On to the next step…. Transplant here we come!


Wasn’t a lifetime ago that I was sitting in the cafeteria with Auntie Karen, E.J. Tricia, Max and Woody as we went over all the options for Ronan? Wasn’t it a lifetime ago that I had to leave the table because I was hyperventilating and Tricia followed me and I told her there was no way I could do this?? How could it be possible that so much could change in the blink of an eye, and here we sit 5 months later with everything on paper, telling us the results from Ronan’s scans.

Bone Scan- No definite focal abnormality

Bone Marrow– No definite focal abnormality

PET-CTMIBG– Still has a small amount of activity in his knees, pelvic bones, shoulders, and spine but it has greatly diminished.

MRI– No abnormality in the brain.

24 hour urine test- negative for Neuroblastoma

This is good news. This is a huge victory for Ronan. But I still cried. I cried because I am his mother and I just wanted everything to be gone already. The doctors did not expect Ronan’s results to be any better than this, due to how tough this cancer is. That is why we will do the Stem Cell Transplant, Radiation, and Antibodies. Yesterday was a hard day though. I called Fernanda first… because it was her words I needed to hear. She let me cry and then told me all of the reasons why this is happening, how fucked up it is, but how this is Ronan’s journey, and I cannot compare it to anybody else’s because he is so different. She told me how lucky we are that he is responding so well, as unfortunately, some children do not respond at all. He is on his own path and is going to do this his own way. She is so right. I felt better after talking to her and made a couple other phone calls. I was running late to my hair appointment and was a mess by the time I got there. My sweet hair girl, Katrina (the one who shaved Ro’s hair for me) knew something was wrong as soon as she saw me even though I told her I was fine. 10 minutes later I was bawling in her chair as she wrapped her arms around me and held me. I told her about the scan results and what we had coming up. She is the best and is so good at letting me vent. Thanks, K<3 Love you.

Don’t even get me started on the fucking Audiology test yesterday. We had to finish it up and when we were done, the asshole Doctor looked at me and started saying things like, “Definite hearing loss, it’s permanent and will never come back. You may want to consider what kind of quality of life you want for him.” I wanted to reach across the table and strangle the mother fucker. The way he delivered his “news” was harsh, cruel, and just plain rude. I felt like I was sitting back in Dr. Robinson’s office for the first time having Ronan’s eye looked at when I ended up walking out of the appointment. I tried to argue with him, but his results are his results, he said.  WTF ever. I will not be going back to see him again. We know Ronan is going to have high pitched hearing loss, and big deal, we can deal with that. This guy made it sound like Ronan’s life was now going to be completely ruined. This is not the way you present your findings to a mother who’s child has cancer. We’ve got enough on our plate as it is and this is the last thing I’m concerned about right now. I’m made my complaint and will continue to do so against this asshole. If you are going to be so cold and ruthless, you should not be working with children.

Ronan has been in a happy mood since we got home yesterday. This will be his last weekend here for awhile so we are going to soak it up. He has no idea yet what is coming up next. How do you explain to a 3 year old that they will be going into isolation for god knows how long?? You don’t. I will tell him on Wednesday night, as little as possible and try to explain it in the most kid friendly way I can. I have a lot to get done before Thursday and thankfully my therapist squeezed me in on Tuesday. I’ve got to get myself ready as well as Ronan. We will meet with Dr. Adams on Tuesday to go over everything. I am excited. Excited that we are moving forward and that Ronan is doing so well. I am excited to get this Stem Cell Transplant done and give my baby a whole new immune system free of this evil cancer. He is going to have another birthday to celebrate once he gets his immune system. He will be the boy  with the most birthdays ever;)

This weekend we have the twins’ basketball game, my mom and I are having lunch with my dear friend, Lisa, Woody and I are going to Tricia and Max’s tonight, and tomorrow night all of my sweet girlfriends are kidnapping me for a dinner out send off. So excited to see them all!!!! It is going to be a great weekend and I am going to enjoy every second of it.

I hope you all have a wonderful weekend!! Thanks for checking in and spreading the word about our little Rockstar!

xoxo

GRRRR… New York Miss Macy! Mama Bear is in full effect. LMAO!!!!!! I totally think this will keep me warm in the hospital!! Love you my crazy friend!!

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11 thoughts on “On to the next step…. Transplant here we come!

