If you are going to the game, come see me before you go into the stadium. I will be outside by the Will call booth. We have tee shirts for sale. 20 dollars for adults, 10 for kiddos! Hope to see you all there!
Tomorrow at the baseball game, we will be selling Rockstar Ronan shirts! They arrived today and my sweet friend Jen was kind enough to bring them by. It was going to be too big of an operation to bring them into the ballpark to sell…. legality issues…. After talking with Jen tonight, we decided it will just be easier to pick a spot outside of the ball park to sell the shirts. Location to be announced tomorrow morning. My brain has shut off for the night so coming up with an answer is not possible. The shirts turned out so cute. We really threw them together last-minute and a HUGE thanks to Tim Haines at Pinnacle Prints for working with us and getting the shirts to us so quickly. So, more on this tomorrow.
My friend, Charisma Lee Carpenter, flew out to Toronto today to help raise awareness for Ronan and childhood cancer. There is going to be a ton of press there and she is so excited to be helping to raise awareness at the Rally for Kids with cancer. I am in awe of her and how proactive she is being. TRUE friendship has no limits or boundaries and she would go to the end of the earth for us. I am so thankful to have her in my life. She is also another one of those angels walking around on earth. Not to mention one of the kindest souls I have ever met.
Tomorrow is a big day in my hometown. The New Hopes “Cruise for the Cure” is a huge fundraiser and this year they have chosen to honor Ronan. I am so touched by this and all who are involved. That’s the nice thing about coming from a small town. Everyone, even the people you don’t know well, when something like this happens, you automatically become family. The support my parents are getting brings me so much comfort and peace. I can’t be there to take care of them and tell them it’s going to be o.k… that Ronan is going to be o.k… thank you all for doing it for me. My mom will not be able to be at the car show. She is so upset but she has a huge wedding event that she has had scheduled for months and will be there catering it. My step-dad, brother, stepsister, Connie, and my niece, Jadyn, will be there though. I wish I could be there so badly to help out. Thank you to everyone who has made this possible. I promise when we are back there next summer, I will give each and every one of you the biggest hug and smile you’ve ever seen in your life:) And Ronan too:)
I am going to try and get a little sleep now. Love and blessings to all of you!!
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.
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.
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;)
I feel like the Tasmanian devil today. It’s been a whirlwind of zipping around my house getting things done, researching on the internet, talking to people at CHOP in Philly, Sloane-Kettering, homework with the boys, getting Quinny to the doctor(thankfully Woody took him) for a sinus infection, and taking care of Ronan. A busy day to say the least. I’m trying not to second guess anything, but I want to make sure we have all of our bases covered. I can’t look back at anything we are doing with Ronan and have any regrets. I really do feel like we are in good hands at PCH, but I still have to put my feelers out there to be sure. I am just feeling unsettled tonight. I want proof that what we are doing is working. I am trying to be patient but it is becoming harder and harder everyday. I feel like every success story I am hearing involves Sloan-Kettering. But it is so hard for me to imagine taking Ronan away from our home and his brothers. We will cross that bridge when we come to it… I just need to sit back and settle down. That is actually bullshit. Sitting back and settling down is not going to fly anymore. I am his mother, he is my baby boy, I need to know everything possible is being done to cure him of this disease. For good. In the meantime, I will be doing everything and anything I can to reassure myself that we have made the right decision. I feel a little better knowing that Woody has been in contact with Dr. Kushner at Sloan. He has been so great about talking things out with Woody. So thankful for that. I can’t even get Dr. Maris at CHOP to return my phone call or email me back. I will be sending him Ronan’s info as well.
