MIBG Therapy

Here is a brief description of what Ronan will be going through. Or what we are praying for his next treatment to be. Dr. Yale Mosse at Chop will be the one handling Ronan’s care.

Neuroblastoma is a cancerous tumor that begins in nerve tissue of infants and very young children. It usually occurs in the abdomen but can occur in other sites near the spine and spread quickly to other areas of the body. It affects roughly 600 children a year in the United States and can have a varied clinical presentation – some cases are localized and easy to treat, while more than half of the children have aggressive disease that has spread at diagnosis and is much harder to cure.Conventional treatments for neuroblastoma include surgery, local radiation and high-dose chemotherapy. “We are always looking for novel ideas and strategies to try to cure relapsed patients whose neuroblastoma is resistant to traditional treatments,” said Suzanne Shusterman, MD, attending physician at Children’s Hospital Boston andDana-Farber Cancer Institute who oversees the neuroblastoma program. “I-131 MIBG is one of the most effective therapies for children with relapsed neuroblastoma, with a response rate of almost forty percent. While it doesn’t cure, I-131 MIBG can allow patients to gain control of their disease and, in combination with other treatments, bring them closer to being cured.”

Originally developed as a blood pressure medicine, MIBG is a compound that is selectively absorbed by certain types of nervous tissue, including neuroblastoma cells. For many years it has been used diagnostically to determine where cancerous activity is occurring within the body. More recently, oncologists began using it to deliver targeted radiation to neuroblastoma cells by binding it to a radioactive isotope of iodine (I-131). Once bound together, the radioactive MIBG is administered to a child through an intravenous line (IV) and absorbed by tumor cells, which are killed by the radiation emitted by the radioactive I-131. Children’s is the only center in New England, and just one of a handful in the United States, offering this advanced treatment.

“This treatment is a way of targeting radiation to kill tumors while sparing normal tissues,” said Lisa Diller, MD, clinical director of Pediatric Oncology at Dana-Farber Cancer Institute and Children’s Hospital Boston. “We are very excited that I-131 MIBG will be an important therapy in eradicating neuroblastoma.”

The actual infusion of I-131 MIBG is a short procedure, lasting approximately one to two hours. Because this treatment involves delivering high doses of radiation, a patient will stay in a specially designed room in the hospital for three to seven days after the infusion.

The I-131 MIBG room is a 256 square-foot hospital room located in the stem cell transplant unit on the sixth floor of Children’s Hospital. The room has added protective features to help manage the therapy safely for the benefit of both patients and staff, and has an anteroom where parents may stay to help with the care of their child and be in close proximity throughout the therapy. During the day parents may safely spend time with their child following specific safety procedures designed to protect them as well as the hospital staff.When a child is hospitalized for I-131 MIBG therapy, parents and caregivers will be considered an active member of their child’s care team and will be closely involved in delivering routine care. The carefully selected and trained team of healthcare specialists will clearly explain these safety procedures and responsibilities to parents before scheduling treatment.Compared to chemotherapy, I-131 MIBG is very well tolerated and affords a good quality of life for patients traditionally overwhelmed with hospital visits. The most common side effects are low platelets and low white blood cell counts about a month after receiving the treatment, both of which can be easily managed. Follow up visits to the hospital are also limited, most often taking place six to eight weeks after the date of infusion.

Almost all patients report at least a subjective response to I-131 MIBG. “The nice thing with I-131 MIBG is that most patients, even patients who don’t have a response that we can see by standard imaging techniques, have a decrease in their level of pain and improvement in their quality of life,” continued Shusterman.

No news is good news, yes??

I find it impossible that I am even still standing after today. Let alone, writing this post. I’m not sure how I’m even awake at this point. I didn’t much sleep last night and we woke up early to get Ronan ready for his day. He was mad that I woke him up from his peaceful slumber and even more mad that he had to drink his contrast before we could head to the hospital for his CT scan. I power talked him though it, although he fought me the entire time. Ronan is such a hard headed little boy and after battling with him almost the entire day, I am mentally beat. There was a lot of distracting, playing, bribing, and threatening today to get him through what we had to do. I have am so glad to be in our bed and over with today and am not looking forward to tomorrow at all. Scan days are always brutal and I know 110% that I would have crumbled today had it not been for Fernanda. She was such a big help.

