Another one of those little signs…

After a great day, Ronan is still feeling well. He is as feisty and spunky as ever. He spent the night trying to beat up his brothers. I got out of the house for my follow-up eye appointment and then I went off to my hair appointment after. Or so I thought. I got to my salon and it turns out my appointment is not until next Thursday. I’m not exaggerating about my brain not working properly. One of my alter ego names is going have to be, Franny Forgetful Pants. One of my mom’s nicknames for me has always been Fancy Pants. I’m going to have to change it now. I can’t keep track of anything and I have yet to go out and get myself a day planner to write everything down in. My iPhone just isn’t cutting it. Also, I shattered my iPhone screen tonight. When it happened Ronan goes, “Nice one, mom.” He made me laugh so hard by saying that, that I didn’t even have time to get mad at myself. I’m telling you, I cannot be trusted with anything. Anyway, after I got to my wrong date hair appointment, I headed to the grocery store. I was on my way there and still thinking about Sloan-Kettering. It has been on my mind all day long. We have already decided that Woody is heading out there to check it out. As I was thinking to myself, I decided that I wanted to ask our dear friends, the Kotaliks, if E.J. would consider flying out with Woody to New York to meet with the doctors. I hesitated but had to follow my heart so I sent Karen a text around 6 that said something on the lines of, I have a huge favor to ask of you… would E.J. consider going out to Sloan with Woody? Not an hour later I got a text back from Karen saying that they were wondering how to offer for one of them to go with Woody and that God had answered their prayers. Karen had been on the phone with a good friend of hers about an hour before my text and was asking her advice on how to offer their help, without making us think we were not capable of making this decision on our own. Then, she received my text. I called Karen and instantly started crying. Talk about somebody listening and making sure we are one hundred percent connected to each other. Karen told me tonight, we are family, we are not alone in this fight, and between E.J. and Woody, no stone will be left unturned. I feel so much more confident in our decision to follow up on this now that E.J. has agreed to go with Wood. The two of them will come back with the answers; I have complete faith in that. It would pointless for me to go…Plus, I couldn’t leave Ronan. E.J. will be the perfect partner, another set of ears and somebody who will play devils advocate with everything the doctors say. Plus, his brilliant mind won’t hurt at all:)We are so lucky to have them with us on this journey. I don’t know what we would do without them. Our entire family feels this way. Karen is Mimi’s best friend, Liam and Quinn’s Godmother, and our angel with a set of wings. I swear she has them. If you remember at the beginning of my blog, they are two of the people we called late in the night to help us decide on which treatment we were going to go with at Phoenix Children’s Hospital. They have been with us from the beginning of all of this.

While I was at Fry’s tonight and as I was checking out I noticed a set of donation flyers for Komen at the register. The point of these are so people can donate money to breast cancer and they have a bar code on the bottom so the checkers can just scan them and the money you donate goes to the Susan G. Komen Foundation. I asked the guy checking me out about it and he didn’t know a thing. I then asked to speak with a manager and asked him how they decide on the foundation they are going to support. He said he wasn’t really sure, but he gave me the number for the corporate office. I am going to try to call them in the next few days. Why wouldn’t they support a month for Childhood Cancer Awareness?? It gets such little funding. The more I have researched, the more I am blown away. Cancer is the number one killer of children; yet you rarely hear about it. Before all of this, I had not even given it a thought. Something has to change. Could you imagine if Oprah would listen to everyone about this and do a show? She could make such a difference on spreading the word and awareness. Somebody has got to listen. All children deserve to be fought for. My Ronan deserves to be fought for. This is not something that we can just sweep under the rug.

Tomorrow we have a big, exciting day. Not really, but I like to pretend like we do. It helps me get through the day a little better. Trish is coming to visit though. She has been out of town for a week and we are dying to see her. The whole time she was gone, she was so panicked about being away from us that she was having nightmares about it. When she called me 2 nights ago to tell me about her anxiety and her bad dreams I told her to knock it off. She has to have a life still and to be able to enjoy it. But talk about a true friend. Someone that even when she is away, I know she is thinking of us all day and night. We can’t wait to see her tomorrow. I may have to get her to go with me for a little car ride to the Mac store so I can get my phone fixed and she can wait in the car with Ronan. I am sure Ronan will be thrilled just to get out of the house for a ride in the car. My sweet little pup.

Goodnight to all of you. Thank you for following us, praying for us, and loving us. You make us all stronger.

Clinic day

We had a great day at the clinic. Ronan’s levels are still o.k! They have dropped  a little, as to be expected, but they should be on the up and up by this weekend. Hoping we will be able to keep him home with no signs of fever to send us in to the hospital. Another weekend at home is what we are hoping for. We met with a new doctor today and I liked him a lot. He is part of the Oncology team… a bit younger than the other doctors we have seen (yes, married. I checked his ring finger, Sarah;). He seemed very knowledgable and passionate about what he is doing and the approach we are taking. He 110% believes in it. Woody interrogated him about everything from the treatments we are doing, to the statistics on it, to Slone- Kettering. He had an answer for everything. Our social worker, Marsha, was in the room and after the doctor left she told Woody she very impressed with the questions he was asking. That’s my brilliant hubby for you. I am so thankful for him and his amazing mind. I couldn’t have a better man standing by my side during all of this. We have decided that Woody is going to fly out to New York in the next few weeks to meet with the doctors at Sloan. A second opinion never hurt anyone. I finally heard back from Dr. Maris at CHOP. This is what he said:

Dear Ms. Thompson,

We are happy to provide a consultation, but this should be arranged through your medical team. Please know that there are national standards for approaching neuroblastoma, and it is very likely that Phoenix Children’s (which is a great place) is doing exactly what we would do here. Please feel free to have your physician contact myself or Dr. Mosse directly.

Sincerely,
jmm
John M. Maris, MD
Giulio D’Angio Chair in Neuroblastoma Research
Professor of Pediatrics
Chief, Division of Oncology
Director, Center for Childhood Cancer Research
Children’s Hospital of Philadelphia
University of Pennsylvania School of Medicine

I will be talking to our doctors to have them follow up with him. A third opinion would be great as well. We had such little time to make our decision and although in my gut I do feel like we made the right one… I feel like in order to be sure, we need to hear from some other experts.

Ronan is playing away and is glad to be home. We had a his broviac dressing change and it was not that bad. He is starting to trust Sharon, our nurse, a little more now. We are very excited to see my mom on Sunday. Ronan keeps telling me he wants her, NOW! He is very excited about her coming and can’t wait to see all the Star Wars things she is going to bring him:) I also wanted to tell everybody who has sent gifts and cards, thank you. We have started putting them away in Ronan’s closet so we are not so overwhelmed by the toys. We plan to let Ronan open them while we are in our 20-60 days of isolation during his stem cell transplant. All the new things to play with will help to pass the time in our “cell.”

I am going to try to get my little seal to nap now. He is full of such spunk and energy but really needs his rest. Wish me luck;)