You belong among the wildflowers

I was telling my bestie today that I remember when I was a child and my parents used to watch the show “30 Something.” As  a little girl, I always thought the people on the show were so old and the show was really strange. I then told her how I wished I would have paid attention because then maybe, I would have picked up on the warning signs that being in your 30’s is hard. Or maybe it’s really not, and it’s only because of our situation, but is seems as if everyone around my age is going through something right now. Please tell me it gets easier…. because right now this is so not how life should be. WTF?? I also told her that I feel like someone just came along, took a look at me and thought, “Oh, hello. You’re life is too perfect so we’re going to give your kid cancer.” Just out of nowhere, BAM! This comes along. Really? Thanks a freaking lot. Couldn’t I have been hit with something a little less drastic? This is so not necessary. Trish and I both decided that if we were told that the world were ending tomorrow, we would believe it. It is the only explanation for all of this bullshit. I am laughing out loud thinking about something that happened after she and I hiked tonight. We were walking back from Camelback Mountain and we were almost to my house when some car comes flying out of their driveway and almost hit us. Tricia seriously had to grab me and pull me back from being hit by the car. We both then started dying laughing saying how we should have just jumped in front of the car so it could have hit us. O.K…. maybe not such a funny story as I sit and re tell it, but we were dying laughing. Totally kidding of course but I swear the only way I am going to get through any of this is laughing at as much stuff as possible. No matter how morbid it may be. Oh, bestie. How I love you so. I will tell you everyday of my life that you are my saving grace. I am so lucky to have you. Together we will get through all of this. I promise you this.

So, this weekend, as horrific as it was due to some terrible bullshit that has gone down; was absolutely lovely. Pain and sadness cannot be denied, but through all of the tears I see a soul being cleansed and renewed. It is amazing what can come of things when you are surrounded by the people who love you the most and who refuse to let you fall without picking you back up. This weekend was spent doing things that we used to do as a family before all of this. Hanging out, going to baseball practice, playing outside, movie night, eating out for breakfast. Such normal family things. It felt so nice because it has been so long since we have been able to really spend time together like this. Ronan is acting as if he is the healthiest boy in the world. He is full of nothing but giggles and smiles, love and light. He is so happy to be at home with his toys and his brothers. He happiness is infectious and keeps us strong.

I spent a lot of time outdoors this weekend doing what I used to do before all of this. I went on a 2 hour hike with Trish and Sarah yesterday. It was so therapeutic. I love nature, love being outdoors and the time with the two of them is always healing for me.  Then this evening I hiked Camelback with my Tricia Boo. Hiking Camelback is something we used to do all the time together. It’s our church and our special place. We got to the top, sat down for a bit, and I prayed my little heart out. It was so peaceful and gorgeous. I miss doing things like this so much. I’ve already made Trish promise that we will get back to how things used to be, as much as possible. I’ve got to have a little normalcy in my life and time spent with her, running or hiking is so good for both of our souls.

Ronan and I go to PCH to the clinic tomorrow. They will do the standard checking his blood levels to see how he is doing. I’m not sure when, but sometime this week we are flying out to NYC so they can check my blood and do his scans. You ready to hear step one of what we will be doing at Sloan for Ronan?? Here goes……

Full Title :
PHASE I STUDY OF ANTI-GD2 3F8 ANTIBODY AND ALLOGENEIC NATURAL KILLER CELLS FOR HIGH-RISK NEUROBLASTOMA
Purpose :
The goal of this study is to see if it is safe and feasible to give chemotherapy (topotecan, cyclophosphamide, and vincristine), natural killer (NK) cells, and an antibody called 3F8 to patients with high-risk recurrent or persistent neuroblastoma. 

The NK cells, a type of white blood cell, must come from a patient’s relative who shares half of his or her HLA proteins, which are immune proteins important in transplantation. Studies have shown that NK cells from a donor can be given safely and can be helpful in treating some diseases. These NK cells are collected from the donor and purified.

NK cells can recognize and kill abnormal cells in the body and can work together with antibodies to kill target cells. The antibody 3F8 specifically recognizes a protein present on neuroblastoma cells. Researchers have already shown that the 3F8 antibody can be administered safely to neuroblastoma patients. They want to determine the effects of the combination of chemotherapy, NK cells, and 3F8 antibody on patients’ cancers and bone marrow function, and how to maximize its benefits in treating cancer.

Eligibility :
To be eligible for this study, patients must meet several criteria, including but not limited to the following: 

  • Patients must have a confirmed diagnosis of high-risk neuroblastoma that has persisted or progressed despite standard therapy.
  • Patients must have a matched blood relative who can donate NK cells.

