We’re not married…. we’re still dating;)

I wish I could tell you tonight that we have our answer. But I can’t. Woody and I both left the house on the same page this morning, thinking we knew which approach we were going to take. That all changed after meeting with Dr. Adams, the head of Stem Cell Transplant at PCH. I should have known the answer was not going to be so easy. Woody, Fernanda, and a I sat across from Dr. Adams and Woody did all of the talking. Fernanda sat and wrote notes and held my hand; I sat, listened, absorbed, and cried. At one point I looked up and told everyone I was just trying to do my best not to throw up everywhere. Dr. Adams looked at me and said she didn’t blame me, she was devistated that she had to be having this conversation with us. But, she said she still feels like Ronan can be cured…it’s just going to take a little more work than we would have liked. She said we have a ton of options available but unfortunately, nobody knows the right answer. The decision we are going to have to make is going to have to be based on all the data we collect and a gut feeling. Those were her words exactly. I told her I’d be gut feeling, and Woody could be the data:) Sounds like a perfect match to me. What Dr. Adams would like to see is us do 2 more rounds of a different type of  chemo here, than rescan Ronan and make a decision after that. She does not want us to jump head first into anything. Woody and I both agreed that this sounded like a good idea to us as long as it won’t close any doors as far as other options go. We are waiting to hear back from Dr. Kusher at Sloan to see if he is o.k. with this. We don’t see how this would hurt Ronan at all, if anything everyone seems to think we can get rid of some more of his disease this way.

There are not many people in the world that I would trust with the life of my baby, but Dr. Adams is one of them. I don’t have a super personal relationship with her for obvious reasons, but I don’t need one to know that she is a very special woman. She is brilliant beyond belief, compassionate, open minded, and has dedicated her entire life to this. She truly cares about each and everyone of her patients. She has this amazing aura around her and I feel it whenever I’m in her presence. After we left her office, Fernanda and I went out into the main waiting room to take care of some business. Fernanda looked at me and said, “I still have goosebumps after being in that room with that woman.” Fernanda felt it too. This woman is a gift to us and I want to keep her involved in Ronan’s care for as long as possible.  I fully trust her and respect her opinion so much. She wants to give Ronan the best shot possible is willing to do whatever she can. She was very hopeful because Ronan has responded so well and as I said before, she just thinks he needs a little something extra. Staying here and starting chemo would give us more time to figure out our exact plan. I hate just to jump right into anything if we can take baby steps instead to really make sure what we are doing is right. Fernanda had Dr. Eshun’s assistant get all of Ronan’s scans out to about 6 different doctors. We will take all of the opinions we can get right now. This is not the end of the road my friends, not even close. This is the beginning of a new path we are going to take to get Ronan well. I am embracing it with open arms and know it will be the right decision, when the decision is made. I trust in the higher power who is in charge of this…..whomever that may be as I believe there are many forces behind getting Ronan well.

Once again I am in awe of my husband. I sat today and watched him fire out questions to Dr. Adams that I think she was even surprised to hear him ask. He knew the names of all of the studies, the side effects, what things would open doors and what would shut doors. It is pretty amazing when you can watch someone like Dr. Adams be so impressed with a father and his wealth of knowledge. I wish I could have been of more help, but I cannot seem to detach myself from the emotional side of all of this. I don’t know what I would do without Woody. I said to Tricia yesterday, “Could you imagine if I were married to a moron and going through all of this?” There is no way I could get though it. I am so thankful I am married to such a brilliant man. I love you, Woo <3

We still know Ronan is going to beat this but as I said before, he is going to do it his way. We will get this figured out but it is going to take a little bit of time. Nothing is set in stone and I loved it today when Fernanda said in her beautiful accent, “Honey, I love that you’re not married to one idea, your still dating!” I’ll never forget how her words made me feel today. I’ll never forget her sitting in the clinic with me and seeing her tears over something I had shown her that I carry with me everywhere I go…. her Christmas card picture with all of her 5 beautiful children on it. I feel like it brings me luck and it will help to guide me. It’s the little things that mean so much to me now. Whether it be the Claude necklace I always carry with me, my four leaf clover necklace that I never take off, Pam’s bracelet that she gave me that I also never take off, or Fernanda’s Christmas card. All of those things bring me peace and although they seem little and insignificant, they all mean the world to me.

