Jar of hearts

Tonight, I honestly sat here and could not remember what month it was. It literally took me opening up my calendar on my computer to figure it out. That is how fried my brain is. What even happened today?? I’ll have to sit back and reflect so that I can tell you. We were all tired from a rough night, so slept until around 10:30 East Coast time…. 7:30 your time. Seemed so late but it really wasn’t as we have not adjusted to the time change yet. Once Ronan was up, we spent the morning playing and I snuck out around 1 to go back to the Ronald McDonald House to shower and change clothes. I called Fernanda and had a hard time talking to her due to just having a hard couple of days. I hung up with her and ended up being hysterical so I called Auntie Karen as I really needed to hear her voice. I just could not stop crying this afternoon, no matter who I talked to. After I hung up with her, I decided that I needed to go on a run. I laced up my shoes, and headed to Central Park. I cried most of the way… WTF?? I cannot seem to hold it together when I am away from Ronan. I do well with him, but when I’m by myself, I seem to have a hard time. My run was alright, gorgeous day, but I only ran about 5 miles due to my pounding headache and lack of energy. I came back to the RMH, took the hottest shower possible, and somehow managed to throw a bag together to head back to Sloan. I ran to Starbucks before heading back to the hospital and caught a glimpse of myself in a window as I passed by it. I had to laugh out loud at the outfit I had dressed myself in. To say I looked like a cute hobo is pushing it…. I was a mess from head to toe and topped it off with my favorite bright green North Face fleece hat on top of my head. Seeing myself gave me a good chuckle which is something that I really needed at the time. I sat in Starbucks and waited for my coffee and called Tricia to check in…the conversation started by me telling her that this cannot all possibly be real, that I still don’t believe it, because no matter how wild of an imagination I have, even I couldn’t make up the crap we have been through the past few days. I ended up bawling while on the phone with her in front of a coffee shop full of people. I don’t even care anymore…. I don’t care how ridiculous I looked, the stares, the wondering on people’s faces. I love that in this city, full of so many people, that I can completely break down and it doesn’t phase me in the least. I’m not going to hide my tears here; I’m tired of hiding them back home due to being so worried about my twins seeing me or because I am so caught up in our everyday life that it numbs me. Here, I am not numb, and as painful as it is, it is therapeutic in a way as well.

I returned back to the hospital to a very happy baby boy who was sweet as pie. He was so happy to see me. Woody was in bed with him and they had been playing Star Wars. It was so adorable to come back to. Ronan was due to get his second round of radiation at 6 p.m. so I told Woody to go shower as I didn’t want to be alone for it again. He left and soon after Ronan got sick to his stomach due to the chemo. They are giving him round the clock anti-nausea meds, but that isn’t enough. I had them give him another dose of something else before we headed down to the second floor for his “pictures.” Woody arrived just in time and we headed down to get started. Once again, Ronan was a champ. I set him up on the table, and watched as they raised him up high to start his treatment. Woody and I both kissed him and said we would see him in a few minutes and we left the room. We watched him on the monitors and talked to him the entire time. I cried once again. It’s really hard for me to watch him do this. The whole thing took was super fast today and took only a few minutes. So glad for that and so thankful he is not needing sleepy meds to do this. It makes it so much easier.

After radiation, we came back to the room and Woody ran out to get pizza from Ro’s favorite place and soup for me. Ronan didn’t eat much due to still being a little sick to his stomach but I did get him to eat a few noodles. We had a little bit of a scare while we were sitting in our room. Ronan was on my lap, shooting his pistol gun, and I looked down and he had completely stopped what he was doing and he was out like a light. I tried for about 30 seconds to wake him up, but he was out cold. I flipped out, told Woody he had passed out and to call the nurse which he did. I got him to wake up and within seconds we had a few doctors and nurses in our room checking his blood pressure and heart rate; all which were fine. I’m not sure what happened.. I don’t think he passed out as in fainted, but passed out as in from exhaustion. I think it was a combo of not napping today, chemo, radiation, morphine and anti-nausea meds that hit him all at once. It scared me to say the least. He ended up being fine and woke up and played for the next hour. I asked the doctor to reduce the amount of morphine they are giving him as I think it is making him a little loopy. They decreased it and he seems to be sleeping peacefully.

Woody is out like a light as well. He is beyond beat and is having a hard time too. It’s hard for me to see him this way, as I am so used to him playing the strong, lawyer, perfect husband and daddy role. Tonight he told me he is scared, which I of course already knew, but hearing him say those words is really hard on me. I’m trying my best to keep my ass kicking attitude going here, but it is hard when I know Ronan is in so much pain. This radiation just has to work on his arm so he can go back to the kid with cancer, who doesn’t feel a thing. I want my “healthy” boy back so badly.

