Empire State of Mind

 

I just spent the last 48 hours with Quinn and it was blissful. We woke up yesterday and I asked him what he wanted to do, as we had the whole day to spend together. He chose to go to The Empire State Building so we got ready for our adventure of the day. We stopped by Sloan before  as we went to say hello to my childhood friend, Jennifer, who came by to donate her platelets to Ronan. It was so nice to see her and introduce her to Quinn. We stayed for a little over an hour until she was ready to get started. We then headed out and grabbed a Taxi. It was a super busy Saturday there, as expected, but Quinn did so well and waited patiently to get to the top of the building. Once we were at the top, he was a little scared to go outside. It is so high up…. even made me a little nervous. I coaxed him into going outside and it was absolutely breathtaking. We stayed for a good hour and enjoyed the sights. Once we were safely back on the ground we hailed a cab and went and walked about SoHo and had dinner together. It was a perfect day with a perfect little boy. I bought him a journal at the Paul Frank store and he was so excited. He sat at dinner and wrote all about our day. It was adorable. After we finished dinner, we headed back to the RMH and then to the hospital to see Woody and Ronan. They opened up the playroom for us again so we could all hang out together. We stayed for about an hour and then Quinn and I returned home while Woody stayed at the hospital another night. I am so thankful that he spent so much time with Ronan while I had some one on one time with Quinn. The break from the hospital was nice as well.

This afternoon Quinn and I went to Delizia’s for his pizza (surprise, surprise) We ordered some to go for Woody and Ronan so we could bring it to them and let Quinn see Ronan before he and Woody got on their plane to go back to Phoenix. We spent some time in the playroom together and soon it was time for Wood and Quinn to leave. I tried to not cry but it was impossible with seeing how sad Ronan was. His little lip quivered and he buried his head in his knees. We said our goodbyes and I walked back with Ronan to his room. I sat and held him and quietly explained how Quinn and Dad would be back soon. My words didn’t matter or stop his little tears from falling. I let him cry and told him it was o.k. to be sad but it was my job to make him feel better. After he settled down, I talked him into taking a sponge bath. I filled up a tub of water and he ended up putting all of his Star Wars guys in it to bathe them before he took his bath. This occupied him for a good hour. We spent all the afternoon doing silly things like that and he finally laid down to take a little rest. He seems to be feeling better but his ANC is still at 0. Boo.

While Ronan was napping, my phone rang with a number I did not know, but I picked it up anyway. So happy I did. It was my sweet Charisma calling all the way from Australia where she is working. I was so surprised to hear her voice and so happy she called. She hasn’t been able to read my blog in a few days and just wanted an update and to see how we were doing. I updated her on some things and vise versa. She asked what our plan was and I told her that as of now, it was impossible to have one. We will have more of a plan once the results of Ronan’s scans on the 13 and 14th of April, come back. We will then decide what direction to move forward with all of this. Until then, we will just sit and wait and take things day by day. We will make the best out of each day that we have and take all the positives that we can get. It was good to talk to my friend and I told her to try to get some work in NYC so she could come and visit us. I miss her dearly.

My mom is taking the Red-Eye out tonight and arrives at 6 a.m. EST. I told her to just go to the RMH, get some rest, and we would call her when we got up so she can head over to the hospital. We can’t wait to see her and it will be so nice to have her here and her help. Now, if we could just get out of this hospital. I think we’ve been here for almost 2 weeks now…. without counting our 24 hours of freedom we had. Praying for his ANC to come up, very, very, soon. This hospital life is getting old for everybody… especially my little man.

For everyone who has been asking where you can mail things to I will give you the address to the RMH. It is

405 East 73rd Street, New York, NY 10021

Just address it to Woody, Maya or Ronan Thompson. You all are the sweetest friends/little rockstar fans/family. Thank you for all the well wishes, cards, and surprises you have sent us. Brings many smiles to our faces. I hope you had a lovely weekend. I’m going to cuddle up with my little bug now and try to get some sleep with him. Love to you all!!