We arrived to the clinic and were told that Ronan needed platelets again because his were still very low despite the platelets he received yesterday. We had plenty of time before our CT scan was scheduled so we went and got his platelets started. While we were getting them, Ronan fell asleep on the little couch next to me. Fernanda and I sat and watched him sleep and quietly talked. We both tried to block out the sounds of the screaming boy next to us who was about Ronan’s age. The poor thing must have screamed bloody murder for a good half an hour. I felt so helpless and so sad for the child and parents. I told Fernanda sometimes watching the parents go through this is almost harder than watching the kids. It is a lose lose situation for everyone involved and never gets any easier to see.

After Ronan was finished with his platelets, we headed down to get his CT scan done. I must have been told by 5 different people that he needed to be ready for anesthesia, even though I told everyone that he didn’t need it today. We got down to the CT room and sure enough the nurse came up to me and on her piece of paper says the word, Anesthesia, in big red letters. As soon as I saw this I told her that Ronan would not need anesthesia today. She looked at me like I had three heads and said that she wasn’t told this but that we could try it without, first. We went back to the room and I put Ronan on the table as he clutched onto his Star Wars guys. I had prepped him all morning for how he had to hold still and how it was going to be a piece of cake, just like radiation. He understood the drill and was very excited that I was able to stay in the room with him this time, unlike RT where I had to leave him all alone. The whole CT scan took about 10 minutes. He held so still and I acted out a scene from Star Wars for him with his Clone Troopers and told him all about the secret mission they were going on with him. He smiled the entire time and listened with his big eyes looking up at the CT machine. I was so proud of him; once again. He truly amazes me with how brave and strong he is. When we finished, all the techs told them how great of a job he did and he gave them all knuckles as he walked out the door. Such a little Rockstar, my Ronan.

I’m not sure where the rest of the day went. We had to wait around forever to get Ronan’s MIBG injection for tomorrow’s scans. We ran out for a bit and went to Dylan’s Candy Shop which I am totally over at this point. Four trips there, in the past 3 weeks for overpriced candy and you cannot even move in the store due to it being jam packed with people. If I never have to see that place again, I will be so happy. And this coming from me, an avid candy connoisseur, is huge. I’m done with that place. After Dylan’s, Fernanda was about to pass out from being on the “Maya diet,” which consists of not eating, so I took her to 4 carrots to eat. I pretended to eat a half of a sandwich for her, but she busted me and gave me a very stern but loving talking to about my lack of food. Ronan and Fernanda ate which was all that mattered to me. I did take a small Fro Yo to go and ate the whole thing for her. That’s the best I could do today.

I asked a few times if Dr. Kushner would read the results of the CT for me today and I got put off which I kind of expected. Everybody reassured me that if there was something that was not good, he would have come to talk to me. I hope they are not eating their words tomorrow. I’m going with the no news, is good news approach tonight so I can hopefully sleep a little easier.

We got back to the RMH later this afternoon and Fernanda hung out for a while. I practically had to force her out the door and told her to get some rest even though she tried to say she was coming back later this evening. I was not having it as she needs her rest too. My friends, Ed and Diane who are in town with their two little boys came by to see us. We had been looking forward to seeing them all day. They came armed with enough toys for Christmas. Ronan was in heaven not only because of the toys, but even more so because he had two boys to play with. He should have been wiped out from today, but he ran around here and played with those two until 9:45 tonight. It was so good for him and made him so happy. Thank you, Ed and Di. You two and your boys were just what we needed after a long and hard hospital day. I am so blessed to call you my friends.