  1. Nichole Baca

    YEAH!!! I have been checking your blog relentlessly waiting for the news that it was time to move forward!! The results sound like Ronan is kicking Cancer’s ass, 1 day at a time! I know this is no easy step (being in isolation) as I have watched a very close friend go through it, however we all know that this is the beginning to something AMAZING for little Ronan! I will continue to pray for your beautiful family and Ronan daily!! Keep your spirits high and continue to take the help from others..you have so much on your plate but you are so lucky to have the amazing friends and family that you do. Thinking of you from Southern California…Nichole Baca

  2. Unknown

    I have been anxiously awaiting your post! I am so happy to hear the good news of all of his scans. I would just like to say to you that I am sure this is as hard on you as it would be for any mother. However, the grace with which you are handeling it is inspiring! It encourages me to be a better mother to my almost two year old. Thank you for that!

  3. Marquita Ward

    Yes, I have dealt with a few doctors who seem to have no compassion in them. So sorry you have to meet up with some. I come against the spirit of no compassion..in the name of Jesus. His blood shows true compassion and will forever be there for you in all your trials. Do not let these people get you down. I know you won’t…always praying for all you are up against…Lord kiss Roan with healing…complete healing…in Jesus name amen. Ps 103:3…He forgives us and heals all our diseases..

  4. Laura K

    Sorry about your experience with the bad doctor (I have seen my share). I know the situation is not the same thing at all, but I have had high frequency hearing loss since the age of 11. The doctors could never pinpoint the cause, but I know I had a really bad ear infection that same year. While it has led to some awkward (more often funny) moments, I can’t say it’s really had any obvious negative impact on my life. I hardly notice it. I mishear some words and the doctors have recommended a hearing aid (which I keep resisting because of the cost and inconvenience), but honestly I see it as inconvenient as I do being 5 feet tall and unable to reach things easily. Being young at onset, I always saw it as much a part of myself as the color of my eyes–not defining, just another descriptive. I am still the first to jump out of my skin from a sound sleep when one of my kids coughs in their sleep. Also, I have sometimes used it as an excuse to pretend I didn’t hear what I didn’t want to (watch out for that when Ronan is a teenager!). Not to any way trivialize or diminish what you are going through, but in my experience with hearing loss, it has really only been an occasional hassle (and more to others who are trying to talk to me and not myself!)and definitely not life altering. It bothers my mom more that I have it than it bothers me because she couldn’t protect me from it (and that will probably always be true for you and Ronan).

    Anyway, I’m still praying and glad to see some positive results! You guys (and along with your post about Julien Collot)inspired me to finally sign up to be a bone marrow donor; I am just waiting for my kit to arrive. Best of luck with all your preparation for isolation.

  5. Michelle Hobbs

    I was so glad to see your post also…if people reading your blog were anxious to hear the test results I can only imagine what the waiting was like for you! Hope your Saturday has gone well 🙂 xomichelle

  6. Molly Nygren

    Hi!
    I just wanted to thank you for your posts about your rock star. He is an inspiration to as just as Layla Grace is while I go to nursing school. I love your honesty about your journey. Keep your chin up, keep fighting those retard doctors that have no common sense and Keep fighting Ronan!

    Ronan is Forever on my mind,
    Molly

  7. Andrew

    Dont worry about high pitched hearing loss. As you age, you lose it anyway. Ronan just lost it a little earlier than the rest of us. He will be fine.:-)

  8. Alyssa Crews

    It’s great to hear that Ronan has had a good weekend at home. Keeping him in my prayers for the Stem Cell Transplant that will help rid him of cancer forever! And yeah, oh heaven forbid if he can’t hear the ultrasonic ring tone on his cell phone one day, like that is such an important aspect in a high quality of life. Like you said, WTF ever!! That guys a real jerk. He can shove it. Props to you for not strangling him…I can’t say myself that I’d have been able to resist. You are an amazingly strong woman. Keep it up! Sending love…
    Alyssa
    COLE Prayer Team

  9. Jennifer Benedict

    I just woke and as I do every Morning I went straight to my computer to see how Ronan is doing, this morning all I can say is Thank You God for diminishing that beautiful baby’s cancer enough so that the Stem Cell transplant WILL work!
    God Bless you all see you tomorrow morning xo

  10. Sue Brigman

    Happy, Happy Valentine’s Day, Ronan and family! I have been so excited to hear all the good news that’s been coming from your blog (except the nasty, mean audiologist), and am so hoping that Ronan Rockstar will be well enough to come visit his family in Longview this summer (or whenever!), and play with our three grandaughters, who I think rate pretty high on your Mom’s favorite customer list. One is especially entranced with your Mom, and she’s Ronan’s age. They love music, dancing, singing and rocking out, and I know they would love to meet a real rockstar! About the high pitched hearing loss, I was diagnosed with that quite a few years ago, and it hasn’t affected my normal hearing or speaking in any way. That’s what I wish for Ronan.

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