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.


58 responses to “Not a kissing day”

  1. Dearest,
    My heart breaks for dear lil Ronan. I so freaking wish I could send a miracle your way. No child or a parent should ever go thru this. In many ways, you give me strength even at your hardest times. Thank you. I will keep praying for dear lil Ronan. Sending you hugs and love. There are no right words for comfort. Hugs. Praying for Ronan to be pain-free. Love.

  2. I feel like your post tonight is directed…maybe…at some people who may not agree with your thought process regarding Ronan’s journey. Fuck them. You are his mother, and you know what is best. Don’t feel the need to explain yourself to any of us that wait for your updates…we are behind you all the time. No matter what. I know you don’t feel it right now, but you are the most amazing mother. I’m proud that I can call you a friend. I can’t wait to walk beside you and help you find a cure for this awful disease. You have an army of supporters far and wide. You are never alone. All my love. ~ Liv

  3. Praying the RT helps Ro’s painand he’s pain free. Praying you can get the trial.praying for strength, peace and comfort. I love that Ro’s feisty spirit is still there. Fight on rockstar Ronan! No child or parent should go through this! Kisses to Ro!

  4. Ronan is a very strong boy! He is doing everything he can to make you proud of him. 🙂 Maya and Woody, do what you think is right. If you can get him treatment in San Diego then why not go for it? If he’s feeling up to it and the doctors think he can handle the treatment, go for it! Lets get his legs feeling better tomorrow with some RT and get over to SD! Praying for Ronan, always!

  5. Oh, you sweet Mama. I am finding myself staying up later and later every night to hopefully catch your newest post with bated breath of hope for a glimmer of that miracle we all pray is coming. While we haven’t met, I cannot help but experience a tiny fraction of your anguish and heartbreak as you honestly lay out your soul in this beautiful blog. I wanted to tell you that this past year I was diagnosed with Stage 3 breast cancer, undergoing the harshest of surgeries and treatments, while trying to maintain sanity for my husband, one year old and four year old. While I have been to hell and back, I have not cried as much for myself and my family, as I have for your son and your family, and especially for you, the mama. While you may not know all the hands lifting you, please know we are here. There is an army of mothers holding you in their hearts and praying for Ronan.

  6. I think and have never stopped thinking that he will win. I know a lot of people would have given up and just tried to make their child comfortable while they die. It pisses me off so bad the people who tell you that. Maybe that is what they wanted, and I in no way fault them for that. This is NOT what you want and I would do exactly as you are. Why the hell would you not try everything. You have already been on so many “adventures” we’ll call them, what’s wrong with a few more, as long as you think Ro can handle it. I’ve been following you from the beginning through the fabulous highs and for the devastating lows. He always snaps back think about yesterday. That is not a boy ready to give up on anything. I really think you should try San Diego, could Mr. X lone his plane again. This could be the answer and I think its worth a try. Who knows maybe they’ll send you to Vermont and maybe they’ll send you to frickin Moscow but as long as YOU think there is a cure follow your heart even if it takes you to Zimbabwe. You would follow that baby to the ends of the earth and if thats what it takes then you’ll do it. It seems like every time someone counts him out his little spirit rises just to prove them wrong! I love the fight your baby has! He’ll probably beat this stupid thing just to say “told you so” to that frickin doc at Sloan. Keep going and I don’t even have to say it cuz I know there’s no way you’re giving up. Even in your darkest moments I know
    you feel this is not it. Know why cuz IT’S NOT!
    As Lenny Kravitz once sang ” how many years I’ve tried, how many tears I’ve cried but baby it’s not over til it’s over”! And this is not over!
    Sending my love-

  7. Mama knows best–don’t let anyone tell you otherwise! You are AMAZING. You are being the best mommy that any child could hope for. Love and hugs for you all.

    1. said so perfectly!!!

  8. Rita Dickinson Avatar
    Rita Dickinson

    That’s the strength and fighting spirit I have come to love and respect! I’m there with you!