Ronan had a good day today but I can tell his levels are starting to drop. He was a little less active and pretty clingy. He slept a lot today and this evening he had a slight fever. It’s gone now but I will be watching him like a hawk tonight. We go into the clinic tomorrow morning to have his blood levels checked and his Broviac dressing changed. UGH. We had a lot of quiet time together today and tonight. Liam and Quinn had basketball practice so Ronan and I played outside while they were gone. Well, not so much as played, but sat in a chair and enjoyed the cooler weather. We watched the clouds roll in around us and I prayed out loud with Ronan for him to be healed, forever. Then it started to rain on us. We sat and let the rain drops fall and I told him they were washing away his owies. He agreed with me and giggled. We watched “Earth” again tonight and after about 20 minutes he asked me to turn it off because he was tired and wanted to go to sleep. He is out like a light now getting the rest that he needs. We have a busy day tomorrow at the clinic. I’m beyond beat but I know that I won’t get much sleep tonight. One day I will enjoy my sleep again, but not now. Too many nightmares and to many things to keep me up at night. Goodnight to all of our angels out there. I hope to see some of you at the baseball game on Saturday!!
Ronan is napping. I was trying to nap with him, but then Woody came home. We had a little pow wow session about what the next steps are. He has been on the phone with the hospital Sloan-Kettering in New York City for the past half an hour. Depending on the next set of scans that Ronan has, which should be coming up soon… I will find out tomorrow when he will be scheduled to have them….we have to make some decisions. We are on our knees praying that the scans come back and show that the chemo is working and the cancer is disappearing. As Woody said today, they have to be working.. look how perfect he looks. I couldn’t agree more. If the scans come back and show that the chemo is not working, we have decided we will take him to New York. We won’t have a choice. Woody told me today that I may have to stay for a year or two in New York with Ronan. He wanted to make sure I could handle that. The thought of leaving my big boys, hubby and home made my stomach turn. But of course I would go in a heartbeat if it meant saving our baby boy. If what we are doing is not killing his cancer, we will have to go a different route with his treatment. I am trying not to think that way.. but we have to have all our ducks in a row. Regardless of staying here or not, we are almost positive we will be taking Ronan to Sloan for his surgery. Dr. La Quaglia, the surgeon of the angels(his nickname) has agreed to operate on Ronan to try to remove the mass out of his abdomen. Our plan is to try to shrink everything with the chemo, and hopefully we can shrink it to where the surgery won’t be so complicated. I will be working on getting all of Ronan’s information to them by next week. They want to see everything. It’s scary to think about the future now; everything is so uncertain.
Ronan is hitting his low point today. I can tell by the way he is acting. He is a little less active today. Not much, but a little. He is sleeping so hard right now too. His little body is working overtime. I will never stop saying the words, it’s not fair. It’s not fair and it will never be fair and nobody will ever be able to fix this. We will never get this time back as a family and this pain will never be forgotten. Stupid cancer.
P.S. The hoarding pile, as Woody likes to call it, is gone:) Check mark, please:)
There will be a fundraiser this Saturday from 9-3 on Commerce for Ronan. The New Hope Car Cruise is supporting The Ronan Thompson Foundation this year. My parents will be there and we could use all the support we can get, even if it’s just to give my mom a hug. A huge thanks to everyone who made this possible. Words cannot express how touched I am.
I have nobody to compare Ronan to, really. But is this how every child with stage 4 cancer acts?? Running around all day long. Eating like a horse. Laughing and acting like he is the happiest child on the planet. Having adult conversations with me and saying things like,”I love my brothers so much!” He seems as healthy as ever which is a big reason Woody is holding up so well. When you see the way Ronan is, you can’t help but think that there is no way this disease will win. Nights are hard for me. Watching Ronan sleep tears me up inside because I know what is going on inside his body. He looks so peaceful, sweet and vulnerable. Days are easier because I get to watch him running around and acting like himself. Nights are awful. There is nothing good about the nights anymore. When and if I fall asleep, my dreams are filled with horrific nightmares. They always involve Ronan. I try to think of happy things before I fall asleep but nothing seems to work. I can’t escape my reality, even in my dreams.
Today, Ronan and I spent the day at home. We kept busy playing all day long. He was upset that Liam and Quinn were at school and kept saying he wanted them home. I tried to explain to him the reason that Liam and Quinn had to go to school all day but he wasn’t having it. He just wanted them home to play with him. We spent the rest of the day cooking beef barley soup out of the chemotherapy cook book that I bought. It was one of the recipes in it. Ronan ate a huge dinner of gnocchi and beef barley soup. I swear that kid is eating more than me nowadays. His appetite is huge.
