No more plans…..just a new adventure

We started off the morning early as we got up and ready to take Ronan to St. Joe’s for his CT scan and RT. Dr. Maze met us at the Ryan House and then over at St. Joe’s just to make sure we were taken care of. He knew Ro did not need anesthesia, but came anyway to be supportive. After he got us settled, he left and we sat back in a room and waited for the CT scan to begin. Ronan did amazing, as always. He held perfectly still as they took pictures of his little body to decide where they would do the radiation today. After looking at the CT scan, Dr. McBride decided that Ronan’s pain is coming from his pelvic and hip area as the bones there have been eaten away at due to the Neuroblastoma. It is with radiation, that the neuroblastoma cells will be killed in hopes that the bone can heal back and Ronan’s pain will get better.

Thoughout this blog, I’ve always had a plan as far as what we would do with Ronan and his treatment. We chose what we thought was right, and I don’t have any regrets in the choices we’ve made; but it sucks when the plan you think you have in place goes arye. I’m done making plans for Ronan. We are going off for another adventure instead. This time, as long as Ronan remains stable, we will be leaving for San Diego on Sunday. Dr. Sholler has agreed to try something else for Ronan and we as parents, have decided to give it a shot. What do we have to lose? At this point, nothing. We are fully aware of the risks involved, but this is not the time to sit back and do nothing because we are afraid. I am more afraid of sitting back and watching Ronan get worse and worse as the days progress. Woody has been on the phone all day with different doctors all over the states and most seem to think this is worth a shot. We will be admitted to The Children’s Hospital of San Diego on Monday and we are praying that all goes well and Ronan can start treatment on Monday or Tuesday.

Here is a little info about Dr. Sholler and what therapy we will be trying for Ronan:

Dr. Sholler’s research focuses on new therapies for neuroblastoma and medulloblastoma. These neuronal tumors continue to be therapeutic challenges in pediatrics. Dr. Sholler has shown that Nifurtimox increases oxidative stress in neuroblastoma and induces cell death and decreases tumor size in xenograft models of neuroblastoma and medulloblastoma. Nifurtimox also decreases AKT phosphorylation increasing the cells sensitivity to chemotherapy. She is presently studying the mechanism of this drug, drugs effecting metabolic regulation and oxidative stress, and determining the best drugs to use in combination.

Dr. Sholler has completed a Phase I trial of nifurtimox. She has opened and is currently enrolling in a Phase II trial of nifurtimox in combination with cytoxan and topotecan for relapsed neuroblastoma and medulloblastoma patients. She will be opening this trial at other sites in collaboration with Dr. Roberts at Children’s San Diego, Dr. Ferguson at St. Louis University, Dr. Zage at MD Anderson Houston, and Dr. Eslin at MD Anderson Orlando. Within this consortium she hopes to bring new therapies through research to children with relapsed neuroblastoma and medulloblastoma.

Dr. Sholler’s lab is working in collaboration with Dr. Jeffrey Bond at the University of Vermont to understand the genomic differences within patients neuroblastoma cells. Understanding the specific biological profiles of patients neuroblastoma will lead to better understanding of the most effective treatment.

I am trying not to get my hopes up, but this just has to work. Our hearts were so broken when we left Chop as we were so sure MIBG therapy was the answer for Ronan. There are a couple of doctors who are advising against doing this, but there are also a few who are saying, “Why not.” Exactly. I’m not going down without a mother fucking fight for my son. I am not going to let him down as he deserves to be fought for like I’ve never fought before. Woody and I are both in total agreement on this; Woody is fighting just as hard, if not harder for our son. We will do anything we can at this point. There is nothing worse than sitting here, watching Ronan die. Because that is what he is doing. At least if we get him to San Diego, and try this clinical trial; the worse thing that can happen is ultimately, what is happening anyway. I don’t want him to die peacefully at The Ryan House while I sit here and just watch and wait. That’s not how this is going to go down. It’s not in our nature and it’s not in his.