Today was a long day to say the least. I have taken my sleepy medicine so I can actually sleep tonight. If I miss a dose, sleep does not happen. I’m o.k. with this. It won’t be forever, and I know how important it is for me to get some real sleep. My dreams are still intense and sometimes they are good, and sometimes they are bad. Working on tricking my mind into making my dreams as peaceful as possible.

Goodnight my sleepy friends. Goodnight Moon. Goodnight my sweet baby Ro, Liam, Quinn and Woo. Goodnight my Fernanda… I will meet you in my dreams for cocktails, on a beach, far away from all of this. I love you.

The dawn is breaking
A light shining through
You’re barely waking
And I’m tangled up in you
Yeah

I’m open, you’re closed
Where I follow, you’ll go
I worry I won’t see your face
Light up again

Even the best fall down sometimes
Even the wrong words seem to rhyme
Out of the doubt that fills my mind
I somehow find
You and I collide

I’m quiet you know
You make a frist impression
I’ve found I’m scared to know I’m always on your mind

Even the best fall down sometimes
Even the stars refuse to shine
Out of the back you fall in time
I somehow find
You and I collide

Even the best fall down sometimes
Even the wrong words seem to ryhme
Out of the doubt that fills your mind
You finally find
You and I collide

You finally find
You and I collide
You finally find
You and I collide


This is what we are up against

Dr. Eshun,

OK. I have spoken to Dr. Matthay at UCSF, Dr. Kushner at Sloan, and Dr Kletzel.

 

Matthay would not advise over the phone, but would set a consult for next week once she’s seen the scans.  She did suggest that more chemo followed by MIBG would be a likely option.  She thought Ch14.18 would be important as well.  He concern was that Ronan may not be able to receive the Ch14.18 if he does not start stem cell transplant  within 9 months prior to diagnosis.  See http://clinicaltrials.gov/ct2/show/NCT01041638
The following MIBG with stem cell trial appears available:
Dr. Kushner has seen the Bone scan, PET, CT, MRI, and MIBG reports.  He wants to see the scans before making a formal recommendation, but he is inclined to one dose of topotecan (sp?) and the chemo it is paired with in a higher dose, then immediately into 3f8 with NK cell.  He says he is leaning towards this because he believes the MIBG spots are likely marrow since the bone scan was largely negative.  He said he would do MIBG later if the MIBG spots remained.  Kushner doubted the ability to use 3f8 if MIBG therapy is done first.  He said another benefit of this plan is lower toxicity which would allow Ronan to better tolerate chemo and radiation down the road.
I believe this trial is here:
Kletzel tended to agree with Kushner’s assertion that if the bone scan showed no discrete abnormality then the MIBG spots were likely marrow.  He also said that it is difficult to recommend anything without seeing the scans.  But, he liked the idea of MIBG therapy best because what remains is MIBG avid.  Logically, if the cancer has MIBG uptake then the MIBG therapy should be effective.  He then said antibodies would be important afterward.  He was concerned about further treatment that would change the cancer to not be MIBG avid and then MIBG would not be effective.  Overall he was not optimistic about future treatment.
Kushner and Kletzel both agreed that stem cell transplant, single, tandem, or even triple will not likely make a difference unless and until the MIBG is clear.  The data from the abstract seems to support this contention (although many of those on the abstract did not get antibodies).
All 3 were a bit surprised that all bone marrow biopsies and aspirits have been clean since cycle 5, the bone scan negative, but MIBG active.  But ultimately all three said NB doesn’t always follow logic.
I see the logic in both courses of treatment, but again does logic apply?
If boney, I tend toward MIBG.  If marrow, I tend toward MSKCC’s approach.
So, a primary question becomes: Do you believe that the residual cancer is boney, marrow, or both?
I hope we can discuss on Tuesday.
Thank you again for your help.
Woody Thompson

Not following the yellow brick road

HAPPY VALENTINE’S DAY! RO, MAMA, AND NANA WENT FOR PEDICURES!!!!

