Sick.Mad.Angry.Scared. This effing sucks.


I’m consumed by this. I’m consumed by Ronan’s disease. I research whenever I get a free second; doctors, hospitals, treatments, other kids, side effects, medicine’s, anything and everything I can get my hands on. I have to because I can’t look back at this and regret that I did not do enough. I can’t even focus on my twins anymore. All I care about it trying to find the answer or a clue to saving Ronan’s life. I am consumed and it is not a fun place to be. It is dark and lonely and I can’t stop. I’m like an addict and Ronan’s Neuroblastoma is my drug. I want to be able to enjoy things in my life, but I can’t. I think about him and his disease even when I sleep. I am on research overload, exhausted, and cannot focus on a thing. Every second I am away from the computer and doing something else, I am filled with too much guilt. I know there is only so much I can do… but if I stop, what if I miss something really important?? A piece of information that could somehow help us. I need to stop. I am going to drive myself crazy. I just love him so much. My heart is shattered into a million pieces and I don’t know how to put them back together. I am angry, sad, mad, scared, weak. Why him? Not him. This still cannot be real. I am so overwhelmed with everything in my life..even the simple things like Liam and Quinn’s homework at night. They deserve so much better than what they are getting at home right now. Everyone is on pins and needles. I’ve got to find a way to do things better around here. I yelled at my mom tonight. She was just pointing out the facts… like how stressful our house is. I yelled at her and asked her what did she expect? I shouldn’t have done that, but for some reason it is easy to take my anger out on her. I guess because she’s my mom and I feel comfortable enough with her to do so. It’s still not right…

I watched the evening news tonight with Katie Couric. They did a segment on Neurblastoma. The girl featured on it was Hayley Kudro. She is 6 and is towards the end of her treatment for Neuroblastoma. I sat and watched her story and cried. She is so beautiful and strong. She is really responding to her treatment and it sounds similar to what Ronan will be doing. He will be doing the immunotherapy as well as some other things that are supposed to increase his percentage of survival. I copied the story that was on the news tonight. You can read it below.

Neuroblastoma is the most commonly diagnosed cancer for babies in the first year of life. It’s an aggressive disease and less than half of its victims survive. But there’s new hope in a new treatment. CBS News Contributor and Neurosurgeon CNN’s Dr. Sanjay Gupta reports on this promising therapy that’s already saving young lives.

Kindergarten was supposed to mean new friends and ballet for 6-year-old Hayley Kudro. But she said she wasn’t eating well because of her tumor. “It filled up my whole belly,” Hayley replied. 

Instead, she’s spent the past year enduring toxic treatments for a cancer her family had never even heard of.

“We didn’t really have a choice,” said Haley’s mom, Karen. “It was do this, or lose her.”

Last year, Hayley was diagnosed with neuroblastoma – a cancer of the nervous system. It was the most aggressive form: she had a softball-sized tumor in her belly that choked her liver and pancreas.

“Without treatment it will grow and spread and kill the child within a matter of months,” said Dr. John M. Maris, of The Children’s Hospital of Philadelphia.

Hayley had the standard treatment including chemotherapy, major surgery and radiation. But she’s also receiving a drug treatment called immunotherapy – designed to rev up her own immune system to kill the cancer. The immunotherapy drug not only stimulates the child’s immune system, it attacks tumor cells.

A new study of 226 high-risk patients like Hayley found that adding the immunotherapy to the standard therapy improved the survival rates by 20 percent. It was so effective, the trial was stopped early.

Gupta asked Maris, “How often do you get to say in cancer research, ‘wow, we’ve found something that works, maybe even cures?'”

“This is one of those moments where we’ve proven a therapy makes a major difference,” he replied.

This is an expensive treatment, costing up to $40,000. Its side effects are relatively mild, just severe flu symptoms once a month during the treatment.

Immunotherapy will be added to traditional treatments in a variety of cancers including breast cancer, melanoma, and kidney cancer.

Hayley is back in first grade. Doctors believe her tumor is gone. Thanks to immunotherapy, it may not come back.

This is all I can write tonight. I have a raging headache and have been throwing up off and on for a couple of hours. Sorry for the gross details… nobody wants to hear about my puking. But this is my blog and censoring what is going on with me is not going to happen. Ronan is asleep due to not napping today and I am going to turn everything off and go to sleep too. We have a very busy day tomorrow with getting his scans done. Thanks for visiting my blog. Please help me spread the word about Neuroblastoma and send this to everyone you know. Thank you<3

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18 Comments

  1. Danielle

     /  September 29, 2010

    I hope tomorrow brings you peace after your day today. Love u and this does effing suck…

    Reply
  2. Rita Dickinson

     /  September 29, 2010

    Maya –
    You are doing everything absolutely right and then some! Hang in there. I know you are exhausted, but I remember a friend saying to me during a difficult time, “We have to fight for our kids.” You are doing that so well.

