Bone scans results…. kind of.

We started off this morning with Ronan’s Audiology test. It went alright… but we were not able to complete the test due to Ronan’s lack of cooperation. He was able to get through some of it in which the Doctor played high frequency sounds and Ronan would put a dinosaur into a bucket when he heard the sound. He did pretty well, but the Doctor is suspecting Ronan has a bit of high-pitched hearing loss. He is not confirming anything as of now. We are supposed to go back Friday to see if we can finish up the test. I refuse to believe Ronan has hearing loss… I don’t know why because it is very common side effect after going through so much chemo. Actually, I do know why. It’s because Ronan is different and is going to overcome any obstacle that comes his way. So what if he didn’t put the dinosaur in the bucket the second the high-pitched sound came on. He’s tired, mad, and sick of people testing, poking, and prodding at him. I wouldn’t corporate either.

After the Audiology test, we headed over to check in for Ronan’s scans. While waiting, I noticed a little girl who looked familiar to me in the waiting room. I have heard about her since Ronan was diagnosed, but have never met her. I’ve been on her website though so I knew the little girl was Ava. I went up to her mom, Chrisie, and asked if she was Ava’s mom and she said she was. I introduced myself and she knew who I was because I had emailed her awhile back. I thanked her for helping me out with my questions and we were able to update each other on both of our kids. I met Ava’s Grandmother and her Dad as well. They look like the nicest family in the world. What Ava is going through is beyond heartbreaking but she seems like a very strong little girl. All of Ava’s treatments are done at Sloan Kettering, even though they live here. Ava was here for scans today so please keep her in your prayers as well. Here is her website if you would like to visit it: www.caringbridge.org/visit/avaholder. Ava’s Neuroblastoma has relapsed twice, but she is still here and still fighting hard. I will scream and very loud, “FUCK YOU CANCER!!!!!!” for Ava. Makes me so angry. I just wanted to wrap my arms around her entire family while they were waiting for Ava to come out of Anesthesia. I am so happy I had the pleasure of meeting them today. What are the odds really? They are never at PCH and just happened to be on the same day I was there with Ro. It was meant to be. I feel so blessed to have finally met them and sweet little Ava. She is a little spitfire just like Ro 🙂

As we waited for Dr. Maze to come and get us for Ronan’s Anesthesia, he fell asleep in my arms. I sat and watched him sleep so peacefully. I took that time to think about what a long way he has come since first being diagnosed. I found myself in a comfortable state of mind full of peace and quiet. I sat with him in the dark and prayed for his scans to come back with the results we are hoping to see. I felt a wave of warmth in my heart wash over me because I felt, once again, that Ronan is going to be o.k. He is going to beat this and go on to live a normal, happy, long life.

Dr. Maze arrived and we were taken back to the room where they were getting ready to do the bone marrow procedure. He let me hold Ronan as he always does while he gave him the Propofol to go to sleep. I held him and watched him get sleepy and listened to him cry out, “Mama, mama, mama,” for me. He doesn’t like the way the sleepy medicine makes him feel. I told him I loved him and would see him soon and set him down on the bed. I gathered up my things, took one look back at my baby, and Dr. Maze yelled at me to go and eat something. I had to laugh to myself because at the beginning of all of this, Dr. Maze was so proper and reassuring. Now he knows me so well and knows that  I am so used to all of this that he is comfortable barking orders at me to eat something. Gave me just the chuckle I needed to get out of there without even tearing up like I normally do.  Woody met me at the cafeteria and I managed to eat a little salad, but pretty much just sucked down a giant Coke instead. An appetite is something that I am still having a hard time with, especially on scan days.

After Woody left, I sat in the waiting room and waited for Dr. Maze to come and get me. I tore through the piles of bills that I needed to get paid and the next thing I knew, it was time to get Ro. He woke up groggy and grumpy like he always does. Dr. Maze went back and looked at the scans for me and came back telling me as much as he could. Our Doctor, Dr. Eshun, is in New York City and will not be back to read the results for us until next week. Dr. Wood, who has followed Ronan since the beginning is here and I sent Dr. Maze a text asking him to please have Dr. Wood call us to go over the scans because next week is way too long to wait. I got a phone call from “A” tonight instead. It was hard for me to talk to her, as I had Ronan screaming in the background and had to run outside to even hear her talk. She said she could go over the results from the bone marrow and bone scan for me in a very limited way. As she put it, in her medical terms…. she told me that there was “No focal discreet abnormalities in the bones anymore.” Um… what?? She may as well have been speaking another language. I couldn’t think of what questions to ask, as I was distracted by Ronan and my nerves were a wreck. I said to her, “I have no idea what that means, but is that a good thing?” She said indeed it was a very good thing and that is just what they would want to see. She told me Dr. Wood would call us tomorrow or Friday to go over what exactly this means and to discuss things further in detail after they do the MRI, CT, Pet Scan tomorrow. Those scans will tell us in more detail what is going on now. All I know is “A” was not alarmed about anything and that alone will help me to sleep a little bit better tonight. I will let you all know the “formal” results when we get them, but as of now, there is nothing to be alarmed about. The treatment we are doing is working and that in itself is a huge victory in its own right.

