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

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11 Comments

  1. sonia

     /  March 29, 2011

    do you have a link to somewhere in phoenix we can donate or can we just go to any hospital?

    Reply
    • If you Google Blood Bank Phoenix some listings should come up. I think there are a bunch of locations where you can go :)

      Reply
  2. Danielle

     /  March 29, 2011

    Any blood type? If so I’ll get Brian to this weekend.

    Reply
  3. How wonderful to see you at the game with your family. Your smile was radiant. Seeing how happy you and your son were was beautiful. Hang in there and warm yourself with these happy times. You are so strong and it’s okay to have some fun.

    Reply
  4. Marquita Ward

     /  March 30, 2011

    Lord thank You for all You are doing, have done, and will do for this family. Hold them in Your arms of love and let them feel Your closeness. Continue to encourage and strengthen their hearts, minds, and souls. In Your name Jesus, I pray amen.
    Bring donations Lord.

    Reply
  5. Trish

     /  March 30, 2011

    Dang! My sister was at Sloan yesterday and if I knew sooner I would have tagged along with her and donated blood. Hopefully next week. I’m glad to do something to help!!
    Keeping You all in my prayers.

    Reply
  6. Maureen

     /  March 30, 2011

    I am telling everyone I know in that area to get over there and give! You are all in my thoughts and prayers.

    Reply
  7. carol reinecke

     /  April 12, 2011

    i am in the NYC area . i got this link from a friend of mine. i was told i had a good platelet count so i will be happy to donate.

    Reply
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