  9. everynight beefore I sleep ım praying for Ronan.. god bless.. love..

  10. You fight on Warrior Mother and do what ever you need to do to help Ronan! I hope knowing that you have thousands and thousands of people from all across the country pulling and praying for you helps give you comfort and strength! I know first hand when it comes to cancer..everything can change in a New York minute! Miracles happen everyday! Continue what you are doing to help your baby and we will all continue to do what we are doing praying and sending you alot of love. Hang in there mama! xo

  11. Maya,
    My thoughts and prayers are with you every single day! I completely understand and support you – if there is any chance at all – it is a chance worth taking!!! I wanted to send you a comment yesterday but I didn’t get a chance. A friend of mine posted on facebook that yesterday was Star Wars Day and said “May the 4th be with you!” I immediately giggled and thought of Ronan, and hoped maybe that would make Ronan smile too. I hope everyday is May 4th for Ronan – and May the 4th be with him! 🙂 Sending much love, hugs, prayers and support, as always!!
    Mom to Tyler(4) and Andrew (2)

  12. “seeing is believing so it is said, but it takes a heart as well as a head”


    I saw this the other day while at my sons doctor appt, and I thought fo you. You and your family know YOUR son like no other.You are an AMAZING mom, fighting for and respecting her AMAZING ROCKSTAR SON!

    -With love from Texas

  13. Therese in Ireland Avatar
    Therese in Ireland

    I’m so sorry that you have to make awful decisions like this but I’m with everyone else here, if you think it’s worth a shot, then go for it. I’m sorry that people are questioning your judgment in any way – they have absolutely no right. I would do exactly the same, fight to the bitter end. Sending prayers for strength and courage and above all else, comfort for Ronan.

  14. Praying for you guys 24/7 and I am a believer in miracles so keep fighting the good fight!
    Love and positive energy coming your way.
    Nancy Weber

  15. Our thoughts and prayers are with your entire family. I hope Ronan got a smile about Star Wars day, he is such a warrior. Hope today brings you answers, comfort, and peace. We are still praying for a miracle. All our love.

  16. Our thoughts and prayers are with your entire family. I hope Ronan got a smile about Star Wars day, he is such a warrior. Hope today brings you answers, comfort, and peace. We are still praying for a miracle. All our love.

  17. Maya & Woody – Praying for your little guy and the entire family all throughout the days and nights. Maya – you are right. God does deliver miracles but the great thing about Him is that he gives us the ability to utilize our brains and hearts to do the best that we can here on earth. You are doing the right thing by searching out every alternative that you can. You and Woody will know what to do. Praying that God will continue to guide, direct, and give you wisom for your next steps. Keep on fighting the fight!!! God bless!

  18. Sweet Maya, it makes me sick that you and your family have to live through this nightmare. I pray for Ronan around the clock. There are many of us doing the same. May the prayers and love wrap around you and your family in this dark dark time.

  19. You and your family are in my thoughts. Ronan has been so brave, a true inspiration as are you and the rest of your family. I am so sorry you all have to deal with this and I am sending all my best wishes and good thoughts out to you guys.

  20. Marcy Shipman Avatar
    Marcy Shipman

    Anybody that tells you that you should give up the fight clearly doesn’t know what it’s like to be a mother that loves her children and will do anything for them!! You absolutely have to go with what you heart and soul (and Ronan) are telling you to do. If there’s even a .01% chance that this could save him or at least prolong his life then you have to go for it if that is what you feel is right. You absolutely have to trust your motherly instinct. Fuck the people who tell you otherwise!! I will continue to pray for the strength that you continue to display as well as pray that this little glimmer of hope comes through and works the miracle that we are all hoping for Rockstar.

  21. Ananda Dasi Nicole Billa Avatar
    Ananda Dasi Nicole Billa

    sang prayers for you yesterday to the Divine Mother in all her aspects and forms. Mary, Gaia, Kali, Durga, Ma. May she fill you with her strength. Will be singing more today.