I talked to Quinn and Liam tonight to tell them goodnight. I miss them every second of the day. We all do. I talked to them in my strongest voice and told them how much I love them and missed them. They sounded happy which gives me peace. Thank you Mimi and Papa for taking such good care of them. Thank you Lindsey for the text you just sent me with a picture of the full moon tonight saying you love me to the moon and back. After you sent me that text, I got up out of bed just so I could go and look out the window at the same moon as you. I love you to the moon and back too.

Time to get some rest here. Kisses and love to you all. Hope you are having a beautiful weekend. Thanks for checking in on us.

xoxo

Us right after radiation. That’s my boy:)

Never looking back

Hi my friends. I’ve missed you. It’s been a whirlwind of a week to say the least. We did our duty as parents to get all the opinions possible as far as Ronan goes. We have met with the best doctors, visited the best hospitals, talked to everyone we could get our hands on, strategized, analyzed, over analyzed, asked hundreds of questions only to come up with the one answer that I knew was there all along. I said this in my blog in December. I’ve known it in my heart for months now. New York is going to be the place to heal my baby. New York is where we were meant to be. I was very impressed with Dr. Mosse at Chop. That woman is amazing and I believe in what she is doing. She basically recommend MIBG therapy for Ronan to get us back on track for his Stem Cell Transplant, Radiation, and Antibodies. It is a good plan and the data is there to back it up; but the one thing we couldn’t get past was what if the MIBG therapy to get Ronan to minimal disease didn’t work. Then what? We are not going to send him into Transplant and we would have ended up at Sloan anyway, but with fewer options. Chop follows the standard COG protocol for treatment and through all of this, I have learned that Ronan is so unique, that he is not meant to follow the “standard route” of treatment. Dr. Kushner can offer us everything Chop has offered us and more. More options, more choices, more freedom. This man is not looking at my child as data. This man is looking at my child as an individual and will do whatever it takes to cure him of this awful disease. Ronan is not a number and Dr. Kushner truly will do whatever it takes to save his life. His hands are not tied by anyone. He can do whatever he wants and will. I’ll admit, this makes me a little nervous as I feel like he’s a bit of a wildcard. But that is a good thing. This disease is so aggressive that we have to give it all we can. I’ve nicknamed Dr. Kushner  my maverick Cowboy. Not to mention he defines brilliance. He is so unbelievably smart and is so dedicated to what he is doing. He believes he has revolutionized the treatment for this disease in a less toxic way. I am all about that. The less toxicities Ronan has to suffer, the better. The bottom line is, Woody and I both trust this man completely. He is the BEST. He is our best shot at getting rid of Neuroblastoma for the rest of Ronan’s life. He has no hidden agenda, he’s not worried about bringing in money, this is not a business to him. It is his passion, his life, and he is going to save our son. We are going this route and never looking back. New York is our future, New York is going to bring our baby back to us. There is no other option. So, the plan is in place and this gives me much peace of mind. Ronan has a long way to go as far as treatment goes but we will make this work. I will go in to detail later about what exactly we are doing but now, I am much too tired. We got home last night at 11:00 and I have been up since 7 this morning and am emotionally beat.

I texted my Mr. Sparkly Eyes tonight and told him that I will never understand why bad things happen to good people and that nothing in my life makes sense anymore. He called me back but I didn’t get to talk to him due to walking into a movie with my girlfriends. He is the best at calming me down with his words of wisdom. He brings me back to my center which I so need in my life right now. Today was a shitty day. Beyond awful but out of respect for others, I’m not going to go into details. I will just say that nothing in life makes sense and it is fucking beyond cruel. If one more bad thing happens this year, I may seriously strangle someone. Is it too much to ask for someone to throw a little happiness my way?? I cannot take having my heart broken all over again. It’s going to be hard enough having to uproot my life when someone whom I love so very much, needs me more than ever. And guess what? I can’t be here because some asshole named cancer has taken over my life, the life of my son and everyone around me. Good things better start happening and happening fast. Life should not be this hard, this painful, this sad. Tonight, my heart is broken and it’s nothing I can fix. My heart breaks for the most beautiful soul on this planet and all I want to do is take her away from all of this bullshit called life. Is anything in this life even true anymore? Because it all seems like a sick joke to me. I’m watching things happening left and right to people I know and they are not good things. We are all good people and it just does not make any sense. I guess the saying “You can’t make sense out of nonsense,” is really true. Well, I’ve had it with this nonsense and I am ready for a break from Phoenix. It’s time to get the show on the road and get Ronan better. Phoenix is not going to be the place to make this happen. We are ready for our new journey in New York to start and are welcoming it with open arms. So Ro baby, hold on tight…. you are about to turn that city upside down!

