Day: January 6, 2011

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 đŸ˜¦

Prepare to be schooled

Hello world!

Last night, Woody and I fell asleep around 2 East Coast Time. Ronan woke up around 1 a.m. and was wanting to eat some popsicles. He then wanted some books read to him so I read him one of my favorites when I was little, “The Pokey Little Puppy,” and a few Mickey Mouse books. He woke up pretty early this morning and is now back asleep. Wooddawg is still sleeping; of course:) Today, I have a new friend coming by whom I’ve never met named Ed. My friend, Niki, got in touch with him though the Neuroblastoma world. He has been in our shoes before and Niki has met and talked to him a few times and has nothing but amazing things to say about him. I am excited to meet him, I feel like I already know him. Niki calls him a “big teddy bear:).”

Woody flys back to Phoenix today so I will be here for the day/night alone. Not a big deal… we are moving out of the POU (Pedatric Observation Unit) today. Tricia was supposed to come in on Saturday, but changed her flight to come out tomorrow so I don’t have to be alone for two nights in a row. Now that’s a best friend for you:) She is one in a billion and I am so excited to see my boo. I’ve missed her so much. My mom gets in on Sunday and I am very excited for that as well. It will be the first time that she has been to NYC. I hope I get to show her around a bit. I know she will love Central Park. I’m most excited for her to see Ronan though and how well he is doing. He is going to be over the moon that she is here. Lots of good things coming up in the next few days.

So, a few of you have asked what the next step is as far as Ronan’s treatment goes. I’ll try to explain it to you as best as possible. We plan to start his last round, Round 6, of chemo on Monday. That will last 4 days. After that, we will get back to AZ as soon as possible before his levels drop. After we return home, we will let him recover from the chemo… with hopefully no unexpected hospital visits for fevers or anything like that. Sometime in February, not sure of the date yet, we will start the hardest part of his treatment…. so I hear. It’s called the Stem Cell Transplant. I’ll try to explain it as best as I can. It is basically very high doses of chemo, which destroy Ronan’s immune system. When the stem cells come from your own blood or bone marrow, it is called an Autologous Transplant, which is what Ronan is having. This type of transplant, patients act as their own donor. That is, a child who is about to undergo cancer treatment will have his or her own stem cells removed (harvested) and frozen for later use. After the child receives chemotherapy and/or radiation, the stem cells are thawed and put back into the child’s body. This procedure may be done once or many times, depending on the need. Sometimes doctors will use extra-high doses of chemotherapy during treatment (to kill as many cancer cells as possible) if they know a patient will be getting a stem cell transplant soon after. It not so nice words, they are basically going to “kill” Ronan and bring him back to life with his own stem cells that they have harvested. Stem cell transplantation (also referred to as bone marrow transplantation or hematopoietic stem cell transplantation) treats serious diseases through a process that destroys the patient’s damaged immune system and replaces it with healthy stem cells. (Blood stem cells — regenerative cells that become red blood cells, white blood cells, platelets or plasma cells — are an integral component of a person’s immune system.) The new stem cells restore the blood-forming cells of the bone marrow, thus creating a new immune system in the patient’s body. Make sense? It’s very complicated, very scary, but it is going to give us the best chance of giving Ronan a whole new cancer free immune system. We are on “study,” which means we will be randomized to see if Ronan gets one Stem Cell transplant or two. There are some studies that indicate that a double transplant may be better at killing the cancer for good; but it is not complete yet so we have signed up to be Guinea Pigs. A computer will flip a coin for us and then we will find out what we get. We are guaranteed one, but he may be getting a second one later on down the road. I’m nervous about the 2nd stem cell transplant…. it is so hard on the kids and I really hate to put Ronan through all that twice. As of now, I am just leaving that coin flipping in the hands of the Gods above. We will cross that bridge when we come to it I guess.

This is going to be very hard on Ronan for obvious reasons. We will have to be at Phoenix Children’s Hospital from anywhere to 20-60 days, depending on how fast his immune system comes back. We will be in isolation, which means Ronan will not be able to leave the sterilized room we are in at all, and only a few people can come and go. Everything has to be super germ free and the less people coming in and out, the better. I know getting through this surgery was a big deal, but I think that the Stem Cell Transplant is going to be even harder. I find comfort in the fact that I know Ronan is going to get through this once again with flying colors. He has proven time and time again, that he is no ordinary boy. He is our Rockstar:)

Whew! Do you all feel like you’re back in school?! I feel like I just taught a class;) Hope you understood everything, I explained it as best as I could. Time to try to get my little monkey up and walking around today. Happy Thursday to you all. I hope you are having the best day ever:)

xoxo