  22. “Now I lay me down to sleep, healing Ronan is all we seek. With all our hearts and all we have to give, please dear God allow Ronan to live. It’s not his time, he’s way too young, in his families arms is where he belongs.” I say this prayer with my babies every night before. we go to bed. I just hope God is listening!

  23. You are absolutely right, you know Ronan the best and you are the one to make the best decisions for him. He is your baby and he is literally made of the same stuff you are. Pray and watch Ronan, and you and Woody will know what to do. You are wonderful parents and I know that you will do what is best, just as you have all along. Sending love & prayers to all you Thompsons.

  24. Pamela Fanning Avatar
    Pamela Fanning

    Maya, No one has a right to judge you or your decisions. They’re not living what you’re living. This is not their baby boy. You do what you feel is the best choice for your baby and for you! You are the WARRIOR and nothing stands between a momma and her cub!! Girl, Im behind you 10000% and you do exactly what you’re doing!!! Either way no one knows unless they are Ro’s mom and no one else is!! The prayers are coming, and now we need some kick ass medicine with them. I say go for it!!! Give Ro kisses and hugs from all of us who have fallen in love with him. You’re never alone because we are all right here behind you today and everyday!!! Have a good day with Ro and I’m looking forward to some good news! Pam

  25. I sincerely apologize for offending anyone by referring to Ronan as Ro.
    I am just a someone in this world that has been touched by his life. You and your family will forever be a part of my life and you are in my thoughts. I will continue to hope that Ronan’s pain goes away. Ronan is teaching me so much about life. I am grateful to Ronan. I am thankful for his life.

    May 2, 2011 Daily
    The Upside of Irritation
    Things That Annoy Us
    There will always be factors and people that we cannot control; how we respond can determine the quality of our lives.

    There are many stories of spiritual masters embracing the presence of an annoying student in their community. There is even one story that documents a teacher paying an irritating person to live among his students. From an everyday perspective, this is difficult to comprehend. We generally work hard to avoid people and things that we find annoying so they don’t bother us.

    From a deeper spiritual perspective, however, irritation can be an important teacher and indicator that we are making progress on our path. Being able to remain centered and awake even when we feel uncomfortable is much more impressive than doing so in an environment where everything is to our liking. No matter how good we are at controlling our circumstances, there will always be factors and people that we cannot control. How we respond to these experiences to a great degree determines the quality of our lives. The goal of spiritual development is not to learn to control our environment—which is more of an ego-driven desire. And while having some measure of control over our external reality is important, it is when we are confronted with a person or situation that irritates us and we can choose not to react that we know have made progress spiritually. It is when we have mastered our internal reality that we will have become the masters of our lives.

    The more we try to eliminate annoyances, instead of learning to handle them gracefully, the further we get from developing the qualities that come with spiritual growth, such as patience, tolerance, and acceptance. It is often in the presence of people and experiences we find annoying that we have an opportunity to develop these qualities. Fortunately for most of us, our lives offer an abundance of opportunities to practice and cultivate these traits.

    1. I don’t think anyone was referring to you on here, sweet girl! You can call Ronan, Ro, it’s his nickname:) Thanks for your sweet comment and love. xoxo Maya

  26. A high school classmate on facebook posted the link to your blog, and I’m so moved by your story. My heart breaks for your entire family.

    I know you don’t know me at all, but if you make it out to San Diego and you need anything – I would be happy to help your family in anyway you need.

    I don’t know if you can see my email or not but I’d be happy to give you my information so you can contact me if you chose.

    My prayers are continuously with your family! May miracles happen for your sweet boy!!

  27. Good Morning Momma Lion whose roar is heard here on the west coast! I am a fiesty fiery redhead who reads this blog and wants to fight along side you and while I offer prayers that is not enough. And while I raise funds for cancer research, etc. that is not enough. And while I fight my own battles to change the vibration on this planet for me, my son, my family, that is not enough. There is always more.