Alright my dears. This is all I have tonight. I hope you all had a beautiful day full of many blessings. Tomorrow is a huge day for us and I am going to be channeling all of your strength and love. Sweetest dreams to you all.

xoxo

The circle of life…. sucks

We woke up early this morning and ready for our clinic day. Fernanda, who flew all night arrived just as we were getting ready and ran down the street before seeing us to grab me a coffee. Ronan and I went out on the street to meet her and I cannot tell you the wave of happiness that washed over me as I saw my friend and her gorgeous smile, waiting across the street for me with two coffees in her hands. I was so happy to see her and we held each other tight as we embraced for our hug. She has such a way with me and I am instantly comforted by her mothering instants. I often feel like she is not only helping me take care of Ronan, but she is so good at taking care of me as well. I usually have a hard time letting go and letting other people do things for me but with Fernanda, it just comes naturally. I feel like she is my female version of Woody, if that makes sense. She is a source of such strength and comfort to me, much in the way that Woody is. I always know that when Fernanda is around, that everything is going to be o.k. Trish asked me tonight how in the world Fernanda does it all. My reply was because she’s Mary Freaking Poppins. Seriously. There are not many women in the world like her. We have such a strong connection and I am often amazed at the way we sync so well. Many times, I will be thinking about her, and then 10 seconds later she will call or text me. Our minds seem to be thinking the same thing and all I have to do is look at her to know this. Words are sometimes not even necessary. I am so honored, blessed, and thankful to have her here with me. I will never get over her leaving her 5 beautiful babies and husband at home to help me and as much as I tell her this, she acts as if it is nothing, but it means the world to me.

After I reunited with Fernanda, we headed off to Sloan to get Ronan to the clinic for his platelets. He was not happy about going and being “hooked up,” as he calls it. But I assured him it would only be for a short amount of time. We arrived and the nurse got things moving pretty quickly. Ronan was entertained by Fernanda waiting on him hand and foot and we promised him a trip to Toys R Us after we were done. We finished with our platelets quickly and went to meet with one of  “The Team,” members to discuss the plan for the next couple of days as far as scans go. Ronan coroporated for his exam and we were soon out of the door and off to enjoy the rest of the day. We decided to walk to Toys R Us, which was about 3 miles away but Fernanda and I agreed that the exercise and fresh air would be good. Almost as soon as we started our walk, Ronan fell asleep in the stroller and remained that way the entire trip there. It was a fairly wet, dreary, New York day, but I am such a sucker for this weather that I enjoyed walking in the rain.

Toys R Us was a hit but it was packed full of so many people. With Passover, Easter, and Spring Break here, the streets of New York are just as busy as Christmas. We couldn’t escape there soon enough and hailed a cab back to RMH instead of walking again. Fernanda picked up food at Delizia’s for us and we ate it together on the second floor in the community dining area. After lunch, she headed back to where she is staying so she could get in a little nap. Ronan and I were both tired too, so we came back to our room to rest. Before we came back to our room we went to check to see if we had any mail. We were told we did and it was a big box from our favorite little boys’ line; Fore!! Axel&Hudson. We took the box up to our room and I helped Ronan open it up. It was full of the most adorable clothes and hats for Ronan, as well as the cutest little girl Fedora hats. I handed out the hats to a bunch of the girls here and they were so excited. I think the moms were more excited as they kept trying to see if they would fit their heads. It made me feel so good to light up the faces of these beautiful girls today. Thank you Denise, for allowing me to hand out such amazing gifts. Ronan, being the stylish kid he is, lit up like it was Christmas. He kept trying to wear three hats on his head at once as he said he couldn’t choose because he loved them all. Denise, if you are reading this, please know that you and your company are absolutely amazing to support pediatric cancer the way you do. You are inspiring, brilliant, and if the world were full of more people like your company, it would be a much better place. Not to mention, the quality of your clothes are to die for! I am so proud to put my little Rockstar in your gear. Thank you from the bottom of our hearts. Everybody needs to check out their website, I should have a link on the side of my blog. I will forever support you and your clothing line. It makes Ronan’s day to be all dressed up in your adorable boy clothes and hats.

