I so needed to take a little break from the hospital today. Ronan is still refusing to get out of bed so we spent the morning playing; I tried my best to entertain him. Our favorite nurse, Sharon, came to do Ronan’s dressing change. He did pretty well with it but at one point I heard him yell out to her as she was taking the tape off, “I’m not a brave boy, I’m NOT A BRAVE BOY!” Neither of us had said anything about him being brave, but in his little 3-year-old memory, he hears us telling him all the time how brave he is and as he was hurting from the pain, he decided to let us know that he was not brave. We both told him he was, that he was the bravest boy in the world. UGH. I could cry right now just by telling this story. A 3-year-old should not what it is to be brave and to have people tell him he is brave all the time. Cancer is robbing Ronan of his childhood and I am fucking beyond pissed about it. His childhood, his innocence, his toddler years are being ruined. This will never be alright with me and I swear to god, I will do something about it. For all the Ronan’s, Jacks, Mia’s, Phoebe’s, Coleman’s, Victoria’s, Leo’s, Noah’s, Tripp’s, Ashley’s, Layla’s, and everyone else out there that is suffering and dying from this disease. I will not stop until people start paying attention to childhood cancer
Auntie Karen came around noon and I snuck out to go home. I wish I could say I was productive at home but I just tried to catch up on some sleep since I only slept a few hours last night. I tossed and turned during my nap today; even though I was exhausted I can’t escape being restless. I got up, showered and ran off to my hair appointment. It felt so nice to do something normal and to be out of the hospital. Sarah (the baby whisper) came and relieved Auntie Karen and sat with Ronan for about 5 hours. Thank you both today so much; I don’t know what I would do without you.
Ronan is tolerating Round 6 really well so far. I know the effects won’t hit him until late next week but for now, besides the fact that his spirits are down, he is doing well. He hasn’t had any nausea yet which is great. I can’t wait to bust him out of here hopefully on Saturday evening. We then get a few weeks off from the hospital before we start the Stem Cell Transplant. We will have more scans done in the next couple of weeks to give us an exact answer on where exactly Ronan still has cancer left in his little body. I will update you when I know exactly what the date is going to be. Ro is peacefully sleeping now; he looks so beautiful. I swear I could sit and stare at him all night which is really what I end up doing most of the nights that we are here. My eyes will never be able to soak up enough of his beauty.
I received some exciting news tonight via FB! My friend, Jessica, posted on my wall that she saw my comment in US Weekly re: Sloan Kettering and Jake Gyllenhaal’s visit. I called up New York Macy to see if she had the issue. She didn’t and sounded half asleep but still said she would drag her butt out of bed and into the freezing cold at 11:00 at night to buy the issue. I was laughing at the thought of that and told her no way, that I would call up Trish or Sarah. I ended up calling Sarah and she ran out to grab a copy so she could tell me what is said. Thank you, SARAH!! You are such an amazing friend:) Not only did US Weekly put Ronan’s website in the latest issue, but they gave me a whole little side blurb. I am practically jumping up and down on the hospital couch I am SO EXCITED! After hearing this news, I can’t stop smiling and it feels so good. It’s been a couple of days since my smile has come out to visit:) This so raises the bar for us in getting the word out about Ronan and changing the way the world views childhood cancer. A huge thank you to Jennifer at US Weekly for keeping her word and having something so sweet come out of this. Now, if I can just get Jake to become the voice for childhood cancer. We don’t really have a voice and as I said before, I feel like he could really be a good advocate for us. I’m going to try my hardest to make this happen; people have to start listening and paying attention to this issue. There are too many babies, kids, teenagers, suffering from cancer for it not to get more attention.
Woody and I were having a conversation the other day about unconditional love and what it means. We are at a point in our life where we have so many amazing people doing things for us. You know who you are, all of you who are helping us all while asking of nothing in return. Please know that not a day goes by that I don’t think of all of you. Trust me, it kills me to not be able to sit down and thank each and everyone of you individually. You are all amazing, even the people that we do not know and who are starting to call themselves “Ronan’s Fans.” I try my best to keep up on all the comments on here and I hope you all know how much it inspires me, that I am inspiring you. Ronan is so full of beauty that he has flooded our lives with it by touching so many of your hearts. I will forever be eternally thankful for each and every one of you.