Tonight, I took my sweet friend, Lindsey to dinner for her birthday. I always love spending time with her. We had a quiet dinner and a few laughs. It was nice to get out of the house for an hour after being home all day. I am trying to get caught up on everything that I have piling up. Being at the clinic all last week and not getting anything done around the house is taking a toll. Tonight while I was at dinner, I came home to a big pile of stuff on my side of the bed, on the floor. Woody is calling it my “hoarding pile.” He took the liberty of taking everything that has been strown about the house and put it in a big huge pile for me. I have been cracking up about it all night. It’s driving him crazy. He keeps saying he knows my hoarding pile is just going to get bigger and bigger. It’s already driving me crazy so the hoarding pile will have to be taken care of tomorrow. I’m sure it will take me all day to go through everything properly and put it in it’s right place. I love that I have a plan for tomorrow though. I’m a girl who loves a plan:)
After I got home from dinner I tried to spend some more time with Liam and Quinn. I miss my buddies so much. There is not enough time in the day anymore. They have grown up so much in this past month and I feel like I am missing out on it. Quinn has been complaining of headaches at night. I will have to take him to the doctor this week to have him checked out. Woody and I both think it’s more due to him being so worried about his baby brother. He wears his heart on his sleeve and it is easy to tell what he is thinking and feeling. Before Ronan fell asleep tonight we cuddled and watched the BBC series, “Earth.” He was loving it and was cracking up at all the animals. I covered up his eyes for the scary parts like the great white eating the seal. Little guy does not need to see that. He fell asleep laughing, smiling, and holding my hand. Ronan is still feeling well. I am pray every night that he wakes up in the morning and is feeling great. All this will be so much easier to go through the less Ronan has to suffer. Sweet baby boy.
We had a busy day today and I am exhausted. What was supposed to be a quick little visit to the clinic, turned out to be a 4 hour ordeal. We had to wait over at the hospital forever to get Ronan’s EKJ (heart test) and his chest x-ray. This is standard protocol before they do the stem cell harvest. I kept bothering the woman at the desk.. but that only seemed to annoy her and did nothing to speed up the process. For some reason, they didn’t have our appointment in the books. I made the woman listen to the voicemail on my phone to prove to her, we in fact, did have an appointment. It made me nervous waiting in the main waiting room with everybody else so Ronan and I went into another sitting room where nobody else was around. He was a trooper and was so happy to be out of the house. As we were walking to go to the bathroom, I could see a mom and her little boy eyeing us. He was older than Ronan and I could tell he was a cancer patient due to his hair falling out or growing back. She came up to me and patted me on the shoulder and said, “Hang in there. We made it to the other side and so will you.” I had my bravest face on today but I instantly lost it as soon as those words came out of her mouth. I just gave her a weak smile and picked Ronan up and held him for a long time. Soon after that our name was called and we went back for his EKG. He was so nervous even though I kept assuring him that there were no owies today. The test took about 5 minutes and then we went off for the x-ray. He was hesitant to get up on the cold table and to hold still for his x-ray picture. I kept telling him he had to hold still because as much as we love Dr. Maze; we did not want to see him today. I did not want Ronan to have to be sedated for something as simple as an x-ray. The little guy is getting used to all of this and held perfectly still. That is something he would have never done a month ago. I am so proud of him. We then walked over to the clinic and we had his blood checked and Dr. Eshan and Dr. Wood came to visit us. Dr. Wood mainly wanted to check on us and to see how my big boys’ weekend went. He went to Wisconsin for undergrad so he really wanted to talk football talk. I think he was sad that my father in law wasn’t there. They have become pretty good football talking buddies. We got out of the clinic and I could tell Ronan was wiped out. I put him in the car and he soon fell asleep. When we got home, I put him in my bed and went to sleep with him. I was as exhausted as he was for some reason! We took a good nap and woke up to the twins and Woody being home. That was the best thing in the world to wake up to.
