending prayers for a smooth transplant-you will make it through one day at a time-sometimes one hour at a time. Please call me or email if you need anything.
Chrisie and Ava
Sending all of the love that is available (that’s a lot!) May you feel how held you are by the divine, in all of its forms. All love, Bhakti Das (from Down Under…Oz…land of the Kangaroo!)
Please know that I pray for you, Ronan, and your whole family each day. I was led to your site through LaylaGrace.org and check in each day to see how you are doing. Your positivity with each obstacle you are facing blows me away and I am so inspired by you as a mom. Not to sound creepy, but know that you have strangers rooting for Ronan in Southern New Jersey (and probably all over). You are in my constant prayers.