As I have said before, we will not be cruel to Ronan and his needs. If for some reason, his pain gets worse within the next few days, we will of course re exam our decision. As of now, he is stable, his pain seems to be controlled, so we are going to take a huge leap of faith and do this. But it is not a plan at all. Plans always fly out the window. We are just following his lead on this journey of his and will do whatever we feel in our hearts that Ronan wants us to do. We want to take the twins with us, as we feel this is no time to be apart as a family. We need to be together for this part of Ronan’s journey. I’ve had enough of leaving them behind and so has Ronan. As long as we are together, Ronan will be happy and that is all that matters right now.

I got out of The Ryan House today and went to the twins’ baseball game. It was hard for me to be out in the real world, as always, but I did it for the sake of my twins. It’s hard for me to hear the conversations of others around me now as I hear bits and pieces of people complaining about the petty things in life. If they only knew how good they all have it. I kept thinking to myself about the baby boy whom I left back at The Ryan House, who is so sick with cancer and how we as parents, have been told that there is no chance for him to be cured. How am I supposed to go out into the real world anymore without it hurting so badly? All I wanted to do was run back to Ronan, to kiss him for the millionth time, tell him how lucky I was to be his mama, how sorry I was that he was hurting so badly, and promise him that we would get him better. I have been making this promise to him since day one. I did today for the sake of my twins’ but the sadness I felt while I was there was unbearable. Ronan should have been there with me, running around, getting dirty and watching his big brothers, play ball. I would give anything in the world to have those carefree days back with him.

I cannot sit here and wish for the past back though. The past is gone as we know it and we have to focus on the here and now and what we need during this time as a family. What we need is to be together and to continue to fight for Ronan. Each day that we don’t, we get closer and closer to losing him. He is just too special of a little boy to let go so easily. This next part of our journey is going to be hard, due to Ronan not feeling well anymore; but I know as a family, we can get though it. I’ve always loved the saying, ” Adventure is the spice of life.” It’s time to take on this new adventure and tackle it together with all the love in the world that surrounds us. I’m not giving up on hope, love, faith or Ronan. He is my baby and I know him best. I am going to listen to my heart and soul on this and we are going to turn this thing into the most positive adventure yet. If my son is going to die, it is not here and it is not now. I’m not accepting that this is the way he is supposed to go.

We have to be at the clinic early tomorrow for blood work and I’m assuming platelets for Ronan. I am also going to try my hardest to go to the twins’ school for the Mother’s Day Tea. Their little hearts will be broken if I do not show up. I have to be there for them and as hard as it is for me right now due to never wanting to leave Ronan’s side; I cannot let them down.

Ronan is sleeping peacefully so I am going to snuggle up to my little bug. Thank you all for sharing our story and loving us so much. I’ve tried my best to keep up on your comments as they mean so much to me. I am in awe of the love that surrounds us and will be forever grateful and inspired to be a better person because of all of you. So many of you love us without even knowing us. You’ve taken a leap of faith on our family and I feel you fighting right along with us. Thank you so very much. Sweet dreams my darling friends.

xoxo

Not a kissing day

I sat here at The Ryan House all day with Ronan, rubbing his little leg that is hurting him so badly. We had a lot of visitors in and out. Ronan slept most of the day while I had the chance to sit in our room and see a lot of friends and family. I was hardly awake when Niki came by. She sat by me on my bed and held me while I sobbed in her arms as I knew I would the minute I saw here. She brings out the raw emotion in me for some reason. I held on to her and stroked her insanely gorgeous red, wavy hair that I am so in love with. After I let go, she sat by me and rubbed my back and I think I fell asleep again. Her visit was so peaceful. I had lots of other visitors…. Melissa, Patty, Sarah, Auntie Karen, my Aunt Sheri, my sweet cousin, Shannon, my mom, Jim, Liz, Olivia, Luke, Heidi, Stacy, Fernanda, Tricia, Tiffany, Dr. Maze, Katie, Addison, Lane, and I think a few more of the cousins. It was busy here but Ronan didn’t seem to mind.