Transplant is going to be hard and some of you have asked what you can do as far as sending things for Ro to play with; for us to please make a wish list of things that you can send to the hospital to keep our little guy entertained. Keeping him on lockdown for 20-60 days is going to tough. I’m trying to get creative and think of the best ways to keep him happy. Of course you know his love for Star Wars so I was thinking of putting up a bunch of Star Wars posters in his room and making it very Star Wars themed. I went on Amazon the other night and they have a couple of different Star Wars tents that I am thinking he would love. As far as toys go…. I know everything has to be new or very sanitized to go into his room. It has to be insanely sterile. iTunes gift cards are always great. Ronan has totally taken over my iPad and loves to download movies, books, games, etc… My iPad has been my saving grace over these past few months; it keeps him entertained for hours. He has watched Season 3 of Mickey Mouse Clubhouse for about 3 days straight now and loves that he can choose the episode himself. I love to watch him do this; I can tell it gives him a feeling of independence and pride.
I can’t believe this is the last round of Ronan’s Magic Medicine. Look how far our little guy has come! After all he has endured and all the pain he has suffered, his beauty never fades. I can’t wait until this round is done and I can do my “Ronan’s done with chemo happy dance!” The light at the end of the tunnel is getting closer!!!
G’nite, sweet dreams, to all of you angels out there.
10 thoughts on “Magic Medicine… Day 2 Round 6”
That is so cool!! I want to go buy an issue right now, but unfortunately I’m at work. I’m definitely going to rush out and buy one on my lunch hour….I can’t wait! As for getting Jake to be a spokesperson for childhood cancer…..if anyone can do it, you can!! I’ve been following your blog since the very beginning and although we have never met, one thing I’ve learned about you is that anything you put your mind to, gets done! Its truly amazing! So I have no doubt that Jake will be a huge spokesperson for the cause!! As for Ronan’s transplant, I’ll be saying tons of prayers for him starting now. I know it will be a hard time on all of you, but once its over it will be such a blessing.
I’m sure it’s somewhere in the website, but what address do we use to send any gifts too?
MT, hang in there kid!! You and Woody are doing an amazing job and dont need to thank anyone! Your actions, hard work, focus on getting Ronan healthy is our thank you. Those people who need a thank you dont deserve one really because its not why we help. Every minute you use to send thank yous takes away from focusing on Ronan and your other kids.
Ronan is a brave boy whether he knows it or not and is a motivating inspiration to me every day. Keep up the good work and expect a transplant package from the Lynch family. We call it the Transplant Survival Kit cause those are long days in a hospital room and you all need things to help you thru!!
Keep up the great work and know we are all here sending good vibes and energy to you all!!
This comment is why I LOVE YOU! Thank you for being such an amazing family, Ed. I am so proud to call you my friend!!
Lord bring continued blessing of endurance and faith, and most of all healing, in Jesus name amen. Thank You God for this family.
There is NO need for you to thank anyone, we ALL owe Ronan and Your Family a great deal for allowing us to be a small part of your lives. Actions always speak louder than words and your actions Scream to us all that it is time to stop talking and start doing so that we can find a way to STOP this disease from attacking these beautiful babies. I would love to help spread the word in anyway I can so that your brave little boy knows we are all trying to help him fight and win this battle against Cancer. Thank You so much for just being who you are and for sharing this Journey with us. You humble me.
I’ve stopped and started this comment about 5 times now. It feels weird and trite to just start talking about something as mundane as how to send you a Star Wars poster without saying something about how profoundly f-ed up it is that a 3 year old would understand enough about pain and how adults try to help them through it to say he does not want to be brave. Unreal. Kinda makes my heart hurt to hear. And I guess that weirdness, having everyday normal things happening right in the middle of the most surreal horrible experience possible is exactly part of what you have been giving us all a little window into…it sucks. I’m sorry.
And since there is no good transition, I’ll just say thanks to Rusty for asking about the address we can send stuff to–I had the same question. Also I remember reading that people email you here at the blog, but I haven’t been able to figure out/find the email address. If you wouldn’t mind, would you post it here? The reason I ask is because I found a pretty large Star Wars mural that you just soak in water and it will stick to a wall. It removes easily and doesn’t leave any weird residue, so it might be something you could use in Ronan’s room. But I thought I would send you the info about it to make sure that it would be okay before I got it and sent it to you. Anyhow…I was going to say I’m thinking of you guys, or something like that, but the only right to end seems to be with: FUCK CANCER
Thanks for sharing the US weekly article, how awesome!
I never buy US Weekly, but I did today!!! Great job on getting your voice out there….attention IS being drawn to childhood cancer through you and Ronan. Way to go Maya!!!
Your little guy is truly awesome…and so are YOU! Thank you for bringing out the truth and pain and joy…all at once. I wish I could take your pain away.
If you want, check out this site too if you have time…I came across it while reading a different CB site: http://www.46mommas.com (I am not affiliated with it, but it certainly looks like they are movers and shakers!) They are focusing their time and efforts on raising awareness and funds for pediatric cancer research. This is organized by St. Baldrick’s, AL, and they are the second largest funder of pediatric cancer research besides the federal government.
Prayers are raised for your little one each day. God Bless.