I wish I could tell you all that I have not updated my blog for a few days because I have been so busy soaking up all of my precious time with my amazing family. That we have had such a fun filled, fantastic weekend full of no worries whatsoever. But, that is not the case. The weekend started out that way. We left PCH on Friday happy as clams, ready for transplant and for a great weekend. We took Ronan on Saturday to the twins’ basketball game and had a wonderful time. Afterwords, I came home with Ro and my mom and we were playing outside in the backyard enjoying the sunshine and warmth of the day. 30 minutes later Woody arrived, came storming outside, demanding that he needed to have a serious conversation with me and needed to have it now. My stomach instantly dropped, my heart fell to the floor and I knew something was wrong. He said he had just gotten off a lengthy phone call with Dr. Eshun and they had done the randomization for one stem cell transplant or two. We were randomized for one. I knew this before Woody even told me. Woody had asked me 3 days prior to this if I thought we were getting one transplant or two. I looked him dead in the eye and said, “One.” He goes, “How do you know?” I told him I just had a feeling. This is not the news we were hoping for. My head started spinning and it was as if we were right back to where we started, at day one of Ronan’s diagnoses. Although Ronan has made great progress, Woody and I have done enough research to know that not enough of his disease is gone for us to go ahead with just one transplant. This cancer is too strong. I spent all of Saturday crying my eyes out, trying to wrap my head around all of this, and Woody went straight into Woody mode and armed himself with as much information as possible as far as other alternatives. He figured out who we needed to call today to get answers from. He has spoken with several doctors from New York, San Francisco, Chicago, and Atlanta. Time is not on our side and time is not our friend.

The one thing that every doctor that Woody has talked to, cannot figure out is why is Ronan’s Bone scan is negative, his Bone Marrow clean, his VMA (urine test) is negative, yet he has so many spots left on the MIBG scan. Dr. Kusher believes that the Neuroblastoma, is still in Ronan’s bone marrow, not his bones. We are at a crossroads with what to do and are looking at basically two different options. As of now, we are deciding between an MIBG therapy in San Francisco or heading to Sloan Kettering to start 3F8. As soon as we heard that  Ronan had only been randomized for one stem cell transplant, we pulled him off the COG study we have had him on. There is no point in following their rules anymore. Although Ronan’s path is not clear, I have no doubt that we will find our way through this maze. I keep telling myself that Ronan is so unique and such a special little boy, that he was not meant to follow the yellow brick road on this journey. He was meant to make his own road full of yellow, purple, red, green and every other color you can possibly think of. Maybe this is a blessing in disguise because Ronan was not meant to have a transplant at all as it wasn’t the right answer. I have felt uneasy about his whole transplant thing from the beginning. I know what my heart and gut are telling me what the right answer is… but I think it is going to be a day or two until the answer is 100% clear. Woody and I are doing everything possible, with the help of my dear Fernanda who has been a godsend, to find out what all of our options are. We are still meeting with our transplant doctor tomorrow, Dr. Adams, but we will not be starting transplant on Thursday like we had originally planned. Just goes to show you how tricky this disease is and you really can’t ever prepare for anything. Talk about having the rug pulled out from underneath you. I told you Ronan was a rule breaker…. I really believe he was not meant to follow this protocol…. he is going to make his own.

I was a mess this weekend but tried to go on with some normal things we had planned. On Saturday night, Woody and I went over to Tricia and Max’s house with our friends, Danielle and Jay. We had fun, but I told Trish the next day, you know your in a bad place when not even Danielle’s toxic margaritas can mask your pain. We came home from Tricia’s around 1 a.m. and I tossed and turned the entire night. On Sunday, I had a dinner planned with some of my girlfriends and I refused to cancel. I joined Jen, Stacy, Jocelyn, Fernanda, Gay, Heidi, Bethany, Shelby, and Melissa, for a very special dinner that was supposed to be my “sending off” into isolation, but turned out to be, o.k…..here is the new news and what we are facing…now what the fuck are we supposed to do??  I tried my best to enjoy myself and when you are surround by the most beautiful women in the world, it is impossible to not enjoy yourself. I had to let go just a little bit and I have to trust in this new plan that is going to present itself. I texted my Mr. Sparkly eyes today and told him that decisions are begin made for us and we just have to trust. He believes this too, there is something bigger than us guiding us in the direction we need to go. I truly believe this with all of my heart.

What I am asking from all of you is just your continued prayers and love and your belief that we will make the right decision for our baby boy. Whatever path we choose, or whatever path chooses us, there is no looking back. We refuse to second guess anything we have done or are going to do. To live like that is foolish and we are very aware of that.