xoxo

The worst of times are the best of times

Last night my very sweet friend, Ed, hooked our family up with 5 tickets to the New York Knicks game and floor passes. It was our intention to take Ronan, but with him inpatient at Sloan, there was no chance of that happening. Mimi and Papa offered to come and sit with Ronan so Liam, Quinn, Woody and I could all go to the game. I felt a little guilty leaving Ronan behind, but I knew how important it was for Liam and Quinn to spend some time with us. The four of us hopped on the Subway and headed downtown to the game. On our walk there, I caught myself getting really upset about not having Ronan healthy and happy and with us. It seemed so weird it just being the four of us. That was not how our family was meant to be. Woody could tell I was getting upset as I was being really quiet as I tend to do when something is bothering me. He kept looking back and asking if I was o.k. I put on my best face and told him I was. I gave myself a little pep talk about how important this was to Liam and Quinn and how I needed to try to enjoy the night as much as possible.

Once we arrived to the game, someone met us and we were taken down on the floor to watch the Knicks warm up. It was beyond awesome. We sat for a good hour and watched the teams practice and then went up to the suite where we were sitting. Before I knew it, I was having the best time. Quinn and Liam were so into the game and it was a great second half. It went into over time and the Knicks ended up winning. To my friend, Ed, who set this all up…. thank you from the bottom of my heart. You have no idea how much the 4 of us needed this time together as a family. It has been a long time since we have done something like that together. It was a great few hours of enjoying each other and something we will never forget. You have created diehard Knicks fans in both myself and Quinn.

Woody slept at the hospital last night and I stayed at RMH with Quinn. Liam went back and stayed with Mimi and Papa. The 3 of them left this afternoon back to Phoenix. Sad to see them go as we will miss them very much. Quinn is still here and has been hanging out with Woody all day while he works. I hate that he cannot be at the hospital with us and I am hoping Ronan will be discharged this week. Dr. Kushner came to see us this afternoon and was very pleased with how well Ronan is moving around. He is using his little arm more and more so that is a very good sign. We talked about the “plan” and as of now we are planning on doing scans again around April 11th. Depending on what they show, we may do another round of this chemo or go on to the NK-Cell trial. The most important thing that matters to me right now is keeping Ronan out of pain. It seems as if the radiation and chemo are doing the trick as far as keeping that under control. I find myself being able to breathe a little easier everyday as his pain becomes less and less.

This week we are focusing on getting Ronan out of here (come on ANC counts!) and spending time with Quinn. He played in the playroom of the RMH house all day while Woody worked. They had some volunteers doing mad science stuff and he had a blast. I am going to be so sad when he leaves to go back to Phoenix with Woody. A part of me really wants him to just stay here. I can’t wait for school to be out so we can have both of the boys’ coming out here more often and for a longer amount of time. It is so good for Ronan’s spirits. He completely lights up when they are around.

I am sleeping at the hospital tonight and Woody and Quinn are off at some movie. Ronan has been playing away with his Star Wars guys and I finally got him to eat tonight. Victory! He ate an entire Peanut Butter and Jelly sandwich and some Mandarin Oranges. His little appetite has been poor for a good week now. I can tell he is feeling better than he has in a while tonight due to the giggles and feistiness he has been displaying. I called him feisty tonight and he looked at me and goes, “Stop calling me spicy! I’m not spicy!” His little voice cracks me up. I spent the rest of tonight telling him stories and singing him songs. We talked a lot about all the people who are going to visit him in New York. I named off everyone under the sun and he kept saying, “Who else, mom?” I love my little conversations with my almost 4-year-old. I love you to the moon and back my little man!!!! That boy will never understand how much happiness he brings me with something as simple as his smile. It’s the most beautiful thing in the world.

My mom is taking the Red-Eye here on Sunday because Woody and Quinn are leaving. I know I am going to be a mess when Wood leaves. He is my rock and I already miss him. I love having him here with us so much. I mentioned before that we do really well in this city together. Not sure why, but we do. Maybe it’s because we are fully focused on Ronan together, without having many distractions. Makes me feel like we can do anything together… including getting our son well. My mom will stay until Friday….. I think. Tricia is also flying in next Wednesday-Sunday. Can’t wait for them both to be here with me. Ronan is very excited as well. My mom has never been to New York so I am hoping to get her and Tricia tickets to a Broadway show so she can experience something New York. I know the only thing she cares about is spending time with us, but I would like to let her enjoy New York and what it’s all about, even if it’s just for a few hours.

