Magic Medicine… Day 1 Round 7

We started Ronan’s 7th round of chemo today in hopes that we can get rid of more of his cancer before making a major decision as far as which way we will go with his treatment. Today, was very uneventful and easy. We checked into the clinic and Ronan took one of his chemo’s orally, and the other one is given through his broviac. We will go to the clinic tomorrow for the same thing and then we will spend Sat-Mon at PCH inpatient to finish the rest of this cycle. So far, so good…. he is feeling great. What we are hoping and praying for is for these next two rounds of chemo to do their job and get rid of some more cancer before we decide which treatment is best for Ronan. If all goes well, like we are praying, and he responds, Transplant is still an option. The question is, is the right option for him?? We are going to be spending the next couple of months researching and meeting with other doctors to determine what all of our options are. We are taking Ronan out to UCSF next week to meet with Dr. Matthay to get her opinion and Woody will also be flying out to CHOP in Philadelphia to meet with Dr. Mosse. We are keeping Dr. Kushner in our back pocket as well. Nothing can really be decided until Ronan finishes these last two rounds of chemo and then we have him rescanned.

I’ve had some of you ask why we didn’t send him into transplant after Round 6 like we had planned. Ronan’s MIBG scan showed too much active disease for us to be comfortable with. We feel like a transplant would not do any good and our doctors, for the most part, seemed to agree. They would like to see less active cancer in his body. As I said before, he had so much cancer in his body and it has drastically reduced…. but not enough. We need to get rid as much of it as possible and we will move forward from there. I know you all pray for our baby everyday and night, but please, send him everything you’ve got for these next couple of months. He has to respond to this chemo well.

Ronan is otherwise doing very well. He has been his happy, active, sweet self. He lights up my life every second of the day. He is so happy to be at home with his brothers and has been enjoying spending as much time as possible with them. Woody and I are so thankful to have everyone together. Other than this cancer bullshit, we are just another normal, happy family. Well, as much as we can be.

Tonight, I had a last minute dinner out with the girls. I went out with Trish, Stacy, Marisa, and Linds. It was a calm, peaceful evening and I was so happy that Stacy finally was able to meet Marisa and Lindsey and vise versa. My group of friends mesh SO well together. You have no idea how happy this makes me. It was nice to be out and even nicer to see my Little M who I have been missing so much. In between her new baby and her being sick, it’s been way too long since I’ve seen her. I feel like after tonight I got a little piece of my heart back. Marisa is such an important part of my life and what I love even more is the fact that if we go a couple of weeks without seeing each other, I never have to second guess that she isn’t thinking of us every second of the day. Love you, Little M.

Tonight, I feel peaceful and tired. I saw Dr. Adams at the clinic and she came up and help me for a minute and told me she really believes we made the right decision by starting Ronan on some more rounds of chemo. I told her how much we adored her and how much we appreciated her honesty and openness with us yesterday. How she brought me peace and made me feel like we have so many more options than we had originally thought. I think the woman has wings. She is another one of those people who you can look into her eyes and see her soul. It is pure, good, and wise. What amazing qualities to have as a human being. We are so very thankful for her.

That’s all for tonight. Early day and I really hope I can get some sleep. Last night I tossed and turned and was up by 4:30 a.m. because I couldn’t sleep. Sweet dreams to all of you. May your tomorrow be filled with as many beautiful things as possible.

Goodnight my sweet friends <3

xoxo

The path is not clear, as the road is long

I feel like I’ve run a marathon today because of everything I got accomplished with a lot of help from my friends. This morning started off busy and I woke up overwhelmed by everything. We still had not heard back from Dr. Kusher from Sloan Kettering to see if he was o.k. with Ronan starting 2 more rounds of chemo here and then having him rescanned. We were waiting to get the green light from him. I called Fernanda and she said she would be over after she dropped her little one’s off at school to help me tackle my “to do” list. As soon as she got over here we started to go over the things we needed to get done. Soon after, we got a phone call from Woody and I put him on speaker. His exact words were, “I need you and Fernanda to take Ronan to PCH now and demand that they start him on his chemo or else we’re taking him to New York tonight. We left the house as soon as possible and it looked like a bomb went off in it. Auntie Karen was sweet enough to come over and tidy things up for me because I was afraid we were going to have to stay the night at PCH tonight and did not want Woody to come home to a messy house. Thank you to the best fairy godmother in the world. Woody would have had my head if he had seen that mess!! Fernanda and I busted into PCH to explained our situation as best we could. I knew getting them to start the chemo today was probably not going to happen, but we insisted that they put the order in and start it tomorrow at the latest. I don’t think they were too happy with us but we don’t have a choice and waiting even a day to get things going is not o.k.  We finally got everyone on the same page and tomorrow Ronan will start his 7th cycle of chemo; one he has never had before. He will be starting Temozolomide and Adriamycin which are supposed to be tolerated fairly easily. We will do these two rounds of chemo and then take Ronan out to Sloan Kettering for his scans. We are basically buying ourselves more time to make a decision and exploring every possibility for our son. If these two rounds of chemo work, and Ronan has less disease, we are keeping the transplant door open. We are also going to squeeze in a consult in San Francisco, Philadelphia, and New York. We have no choice but to explore everything that is out there.

