Hospital Reality sucks

We moved out of the POU (Pedatric Oncology Unit) today and into a different area of the 9th floor. I wish we could have stayed in the POU, but moving to this room is a step up as far as getting us out of here. The POU only has 3 rooms and they are so private that you never see what is going on with the other patients there. The room we are in now, is just like the 2nd floor at PCH. Except worse in a way, because the kids seem so much sicker. I cannot even tell you what I have seen on this floor today, but it is something a mother should never have to see or experience. Let’s just say, it left me in tears most of the day. One room in particular is covered in signs about heaven and God and through the window I saw a mommy feeding her baby ice chips, scooping them into her mouth. The doors here are covered in posters that say things like, “Be strong, Be positive, Be brave.” I have had that empty pit in my stomach the entire day again and it is once again thoughts are filling my head like I can’t believe my baby is in the cancer club now. I have been so positive and upbeat lately… this has kind of thrown me for a loop. On top of it all, Woody left today and I guess I need him around more than my independent self thinks. I was so spoiled by having him here with me the entire time. He gives me so much strength and we are such a great team. We have a roommate too. I think the little girl is about 11 and has bone cancer. That’s what I’ve picked up on so far. There hasn’t been a lot of time for chit chat. Ronan spent the day walking around some more. Still trying to do everything himself. He is so sweet. Everything is always, “Please help me.” or “Please hold my hand.” or “Please get me a drink.” He says please before asking me to do anything in his squeaky little voice. He is hurting so badly but is too proud to tell me.

I met a new friend today named Ed. He is somebody that my friend, Niki, reached out to after hearing his story about his son, Jack, and his battle with Neuroblastoma. Jack fought long and hard, but passed away at age 5. It was hard meeting Ed today, the pain in his eyes was undeniable. From the second I saw him though, I felt as if I had known him forever. He sat with me for about 2 hours and we talked about everything. It was comforting to me and hard at the same time. He said it was therapeutic for him which I was surprised to hear him say, but it says a lot about the type of man he is. He left me with a big bear hug and I had tears in my eyes. Today was a very special day and I feel privileged to have learned about his journey. He has been through hell and back and is still standing; with a smile and a laugh that will melt your heart.

Tonight, is the first night that I am really homesick. I guess it’s true…. my home is wherever Woody is, because I know that is why I am feeling this way. Also, I really miss the twins. My heart ached when I talked to them on the phone tonight. I hate being away from them. We are almost done with New York though… I am going to make the most of these next couple of weeks. So glad Tricia gets here tomorrow. That is going to make me a lot less homesick.

Ronan is doing well and Dr. Angel (La Quaglia) came to visit. Ronan gave him a big smile the entire time he was here. It’s like the two of them share a secret now… they have a special bond. My friend Pam’s husband, Larry, told me that Dr. La Quaglia walks on water to them. I couldn’t agree more.

My Xanex, that I NEVER take, is starting to kick in. Thank god. I was feeling like I was going to jump out of my own skin all day today. I need a night of sleep without nightmares. My dreams are so vivid anymore. The night before Ronan’s surgery, I had a dream all about it. Everything turned out perfectly, Ronan was fine, and then Woody had to share the news with me that he had an inoperable brain tumor. WTF is that all about?? My baby was saved, but my husband was now dying. I remember everything about that dream so vividly, down to every single person that was in it. I woke up thinking it was real. I’ve never had dreams like this in my life. They are so real, it is scary. Sleep is hard now because I wake up so often, because of a nightmare or because of worrying. Hopefully there will come a time when it will once again be peaceful for me again. WIth that said, head hitting the pillow, asap. G’nite, sleep tight, love to you all.

xoxo

Baby’s incision 🙁

8 thoughts on “Hospital Reality sucks”

  1. I am a friend of Kay’s, I have so heartfeltly read each post. I had a twin who had a heart that didn’t develope the correct way. Your mother in law was such a world of strength for me during that time. Your feelings are so truly real. My heart goes out to you and your entire family. You are so blessed to have such great people surrounding you like Karen. If we can do anything for you don’t hesitate in asking. You are in such great hands and are so smart to seek out to very best for your beloved Ronan. I am so impressed by all you strength. there are so many people that love your entire family that you have never meet. There is so much love that surrounds you. Believe it or not you life will always be richer and deeper, because of the journey you have been going on. Lots of angels will alway be there for you.