    I have contacts for you. If you are going to travel to San Diego, my contacts are here in Los Angeles and the San Fernando Valley. I don’t know if they can help you. I do know they are helping save people I love who have cancer one is in her 80s with stage 4 breast cancer that spread . . . NEVER GIVE UP . . . Here they are. You can tell them Nicole Nathanson sent you. I don’t know if they can help Ronan, I do know that it only requires making 3 phone calls. If you would like me to call on your behalf I will be happy to help just let me know at Incidentally all of the western medical doctors treating my friend told her not to do alternative or chinese medicine, she didn’t listen and they are baffled that her tumors are gone, shrinking and her blood counts are up. Follow your heart and your gut!

    Dr. M.M. Van Benschoten, O.M.D., C.A. Inc. 818-344-9973
    Dr. Jim Blechman, MD and OMD (310) 458-2922
    Dr. Jay Yang, OMD 626-281-2258

    and if you do come to Los Angeles, I have an incredible cranial sacral massage therapist who has helped my son — his room is filled with natural wonders and his touch is gentle.



  28. Kerry Embrey Avatar
    Kerry Embrey

    I am Amber Bishop Matus’ aunt. I live in San Diego and would love to help you if you do decide to come to San Diego (if there is anything you need). My email is inspectorkerry@yahoo if you want to contact me.

  29. Of course you know best.

  30. I love what you posted from the grandmother. I have often thought that what people say to the grieving is often more to “comfort” themselves. It sounds like you have more peace going forward with what is available. You are the mom, and with your husband, you know what to do. Medically “Unexpected” things happen in the world of NB; I am praying for that. Our boys share a birthday, mine will be three, so I think of Ronan all the time as I prepare for Elijah’s birthday, and I hope for the day when all NB kids can be free of the disease as my son is. And I know there is no reason why my son should be and your or anyone else’s is not. It is heartbreaking, and to try to “explain it” is wrong.

  31. Maya, I stand firmly behind you. You do whatever you know in your heart is right. I’m so sorry you even had to try to defend your position – no one should even have an opinion besides you and your family. Only prayers and love and hope coming your way.

  32. Keep fighting — as I know you are!!! Both you and Ronan!! I pray the radiation takes his pain away!! And I pray even harder you get the miracle you all deserve. xo

  33. I completely agree with Marcy. Keep fighting!! As long as your baby wants to be here with you, keep trying. I have been praying and thinking about you and Ronan every moment of every day. I have even printed a picture of Ronan and I have given it one of the sisters that come to physio here at work. She too will pray for your, your family and expecially for Ronan!! He has captured my heart to the point where there is no explanation. I pray that the trial is right for him and that his pain subsides. No child should be in pain. As am mother, this completely breaks my heart. I am in Canada, three hours ahead of you and I find myself waking up in te middle of the night just to see if you have posted. Every night before I go to bed, I pray for Ronan and I so hope that he will get his miracle that he sooo deserves. Praying all the way from Canada. If there is anything you need, just let me know. I am close to Sick Kids Hospital and I would do anything to help baby Ronan.
    Always in my heart.

  34. Marquita Ward Avatar
    Marquita Ward

    I pray for change for the better too and mostly that the pain leaves and comfort takes its place.

  35. Nobody that knows you would question you and Woody and the tough decisions before you. You need to do what you need to, for Ronan and for yourselves. I could never judge someone who loves their child as fully and deeply as you do. I have no advice, I have only all the prayers and wishes that I offer up for the Thompsons and the “Thompson’s circle” that you’ve created for yourselves. I love you, Ronan. Maybe it’s not a kissing day but I hope you make a few exceptions 😉

  36. Do what you need to do…love and healing thoughts being sent to you and your family…especially sweet Ronan!

  37. gina dondero-haynie Avatar
    gina dondero-haynie

    you don’t know me but, i feel as though i now know you and ronan. i am just now learning thru your blog, what you and your family have been fighting and praying for. i want you to know that your heart is now and will be in my prayers everyday…..and ronan has touched a part of me that will never go away. xoxo

  38. Maya – you are an incredible and amazing mom and woman. Never give up. You know your child better than anyone else, and no one has the right to judge. My heart and prayers are pleading for continued strength for you and Ronan, the best combined efforts of medicine, science, miracles, prayer and love, and you never having to wonder what if.