We are all exhausted tonight and Ronan has another big day of scans tomorrow so I am going to try to get some sleep. Please continue to send your strength and love his way. His diagnoses has been beyond devastating to us, but the way he continues to beat all of the odds is beyond inspiring. He fills me with such hope and love every second of the day and it is the love that I have for him that will get all of us through this.

G’nite and sweetest dreams to all of you.

xoxo

Goodnight moon

Home. After over a month of being in and out of hospitals, between Sloan and PCH… we are home again. So sweet. Yesterday, Ronan’s ANC was only at 80… today it jumped up to 240! That is very high for just one day. Ronan’s little body is fighting so hard to come back after being beaten down so badly. After Arica, our amazing friend/nurse, told us the great news about Ronan’s ANC.. she still wasn’t sure if we could go home or not. She said she didn’t want to get our hopes up because we were scheduled for scans as an inpatient for tomorrow, so that may mean they may just make us stay the night again. My sweet friend, Fernanda, came to sit with Ronan so I could run home and shower. She texted me about a half an hour after I left to tell me the doctor came in and told her that after Ronan received a transfusion of platelets, we could be on our merry way. I was so thrilled to hear this news as I was not expecting it:)

When I returned to PCH, Ronan was sleeping and when I walked into his room I had to laugh at the snow cone tent/stand that Fernanda bought for Ronan, along with his very own snow cone maker so they could sell snow cones to the nurses. Can you even stand the cuteness of this right now?? I can’t. It was the most adorable thing ever. What an amazing heart and imagination she has. Arica was telling me that when they were making snow cones, all of the nurses were like, “What is that all that noise?” Arica said she was laughing and told them, “Oh, don’t worry.. it’s just Ro making snow cones with his snow cone machine.” Only Ronan with the help of Fernanda would pull something off like that while stuck in the hospital. The thought of the two of them doing this together makes me so happy. Thanks, Fernanda, for everything. For all your help with Ronan these past couple of weeks and hauling all of our things to my car for me today. I don’t know how I would have managed without you, my dear:)

As we were getting ready to leave PCH, we were waiting for one of our doctors, “A” to come and talk to us about the weeks upcoming events. She arrived from the clinic all flustered, panicked and excited. She was jumping up and down about Ronan’s ANC and said how amazing he was that it spiked so high in one night. Talk about being passionate about her job. I love seeing that in someone who is caring for my child. A lack of passion in life is fatal. I have always felt this way and seeing “A” as often as we do, she is one of the most passionate people I have ever come across. Makes me love her even more. She told us that one of the scans Ronan was supposed to have this week, the MIBG scan had to be delayed due to the iodine not being able to get here from Canada due to the big storm. I told her not a big deal at all, as I know the situation is not in her hands. She was also trying to figure out a way to squeeze in one of Ronan’s bone scans tomorrow with all of his other scans, so we could limit the amount of times that he has to be put under anesthesia in the next two weeks. The only problem was Dr. Maze had a certain time blocked out for Ronan’s anesthesia, and throwing another scan in cut into something else he had scheduled. His office didn’t think he would be able to do it so they were going to have to get somebody else.  Just as she was telling me this, she looked down at her phone and started jumping up and down saying, “Yes, yes, yes! Thank you!!!” She then told me, “Nevermind, Aubrey moved whatever he had and will be there to do all of the scans.” She was smiling and saying how she was going to have to bake him cookies now for this one. What a good friend and a good man he is to us. He knows how important it is to us to have him do Ronan’s anesthesia. Thank you, Aubrey…I have decided that you are first a good man, and than a good doctor 😉

Ronan had his EKG and Echo Heart scan done today just to make sure everything is working properly. He was of course a great little trooper about having yet another thing done to him. I did have to bribe him into leaving his room to go for these scans by letting him take the 5 pounds of candy that Macy sent him from New York. Thanks Mace! Nothing like a little candy straight from Dylan’s Candy Shop to get the morning started! You spoil my child rotten and he loves you all the more for it! I love you for making me laugh the entire day with your ridiculously funny 4 minute long voicemail. You have no idea how much I needed that one today:)

Home today has been heaven on earth. To have all of my boys’ under the same roof is a dream come true. I did spend most of the night unpacking our 20 bags and doing laundry. I couldn’t stand the thought of having to wake up to them in the morning and then having to come home from a long day at the hospital tomorrow to them staring me in the face. The boys helped as much as they could and Woody cooked dinner. It was a nice, normal, happy night. It feels really good to all be together again.

Ronan knows the drill for tomorrow. I have been preparing him for it all day as far as having to get up early to go back to the hospital so Dr. Maze can give him his sleepy medicine. I find if I prepare him for things, he is less likely to throw a fit. He told me tonight it’s o.k. to go back to the hospital, as long as he doesn’t have to be “hooked up” as he calls it, to his pole. I told him he would not have to be hooked up, he was just going to get his sleepy medicine for pictures and we would go home after. He is being very cooperative with all that is being thrown his way. I am so lucky to have such an amazing little boy. He never ceases to amaze me.

