Sometimes it takes a really good fall to know where you stand

Where have I been the past 24 hours? Dead. Or the closest I’ve ever felt like dying. Yesterday, Dr. Kushner came to see us and we got the news that Ronan’s bone marrow is now longer clear of Neuroblastoma. All 4 sights from his scans a couple of weeks ago here are positive which explains all of the activity on his MIBG scan. The scans at PCH came back as clear… but that was 6 weeks ago. The most recent scans here show that his bone marrow is positive again which means that his cancer is spreading and we have to get it under control. So, I spent all of yesterday in a thick fog with my head spinning. I made it though the day while Woody worked but by the time he returned to the hospital, I was a complete mess. I spent much of the evening sneaking out of the room while Ronan slept…, throwing up. At one point, I found myself huddled up on the floor rocking back and fourth with my head spinning so quickly I felt like I was going to pass out. It was the first time in my life that I could not get myself back under control. I was sweating, crying, and could not even form a thought. My sense of smell was so heightened, that I couldn’t deal with any of the smells in the hospital. The smell of food and cleaning products combined were enough to make me want to check myself into the loony bin. When Woody returned for the night I told him I had to leave, that I needed some air. I somehow managed to get myself back to the RMH and passed out on the spot. I woke up around 11 p.m. with my raging headache that refused to go away. I got in the shower, dressed and walked down the street to the store to get some Coconut Water to try to rehydrate myself and take my Advil. I returned to the RMH still a wreck but forced myself to take my Ambien(which is the only way I sleep now) and fell asleep with my head still pounding and the thoughts consuming me that I cannot do this anymore, I cannot survive this, I cannot go on.

I woke up this morning, eyes bloodshot and red, still feeling defeated and as if I wanted to die. I cannot pick up my phone at this point to talk to anyone… but this morning when my friend, Ed called, I instantly knew I had to answer it. I was crying, I was still a mess and I didn’t hide it. I was on the floor of my bathroom as I listened to him tell me how he had pulled some strings and that the New York Knicks would like to host us at a basketball game. Did I forget to mention that my in-laws are flying out here on a whim with Liam and Quinn today? They are. We need them. Through my tears, I told Ed how excited the boys’ would be, how happy that was going to make them. My life now is all about squeezing every ounce of happiness for Liam, Quinn and Ronan, that we can from it. After I listened to Ed tell me how everything was going to be o.k., how I was a tough bad ass chick and I could do this it suddenly became very clear to me. I can do this and I will do this… this is not the end. Not even close. I can’t give up no matter how badly cancer is trying to win. I will keep fighting for my family, for my friends, and most importantly, for Ronan.

I picked myself up off the bathroom floor, showered, and headed to Starbucks before I returned to Sloan. On my walk there, I found myself getting stronger again. I texted my Mr. Sparkly eyes who is so amazingly helping me through all of this, even through all of his worry and pain for us. I told him about my breakdown, and how I took all of this morning to think about things as clearly as I can. How I have decided that I can do this because if I don’t, everybody loses and I am too strong to let that happen. How I won’t let cancer take my baby, my family, my friends or me. I refuse to give in but sometimes I have to breakdown in order to get my strength back. He texted me back something about my unbelievable insight, bravery and compassion. I thanked him for loving me and never giving up on me. I have so many people that believe in me and who know I can get Ronan through this. Last night, I got a taste of cancer winning and it was the most awful thing I have ever tasted in my life. I almost let it win. Today is a different story. Today, I walked the streets of New York throwing fists in the air and refusing to give up. I have too many people counting on me to let that happen. I am a mother and that makes me the toughest person in the world; next to Ronan.

We will be discharged from the hospital this evening and Ronan seems to be feeling better. We have taken him off the morphine drip and he is now wearing a little pain patch on his skin. I know the radiation is working just like this round of chemo is. I know we will get his bone marrow clear again. We will scan Ronan in 2 weeks to see how this chemo has worked. Depending on the results, we will either do another round of the same thing or go on to the NK-Cell trial like we had originally planned. I have come to learn that plans cannot be made when your child has cancer. All I can do is pray to God that Ronan remains pain free, he is happy, and we will take everything day by day. As much as I love a plan and how hard it is for me to let everything go, I have no choice. Every second of the day I have with Ronan is a gift and I have to make every second count. He has no idea his brothers are coming tonight and he is going to be so happy. We have decided that Liam will stay until Tuesday and then fly back to Phoenix with Mimi and Papa. We will keep Quinn here with us until April 3rd, and he will fly back to Phoenix with Woody. Ronan needs his brothers and if it means we have to pull them out of school for a bit, so be it. Our as a time as a family together, getting Ronan healthy is the most important thing in the world. Everything else can wait.