  39. Fight, fight, fight and continue to fight. I am praying for all of you. I believe in the power of miracles and a mother’s love.

  40. When You Feel Sad

    by James E. Miller

    Your sadness is real, yet it need not be final.
    You have known deep joy before;
    you can yet again.
    And while your despair brings you pain,
    it can also bring you wisdom and strength.
    From it you will learn secrets about yourself,
    and truths about others.
    Through it you will experience the blessings of healing,
    and the mysteries of life.
    So listen to your despair
    and allow it to lead you to greater fullness.
    And always remember: you are not alone.
    You are loved, whatever happens.
    You have significance, whatever befalls.
    For you are an unrepeatable act in God’s grand creation.
    You are irreplaceable.
    At this moment, your journey in life
    is requiring of you great courage, often unseen by others.
    Be strong in your persistence.
    Be supple in your patience.
    And know: despite your brokenness,
    and somehow even because of it,
    wholeness awaits you.
    Despite what you have lost,
    and somehow even because of it,
    you stand to gain.
    You hold the possibility of experiencing life
    with a maturity, and a compassion, and an appreciation
    you have never known before.
    So be open.
    Know that the life which flows through you
    has been given you as a sacred gift.
    Cherish that gift.
    Nurture it.
    Above all else, hallow the preciousness
    of each passing moment that is yours,
    for this is where the miracle of life resides,
    and this is where you must go to find it.
    Finally, remember that your destiny was predicted
    by the writer of the Book of Job:

    “You will forget your misery,
    you will remember it as waters that have passed away.
    And your life will be brighter than the noonday;
    its darkness will be like the morning.
    And you will have confidence,
    because there is hope.”

    I know nothing anyone could say could ever make this better. I cant even fathom the pain that you feel on a daily basis. But know that we try. we try to ease your pain with our words. When we tell you we love you and Ro. We do. even if none of us know your family. Everyday I wake up I look forward to reading your BEAUTIFUL blogs. And praying that today is the day you miracle happens. God is wonderful and I know that he works his magic im myserious ways. You may not see it but he is right there beside you and Ro!

    Hug Woody, Liam and Quinn let them know when you can that we pray for and love them too.

    ~from a mother who has lost a child

  41. Keep Fighting and Don’t Give Up. Miracles do Happen. You are staying so strong…You are amazing…keep up the FIGHT. Do all that you can Do for him!!
    hugs and prayers everyday for you!

  42. Still praying and loving you all from a distance.

  43. I love ur fight an drive! And as long as he has
    That fight in him U as a mother are doin EVERYTHING’ i admire u whole heartidly! Words cant make it all better but just being there for him the way u are is beautiful! I know ull fight for ur dear sweet Ronan’ and i can read in ur blogs hes not by anymeans ready to let go., hes got a heart of platnum, and has touched so many lives! Ronan, maya, woody and twins ur all loved “To the moon and back”

  44. Annie Johnson Avatar
    Annie Johnson

    I am mad, I am so so mad at God on your behalf!!! I am praying, keeping praying.. My heart is telling me your fight is not done. I agree inhumane is not doing everything that you can to protect your little one. I am so glad that you are not “clueless” to reality but miracles DO happen. I’ve seen it first hand and I believe that Ronan is far to precious to not remain on this Earth. Keep up the good work mom and dad, the whole world is rooting for you!!!!

  45. Fervent prayers for Ro coming from Houston. I can’t stop thinking about him and willing for a miracle. Hold on to your hope!!