After we woke up, Fernanda texted me to say she was ready to come back over so I could go on a run while she watched Ronan. My run didn’t end up happening as we went across the street to Barbra’s apartment, who runs the organization Candlelighters, as she had a Star Wars treat for Ro and I wanted her to meet him anyway. We stayed for about an hour and enjoyed the company of Barbra, her husband, another mom, and her son, Jack. It was soon getting late so we headed out to grab dinner before Ronan got too tired. We sat and I ate for Fernanda. She talked me into some protein and asked if I really wanted to eat it or if I was just doing it for her. I told her it was all just for her and I did the best I could on the food in front of me. She is such a mother hen, which is a very good thing for me now. There was some awful woman sitting next to us at dinner and I was wondering if I was the only one picking up on it, but I gave Fernanda my look and I knew she knew it too. She kept looking at Ronan and it was if she wanted to throw up her dinner. She kept giving us the dirtiest looks and I wanted to say to her, “I’m sorry, if the fact that my child has cancer bothers you so badly that you can’t  eat.” The look of disgust on her face was so obvious that I wanted to go over and strangle her. When we were walking out we got a few more looks or more like complete stares. I noticed them all and Fernanda did too. She totally gets what I was talking about yesterday on my blog. The staring is everywhere. If you’re at least going to stare, have the balls to come up to me and say “God bless you.” Or “We’ll keep him in our prayers.” Don’t just be rude and stare. Grow some fucking balls and be proactive about him, who has a name. His name is Ronan Thompson, and he lives on this fucking planet. Stop acting like he’s from outer space. Somethings gotta change because if this  keeps going on, I may go postal on someone’s ass. After dinner we came back to RMH and played with Ronan. He was tired from todays events, as we all were. Fernanda hailed a cab and went back to her place. After she left, Ronan decided he was still hungry and he wanted scrambled eggs to eat. I happily made them for him with extra butter and extra cheese. Anything to fatten my baby up. We sat while he ate and talked with some of our friends here. I’m not going to go into details but I am saying extra prayers tonight for a very special little girl here whose mother I have fallen in love with. She isn’t doing too well and watching what the mother and father are going through is heart wrenching. It is a place that no parent wants to be and all I can say is another big Fuck You to cancer because there are no other words.

While I was taking Ronan upstairs to get ready for bed I was talking to Woody. I guess he told me last night but I was asleep and don’t remember our conversation, but our little wiener dog, Monroe, passed away. As soon as he said those words the conversion we had the night before slowly started to creep into my head. I started sobbing hysterically. Our two dogs, Monroe and Douglas haven’t lived with us for about 3 years due to trying to sell our house, then selling it and moving into our new house, so they have lived with Woody’s parents who also had 2 wiener dogs. While my 2 were there, one of their dogs passed away so we just ended up leaving our 2 so they could be with the one dog Kay and Charlie had left. They were happy there, together, and Woody’s parents have the perfect back yard for the 3 little musketeers. We missed them a lot but life all of a sudden got so busy, and we would spend time with them when we went over to their house. Little Ro, as we called her was an itty bitty thing. She loved to lick you and be held and was always shivering because she was cold. She was the sweetest thing. Hearing that she passed away hit me harder than I though it was going to, considering what we are dealing with now. It still made me very upset as it’s watching the cycle of life and that is never an easy thing. Woody bought those dogs for me before we got married. They were our first, “babies.” Tonight, I will say a little prayer for my little mohawked Monroe. She was the best puck rock Dachshund that ever lived. R.I.P little Ro. I’m sure we’ll hear your barking all the way down from heaven:) We all loved you so much.

So tomorrow. Ronan has a CT scan at 11:30 and we are tying to do it without anesthesia which I totally think he can handle. We of course need this scan to be good and I know they will be good. I have faith, hope, and love surrounding me at all times, so it cannot go another way. Please pray for him extra hard tonight. I will update you as soon as I can.  Thank you all my beautiful souls. You keep me strong when I am at my weakest and you push me forward when I think I can go no more. With all of you on our side, we can get my baby boy through this. Cancer has no idea how strong of a child he is and who they are messing with. They picked the wrong Ronan “Fucking” Thompson. I wonder when Ronan does beat this if they would really let me change his middle name to that. I’m sure not, but writing it out cracked me up tonight. He surely deserves it. My strong son, my strong boy, he will not be defeated. He is going to come out the other side of this with such determination to do amazing things in life. I cannot wait to see what kinds of things he comes up with and I will fully support him in everything he does. A mothers love is an unrivaled force of nature.

Ambien kicking in. I’d better get off this computer before I start writing crazy things. Good thing I don’t have a car to drive;) Totally kidding. I am going to cozy up in my twin sized queen converted bed with the most beautiful boy in the world. Just don’t tell my husband.