    Reply
  3. Joyce kingsley

     /  September 29, 2010

    I do not know where you are in your faith, but I do know that God is the answer to your questions..that Jesus “paid” for the healing of each and everyone of us, no matter who we are!! I will pray that you find Jesus, and that He brings the healing to your loved one that is so desparately needed!! I had a son that died of a cocaine overdose twice on the er table, but God rose him up after 11 days in a coma…. his kidney’s were completely healed, from needing dialysis three times a week, he walked out of the hospital about 2 weeks after that “fateful” night at the er. God has a plan, and nothing, not even satan himself can stop, if we would just put our trust in Him (Jesus) and know that He loves us, and “sees every tear” that you have cried!! He is ready to help, He is just a prayer away!!:) God Bless you and yours, remember, all you have to do his ask!!!:)

    Reply
  4. Candyce Lindsay

     /  September 29, 2010

    Maya, I look forward to hearing you share how you looked back on this challenging time thanking God that you all made it through. I believe blessings are on the other side of the fear and frustration you are feeling. I will continue to pray for peace for you.

    Reply
  5. Cindy Cook-Sherrell

     /  September 29, 2010

    Maya and Family~

    I stop by from time to time and catch up on how Ronan is doing. He is an amazing little boy who has made his way into my heart, but he is not the only amazing one. I watch your strength, even when you don’t feel strong. Your determination to do everything you can for your darling lil boy and family. Ronan is not the only fighter. He is lucky to have you on his side. I am praying for positive results for Ronan tomorrow. Take care~ Cindy

    Reply
  6. Shelley Willis

     /  September 29, 2010

    Maya you are amazing! I don’t know how you keep going! Ronan and Liam and Quinn and Woody are all luck to have you on their side.
    I pray that you can get some rest and find some relief from your stress. I pray that you feel God’s arms holding you right now. Nothing is happening to you without first going through him. He is there for you and he is catching your tears! (I have never met you, but I know you through my niece Sandy Fromm) God bless you and your family!!
    Much love!
    Shelley Willis

    Reply
  7. Charisma

     /  September 30, 2010

    Maya,
    Feelings are necessary. The fact that u r angry is perfectly justified. Ur pissed. So get mad! Go rip a pillow, pummel a kick boxing bag, go for one of ur long runs. Release, release, release. You are not in control. Put your faith in your higher power. Your higher power has you. Your not gonna miss anything. We are all resourcing together. You are not alone, you don’t carry this burden alone. The information you need will not pass you by. I promise Maya. I PROMISE!
    C

    Reply
  8. I wish your family blessings, healing and peace.

    Reply
  9. Kim Carpenter

     /  September 30, 2010

    You are very brave even though I’m sure you don’t feel that way. I am Charisma Carpenter’s sister and she told me all about you and your family. You will be in our prayers and if you ever need anything, we live in Tucson which is just a stone’s throw. You don’t have to do this alone.

    Reply
  10. bobbi

     /  September 30, 2010

    Hi Maya, I am a friend of Kay and Charlie’s at ASU. As one of your prayer angels, I wanted to write earlier, but words never seemed adequate. I am so very sorry for your difficult journey. I wanted to share something my 22 year old son recently told me that gets me through some days. He said – “mom, today is the best day of my life. Do you want to know why? Because yesterday is gone and tomorrow is not promised.” I make an effort every day to try and live by his philosophy, – similar to you and your research – so I don’t miss out. I wish for you many precious moments in each and every day. Thinking and praying for you every day, love, Bobbi

    Reply
  11. Heather Baumann Kau

     /  September 30, 2010

    Maya I don’t know you personally- but I went to school with Woody all the way from Kindergarten through HS Graduation and I know that he is a great guy with a kind spirit. Please know that as we pray for your little Rockstar, we are also praying for you and Woody and strength in your marriage. I know personally that stress with your children can either bring you closer, or draw you apart. My daughter was born with cranial synostosis, 6 weeks prematurely, and the in first year of her life PCH saved her life, then cut her skull apart from ear to ear and reshaped it so her brain could grow normally and prevent brain damage. She is now doing well, but I regret not taking more time to love on my husband during that time of endless doctor appointments and surgeries.
    Please don’t be offended by this- but it seems that by a lot of your blogs here that maybe you guys need a little private time. Away from every one- including Ronan for just an hour or two. And a break from visitors in your house for just one day. Make it a “normal day”. And just love your family. Tell your husband what you are writing here, and turn off the computer for just one day. It will be hard probably, but SO worth the effort!
    Praying every day, and sending our love :)
    the Kau Family