Hopefully by tomorrow, we will have a clearer vision of what we are doing as we need to get Ronan started on his next treatment as soon as possible. As far as Ronan goes, he could not be happier. He has been loving being at home with his brothers and playing outside. He looks amazing and his spirits could not be better. I am reminded everyday by looking at him what a gift he is as well as Liam, Quinn, and Woody. I am such a blessed mama and wife.

Please, no tears for us yet. Trust me, I’ve done enough crying the past few days for each and every one of you. This is a blessing in disguise. It HAS to be.

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!!

Deep breaths, Patience and Xanax

Fork em' Devils!

What a long day. We don’t know anything yet but should know the results by tomorrow afternoon/evening. Now Dr. Eshun will meet with a team of doctors to go over the results of all the scans combined, with a fine tooth comb. Waiting is the hardest part. Sleep is going to be extra difficult tonight. UGH. I hate these nights.

Today, we started out at the clinic just doing Ronan’s normal labs. He needed to get blood, but we did not have enough time to do it before we had his MIBG scan. We will go back tomorrow for a transfusion as his counts were a little low. We did have some time to kill in between the clinic and our scan time so we went to the car wash and ran home for about 15 minutes. We then headed back to PCH to get ready for Ro’s scan. He was in a pleasant mood today and was excited as always to see Dr. Maze. We brought him a coffee and Ronan introduced Dr. Maze to his favorite show that he was watching on his iPad, Max and Ruby. Dr. Maze and our favorite of his helpers, Angela, were eating Ro up like always. We had some fun play time with them before it was time for Ronan to get his “sleepy medicine.” We did the usual, I held him, and Dr. Maze injected him. Ronan cried out his usual, “Mama, Mama, Mama!” I put on my brave face and gave Dr. Maze the look he knows so well now, which is, take the best care of my baby ever. I don’t even have to say the words anymore. He knows and he does. So thankful.

I walked myself out to the waiting room where Auntie Karen and Fernanda sat waiting for me. I am so glad they were there to keep me company today. They kept my mind occupied and I am so happy the two of them finally were able to meet. I am so used to going to PCH alone and by myself and I never realized how much work it is for me. Today, after Ro came out of anesthesia, Fernanda went and got my car for me so I didn’t have to walk all the way to the parking garage while carrying my bags and Ronan as I usually do. Today was easy and I am going to try to make myself take the help from my friends more often. It makes all the difference in the world. They kept my mind busy and my spirits happy. Thank you both for today…. I know I tell you all the time, but I love you so much. Ronan woke up a little grumpy and just wanted to get out of there asap. That is precisely what we did.

We came home to Mimi and Papa helping Liam and Quinn with their homework. Ronan was starving so I made him his favorite scrambled eggs and he scarfed them down. Woody came home soon after and we snuck out just the two of us for dinner. It’s been so long since just the two of us have gone out alone. It was nice to just sit with my husband and try to be as normal as possible. I caught myself laughing easily at his funny stories and we got caught up on our plans for the weekend. It was a very nice, much needed night together. My mom comes into town tomorrow until Monday and I am so very excited to see her. It should be a busy, fun, weekend <3

Fernanda sent me a text tonight that melted my heart. She said one of her little boys’, Brando, who is four, was at school today and a little boy asked him where his mommy was. Brando told the little boy that his mommy was at the hospital helping a little boy grow back his hair. That is one of the cutest things I have ever heard and filled my heart with so much joy. Fernanda is doing so much more than that; she is teaching me what it truly means in life to be an amazing person to the core. What it means to live a life full of passion, laughter, and love with just the right about sass to go with it. Fernanda is the kind of women who can light up a room with her quick wit and bright eyes. I told you she has the same sparkle in her eyes as Ronan and I find so much comfort in that. Even though what we are going through, sucks balls, I am so thankful for the beautiful souls that I am surround by. If not for this, I would be missing out on all the loveliness that has surrounded me for so long, but I just didn’t know how beautiful it truly was until now. Everyday is a combination of heaven and hell…. it’s a beautiful, tragic love story to the fullest.

Deep breaths tonight. Hot Yoga at 5:30 a.m. Yes, please. I will be there and I will be focusing all of my energy into my Ronan baby like I always do. We need some good news tomorrow. Please.

G’nite and sweetest dreams to you all. Love you for checking in on us and loving our little Ro so much.

xoxo

MIBG Day is here!