G’nite peeps!!!! Have a beautiful day tomorrow. G’nite Daddy Woo, Liam, and Quinn. Miss you!

Extra special G’nite to my twins’ 1st grade teacher, Mrs. Martin. Hope you had a beautiful birthday day, Cindy. You deserve it so much for being the best teacher we’ve ever had. We love you so much.

xoxo

Strangers on the Streets

Ronan and I slept about 9 hours last night. We both needed it as we were wiped out. After we woke up and got ready, we headed off to the clinic to have his labs drawn. He was not excited about going to the hospital today, but I promised him a trip to Dylan’s Candy Shop after. A little bribery works every time:) We went to the clinic, had Ronan’s labs drawn and I must have had my cancer brain completely turned on because instead of waiting around for his counts to come back, we just left. I don’t know where my head was today. I took Ronan to Dylan’s and then we went to Bloomingdales, Four Carrots, for lunch. I can thank my friend, Ellen, for introducing me to this spot. Ronan ate a ton and I let him have the worlds best frozen yogurt afterwords. He was in heaven. After a few hours out in the city, we started our walk back to the RMH. I looked at my phone and realized that I had missed a couple of calls from Sloan. I listened to the voicemail and it was one of the nurses saying that Ronan needed platelets as his counts were only 18,000 and they like to keep them over 30,000. Major cancer brain mush on my part. I said we could come back in, but I knew how upset Ronan was going to be. The nurse told me as long as we could come in early tomorrow morning, it wasn’t a problem. Good thing. Getting Ronan to go back to the hospital would have been a major ordeal. We came back to the RMH and I fed him dinner. We spent the rest of the evening playing in the playroom and then we came back upstairs to give him a bath. He didn’t nap today so he is pretty beat. He fell asleep about an hour ago and I am thinking he will be out for the night. We have an early day tomorrow so that is a good thing. Fernanda gets in at 6 a.m. and I cannot wait to see her. I could really use some of her amazing strength to recharge me right now.

While we were out in the city today I tried my hardest to ignore the looks we now get from strangers everywhere. The looks from strangers on the streets are now looks of pity, looks of sadness, and as strong as I try to be… these looks kill me. It is a constant reminder of what we are up against. Most people are extra sweet to us, everybody says how beautiful Ronan is, and I must have been asked 1o times today how he is doing. What am I supposed to say to this? I say the only thing I can; while fighting back the tears and plastering a huge smile on my face. I say he is doing great and is a very strong little boy. I am sure these strangers on the streets only have the best intentions, but all I want is feel normal for 5 minutes out of the day. All I want to do is to not be felt sorry for. I guess this is why I am so comfortable in our hospital environment. Being out in the real world takes so much energy and can be so draining. I feel like I am on constant guard to not only protect Ronan, but myself as well. When I’m out in the real world, with Ronan, my guard is up 110%. I wish I could tell these people, stop with the looks of pity, instead take this gift of mine and go and do something amazing in the world. Go make this world a better place because you are inspired by my sweet baby boy because your own problems aren’t half as bad as you think they are. I swear I’m going to start wearing a sign around my neck that says this. Ronan is something to be inspired by, not something to feel sorry for. Yes, he has a tough road ahead of him but he will win this fight and be an even more amazing of a human being because of it.

Alright my sweet friends. I never indulge in T.V. anymore but with Ronan sleeping soundly, I’m going to enjoy my favorite reality show, “Bethanny Ever After.” I love Bethanny Frankel and her show. She cracks me up. I hope you all had a wonderful day and have an extra sweet night. Love you all.

xoxo

A winking kind of weekend

After a whirlwind of a weekend… it’s now just Ronan and myself snug in our bed. I don’t even know what went on this weekend except it was lovely. And a blur. We had a weekend full of non stop fun, laughing, eating, walking, crying, and fighting (3 boys, it happens). In other words, it was a weekend full of complete and utter chaos. Just the way it should be when you are the parents to 3 little men. We enjoyed our time together as a family and with Macy. The boys’ are over the moon for her and she was a godsend. She helped me out so much and has an infectious way of making everything better. Thank you, Mace. For everything. You have no idea how much it meant to have you here with me and my family. I love you so much.