    Reply
  12. Edwina (Edi) Garcia

     /  September 30, 2010

    Hi Maya, We have never met but I met your husband and Jay who works with Manny (my husband to be) and just wanted to send you a quick note. Although I have never met you or Ronan, he is in my prayers. You are a Rockstar Mom! I will continue to pray for Ronan to beat this and for your family.

    I hope today is a good day :)
    Edwina

    Reply
  13. laura

     /  September 30, 2010

    Maya, we love you guys. stay strong.

    Reply
  14. Sue Brigman

     /  October 1, 2010

    Dear Maya, You are so incredily strong, and I’m in such awe. Don’t feel guilty about having bad, weak, or angry days. Like some have written above me, take a day, or just a bit of a day off from blogs, research, etc., be with your Woody and boys. Hug them tightly, and will you feel hope, warmth, and happiness. You so deserve even a tiny break. Prayers, Sue (friends of your Mom & Jim

    Reply
  15. Please feel free to contact me-Ava was diagnosed with stage 4 neuroblastoma feb 09 at pch. She is currently on the 3F8 protocoal at mskcc but is seen at pch when we are home in arizona.
    I am so sorry to hear about Ronan and will add him to our prayer list. Hang in there-its tough the decisions we as parents must make. You will make the right decision for your son-both hospitals are great and have your sons best interest in mind.

    Reply
  16. Marcy Shipman

     /  October 1, 2010

    Saying lots of prayers for Ronan and your family today. I know yesterday was a big day for him, so hoping you got the answers you were looking for. Please Lord, we pray for your healing touch on this little child and all the other children who suffer, remove this sickness from them in the name of Jesus. Praying for good news on your next update.

    Reply
  17. humberto

     /  October 1, 2010

    I’m sorry haven’t chat via email yesterday my wife and i , had our anniversary 15 years sadly i couldn’t spend time with her in the morning. I went to a friends house at around 2to3 in the morning at lake Elsinore i saw many thunder lightening. my friend didn’t want me there i left got lost on a light turning left i hit the middle curved so hard the i thought i wrecked the new voyager van the i bought for our children and nieces & nephews oddly that corner light is next to The Mustangs School. I was able to get triple AAA with help from a driver named Walter he called for me.Got towed back to my friends house in Lake Elsinore, fixed the tired got lost again asked about 5to7 different persons how to get back the 74 Lake Elsinore highway back to San Juan Capistrano, finally found my way back. Long Story Short. Went to a Hospital got back slept and here i am. I didn’t thought about this, the lighting everyone saw yesterday was a sign of hope for Rock-star Ron an expressing lighting the night for Ron an. THERE WAS LIGHTING 1TO 16 DIFRRENT TIMES THROUGH OUT THAT MORNING AND LATER IN THE EVENING AFTER LIGHT SHOWERS A BIG SMILE OF A RANBOW WITH THE COLORS GREEN WHITE & RED. GOT TO GO XOXO. THAT MORNING WAS THE 30th OF SEPTEMBER BYE XO

    Reply
  18. Hi Maya-we do not know eachother. I was given your blog address from a friend. We live in Kelso, WA. My son was diagnosed with Leukemia May 7th 2010. Just like you we have had to make hard decisions about studies or not and choices to give similar medications after severe anaphalactic shock. None of this is easy. None of this is anything we or our kids asked for. It is unfair and feels that way all of the time. I appreciate how honest and real you ate with your blog. It has helped me to open up more in my blog. In the beginning I was so worriwed with my blog who I would offend, but it has got to be my way to truly let people know how I am feeling and coping. Thank you for that. I have read nearly all of your posts, but this one hit home for me. You talked about blowing up with your mom. Probably around the same timeline in treatment my mother in law was down and talked about how stressful our house was. It was a stressful time. My husband and I during the time felt tired of being judged and expected to act a certain way, and sometimes parenting and disciplining your child with cancer is hard. I know how you feel. You have an incredible amount of support and love. You and Ronan will make it through this. We are thinking and praying for him. If you are interested in reading our blog our blog address is therobarges.blogspot.com.

    Reply

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