That is the update for tonight. I’m a little homesick but trying not to think about all the things I miss in Phoenix. It’s not things… it’s once again just my old life that I crave and yearn for. The only thing that is of importance which is being at home with Woody and my 3 healthy boys. I want that so badly that I can taste it. That’s why I have to keep pushing forward through all of this; so I can get us back there someday. For good. I can see it, I just can’t touch it yet….but I know it’s there just waiting for us. I will never give up on this baby boy of ours and he is never going to give up on me. He promised me tonight that he will stay with me forever. I refuse to let him break that promise to me. I will hold him to that until the day I die.

Miss you all very much. Thank you to everyone who has been checking in on us and all of your offers to help. If any of you that are reading this and are in New York and you want to help us out in any way, I thought of an amazing way to do so. You can donate blood or platelets to Ronan. All the information is down below and it would mean so much to us. And to all of you who aren’t in New York but wherever else you live, if you get the chance, please donate. These two things have saved my son’s life countless times. It is pretty easy to do, fast, and painless. Every time Ronan gets a bag of blood or platelets, I kiss the bag as I like to think I’m kissing the person who donated it. What an amazing thing to be able to do in this day and age and it helps so many people. Think of Ronan when you are doing it and think of all the other lives you are saving. Such a selfless act, and so simple and easy.

Sweetest dreams to all of my lovelies out there. Thank you for your outpouring support and love. Hugs and Kisses from NYC. G’nite!

xoxoxo

pastedGraphic.pdf RONAN THOMPSON Needs Blood & Platelets

Ronan is currently a patient at Memorial Sloan-Kettering Cancer Center in New York City. His treatment for Neuroblastoma requires regular blood and platelet transfusions.

Ronan would deeply appreciate your donation of blood and/or platelets and requests you ask others you know to donate. Donations not used by Ronan will be released for use by other patients many of whom are children.

To benefit Ronan Thompson all designated donations must be made in the Blood Donor Room of Memorial Sloan-Kettering Cancer Center

Please visit www.mskcc.org/blooddonations for complete information about donor eligibility and the donation process for blood or platelets.

For answers to questions and to schedule an appointment that is convenient for you please Contact:

Joe Licata – 212-639-8177

Manager, Blood Donor Program

licataj@mskcc.org

Blood Donor Room – 212-639-7648

1250 First Avenue (between 67th/68th Streets) NYC – Schwartz Building lobby

Open Every Day

Fri Sat Sun Mon 8:30am – 3:00pm

Tues Wed Th 8:30am – 7:00pm

The process for donating whole blood takes approximately1hour

The process for donating platelets takes about 2 ½ hours.

Appointments are necessary- All blood types are acceptable

FREE Donor Parking –

-Somerset Parking Garage, 1365 York Avenue –entrance on NW corner of 72nd Street

Sometimes it takes a really good fall to know where you stand

Where have I been the past 24 hours? Dead. Or the closest I’ve ever felt like dying. Yesterday, Dr. Kushner came to see us and we got the news that Ronan’s bone marrow is now longer clear of Neuroblastoma. All 4 sights from his scans a couple of weeks ago here are positive which explains all of the activity on his MIBG scan. The scans at PCH came back as clear… but that was 6 weeks ago. The most recent scans here show that his bone marrow is positive again which means that his cancer is spreading and we have to get it under control. So, I spent all of yesterday in a thick fog with my head spinning. I made it though the day while Woody worked but by the time he returned to the hospital, I was a complete mess. I spent much of the evening sneaking out of the room while Ronan slept…, throwing up. At one point, I found myself huddled up on the floor rocking back and fourth with my head spinning so quickly I felt like I was going to pass out. It was the first time in my life that I could not get myself back under control. I was sweating, crying, and could not even form a thought. My sense of smell was so heightened, that I couldn’t deal with any of the smells in the hospital. The smell of food and cleaning products combined were enough to make me want to check myself into the loony bin. When Woody returned for the night I told him I had to leave, that I needed some air. I somehow managed to get myself back to the RMH and passed out on the spot. I woke up around 11 p.m. with my raging headache that refused to go away. I got in the shower, dressed and walked down the street to the store to get some Coconut Water to try to rehydrate myself and take my Advil. I returned to the RMH still a wreck but forced myself to take my Ambien(which is the only way I sleep now) and fell asleep with my head still pounding and the thoughts consuming me that I cannot do this anymore, I cannot survive this, I cannot go on.