I spent a lot of the day, curled up with Ronan, thinking, thinking, thinking. It’s not a fun place to be right now. Woody and I met with a doctor today about getting Ronan in over at St. Joe’s tomorrow to do radiation on his legs. It will be  a one time treatment, and we are hoping it will subside his pain. The pain medication he is on is just not cutting it. Woody and I both decided he can handle it as we know how strong he is on the inside. It will be fast and painless and we are praying it will give him a little relief. The pain is swallowing him whole as he cannot even move out of bed and even me carrying him to the bathroom is torture to my little guy. I cannot just stand back and do nothing if there is a chance this may help him.

Woody has also been in contact with Dr. Sholler from Vermont. She has a trial that has opened up and I am not going to say much as of now; but if we can get Ronan comfortable enough with his pain, we are talking about making the trip out to San Diego to start this 5 day treatment. We have sat all day and weighed our options. I get that my first priority is keeping Ronan comfortable, peaceful, and happy. But as of now, he is none of those things. I am not foolish and I am not unrealistic. My child is dying right before my very eyes. I do believe in the power of miracles, but our miracle is not going to come in the form of him, lying in this bed, while I sit back and do nothing. I know that God is not going to open up the heavens above and heal my baby. This cancer is going to eat his little body alive and as of now, I am just sitting back and watching that happen. That to me, is not acceptable. I am loving him with everything I have; but if someone out there is willing to take a chance on Ronan, I believe I have to take it. His miracle is going to come in the form of medicine combined with the power of prayers. But prayers alone are not going to save Ronan.

Woody and I have not made any decisions as of yet. Obviously we have to weigh the pros and cons very carefully. But as I said in the beginning, I am not going down without a fight and neither is Ronan. It is just not in our nature. By sitting here and doing nothing, I feel like we are not fighting if there is even the smallest chance that this treatment could help Ronan in any way possible. If this doctor ends up telling us no, than we will accept the time left we have with Ronan. If I know in my heart that Ronan is ready to give up, then I will not push him. I know he is not there yet… I know the soul and spirit of my child and he is not ready to go down so easily. How can I possibly give up on that if there is the slightest ray of hope? It is eating me alive just sitting here, and doing nothing. Loving him is not enough if I can still be fighting for him and his life. I cannot let him go yet. I still feel in my heart that it is not his time.

So, the word inhumane has come up a couple times tonight. I’ve decided it’s a word that should not be associated with parents who are fighting for the life of their child with all they have. I believe to do otherwise is inhumane. We only want what is best for our son and we are struggling to figure it out. We as parents do know that we have to know in our hearts that we have done everything possible for Ronan. Even if the outcome turns out the same. So, as parents we will take the next few days, to watch Ronan carefully and make the decision that we feel is best for our family. If we do decide that enough is enough, it will be because Ronan has led us to that decision. This is still his journey, his life, and we will respect that. But it will not be without exhausting every possibility. We do not want to put him though anymore, but how do you give up when there still may be a chance???? I don’t think that you do. I know my child better than anyone, and today when I tried to kiss him and he yelled at me that “It’s not kissing day!” I knew right then and there that his little feisty spirit still exists. It’s my job as a mom and as the adult to help Ronan fight for I know what is in his soul. He does not want to leave us; he does not want to be anywhere else. We deserve our son, Liam and Quinn deserve their brother, and I am not throwing in the towel. I know this disease well enough now to know that things can change in an instant. I just pray that they change in an instant for the better and not for the worse for us.

We will start off tomorrow of a CT scan of Ronan’s little body, that is so badly beaten up and bruised. We will then do his RT without his anesthesia. I talked to him about it tonight and he said he will do it and make Dr. Maze proud and not need any sleepy medicine. The only thing I worry about is keeping him comfortable enough. I know he can do it, he will push through the pain if he has to. This is something no child should ever have to go through and I am beyond sick about it. Looking at Ronan’s banged up body makes me shutter. Listening to the sounds of his screams from the pain is something I will never be able to get out of my head. I swear to god on my life I will fucking live long enough to see a cure for this awful disease. I swear to god I will do whatever I can to help find a cure so no child has to suffer the way I have had to watch my son suffer. No child deserves this pain and no parent deserves this heartbreak.

That’s all for tonight my peeps. Sweet dreams to you all. G’nite my Fernanda. I miss you so much already.

xoxo