Today was a little hard. Having everybody leave at the same time was sad. My Liam, who I tend to think deals better with all of this than Quinn, had a hard time leaving today. I may be wrong about him dealing with all of this better. He is more mature than Quinn, but all of this is still really hard on him. Macy, Woody and the boys were all upstairs in our room and we were getting ready to go downstairs as their car was waiting. I looked over to see tears pouring down Liam’s cheeks and he was saying he didn’t want to leave. This in turn made me cry, Macy tear up, and Ronan as well. I held Liam tight and promised him that he would be back soon. I tried to give him a pep talk about all the fun things at school that he was getting to go back to. How great it would be to get back to baseball, his friends, etc. I tried my hardest to be super encouraging and excited for him but all I was thinking in my head that was this was all bullshit. Bullshit that I have to be separated from my family, bullshit that we are going through this, bullshit that we can’t all be back in Phoenix together. Fucking bullshit and there is nothing I can do about it. So I lied through my teeth today and told my first-born how excited I was for him to get back to Phoenix, and how great everything was going to be. I wanted nothing more than to hop on that plane with everyone. But I have learned that getting what I want nowadays is not so simple. Everything I want, I cannot have. This is a hard pill to swallow when you are used to having it all.

After the boys left, I held on to Ronan tight as he cried. He kept saying that he couldn’t believe Liam and Quinn had to go back to Phoenix and that it wasn’t fair. I played with him and tried to distract him from the obvious. After a couple of hours, the two of us cuddled up in our bed and fell into a deep sleep for a few hours. I woke up first to my phone ringing and it was Woody saying they were waiting to get on the plane. I could hear Liam and Quinn in the background and I told Woody how sad we were. He said he was sad too, and it gets harder and harder to leave us. We said our goodbyes and I cuddled back up with Ronan. He woke up about 20 minutes later, full on sobbing about wanting his brothers. I talked him through it and gave him a really long bath to try to make him feel better. After his bath he looked at me and said in his squeaky little voice, “You make me happy.” My heart fell to the floor. He always knows the perfect words to say to me when I need it most. We spent the rest of the night playing in our room. We made a quick run to the store to pick up some food. Ronan has been eating non-stop which of course, makes me very happy.

This weekend I heard Ronan say at least 20 times that this was the best day of his life. It was beautiful and heartbreaking all at the same time. Ronan also learned how to wink and practiced the entire weekend on Macy. It is the CUTEST thing alive. To see my little boy, with a grin on his face, winking non-stop on a pretty girl. OMG. No girl stands a chance against Ronan at the age of 3…. let alone during his teenaged years. Macy got a big kick out of this as she cannot wink herself. It kept us all laughing and Ronan was so proud of himself. He told me tonight that it was a winking weekend. He is such a big flirt.

As much as I enjoyed our weekend together, I was also filled with a ton of anxiety. Scans coming up, my family leaving, etc…. As much as I tried to let go; I felt like the weight of the world was on my shoulders. Last night around 7:30 I told Woody I was going out for a run. He was happy to watch the boys for me and I was so thankful. I hadn’t run in over a week which causes me major anxiety alone. I headed out in the rain to do my usual 8.4 loop. Being from the Pacific Northwest, I wasn’t going to let a little rain stop me as running in it is one of my favorite things in the world. A little rain turned into a full on storm but I refused to turn around. It was raining sideways and Central Park was empty except for me, the crazy mama whose son has cancer. I thought to myself, “If I see another person running out here, their child must have cancer too, because nobody in their right mind would do what I am doing now.” That’s exactly how I felt. My anger pushed me through and even the rain slapping me in my face good. I’ve realized that I now crave any kind of physical pain. It makes me feel good to feel something besides the own pain that eats at my soul 24 hours a day. A break from the emotional pain of all this is something that I crave. It is my only escape. After I made it back from my run (slayer free, little M) I am not kidding you when I say I returned back to our room and had to wring my clothes dry as they were more than soaked. I looked like I had just jumped into a pool fully clothed and had about an inch of water in my shoes. But after all of that, I felt a release that I really needed. Even though I think my body went into shock after my run. It was a hard run at a fast pace and because my workouts are no longer consistent, my body knows it. After a hot shower and a lot of water later, I felt better. My sweet husband offered to run out at 9:30 at night in the same pouring rain to get me some things at Target. He took Liam with him and they grabbed a cab and off they went. They came back with new sheets, a duvet, a duvet cover, and a few other things for me. I looked at him, as he was drenched, sitting on the bed as I helped him get out the sheets so I could wash them, and I thought to myself, “What a good man. What other man in the world would run out in the rain at 9:30 at night to try to get me some things to make our place feel a little more like home?” Not one. Woody is seriously one of a kind. I’ve known this about him since our first date. It’s not often that someone ends up begin everything you could have ever dreamed of and more. I am thankful everyday of my life for that man.