  2. Praying you get a good nights sleep, lord knows you need it for sure. You amaze me. I’d be havin to chew some Xanex like candy I’m positive. So sad Woody and your boys can’t be with you.

    Ronan, bless his little heart. . .Saying please, not telling anyone how bad he hurts. My hero.

    And thank you Mr. Ed.

    Saying an extra prater for your roommate tonight.

    Thanks for writing to us 🙂 loves to you and Believing!
    A
    COLE prayer team

  3. When I was 17, I had to be hospitalized for 7 days for a case of severe hemmorhaggic cellulitis, and it was at a Children’s Hospital near my home, which is ranked as one of the best in the US.

    I was surrounded by children and babies, screaming and crying for their Mommies. It was horrifying. As a result of that hospitalization, and a long illness that followed it, I developed severe social anxiety, which I still struggle with every day (now 3 1/2 years later). I too struggle with having the Xanex, but being too afraid to take it.

    I’m sure you hear this from everyone, but I truly do think of you and Ro each and every day. Your strength and Ro’s strength give me the will to keep fighting my own demons as well.

    God bless,
    I hope the X (as I call them) gives you some much needed sleep.
    Megan B

  4. I can remember how luxurious it was being in the POU! We were fortunate in a way because Xander developed C-Diff and we could not go to the regular floor! They told me that we were lucky to be “stuck” there! We really did enjoy recovering there. And you are so right, there are visions burned into my mind forever that no parent should ever have to see/go through. It’s just sickening. Ronans battle wound looks great! Thinking of you and sending prayers for all the warriors.

  5. I have been reading about your little Rock star for quite some time… This is my first response. My heart goes out to you all. My husband is a 15 year cancer survivor. He had Non-Hodgkins Lymphoma and the lymph node that went crazy was in front of his right lung. It grew right thru it and then towards his heart. To make a very long story short… He finally had surgery to remove the lung, then had the right pericardium (sac that holds the heart) scraped of cancer and a gortex patch placed on that area. Your pain and words bring back so many memories for me. Tears are streaming down my face ( makes it hard to write). You are in my prayers and thoughts. I look forward to the updates. I too finally took something to help me sleep, that was my release, sleep… I didn’t have dreams until later. We have three children, at the time a Senior and Junior in High School and a 7th grader. I had to be the strong one… For ALL of us. I too kept everyone updated, I still have the paper I wrote all the details on, day by day.
    I wish I could send you some of my strength. I remember the first day they sent Paul up to the 6th floor. CANCER floor and it hit you when the elevator doors opened. Different world. I kept saying, WE are going to beat this….. I felt like I neglected our three kids at the time, my focus was Paul and I needed him to get better. The kids understand, yours do too.
    Every year Paul goes in for the dreaded yearly Oncology tests.. He becomes very quiet and withdrawn, I worry… We have been very lucky, a few small cancers we expected from treatment, like the skin cancers from radiation… Our worry is Leukemia, which they see in patients 10 – 12 years down the road. He is 15 years!! Yah!!!
    I am wondering why I am writing this to you… But I want you to know we survived, it was terrible and yours is much worse, and I am sorry that you have to go thru this. I am sending you love and hugs, encouragement, from someone that knows that pain and agony of cancer the “C” word, and the understanding of throwing up after hearing the tests results are good. We are here for you… always. Take care and be strong. God loves you all.

  6. I love your honesty, knowing how hard this is for you and your family. I know in my heart that Ronan will beat this. I am from San Diego, and got involved last yar with Celebration of Champions, which is a celebration for kids with cancer. The little boy that we sponsored was 3 years old, having first been diagnosed with cancer in his sinuses at 18 months. He was such a trooper, and now in remission. My heart went out to the family of the year old toddler also fighting cancer, the 9 year old boy that had his leg amputated and to all of the 300 other children there. I will rejoice the day that a cure is found for all cancers. Keep up your spirit, glad your friend is coming to be with you. You rock Rockstar!

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