I wrote the longest post last night, only to have it magically disappear. I am so annoyed and was too tired to write anything over again. I’ll keep it short and sweet this morning as we have a busy day ahead of us. Today is the day of the MIBG scan. The scan where we will be able to pinpoint exactly where Ronan’s cancer is still active. The scan that will light up his little body down to every active cancer cell. We are praying for a miracle and hoping the scan comes back showing a lot less activity. I know it is too much to ask for it to all be gone, but I’m asking anyway. Please keep Ronan in your thoughts and prayers today. I will update you all as soon as we know something. It may be awhile, as the team of doctors want to go over all of the scans combined. I am still going to get the MIBG read for me today. Dr. Eshun is pretty good about getting back to us as soon as he knows anything. So, here we go today…. at least it is Ro’s last anesthesia for a while.

Yesterday the event at Los Palomas turned out beautifully. It was sold out and the room was filled with the most gorgeous women in the valley:) I had Tricia represent me, as I couldn’t be there due to being at PCH all day. She got up in front of everyone and read a little something I had written. I am so proud and honored that she was the one standing up there for me. Thank you, TT. You are the most amazing best friend to me. Thank you to Jaye and her wonderful board members for dedicating your entire day to raise awareness for Ronan. It means so much to our family.

After we returned home from the hospital, we had a great day playing outside and around the house. Ronan is feeling so great and it is days like yesterday that keep me going. Yesterday, I watched my baby play and act just like a normal 3-year-old who doesn’t have cancer. He was acting like his old self and was so happy and sweet. Days like yesterday don’t happen very often anymore but when they do, they mean so much to me.

I’ve got to get my little guy ready for the day. Thank you all for the love and prayers. I hope you all have a beautiful day!!

P.S. New York Miss Macy!!! I will be thinking of you during your travels today for your big move to San Fran! You will always be New York Miss Macy to me though. I can’t wait for your visit and I can’t wait to wear our Spirit Hoods together you crazy girl!!! I love you!!!

Holy Shitballs. Macy Wood makes me laugh like no other!

 

She knew I needed a laugh tonight so here she is, the infamous Macy Wood. All bundled up in her Fur, WTF? I have no idea what this thing is she is wearing but it is awesome and I want one. Love you, MACE! Thanks for the giggles tonight!!

xoxox

I’m throwing in the towel and taking a bubble bath with a Margarita. Enough is enough today.

You do not want to be in my head tonight. It is not a fun place to be. It’s filled with anger, guilt, and sadness. Tonight, I am tired. Just plain tired of all of this cancer bullshit. It has taken over my entire life and I feel so selfish for thinking this but I caught myself screaming in my head tonight that I need a break. I want to check myself into a hotel, go to the spa, watch a movie, and be by myself with nobody around to talk to or take care of. Everyday, I am taking care of my sick baby without thinking twice about it. It is just routine, what I have to do, which I am so lucky to do. Today was the first day since all of this happened that I finally felt like checking out. Now, the guilt comes washing over me as I think to myself, what an awful mom you are… you are so lucky he is here and you are able to be the one to take care of him. All he wanted tonight was something to eat before bed, even though he had just eaten an hour prior. I was am so tired and could not even muster up the energy to get up to fix him something. Quinn was in bed with me trying to read me his book and I was so trying to pay attention to tell him how well he was doing, and there was Ro, standing at the end of my bed, screaming for my attention. I raised my voice at him which I never do anymore, and he started to cry. That in turn made me cry, then Quinn started to cry. So dysfunctional, so unfair, so totally FUCKED. It was then that I caught myself thinking, please just let me disappear, please I don’t want to do this anymore, please just everyone leave me alone. Woody then swooped in and took care of the situation. He got Ronan something to eat, took Quinn to bed and played him guitar, and then came and drew me a bath and gave me a massage while we waited for the water to fill. I calmed down and now I sit drinking the margarita I made him pour me. Um yeah. You know it’s bad when it’s 9:30 at night and I need a cocktail. Not a big cocktail girl around here, but tonight bubbles and a margarita seem to be the answer. I need sleep but as always, my mind refuses to be still. So now what? This is not going away anytime soon so I will pick myself back up and start a new day tomorrow. I feel like the worst wife and mom in the world right now because I just want to lock myself in a dark closet and never come out. Not really… but I am so tired of everything and we are not even to the hard part yet. Plus, how do I even have a right to be tired after all that Ronan is going through. I need someone to slap me hard now and tell me to knock this pity party off. I don’t have a right to be tired because look at him; the little boy sleeping next to me. I am so lucky he is here and he is not tired as he is not giving up this fight. Just looking at him reminds me that I don’t have a choice; I have to be strong. But I still can be sad for all he is going through. I don’t even have the words tonight to tell you how sad I am for this baby of mine. This reality of ours is an absolute nightmare, but you know what?? Ronan still has a smile on his face and laughter in his heart. How’s that for bittersweet??