Ronan’s chemo will be done at the clinic tomorrow and Friday so we don’t have to stay the night at the hospital. We will check in to PCH for the rest of his chemo Saturday-Monday. I feel very comfortable with the plan as of now. I have a great feeling that these two more rounds of chemo are going to give us the results we want to see and will lead us to the direction we need to go. I am so thankful for the beautiful soul of Doctor Adams yesterday in suggesting this. For the time being, we are back on track with a plan. This gives me peace <3

After we got home from the clinic, Ronan and I took a little nap together. It was so sweet. There is nothing more precious than having Ronan say to me, “I’m going to cuddle you mom.” And then nuzzle his little head into my arm. I wasn’t really tired but he was so cozy and peaceful that I fell asleep with him anyway. My friend Gay came over and helped play with Ronan so I could get some things done. She also got me a phone call with a woman named Karen Kudro. Her daughter, Hailey, was diagnosed with Neuroblastoma at age 5. They did a lot of her treatments at CHOP in Philly and Hailey is a healthy and beautiful survivor. I was so grateful that her mom took the time to talk with me today, even though they are in Disneyworld for Hailey’s Make A Wish trip!! She didn’t have to take the time to call Gay back at all, but did and she gave me a lot of insight that was very helpful. People out in this world are so amazing. I am blown away everyday by the kindness of strangers. Having this happen to Ronan has made me realize that I need to work so hard to be the best version of myself that I can possibly be; even though there are many days that I just want to give up, I just can’t and won’t. I find myself doing things I wouldn’t have normally done in my so called busy life before all of this. There is a lot less unnecessary anger in my life and I have such a high tolerance for not letting the little things get to me anymore. It is much easier to find the beauty in each and everyday than it used to be. The most beautiful things are the simplest.

After Gay left, Stacy called to asked if I needed her to come over to help me get ready for tomorrow. Nevermind that she had just worked a full day and had her gorgeous babies and husband waiting at home for her. I couldn’t pass up the chance to utilize her help. My pile of papers, bills, receipts, has been eating away at me and I told her Woody was about to divorce me over it. She showed up and we tore through everything and got a ton of my to do list done. Talk about an amazing feeling!! I could not have done it without her. Seriously Stacy, you may have saved my marriage tonight;) And my sanity. I can go to PCH tomorrow with a clear head knowing that most of what I need to get done, is done. Thank you my dear friend. I am the luckiest girl alive to be surrounded by these amazing women. Thank you all for taking such great care of us and helping in any way you can even if it’s little things like dropping off a coffee (Heidi) or calling to check if I need anything from the grocery store (Melissa:) Ed- (So excited about the Zico Coconut Water that arrived today!)  I have the best group of girlfriends one could ask for and every second of the day I am so thankful.

I am ready for what the world has to throw at me tomorrow and can go into my day with a clear head. One day at a time, baby steps. Today, I sent my Mr. Sparkly Eyes a text and it said… “Ronan is going to get through this, I just know it. He is so strong.” His response was, ” You and Ro are BOTH going to get through this.” He knows it, he feels it, he believes it. I like to call him my very own Master Yoda and the fact that he believes this is true, tells me my feelings are 100% right. Everybody I know feels this way and that says so much. It’s just like Woody said to me today which made me laugh out loud. He said, “Ronan is a superfucker. It would only make sense that his cancer is too.” He means it in the sweetest way possible… that Ronan is so strong, that of course his cancer is as well. It would only make sense that this is the road we have to take; Ronan wouldn’t have it another way.

Goodnight sweet angels out there. Goodnight Moon. Goodnight Ro Baby, Liam, Quinny Q, and Daddy Woo. Goodnight New York Miss Macy. See you in my dreams. Sweetest dreams to all of you.

xoxo

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

An appropriate Valentine’s Day word for our situation. Complete with a heart and all!

I have heard this word by so many people this weekend regarding our news. Thanks for always being frank and honest with me. I love you all for it. Especially you, Mr. Sparkly eyes…. you are a good friend for never sugar coating anything.

 

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!!!