I wish Neuroblastoma was an April Fools’ Joke

Last night, I left Sloan beyond beat due to our traumatic day. Woody came and met me and we swapped places so I could sleep at the RMH and spend a little time with Quinn. As soon as Quinn and I stepped outside, we were hit by all the rain. I wasn’t prepared at all… ballet flats on, no coat, no umbrella, etc….so the two of us held hands and we ran as fast as we could back “home.” We splashed in every puddle along the way, laughing the entire time. It was some much-needed simple fun. As soon as we arrived back to the RMH, we ran into my new friend who lives there, Doriet and her little girl, Ester. Doriet got a big kick out of how soaked we were and hurried us up to our room to get warm. I am just starting to get to know her and LOVE her. When I told her a few days ago that Ronan’s bone marrow was positive again she looked at me and goes, “So what. That doesn’t mean anything.” She is full of tough love which works for me. Seems that I respond well to her kick ass attitude and she is the pillar of strength. An amazing woman, mama, and wife to say the least.

Quinn and I warmed up and snuggled in bed together and slept peacefully all night as we listened to the rain outside. I didn’t wake up until my phone went off at 10 a.m. EST with a text from my Mr. Sparkly Eyes telling me he hoped today was a better day. I thought to myself… It HAS to be. I don’t think I could handle two yesterdays in a row. On our way to Sloan, we stopped at Delizia’s so Quinny could get a slice of pizza. He must have told me he loved me and thanked me a half a dozen times while we were there. Such a little love bug. I’m going to have a hard time when he leaves on Sunday. Once we arrived at the hospital, I found a sleepy Ronan and Daddy cuddled in bed together. I quietly woke Woody up to let him know he could leave, but he ended up staying for a few hours and working from the hospital. Quinn stayed in the playroom on 9 by himself and then met us on 2 so he could see Ronan at Radiation. It was the highlight of my day; watching my two boys laugh and play for the 20 minutes that we were waiting. Lots of laughs and giggles from them both. After RT, Woody and Quinn left and I stayed at Sloan. Ronan’s mood is so much better today. We have been playing a ton and he even let me hogtie him up while we played Cowboys and Indians. He is now quietly laying down and watching a movie. I think I wore him out! We are waiting for Woody and Quinn to get here and I asked the nurse if she could block off the playroom for us so Quinn could play with Ronan for a bit and we could have dinner as a family. She agreed to do so. Very nice of her as it’s the only way Quinn can be on the floor with Ronan for an hour or so. Better than nothing.

This weekend will be spent here, inpatient. Dr. Kushner came to see us today and said Ronan’s counts probably won’t come up until Monday or Tuesday. Yowzer. I am trying to make best of this and luckily, this hospital is really good about keeping the kids entertained. Lots of arts and crafts, funny clowns, the Candy Cart, etc….. I am just thankful that Ronan looks a million times better and he finally has his giggle back. It’s really hard to go a day without it. He is happy for the most part, although he asks me all the time when he can go back to Phoenix and says it’s not fair and he misses his home. This kills me. I just keep telling him that we will go home as soon as we get him better and that we have to be strong, keep fighting, and never give up.

Today, I was showing him his little lunch box with his name embroidered on it and I was spelling out the letters of his name for him. He looked at me and goes, ” I like it, but why doesn’t it say Rockstar Ronan on it?? I burst out laughing. Cutest thing ever. He spent the majority of the day playing April Fools jokes on me. He would tell me things like he had to go to the bathroom, and I would get him up to go and then we would yell out, “April Fools!” He must have done this a dozen times today. So glad my little prankster is up to his old tricks.

Ronan and I just got back to our room from our Friday Night Pizza Party. Woody and Quinn brought us pizza and we sat in the playroom and ate together as a family. Ronan was in a very playful mood and he is now tucked into bed watching the new “Clone Wars.” I’m going to cuddle up to him as he is getting sleepy. I am planning on slipping out soon and Woody will stay the night again. So thankful for that… I sleep horribly at the hospital and I really want to spend as much time as I can with Quinn before he leaves. I hope you all have a lovely weekend. Thanks for checking in!

xoxo

9 responses to “I wish Neuroblastoma was an April Fools’ Joke”

  1. As I read your words from your last post, I feel each pain and each tear. I know JUST what you are going through. You are a STRONG moma and Ronan is so lucky to have you. I am so sorry I missed seeing you the other day at Sloan. I ran back quick but you were gone. I will be back there Monday and I really hope to see you.

    All I can say is that we are at the BEST place for NB and our boys are the toughest kids I know. They always bounce back and they always will. These are just bumps in our remission roads.

    I pray for his counts to bounce back super quick so you can get out of there and to enjoy the weekend with Woody and Quinn.

    Prayers and Strength!

    Ashleigh

  2. Joy (Corkran) Gaeraths Avatar
    Joy (Corkran) Gaeraths

    Love that little face and I have never even met him. It’s a new month….better days for the Thompson family are ahead! Positive thoughts to all of you!!

  3. that smiley face in his jammies. i love him. thoughts and prayers flowing.

  4. Rita Dickinson Avatar
    Rita Dickinson

    So glad today was a better day.
    You, Ro, and your family ROCK and are going to kick stupid fucking cancer’s ass!!!

  5. Thank You Lord for Doriet…thank you for the strength and stratedgy she shares. Thank You Lord for this family and the love they share..for the love they shared before the illness and the love they share now and the love they will share. You, Lord made it possible. I pray today for You Lord to fill every need they have and in this show this family Your glory, in Jesus name amen.

  6. I remember it like yesterday, our time in in-patient, other mothers and their stories while having coffee in the parents lounge.
    No, Joke is right. Other family menbers are the way I survived, visits and a quick hour or so outside so you can smile agin for your child, I had 3 cousins in N.Y. and one worked at NYU, the other two where Nurses that came from Florida to stay for a week, these where days of strength for me. A merry-Go-Round.and Roller-Coaster of emotions, get off the ride and smile, at every chance you get, if you are fresh Ro will feel it, and he will find a way to play and smile when he can. I will not tell you what it took, but she is on honor roll today and going into high school next year. We are four and a half years out Transplant.

  7. Just wanted to say that I’m thinking of your beautiful boy here in Chicago – and wishing for big smiles and play days to come.

  8. When the world says give up…HOPE whispers, try it one more time.

  9. I read your blog from start to finish last week, now I’m back again. I don’t know why as it makes me bawl my eyes out, but your wit, honesty and bravery in the face of this nightmare amazes me. I am so unbelievably sorry this happened to your family, I feel like my heart is broken. I have an almost 4 year old, and recently things have been going on in my life that have distracted me from being the best mother I can be at times. Thank you for reminding me that NOTHING matters except my baby boy’s health. This past week, I have made every second with him count and I will never take another for granted. Again, thank you, I know you would give all of this fame, and anything else you have to give, up to have another day with your boy, but sharing your story is changing lives. I would give anything to bring your boy back. Good luck with the pregnancy, I think about you an awful lot.

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