Today, oh what a day! We went to the clinic for Ronan’s “Psychological Evaluation.” I explained to him before we got there what exactly we were doing and I told him if he would just corporate, we would be able to get out of there must faster to go home. He told me he would and I somewhat believed him; but not really. I know my little guy. Once we got settled in Dr. Jan’s office, I sat in a chair next to Ronan to fill out some paperwork and Ronan sat across Dr. Jan in his little chair. She started off by pulling out her big book full of pictures and questions. Things like, “Here is a picture of 4 apple trees; which one has the most apples?” Ronan would look at the book and point to the answer he thought was right. He was doing fine, up until about 15 minutes into the test. She asked him a question and he wasn’t 100% sure of the answer and he had a complete meltdown. I’m talking a meltdown so bad that he was crying, sweating, and refused to talk anymore. I sat him on my lap and tried to talk him through everything while comforting him. I explained how if he didn’t know the answer, he could just guess; the important thing was that he was trying. He refused, said everything was taking too long, and he wasn’t going to talk anymore. This went on for a good 25 minutes. I told him this test was something we HAD to do and if he didn’t finish, we would have to come back next week. He didn’t want to do that, so he started answering the questions again. He ended up having another meltdown and at this point Dr. Jan looked at me and said, “What do you want to d0? We have another hour left?” I told her we would just push though this and get it done. I knew Ronan was capable of doing this, he was just manipulating the situation because he did not want to be there. Who can blame him? I told Ronan that I was going to leave the room if he didn’t start coorporating. It was like a switch flipped and *BAM*! The next thing I knew he was pointing to all the right answers and answering the questions. So, the first hour of the test was exhausting to say the least. The next half an hour was a breeze due to Ronan finally giving in and just getting it done. Dr. Jan was blown away by how much Ronan knew  and how smart our little guy is. I already knew this… he is way too smart for his own good. I won’t get the “official” report until next week, whatever that means. I already know everything I need to know… Ronan’s IQ is off the charts. Blame it on his Daddy;) Dr. Jan said we have a little perfectionist on our hands and I may want to watch that. No clue where he gets that from;)

Tomorrow my friend, Jaye, is putting on a luncheon to benefit Ronan’s Foundation. I cannot be there and am so sad, but to be honest, I don’t think it’s something I could handle at this point in my life. My anxiety issues are still very intense and I think it would have been too much. I have testing at PCH with Ronan all day but I will be thinking of Jaye and her friends who worked so hard to put on this beautiful event for us. Thank you, Jaye. I am so excited how fast all of the seats sold out and I want to say a big thank you to everyone attending. I promise, once Ronan is remission that I will be much better with things like this. Right now, all I can seem to focus on is getting though the days and taking care of Ronan. I am so appreciative to you and all of your amazing friends who have worked so hard on this for us. It is going to be an amazing event!

I think I have written enough for tonight, even thought I could blab on forever. I am going to leave you tonight with a question though. What is the one thing you are scared of in life?? I feel as if going through this, I have no fears and I could do anything. Just call me Maya “Danger” Thompson. I don’t know if this is such a good thing, but it is how I feel. Before all of this, I was scared of so many things and I have realized this kept me from doing a lot in my life. What a waste. Life is too short to not take chances and live everyday to the fullest. Ronan is fighting for his life right now, every second of the day. What would you do differently if this were your situation? Try to take your fear and overcome it. It will free your soul <3

G’nite peeps. Lovely dreams of all things sweet.