Ronan has felt great, looks amazing and is ready to take this on. Nothing can stop this kid. He was such a little trooper our entire trip and made every single nurse, doctor, and random stranger who worked in the cheese steak shop in Philly, (HI HELEN!) fall in love with him. I can’t tell you how many times people told me how he was the most beautiful child they had ever seen. He has such a light about him that attracts everyone because they can just tell by looking at him that he is going to do something very special with his life. He already is. I thank god everyday that he is mine. The look of determination in his eyes never goes away. He knows what he is up against and he is not scared. He is so brave, beautiful, and inspiring. Some days, I just sit back and watch how happy he is. He has no idea how awful his cancer is, he is just another happy kid who gets to take a lot of trips and have a lot of fun adventures. Everyday in Ronan’s life is an adventure and he is living everyday to the fullest while teaching us the true meaning of the things we surround ourselves with and how we choose to live our lives. We as a family feel so lucky to learn these things from him. Our little mini master yoga🙂

We have a busy weekend full of the twins’ sports which I am so excited for. We get to go and watch them play baseball and basketball tomorrow. Cannot wait for that. Ronan and I have to fly out to NYC next week for a couple of days to get the ball rolling on some things so I’ve got to get working on that as well. It’s non-stop and most days, I feel like I don’t even have time to breathe. I keep telling myself this is not the time to breathe, this is the time to run this bitch of a marathon and not stop until we are on the other side. I can do this thanks to the amazing support of my hubby, family, and friends. I won’t let you all down and most importantly, I won’t let Ronan down. We will get him through this. That I PROMISE.

Ice-age heat wave, can’t complain.
If the world’s at large, why should I remain?
Walked away to another plan.
Gonna find another place, maybe one I can stand.
I move on to another day,
to a whole new town with a whole new way.
Went to the porch to have a thought.
Got to the door and again, I couldn’t stop.
You don’t know where and you don’t know when.
But you still got your words and you got your friends.
Walk along to another day.
Work a little harder, work another way.

Well uh-uh baby I ain’t got no plan.
We’ll float on maybe would you understand?
Gonna float on maybe would you understand?
Well float on maybe would you understand?

The days get shorter and the nights get cold.
I like the autumn but this place is getting old.
I pack up my belongings and I head for the coast.
It might not be a lot but I feel like I’m making the most.
The days get longer and the nights smell green.
I guess it’s not surprising but it’s spring and I should leave.

I like songs about drifters – books about the same.
They both seem to make me feel a little less insane.
Walked on off to another spot.
I still haven’t gotten anywhere that I want.
Did I want love? Did I need to know?
Why does it always feel like I’m caught in an undertow?

The moths beat themselves to death against the lights.
Adding their breeze to the summer nights.
Outside, water like air was great.
I didn’t know what I had that day.
Walk a little farther to another plan.
You said that you did, but you didn’t understand.

I know that starting over is not what life’s about.
But my thoughts were so loud I couldn’t hear my mouth.
My thoughts were so loud I couldn’t hear my mouth.
My thoughts were so loud

Just FYI… This is what I feel like screaming tonight and I know a bunch of my closest friends would agree with me hands down. I am so lucky to have the circle of friends I do. We are so amazingly close that I consider them sisters and we would do anything for each other. Thank you girls, for rallying when one of us needs it the most and for the fact that we will all come out of this stronger, wiser, and even more beautiful. I love you all so much. You especially my sweet soul sister. You have held my hand from the beginning of all of this and have never let go. We can get through anything together.

G’nite to all of you beautiful people out there. Thank you for all the praying and loving you are doing for us. I thought of all of you while making this big decision. You were a huge factor in us choosing this route and I truly believe it was a decision that was met with such ease because of all of the positive energy you were sending our way. Sweet dreams!!!!!

xoxo

There’s beauty in the breakdown

Ronan and I headed to PCH this morning for his clinic visit and audiology test. Once we got to the clinic, I could tell Ronan had been put through enough this week, so I ended up calling audiology and rescheduling the rest of his test for next week. Enough is enough. It was a good thing because Ronan ended up needing a platelet transfusion and it took forever today. We were at the clinic all day long. I am so over this week. Next week is going to be just as busy. We are at PCH everyday except Friday. If I think I’ve had enough, imagine how my 3 year old is feeling. He’s such a good little guy though. He has been going with the flow with everything; except the audiology test. We’ll deal with that next week. We are going to spend this weekend letting him be a kid and enjoying being at home.