This is where we are starting. We will start this on March 21st and will be in New York for 5 weeks straight. We will then be able to come home for a 3 week break. To explain all of the treatments combined right now is too overwhelming for me. But I wanted to let you all know where we are starting off. Dr. Kushner has seen great results in the lab as far as this study goes and it’s been successful in kids as well. We are putting all of our trust into him. This has to be effective. We don’t need anymore bumps in the road, please. This is going to be tough on Ro. I know the 3F-8 stuff is painful. But he is so strong. If anyone can do this, it’s Ronan.

I hope you all are well tonight and had a beautiful weekend. We are so thankful for all the love and support through all of this. We are very thankful every second of our lives. Sweetest dreams to you all.

xoxo

Living is easy with your eyes closed

I have no idea what day it is even…. Wednesday I think? The days and nights are so blurry here and it is so easy to lose track of the time, days, and nights as they all seem to blend together. I do know that today is my dear birthday bunny, Jen’s birthday. Happy Birthday my sweet friend. Thank you for being a rock for me these past 5 months. I love you dearly<3 I hope you had a beautiful day.

My morning started off great with my friend Melissa bringing by coffee and her gorgeous smile for me. Ronan wasn’t up for visitors, kicked her out of the room, so we went into the hallway and caught up for a bit. Ronan would scream for me every so often so I would come and and tell him I was looking for Dr. Wood. He seemed satisfied with that answer so I was able to go back into the hallway and finish my conversation with Melissa. After she left, I was able to get out of the hospital today for most of the day. It was much needed and Mimi Kay and Papa Charlie came and sat with Ronan for me. So thankful. I can feel myself going a little stir crazy. It was nice to be out and about today. I returned around 5 to a happy Ronan and our 3-year-old roommate, Angel, who had been left alone almost the entire day. He sat and told me that his parents were never coming back. These are the same parents who left him alone last night for about an hour and when I went to ask Angel where they went he replied, “They went to smoke.” OMG. I spent the next 2 hours tonight tending to him and sharing Ronan’s popsicles and toys. I felt bad for the little boy. A 3 year old should not be left alone, EVER! He started throwing things at Ronan which in turn, made Ronan upset and the two of them were screaming back and forth at each other. Ronan ended up in tears because the roommate said to him, “You’re a bad boy!” Ronan looked at me and said, “I not a bad boy, mama!” I told him of course he was not but that didn’t stop the little tears from sliding down his cheeks. He is so tough but really got his feelings hurt tonight. There was not a nurse in sight up on 3 to handle this, so I did best I could. That floor 3 is a little coo-coo. Dr. Eshun gave us the green light to move to the 2nd floor tonight, thank god! We moved down here after the Angel incident and his parents had still not returned. We are just happy to be out of that room and down to our fun floor with the BEST nurses in the world. They were all so excited to see Ronan and he was just as happy to see them. The 2nd floor is like our second home now… it was weird to be here, but not with our “family.”  Somebody even wrote, “Rockstar Ronan,” on the whiteboard where all the nurses/patients info goes…. so cute that they know his nickname:) We are happy campers to be back down here and Ro baby is sound asleep. His ANC was still at 0 as of this morning. UGH. Please let it come up tomorrow. We are itching to get out of here and be back home.

Somebody sent some goodies tonight and I have no idea they  came from, as there was not a card. It was a bag full of some Star Wars toys, some fun books, Coffees for me…. Any takers??!?! Please let me know who you are… I would like to give you a proper thank you. It made our night! Ronan has been having a blast with his coloring books and little light saber racing car. THANK YOU!!!!!

I’m getting anxious and homesick tonight. Hoping I can unwind with a movie or something. I could seriously use some yoga in my life right about now. I feel like I have a lot to say, but my mind/body/soul is shutting down. Hospital exhaustion is kicking in. I am so thankful for my thoughtful husband and the Bose Headphones he bought me for Christmas. Music is saving my life through all of this…. thanks Wooddawg for being so thoughtful all of the time. You are the best gift giver in the entire world. Hope you all have a beautiful, blessed night. Sweetest dreams!

Extra special dreams tonight to my dear Charisma. I told you all the stars would end up aligning for you. More good things to come your way my dear. I can feel it!!

xoxo

Do you know if this hotel is pager friendly?? I’m not getting a sig’ on my beeper.