  46. Maya-

    I have read your posts and cannot imagine what you are going through. You are amazing and YOU are doing God’s work now. Beyond the heartache that you are dealing with, which is of a magnitude beyond anything we should ever have to experience in this life, you are surrounded by the most beautiful part of the human spirit be it through your children, your nephew your many loved ones, the doctors who have gone above and beyond to do what they can for you and your precious boy. All of these people do this because you are taking on this fight with the courage of an army of a million men and your son is amazing. You are amazing.

    I admire your courage, strength and determination to leave no stone unturned. That is what we are challenged to do intuitively as parents but you have risen to the task without flinching.

    Sending love and prayers for a miracle your way.

  47. Maya:

    My son is in Liam and Quinn’s first grade class. Being that we have just had our own battle with chemo and a bone marrow transplant, I can identify with your feelings on doing all that you can for Ronan. Maya, you are doing what you and your family needs to do for Ronan. You will know when it is time to stop and only you and your husband can make that decision.

    Know that you are in our thoughts and prayers.

  48. Maya & Woody, not sure how you feel about this but wanted to share…

    I would do it for my children, could any side affects be worse than TOXIC Freakin Chemo? If it helped with the pain, and maybe even gave my child the munchies, could that be a bad thing if severely ill & everyone else had given up hope… I would be clawing at every GLIMMER of hope jsut as Maya and Woody are doing!!

    We believe in Ronan xo Sending much LOVE & HOPE from FL.

  49. […] 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 […] […]

  50. Still praying and hoping Ronan can become pain free. Also, still believing and praying for that miracle. You continue to fight…if people judge you ignore them…you know Ronan better than anyone. Sending hugs and positive vibes to your family. Xo

  51. Sandra Brown Avatar
    Sandra Brown

    You don’t know me, but I am a friend of Melody Fairbanks who initially told me your story. I have been following your blog and you will be so grateful for your ability to express your deepest feelings at this time. Not everyone can. I read something today that I thought would be appropriate. “Storms come and they are so personal, they seem to know your address and have a key to your house.” Seems like that some days. Your family is in our prayers and I am sad that you all have to experience something like this.

  52. Your blogs are inspiring and heart breaking. I know you’ve tried everything and are not giving up, good for you! But don’t doubt the power of prayer and miracles. They can happen. 🙂 I have a little girl his age and I just wish there was something I could do. It sounds like you have wonderful friends and family with you. Amen to that.

    I’m sure you’ve tried St Jude. But here’s their website just in case. They shouldn’t have a website, it’s free if you don’t have insurance, and there are some kids with neuroblastoma that have gone into remission there. I’m curious if you had tried them before, and what happened when you did. Hope I was of some help. You are an amazing woman with an amazing family.

  53. the moment my eyes open each day i think of ronan…
    thinking of you, praying for ronan and your family always.

  54. Derrick Kitts Avatar
    Derrick Kitts

    Maya & Woody,

    You both are a miracle to many. Your strength and love for Ronan transcends your personal situation and flows to all who read your blog. You are both amazing. You keep doing what you are doing and know you have so much love and support backing your family. Much love to you from Oregon. Derrick

  55. I found your site as I googled neuroblastoma. My husband and I heard the horrible news on December 2, 2010, the day our son turned 3 that he has neuroblastoma stage 4. As I looked at your pictures, I remember seeing you and Ronan at Sloan. You may recall a 3 year old boy screaming bloody murder (I believe is how you described it in an earlier post …lol) as Ronan received platelets … well, that was my son. It’s so hard to explain to them what is going on. He had just had a bone marrow test done and was not happy!!! My heart aches for you as a mother that is going through the same horrible nightmare. It’s not fair that our children suffer from this horrible thing called cancer!! I find myself researching the internet for any possible treatment, wondering what decisions to make … we want to do what’s best for our son, but seems like no one knows with this monster neuroblastoma!!!!

  56. Still praying for your family…….sending prayers and wishes for a miracle your way

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