xoxo

Why hello beautiful boy

Today was actually a wonderful day. Wonderful as in we only had to go to the clinic for the standard blood tests and to have Ronan’s broviac dressing changed. We got to see our favorite nurse, Sharon, which is always a treat. Ronan told me today that she is his favorite person to see at the clinic. So sweet he is. This morning he woke me up at 7 a.m. on the dot demanding scrambled eggs, pronto! I tried my best to put him off as I was so cozy in bed but he wasn’t having it. I got up, made him his eggs, and got Quinn ready for school. Liam is still at Mimi and Papa’s due to not feeling well. After Quinny got off to school, I spent the rest of the morning cooking for Ronan and making him food about every half an hour. He is constantly hungry which is a very good thing, but leaves me exhausted and I don’t get much else done around the house. We headed out to PCH and had a chance to talk to Dr. Eshun about Ronan’s scans. He overall seemed pleased with everything but does not want to give us any concrete statistics until we get the MIBG scan done. This will be the most telling of all of the scans. Thursday cannot get here soon enough. After the clinic visit, Ronan was begging me to take him to Chelsea’s Kitchen for lunch. We met Woody there and watched as Ronan chowed down some of Woody’s French Dip, french fries, and his Grilled Cheese Sandwich. I had my favorite, the Ahi Tuna Tacos. Most amazing things ever. I could never get tired of that place. Ronan was happy to be out with his mom and dad and it was a gorgeous day spent with a gorgeous boy who is feeling wonderful. You have no idea what it does to my heart to see him so happy and carefree. Forget the fact that his life has been overtaken by cancer; today none of that mattered. Quinn came home from school and cousin Luke came over for a couple hours to play. The boys played baseball outside and ran around like crazy. I felt like a normal mom for a minute… making them after school snacks, helping with homework, doing laundry, and getting to hear all about Quinn and Luke’s day at school. It’s days like today that the cancer cloud that hangs over my head disappears for just a short amount of time. It is the most wonderful feeling in the world. I made the boys’ dinner and as soon as Woody got home, I headed out to my gym to get in a quick workout. I’d better try to get in as much exercise as possible before transplant starts because I know once that starts, all of my workouts are going to be gone for awhile. Not looking forward to that but I will just have to suck it up and keep telling myself that this isn’t forever. Soon we will have Ronan back and our lives will return to being somewhat the same; but with much more appreciation for anything and everything that comes our way. After going through something like this, the little things are going to seem so less in our life and we have learned what truly matters. I am grateful in a way for this lesson and I have all the faith in the world that Ronan was put here on this earth to teach us these things and to help us change the world. He has such a special journey planned for all of us and we are going to follow his lead. I have learned to just go with my gut feeling with most everything in my life and it always turns out right. I will follow Ronan to the end of the earth and back and feel so lucky to do so. He is the most amazing little boy. Never in my life have I known someone so strong, brave and beautiful and he is all of this at only the age of 3. Just imagine what he is going to be like as an adult. I cannot wait to see what life has in store for him.

I have learned that my days now are filled with both sadness and beauty. I am o.k. with that because I try so hard to make sure the beauty outweighs the sadness. Maybe Ronan was born such a beautiful boy for this purpose… because this has always been what his journey in life was meant to be and being so beautiful, would help me get through this?? Never has a more beautiful boy existed and I am not just saying this because I am his mother. I am not biased, this is the truth and I now know it was for a very special reason. All I have to do when I am feeling too sad or scared is look into his big blue eyes and my fears melt away. The look in his eyes tells me over and over that he is going to be fine. I truly believe that with every part of my mind, body, and soul. Everyday, I am finding things I am thankful for and it reminds me how precious life on this earth is. Ronan is a gift and I am so happy I get to share him all with you.

That is all for tonight. I am going to hot yoga with Stacy at 5:30 a.m. in the morning. Told you I’m taking full advantage of my freedom and what better way to start my morning than drenched in sweat and tears. Love you all my dear friends. Sweet dreams of peace and happiness.

xoxo

Love my name
Love left dry
Frost or flame
Skeleton me
Fall asleep
Spin the sky
Skeleton me
Love, don’t cry
Love, don’t cry
Love, don’t cry
Skeleton me
Skeleton me

Soon comes rain
Dry your eyes
Frost or flame
Skeleton me
Fall asleep
Spin the sky
Skeleton me
Love, don’t cry
Love, don’t cry
Love, don’t cry
Skeleton me
Skeleton me

Skeleton me