Tomorrow is a big day for Ro. Please keep him in your thoughts and prayers. He will have his audiology test first thing, his bone marrow scan, and then his bone scan. We know from the scans in New York, that the Neuroblastoma was not detected in his bone marrow, but we will have them rechecked at PCH and have the bone test done as well. When Ronan was first diagnosed, he had Neuroblastoma in everyone of his bones and 5-10% in his bone marrow. We know that it is now gone from his marrow, but his actual bones may be a different story. We will hope and pray that it has drastically decreased. It cannot be any other way.

Tonight, I am happy to sleep in my own bed with my little bug curled up beside me. I was able to tuck in Liam and Quinn which means the world to me now. Who would have ever thought something so little would mean so much in the grand scheme of things. Tucking in my little boys’ is the happiest place on earth for me. I am very thankful for the nights that I am able to do this and will cherish them for the rest of my life.

G’nite to all of you beautiful souls out there. Thank you for all the love, thoughts, and peace you are sending our way. Nobody said this was going to be easy, but it is going to be worth it. The love that surrounds our family is something we are so thankful for. Sweetest dreams to you all.

xoxo

I never understood before
I never knew what love was for
My heart was broke, my head was sore
What a feeling

Tied up in ancient history
I didnt believe in destiny
I look up you’re standing next to me
What a feeling

What a feeling in my soul
Love burns brighter than sunshine
Brighter than sunshine
Let the rain fall, i don’t care
I’m yours and suddenly you’re mine
Suddenly you’re mine
And it’s brighter than sunshine

I never saw it happening
I’d given up and given in
I just couldn’t take the hurt again
What a feeling

I didn’t have the strength to fight
Suddenly you seemed so right
Me and you
What a feeling

What a feeling in my soul
Love burns brighter than sunshine
It’s brighter than sunshine
Let the rain fall, I don’t care
I’m yours and suddenly you’re mine
Suddenly you’re mine

It’s brighter than the sun
It’s brighter than the sun
It’s brighter than the sun, sun, shine.

Love will remain a mystery
But give me your hand and you will see
Your heart is keeping time with me

What a feeling in my soul
Love burns brighter than sunshine
It’s brighter than sunshine
Let the rain fall, I don’t care
I’m yours and suddenly you’re mine
Suddenly you’re mine

Stem Cell Harvest day

Today got off to a bumpy start. I woke Ronan up around 6:45 a.m. and he was not happy to say the least. One, he was mad that I woke him up so early, and two, he was even more mad that he had to spend his day at the hospital. After having him hit, scream, cry, slam doors, and hide.. I finally got him into the car. He calmed down after a bit and I kept assuring him that there were no owies today. Once we got back to the stem cell room, our nurses, Heather and Kim, got things moving very quickly. They gave Ronan his Benadryl and Tylenol and soon started the process of collecting his stem cells thorough his broviac. Medicine and science are so amazing, the whole process was mind blowing.  After about an hour, we were able to see the stem cells start to appear in the bag. Ronan slept for the first couple of hours and after that, it was party time. He was a busy little guy but everything he did was done from his bed. We watched a little movie, shopped for Halloween costumes, played Star Wars, colored, did a sticker book, and last but not least, Ronan teased and flirted with the nurses the entire day. He was so playful and cute and he had those nurses eating out of the palm of his hand. Mimi Kay spent most of the day with us and Tricia came to visit as well. Ronan loves having those two around and so do I. It was a long day, but a fun day. Any day that Ronan is in great spirits is a good day for us.

After we got home, we played with the twins and waited for Woody to get home. It was a great day weather wise here… lots of storms and rain. Being a Pacific Northwest girl, a stormy and rainy day always make me happy. After it stopped raining I got a text from my friend/neighbor asking if we wanted to go for a walk. I knew the fresh air would be good for us so Quinn, Ronan, and I walked down to the Tarbell’s to pick our friends up. It was the best walk date ever. Ronan was so happy, running in the puddles and smiling. Laely and Wesley watched from the wagon and everyone was in a great mood. It made my heart melt seeing Ronan running around acting like the little 3-year-old he is supposed to be. What a great way to end our day. I love my neighborhood and I love our friends.

We heard back from the hospital tonight. We will not have to go back tomorrow because they got all of the stem cells they needed today. They needed 10 million and they actually got close to 15 million. So happy about that news!! One less day in the hospital for us! Our next big day will be Thursday when we go in for our MIBG scan, Bone Scan and MRI. We will then find out on Friday more in detail how the chemo is affecting Ronan’s cancer. Please, keep praying and loving him. I know all of your prayers, energy and positive thoughts are working on our sweet baby boy!

He is out like a light now and I am wiped out too. I hear some Nancy Botwin calling my name. I am going to indulge a little bit tonight and watch one of my favorite shows for a bit. Goodnight to all of our angels out there!