It’s days like today that make me really angry at cancer. I pretty much sat and held Ronan the entire day. We snuggled in bed and on the couch and watched movies. He won’t let me leave his side; not that I would want to. We watched “The Fantastic Mr. Fox,” and the ever so appropriate, ” The Hangover.” (hence the title of my post tonight) I seriously think that is one of the funniest movies ever and I don’t think I could ever get tired of it. Ronan laughed a lot during the movie in spite of his pain. I’m not censoring much these days from him, especially if it makes him laugh. He is feeling awful and has been fighting a low grade fever most of the day. I’m pretty sure he’s developing Mucositis, just like he did with Round 4 of his chemo. He’s telling me his throat hurts, he’s not talking much, he doesn’t want to eat. He’s in pain and just wants to be held. I’m pretty sure we will end up at the hospital if I can’t get his fever to go away. I am positive his ANC counts are at 0. That means no immune system at all. Poor baby. I would give anything to take his pain away.

Our Saturday should have been spent at the twins’ basketball game and at our dear friends son’s 2nd Birthday party. I was so sad to miss both of those things today but I am glad Woody was able to go and take the boys. As my Niki said tonight… next year we will all be together to celebrate her little one turning 3. Thanks my friend, for checking on me the entire day even though you were in the middle of your son’s birthday. You are so amazing to me. Woody and the boys’ had a blast and came home so tired. They are now all snuggled up in bed while I sit here and will stay up as long as I can to watch Ro and his fever. I spoke to the on call doctor tonight and she said as long as his temp does not go above 100.4; we don’t have to come in. Hoping we make it through the night.

I still hate the nights. The nights where if and when I fall asleep, my dreams are filled with such vivid nightmares that I toss and turn all night long. The nights where I no longer get to sleep with my husband because Ronan refuses to share our bed with anyone but me. My poor Woo… what kind of a man would allow a child to kick him out of his own bed? Only the kind of man who has a heart of gold and who would give up anything and everything for his son. I feel awful. I miss Woody and our precious time we used to have together staying up late and laughing at silly things that we would talk about at night or watch on T.V. while the boys’ slept. I feel like the rug has been pulled out from underneath me in so many ways. I’m tired and we still have such a long road ahead. Will this nightmare ever end???? Will I ever get my normal life back??? Everything is forever changed; and it better be with a very sweet outcome. All of our blood, sweat, and tears will save our baby. I swear to god on my life. Fucking cancer.

That is all for tonight. Going to try to unwind while watching my sweet lil’ man sleep. G’nite, sweet dreams my loves.

xoxo

Do you know if this hotel is pager friendly?? I’m not getting a sig’ on my beeper.

It’s days like today that make me really angry at cancer. I pretty much sat and held Ronan the entire day. We snuggled in bed and on the couch and watched movies. He won’t let me leave his side; not that I would want to. We watched “The Fantastic Mr. Fox,” and the ever so appropriate, ” The Hangover.” (hence the title of my post tonight) I seriously think that is one of the funniest movies ever and I don’t think I could ever get tired of it. Ronan laughed a lot during the movie in spite of his pain. I’m not censoring much these days from him, especially if it makes him laugh. He is feeling awful and has been fighting a low grade fever most of the day. I’m pretty sure he’s developing Mucositis, just like he did with Round 4 of his chemo. He’s telling me his throat hurts, he’s not talking much, he doesn’t want to eat. He’s in pain and just wants to be held. I’m pretty sure we will end up at the hospital if I can’t get his fever to go away. I am positive his ANC counts are at 0. That means no immune system at all. Poor baby. I would give anything to take his pain away.

Our Saturday should have been spent at the twins’ basketball game and at our dear friends son’s 2nd Birthday party. I was so sad to miss both of those things today but I am glad Woody was able to go and take the boys. As my Niki said tonight… next year we will all be together to celebrate her little one turning 3. Thanks my friend, for checking on me the entire day even though you were in the middle of your son’s birthday. You are so amazing to me. Woody and the boys’ had a blast and came home so tired. They are now all snuggled up in bed while I sit here and will stay up as long as I can to watch Ro and his fever. I spoke to the on call doctor tonight and she said as long as his temp does not go above 100.4; we don’t have to come in. Hoping we make it through the night.