I ran to the grocery store to stock up on food for the week. It was nice to do something normal today but I have the hardest time focusing in the store. I get sidetracked and my mind wanders so easily. It’s like some alien has taken over my body because this is not my normal self. I’ll have to come up with an alter ego name, I guess. Beyonce has an alter ego name, Sasha Fierce… I’ll have to think of something better that that. The fact that I even know that useless knowledge scares me a little bit. Tricia would be proud; she loves her Beyonce. O.K… back on track! The rest of the night was spent watching football and playing. I got a quick visit from my friend, Danielle. She brought me her homemade to die for applesauce and a picture she painted for us. I can hardy even talk about it because I’ll start to cry. It was so thoughtful and heartfelt. I’ll post a picture of it on here for you all to see. Ronan is still feeling great and is so happy to have his brothers home. I am hoping and praying that he continues to feel this way through out the week and weekend. No hospital visits, PLEASE!!
What’s different now? Everything. Nothing is the same and it’s like living in a foreign country, stumbling around in the dark, or starting completely over with your life. We are all adjusting to this new life. It’s not fun and I try to just take it day by day, but it’s hard not to worry or think about what the future holds. All I know is my future cannot exist without Ronan. I know I am a strong woman, but I could not survive that. We had such a perfect plan for our life and I’ve worked so hard to get myself to where I am today. So hard. I did everything right. I worked my butt off in college, fell madly in love with the most amazing man put on this planet, watched him chase his career dreams and supported him, had 3 beautiful kids together. We had a plan. A really good plan. Now our plan is out the window. Now our days are filled with the unknown and that is scary. One of the reasons I loved my life so much was that is was safe and secure. That’s gone too. So now we just sit back, watch, and pray for good days and for a miracle to happen because that is all we can do. Life has thrown us the biggest curve ball possible and we have no control over it. I think that is one of the hardest parts for Woody. He has always been so in control of his life and the decisions in it and now he has none. He has a hard time with that. While the boys’ and I were in Washington for the summer, my mom, Ronan and I were at dinner and I remember telling my mom how lucky I was to be married to Woody. How after being with someone for 11 years the fact that he still takes the time to text message me 5 times a day just to tell me little things like he how much he loves me, how great of a wife I am, how lucky he is to be married to me….. still blew me away. We sat and had a conversation about how in this day in age, a love like ours in rare and hard to find. I will never doubt that he will always feel that way about me, but now the sweet text messages have stopped because all that matters is saving our son and we are consumed by it. I miss little things like that; the way that we had nothing to worry about and life was so simple, easy, and fun. I just want to be able to take Ronan to the grocery store with me. I would give anything to have him running up and down the aisles or fighting with me about sitting in the cart. It’s funny going to the store now and watch the moms with their little one’s. They are usually screaming at them to sit down or trying to get out of there as fast as possible. I used to be that mom. I miss being that mom.
Today, I got out of the house for a few hours. Woody’s cousin’s wife, Kristen, and my friend:) came a got me out of the house for a bit. We went over to ZinBurger for a bite to eat and a beer. Yeah, I totally had a beer in the middle of the day. So weird and out of character for me since I never even drink, but it felt good. We sat and enjoyed our food, beer, some football on T.V. and talked. Real talk too. It’s nice with Kristen because I never have to sugar coat anything(not that I would anyway) and she is the same way with me. She tells it like it is and I’ve always respected that about her. We then went and saw a great, lighthearted movie, “Easy A.” It was exactly what I needed today. Funny, cute, and a bit raunchy.
I’ve been reading up on nutrition and trying to help the side effects of chemo. There is a lot to learn but I am frustrated with the lack of information on kids and cancer and chemo on the internet. I’ve been looking for books but am having a hard time finding much. I’m starting to get overwhelmed, but I am determined to make sure that Ronan is eating as healthy as possible. We eat healthy anyway… but I’ve got to up his calories and I am being crazy about his organic food. Most of the stuff we eat is organic, but I am also trying to cut out any crap and restrict his sugar intake as much as possible.
This weekend has mostly been spent building Lego’s with our little man. He loves to help build them and I know it was one of Woody’s favorite things to do as a kid. Woody and Ronan are building some Star Wars ship now and Woody just yelled over to me, “How’s your life, mom?” My reply was, “Perfect.”