Magic Medicine Day 3, Round 2

We are sitting here in outpatient waiting for Ronan’s chemo to finish. Day 3 has been pretty good. Ronan is never happy about having to come here. This morning he tried to unhook himself then seeing that he couldn’t, he grabbed the machine he is hooked up to and wheeled it away while yelling back at me, “I don’t wanna be here! I’m leaving!” He’s since calmed down and I escaped for a couple of hours for lunch with Woody while Mimi and Papa sat with him. After lunch, I asked Laurie (Baby Jack’s mom) if I could come up and see them. He is recovering from transplant and they are here until Friday, then they get to go home! Yay! So happy for him and seeing Jack gives me such comfort. He looks GREAT! Dr. Adams told us that depending on how Ronan does after stem cell transplant, that we may have to be in isolation for anywhere from 30-60 days. Jack is going home after about 20! That is amazing news!!! I got a little teary eyed seeing Jackers. He reminds me a lot of Ronan and it was hard for me to see all that he has gone through/still has to go through. Once again, I was filled with this is just not fair. I felt happy though too… and hopeful. He is on his way to paving the road for being the poster child for awful disease. I just know that in the end him and Ronan will be holding hands or maybe more like flipping cancer the bird together:)

Mimi Kay has been sitting at the hospital with me all week. So sweet of her to do and means so much to us. She is so helpful and Ronan loves having her there. The days are long and even longer during days like today when Ronan does not nap. We do a lot of playing, and walking around. He loves to see Dr. Wood and wants to know the name of every nurse we see. We got home around 4 today and my friend, Juliet came by and dropped off dinner. I have not seen her since all of this started. That’s always the hardest for me….seeing a good friend that I haven’t seen yet. I tend to just want to fall apart. I am so glad she came by, even thought it looked like a bomb went off in my house. With not being here all week, nothing has gotten done and at night I’m too tired to care. It’s hard enough trying to pay attention to all my little rug rats, let alone manage the 50 million things that need to be done around my house. Hopefully, I can get caught up this weekend. Liam and Quinn had basketball practice tonight and as they were getting ready Ronan freaked out that Quinn was leaving. I have not heard him cry like he cried tonight….. ever. He had the biggest alligator tears pouring down his cheeks because he wanted Quinn to stay home and play with him. Broke my heart into a million pieces. We let Quinn skip practice to stay home with Ronan and they blissfully played for a good 2 hours. Before all of this, Ronan would go to every practice, game, party, etc… that Liam and Quinn would have. It was like he was a 7-year-old boy too… or at least  he thought he was. He was inseparable from them. It is hard for him not to be able to go everywhere with Liam and Quinn anymore. I hate that. This is really cutting into the time we used to have together as a family. Quinn was talking to himself tonight while I was putting away laundry. I heard him saying how Ronan was sick and it’s making everyone sad but someday he will be better. I can tell he is having a hard time with all of this. It does not seem to faze Liam quite as much. Someday, our family life will be back to normal. When it is we are taking the biggest trip possible and burning Ronan’s broviac in the fire. The boys’ have already decided that when this is over, they want to go to Atlantis in the Bahamas. Ronan has also told me he wants to go to Paris to see the Eiffel Tower because he knows that’s where Woody asked me to marry him. He loves to hear that story… it’s his favorite thing to hear at bedtime.

He is sleeping peacefully beside me right now and smells so delicious. I gave him a bath in our sink tonight since he does not want to shower anymore due to me having to cover up his broviac with more sticky tape so we don’t get it wet. I miss the little things so much like being able to shower or give him a normal bath. You never really think about how much those little things mean to you until you are unable to do them anymore. So, my house is quiet except for Woody talking on the phone. I am going to try to spend a little time with my hubby before I pass out. Thanks for reading and loving my little guy so much. A big thanks to my friend, Olivia, for giving my blog a little make-over too. Sweet, true friends make all the difference in the world. Good-night!!

4 thoughts on “Magic Medicine Day 3, Round 2”

  1. We have been thinking of your family all day. Maya this blog is amazing and I think very important for you. Who knew you had this writing passion inside you. A beautiful gift. I miss you all so much and wish I could be over more often. Do not think we stop thinking of you EVER. Looking forward to meeting Tricia and the Worker Bees soon. You have amazing people surrounding you, because you are amazing. Keep your strength and positive attitude. I will call and check on you tomorrow. Much Love,

    Gay and The Family

    PS I Love that Ro still has his passion to raise a little he__ for the nurses, doctors, mom etc. Frustrating but oh so good to hear. Normal Boy.

  2. All I can say is that I read the story every day and just pray for all of you. My heart is with you.
    Ronan is just such a special gift. Maybe someday I can meet all of you.
    Love, Dorene

  3. I’ll be praying especially for Quinn. He sounds so sweet and sensitive. I’m sure that Liam is feeling the same way but either internalizing it or it’s going to come out some other way. Thanks for the great news about Jack! Glad you got to spend some time with your man. Keep on finding that time! I’ll be praying for Ronan taking his medicine today and tomorrow. It’s going to be a day by day, hour by hour, minute by minute walk. I’ll be praying you through this walk.

  4. Wow you have very worldly boys over there..Glad you have Laurie nearby to turn to for guidance and support as she is someone who is in your shoes. Thank the worldl for Woody’s parents right now. Quinn doesn’t need BB practice..and Ro knew that. Ro knows everything before it happens..remember when you said your new favorite thing this summer that Ronan would repeatably say is ..I love you so much mama..he was letting you know so you would dismiss his upcoming fits…He is ahead of his age for sure. .Let me know when a good time to stop by and do a drop off some things this weekend. XOXO

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