I woke up this morning, eyes bloodshot and red, still feeling defeated and as if I wanted to die. I cannot pick up my phone at this point to talk to anyone… but this morning when my friend, Ed called, I instantly knew I had to answer it. I was crying, I was still a mess and I didn’t hide it. I was on the floor of my bathroom as I listened to him tell me how he had pulled some strings and that the New York Knicks would like to host us at a basketball game. Did I forget to mention that my in-laws are flying out here on a whim with Liam and Quinn today? They are. We need them. Through my tears, I told Ed how excited the boys’ would be, how happy that was going to make them. My life now is all about squeezing every ounce of happiness for Liam, Quinn and Ronan, that we can from it. After I listened to Ed tell me how everything was going to be o.k., how I was a tough bad ass chick and I could do this it suddenly became very clear to me. I can do this and I will do this… this is not the end. Not even close. I can’t give up no matter how badly cancer is trying to win. I will keep fighting for my family, for my friends, and most importantly, for Ronan.

I picked myself up off the bathroom floor, showered, and headed to Starbucks before I returned to Sloan. On my walk there, I found myself getting stronger again. I texted my Mr. Sparkly eyes who is so amazingly helping me through all of this, even through all of his worry and pain for us. I told him about my breakdown, and how I took all of this morning to think about things as clearly as I can. How I have decided that I can do this because if I don’t, everybody loses and I am too strong to let that happen. How I won’t let cancer take my baby, my family, my friends or me. I refuse to give in but sometimes I have to breakdown in order to get my strength back. He texted me back something about my unbelievable insight, bravery and compassion. I thanked him for loving me and never giving up on me. I have so many people that believe in me and who know I can get Ronan through this. Last night, I got a taste of cancer winning and it was the most awful thing I have ever tasted in my life. I almost let it win. Today is a different story. Today, I walked the streets of New York throwing fists in the air and refusing to give up. I have too many people counting on me to let that happen. I am a mother and that makes me the toughest person in the world; next to Ronan.

We will be discharged from the hospital this evening and Ronan seems to be feeling better. We have taken him off the morphine drip and he is now wearing a little pain patch on his skin. I know the radiation is working just like this round of chemo is. I know we will get his bone marrow clear again. We will scan Ronan in 2 weeks to see how this chemo has worked. Depending on the results, we will either do another round of the same thing or go on to the NK-Cell trial like we had originally planned. I have come to learn that plans cannot be made when your child has cancer. All I can do is pray to God that Ronan remains pain free, he is happy, and we will take everything day by day. As much as I love a plan and how hard it is for me to let everything go, I have no choice. Every second of the day I have with Ronan is a gift and I have to make every second count. He has no idea his brothers are coming tonight and he is going to be so happy. We have decided that Liam will stay until Tuesday and then fly back to Phoenix with Mimi and Papa. We will keep Quinn here with us until April 3rd, and he will fly back to Phoenix with Woody. Ronan needs his brothers and if it means we have to pull them out of school for a bit, so be it. Our as a time as a family together, getting Ronan healthy is the most important thing in the world. Everything else can wait.

To all of my family and friends calling and texting. I’m sorry if I don’t respond. I listen to your every word but the one thing I cannot handle right now is talking, listening, and reading your words as you all cry and fall apart. It scares me to see you all so scared. I need you all to be strong for me right now and I can’t handle your tears. It hurts me to see you all hurting which is why I promise to be stronger for you. I need your words of encouragement… I cannot hear how your hearts are breaking and I know it is unfair of me to ask that all of you hide your pain, but that is what I need right now. There will come a time when I will be able to cry with you and you’d better believe that it will be because of tears of joy. I refuse to think any other way.

Thank you so much for all of your love that surrounds us and please continue to pray for us, for Ronan. We need all the positive love, light, and strength that we can get.

xoxo