I still hate the nights. The nights where if and when I fall asleep, my dreams are filled with such vivid nightmares that I toss and turn all night long. The nights where I no longer get to sleep with my husband because Ronan refuses to share our bed with anyone but me. My poor Woo… what kind of a man would allow a child to kick him out of his own bed? Only the kind of man who has a heart of gold and who would give up anything and everything for his son. I feel awful. I miss Woody and our precious time we used to have together staying up late and laughing at silly things that we would talk about at night or watch on T.V. while the boys’ slept. I feel like the rug has been pulled out from underneath me in so many ways. I’m tired and we still have such a long road ahead. Will this nightmare ever end???? Will I ever get my normal life back??? Everything is forever changed; and it better be with a very sweet outcome. All of our blood, sweat, and tears will save our baby. I swear to god on my life. Fucking cancer.

That is all for tonight. Going to try to unwind while watching my sweet lil’ man sleep. G’nite, sweet dreams my loves.

xoxo

Knock on wood

Today is day 8. Every time Ronan starts his chemo treatments, his blood levels are supposed to drop after 7-14 days. Which means, less energy, his immune system is low, etc…. Nothing yet. I took him to the clinic yesterday and his blood levels were still good. He has been full of energy and has been running around non-stop. Let’s hope this continues. Woody and I can’t get over him and how great he looks, for being so sick. None of this makes sense at all. I am just taking this as another great sign that Ronan is going to beat this and pray we continue to sail right through this. For dealing with something so difficult, he has been a champion…. not acting like a sick kid at all.

We have been taking advantage of being at home and doing normal things. The boys’ have been playing together non-stop. The love my 3 boys have for one another is so powerful and moving. It’s helping us win this battle. Last night Ronan cuddled up in Quinn’s bed and fell asleep with him. I left him there all night and only got up a few times to check on him. He slept peacefully the whole night through and woke Quinn up around 6:30 this morning to play. Ronan was upset that the boys had to leave for school this morning but I kept him busy. We ran some errands and I even took him into Target. Shhhhh! Don’t tell Woody;) I took him in to grab a few things, the store was empty, and I didn’t let him sit in a shopping cart. Poor kid has been begging me to take him for weeks now. We were very careful and I sanitized his hands about every 5 minutes. It made his day. He just wants to do normal things, like we used to do. So we did<3 And we will continue to do things as “normal” as possible. I am getting used to the looks of pity when we go out into public and Ronan doesn’t want to wear his hat. It doesn’t seem to bother me as much anymore. Heck Ronan doesn’t even care or notice, so why should I??

As of now, Ronan’s surgery is scheduled for the end December. I have a nice little story about the exact date of his surgery. I was telling my new friend, Pam, who has the little girl, Victoria, who is a cancer survivor, when it is going to be. As soon as I told her, she got a little quiet and goes, “Oh my god. That is the date that Victoria’s surgery was.” Same surgeon, Dr. La Qualia and everything. Another one of those good signs that I’ve been seeing during through this entire journey. We both got goosebumps and I got teary eyed. So Christmas in New York it will be:) Just wish it were under different circumstances but we are going to make it the best Christmas ever. As my dear Karen keeps saying, it’s one step closer to Ronan’s wellness.

Our next round of Magic Medicine does not start until November 1st. Until then, if all goes well, we will just be making visits to the clinic twice a week and we will be home the rest of the time. There truly is no place like home. Tonight, we went for a walk down to the our neighbors house. Ronan ran the entire way, only turning back to catch the football we were throwing. We had a great walk with our friends and enjoyed the cooler weather. It was the perfect evening and I was so happy that we were all together as a family.

I fell asleep early tonight, cuddled up to Ronan. Only wish I could sleep the whole night through…. ended up waking up in a panic and now my mind will not be still. Too many unknowns and worries keep me up. How do you sleep when the baby right next to you has cancer?? I woke him up to tell him I love him a few minutes ago. I tell him that 100 times a day. None of this has gotten any easier, but it has become our new way of life. This is not a life I would wish on anyone, but it is our life now and we will make it as happy and beautiful as possible. To be any other way would not be fair to Ronan or the twins. I know how important consistency and security is in a childhood. Especially in little guys who are 7. They will remember most of what we are going through so we have to make sure we make this as positive of an experience as possible.

Woody came home tonight with his hair buzzed super short. So sweet and cute of him to do. Ronan loved it and kept wanting to feel the top of his head. His long eyelashes are starting to go, as well as his eyebrows. His eyelashes are still there, but they are not as thick as they used to be. It just makes him that much more beautiful. Every feature on that child is beyond perfection.

So, if you don’t hear from me this week it’s only because I am taking full advantage of my healthy baby and being home. This week has been spent playing catch up on all the things I am behind on from being at the hospital all last week. It is amazing how far behind I can get on things around here.

Sweet dreams, friends. <3