To all of my family and friends calling and texting. I’m sorry if I don’t respond. I listen to your every word but the one thing I cannot handle right now is talking, listening, and reading your words as you all cry and fall apart. It scares me to see you all so scared. I need you all to be strong for me right now and I can’t handle your tears. It hurts me to see you all hurting which is why I promise to be stronger for you. I need your words of encouragement… I cannot hear how your hearts are breaking and I know it is unfair of me to ask that all of you hide your pain, but that is what I need right now. There will come a time when I will be able to cry with you and you’d better believe that it will be because of tears of joy. I refuse to think any other way.

Thank you so much for all of your love that surrounds us and please continue to pray for us, for Ronan. We need all the positive love, light, and strength that we can get.

xoxo

Overwhelmed, Insomnia, Anxiety and more

I’m overwhelmed. What do I want to do when I’m overwhelmed? Go into hiding; hence the ignoring phone calls, blog, texts, facebook, etc…. Sorry to those have been calling and I’ve been MIA. I was so ready to leave for New York today. SO READY. I don’t know how much more of this anticipation/anxiety I can take. I told you all I am a die hard plan queen. When things don’t work out; I become an instant anxiety ridden freak. This is me now. Also, hating the fact that we are just sitting in the freaking hospital, when Ronan has not had a fever now for 2 days, but they still insist on keeping him on these fucking antibiotics even all the blood cultures are coming back negative for any kind of infection. I know, I know, better safe than sorry. I just don’t like my baby having to get more medicine than he needs; and especially when he does not need it. It’s hospital rules, I get it. But my inner rule breaker just wants to take him off all of this crap and take him home. We also need his ANC to come back up; hopefully his numbers will be even better tomorrow.

Woody is working on getting the plane situation figured out. I feel bad for Mr. W…. he is trying his best to work it out for us; but time is money, people. Woody is supposed to call him on Wednesday to give him the for sure word on when we can leave. The doctors have been going back and forth on it. Sooner rather than later please. Mimi and Papa have been coming to relive me during the day; and I do the night shift. It helps so much. Except for the fact that I miss my twins like CRAZY. I’ll never stop resenting the fact that I don’t get to be around them very much anymore. Thank GOD for Woody. He wins the best dad of the year award, hands down. He is giving me the best gift ever just because I know that Liam and Quinn are in the best hands, with the best dad in the world.

I don’t have much more to say tonight except thank you to everyone who has been checking in, dropping of meals (Kati- thank you so much for last week and tonight) I wish I could give you all a big hug. We are hanging in there, we will get to New York sooner or later. I just keep telling myself everything happens for a reason. Even though I have come to despise that stupid saying because there is no reason that my baby should have cancer.

G’nite to all of you beautiful people out there. Sweet dreams.

xoxo

P.S. Because I don’t have a lot to say tonight; mainly because I’m scared of the thoughts in my head; I’m going to leave you with an email from my precious Susie who lives in Colorado. She was in town over the weekend and got to spend some much needed time with us at the hospital. It was the first time I have seen her since Ro’s diagnoses. It meant the world to me. We had the best time, talking, laughing, hugging, and crying. I miss her so much and she will always be like a sister to me. She is so great about reminding me of how strong I am and that I can do this. A piece of my heart will always be with her no matter the distance between us. I love you JYD.

Hi Mama- 

I just wanted to send you a quick note to tell you how much this morning meant to me.  You are absolutely the strongest woman I know.  Seeing you at the hospital with Ronan was pretty fucking intense.  Although I’ve been hearing about everything from the beginning and have been reading about it everyday since, nothing could have prepared me for seeing you two in that setting.  It was scary and very real.  Ronan is a darling angel and I hated seeing him stuck in that bed. With that being said, you are doing EVERYTHING you need to in order to kick this shit and that is apparent even from hundreds of miles away.  I know that very soon things will be back to normal.  Maybe not before you briefly glimpse hell (during isolation for 30 days amongst other hurdles) but very soon nonetheless.  I love you so much Maya.  You are a wonderful mama and your love alone can conquer all of this.  It has to because I said so and I’m the JYD mother fucker!
Stay strong and know that I think about you EVERY SINGLE DAY.
All my love,
Suz