Tag: Sharon Deny

This is what I wish

 

I wish that I could sleep the entire night without waking up 50 times. I wish that my baby wouldn’t wake up as early in the morning because is little arm is hurting so badly. I wish this was me and not him. I wish that there was a known cure for this disease. I wish that I didn’t make my best friend cry yesterday because she was so worried about me. I wish I could take my twins, friends, and family all to New York. I wish Ronan did not have cancer.I wish my husband never doubted how much I love him. I wish Ronan’s cancer was going away. I wish no parent ever had to endure this kind of pain. I wish for my old life back. These are the things I wish for everyday of my life.

Yesterday, I took Ronan and Quinn to the clinic. We saw “A” and Ronan said his goodbyes. We had a picture day with all of his favorite people…. Sharon, Dr. Maze, and “A.” Turns out, we have to go back on Wednesday but we won’t get to see “A” or Sharon again, but we are hoping to see Kristen, Patty, Dr. Adams, and Elaine so we can tell them goodbye since we didn’t get to yesterday. I talked to “A” forever about Ronan’s arm pain. She told me she is almost positive that it is disease related. The only thing that is going to help is getting his next round of high dose chemo going on the 21st. I hate that there is nothing we can do until then. I can get him to take pain medicine if he is really hurting, but he hates taking it and puts up a good fight about it. The stubborn little guy would rather suffer. After the clinic, I dropped the boys’ off at the movies with Sarah so I could get some things done. Fernanda ended up picking me up for what I intended to be a productive work lunch… brought my laptop and all. Due to technically difficulties… The Vig’s internet wasn’t working so I am blaming that on our lunch gone array. We got nothing done except for a very long, deep, heart to heart talk filled with both laughs and tears. I don’t know how I am going to get through New York with her so far away. She gives me such strength.

The night around here was alright. I am having a hard time staying focused on what I need to do before we leave. Avoiding reality big time. I have no choice but to be productive today as Thursday is right around the corner. I finally talked to my long lost Charisma last night. We have not talked in a month but were finally able to last night. It was so good to hear her voice and listen to how she has been working away and testing for pilot season. Keeping my fingers crossed for my extra talented friend that something amazing comes her way.

I have been up on and off since 3….I was finally able to get Ronan back asleep a while ago and he is still sleeping away. I have been watching him on and off all night as he is fighting this pain so hard. It is gut wrenching to see him toss and turn and wince in pain as he tries to sleep. Poor angel baby. I feel so helpless and restless. It will be good to get to New York and get the ball rolling.

I hope you all have a beautiful day and are so very thankful for all that you have.

xoxo

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!!