Our place at the RMH leaves little to the imagination. We have spruced it up as much as we can, but it is a far cry from my home sweet home in Phoenix. I am still grateful though. I don’t know what we would do without this place. We are making the best of it and have done little things here and there. We pushed the little twin beds together and turned them into a king sized bed. The things like the Star Wars decals that a family sent us now decorate one of the walls. I’ve also turned on of the walls into “Ronan’s fan wall,” and have started to put up drawings and pictures that people have sent. This led me to an idea….. I know so many of you read this blog, and often times I wonder what your beautiful faces look like. I wanted to ask if you would take the time to send us a picture of yourselves so I can put it up on Ro’s wall. It brings such a smile to my face to know I have all of you cheering us on and I would love to be able to see what you all look like. I thought it could be a fun little project that Ronan could look forward to. He loves to talk about all of you, even though he doesn’t really get all of this in the grand scheme of things. I often just tell him how he has people all over the world, who love him and who are helping to get him better. He loves to hear this.

Alright my lovelies. We are finally getting somewhat sleepy around here. I hope you all had a beautiful weekend. Scans are on Wednesday and Thursday so keep our little guy in your prayers. He needs them and so do we. Sweet dreams.

xoxo

Freeeeeeeedom!!!!!!!!!!!!!!!!!!!!!!!!!

4 weeks after being admitted inpatient, Ronan was discharged this afternoon. Finallly!!! It felt so good to get my baby outside in the sunshine and it was the most gorgeous New York City day. Woody came and picked us up to help with all of our things. We had so much stuff to carry out of the hospital. Ronan also insisted on bringing home his huge balloons that Dr. Maze sent him. I’m pretty sure a bunch of people on the streets of New York were assaulted by those balloons today. I could hardly see as I pushed the stroller with Ronan carrying all of his balloons. He was so happy to be free and unhooked and he was so excited to get back to the RMH to see Liam and Quinn. Woody left the boys there under the supervision of some volunteers who were conducting a Mad Science class. The volunteers are all so nice here and Liam and Quinn were having a blast when we returned. We also had a special surprise as Macy came right from the airport and to the RMH. Talk about the best day ever! Ronan is finally out of the hospital, Macy is here, and we are all together.

We spent the next couple of hours playing around the RMH and then all went out for dinner. It felt so nice to be out, even though we had a couple of meltdowns due to a couple of grumpy boys. After dinner, we came back home and up to our room where it looked like a bomb went off. I went into straight drill sargent mode and told Woody to hold down the fort so Mace and I could run to Ace Hardware for some organizational supplies. We were both so tired but I was on a mission. I knew there was no way I would sleep well tonight or be able to enjoy our weekend if things were left the way they were. Macy watched the boys while I tackled our room with Woody. Thank you, Mace.  3 hours later, and we are finally done. We not only put everything away, but we rearranged all of the furniture in the place. It feels so much better now.

We don’t have scans tomorrow. The Team has decided that they would like to wait until next week so that Ronan has more of a chance to recover from this last round of chemo. Woody and the boys are still flying out on Sunday and I will have Fernanda here with me for scan week. I have learned my lesson as far as trying to do those days alone as it is just too much. I am so thankful my friend will be here with me as Woody cannot due to the scan schedule getting changed. He has too many court dates set and clients to see. Thank god for Fernanda. We have a visit to the clinic tomorrow at 11, and then we are free the rest of the weekend. Cannot wait to enjoy New York with my boys and Macy.

This is all the update for tonight as I we are all so very tired. Sweet dreams to you all and thank you for thinking of us!!!!

xoxo