Tag: Hematology

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-CT– MIBG– 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!!

Staying sane… or at least trying

Today was an easy day. It reminded me of our old life which was nice, but bittersweet as well. We spent the day at home and ran to the hospital for about an hour. Then we went and got shaved ice and headed to see our favorite friend, Halle, at our dry cleaners. It was a quiet day around the house until the twins got home. We spent the evening playing and laughing. My friend, Bethany, dropped off dinner. It was very therapeutic to see her. She is someone I don’t know very well, but I feel like I do. We grew up in the same town, I was friends with her younger sister, and Bethany and I connected last year though Facebook. Her little boy, Madden, went to preschool with Ronan. She was trying so hard to hold it together for me, but we both ended up crying a bit. It was nice to talk to her, to hear how her family prays and thinks about us everyday…. it was nice to have a bit of my home in front of me.

Liam and Quinn had basketball practice tonight and are still gone with Woody. Ronan is already fast asleep. I kept myself busy tonight picking up the house and venting to my father about some things that are bothering me. UGH. I am tired of keeping things inside and he made a comment to me earlier today that upset me. I called him back and told him I thought he was being insensitive. I should have just let it go, but I couldn’t. I think it may be best to separate myself from some people for a while. I can’t deal with the day-to-day drama anymore. I am tired of having people compare what they have went through in their life, to what we are going through. For most people, life is what you make of it. It’s called choices. We didn’t have a choice with Ronan getting cancer, but we do have a choice of how we can handle it. I am trying to stay sane and focus on my beautiful husband and children. I am trying to focus on all the positive things like how well Ronan is handling everything. I see a light at the end of the tunnel because I know Ronan is going to win. My beautiful baby will not be destroyed over this disease; we will get him through this.

Tomorrow we have a big day. We check in to PCH at 3:00 for Ronan’s scans. He has an MIBG, Bone marrow, and MRI. I told Ronan today all about coming back to the hospital tomorrow because I wanted to prepare him for his long day. He told me it was o.k. and asked if he was going to get put to sleep by Dr. Maze. I told him yes, and he said it was o.k. because, “He’s so nice, mama.” It was really sweet. Ronan is getting very used to his new way of life. It still makes me mad and it’s still not fair but I am thankful that my angel baby seems to be coming to terms with it and is accepting that this is just the way his life has to be now. I hope he understands that it won’t be like this forever. Someday, we will have our beautiful life back, and we are going to appreciate everything so much more. Sometimes, I think I am lying to myself when I say that because I did appreciate all the things we had. I guess it is a lie that I am going to continue to tell myself throughout this whole ordeal because thinking that life is going to be so much sweeter and better after all of this gives me strength and pushes me forward.

Today when we were at the hospital, Ronan asked me where Auntie Karen was. She is out of town for the week on a much deserved, fun, vacation. He told me he wants to see her and misses her. I told him I miss her too, but we will see her next week. We love you, Auntie Karen. We hope you are having the best time and Ronan can’t wait until you get back so he can tease and love you. Goodnight to you all out there… I hope you are hugging your loved ones extra tight, every night.