Our weekend plans are busy but low key. I am going to hot yoga with my friend Stacy in the morning. So looking forward to that. I need to get some of this toxic energy out of my body. Liam and Quinn have 2 basketball games tomorrow and their cousin Luke is going to come over and stay the night. All 3 boys’ are so excited, they beyond idolize their older cousin. We love having him here, and he is especially great with Ronan. I would love to sneak in a hike up Camelback but we shall see. I mainly just want to enjoy being at home with all of my boys. Our time together is so precious.

I just got some exciting news tonight. My dad, whom I have a very “special” relationship with, as it is not a normal daughter/father relationship. It’s complicated, it’s sometimes strained, but always honest to a fault. My dad, after being divorced for 16 years, got remarried. I never thought I’d see the day but I couldn’t be happier for him. I always pictured him growing old alone and the thought of this always made me very sad. He has been with the same woman for about 10 years now and I adore her. They finally tied the knot:) So happy for them both and I told my dad tonight that he’d better not screw it up again and he’d better take good care of her. I hope he listens. I have a feeling he will. She knows him better than anyone and knows just what to expect. My dad rarely reads this, but if you are tonight…. Congrats again to both of you. You have no idea how happy it makes me to know that someone will be by your side to take care of you, and in turn you will have someone to take care of as well. Everything is as it should be for just his minute in time and I am very thankful.

So, are you ready for “The List?” My friend, Fernanda, sent it to me today. It is something that she found while researching isolation for us. It’s a little overwhelming, but I have such a good army of people who are willing to do anything and everything for us, that I know it will be o.k. Thank you so much to all of you who are offering your help; you have no idea what this means to me. I can do this, Ronan can do this, we can do this. It is a glitch in time and I am going to make this positive in every way I possibly can. Nothing but the best for my baby; we are going to take this the crummy situation and make it as fun as possible for him.

I am going to make this list my bitch!!!!!!!! Let’s do this!!!!!!

Home away from home

Probably one of the most difficult emotional aspects of the transplant process is all of the time you will spend away from home if you don’t live near the hospital. Your transplant social worker or other hospital coordinator will help you arrange for housing if you live far away. During the weeks of outpatient transplant recovery most hospitals will require your child to be within a 30 minute drive (with traffic) from the hospital in case of fever or other medical issues. Although it’s comforting to be close to your hospital, chances are you’ll end up staying in a facility provided by your team, such as a Ronald McDonald House, local hotel, or temporary apartment. Some families are lucky enough to have friends or family near their hospital and able to accommodate them. Check with your child’s transplant team before making any arrangements, as individual hospitals have various guidelines and preferences for where a child may stay during the transplant process. Such guidelines relate to disease-control issues and are imposed with your child’s safety in mind.

Wherever you are, it isn’t home of course. That said, there are many ways to make your surroundings feel more comfortable and familiar.

Although lots of little knick-knacks can get dusty and are usually discouraged, bring a few favorite items from your child’s room or your home.

Consider laminating posters of your child’s favorite characters or movies to put up in the transplant room. Laminate family photos (easier with a copy printed from your computer if you have digital photos). Laminated items are easy to clean and make a better choice than framed items (usually not allowed on the walls because of nail holes).

If it is not provided, consider bringing a small lamp with a soft light. This can make any room more comfortable.

Invest in a portable DVD player or CD player if the transplant room will not contain a TV. If you’re staying for a couple of months, consider bringing a small TV if it is allowed (it may not be because of noise control).

Bring your child’s favorite towels, sheets, pillows, and blankets.

Bring washable stuffed toys for your child’s bed.

Consider bringing an area rug or play mat for the floor to soften up the room. Make sure it is easily washable.

If it isn’t provided, bring a shower squeegee. You can get one of these at Target, Wal-Mart, or the like. It will help control mildew in the shower.

Since food for caregivers is usually not allowed in individual rooms (to avoid germs), bring plenty of familiar snacks and foods to keep in the communal kitchen. Check with the medical team about any food since some are prohibited during transplant.

Preparing for isolation

Although your stem cell team will help you prepare, getting your child and yourself ready for inpatient isolation can be stressful and intimidating. Guidelines and rules for isolation stay can vary greatly from hospital to hospital; however, some suggestions and general information are provided below to help you get ready.

Insist that you be allowed to inspect your child’s isolation room before he/she is closed in. Check that every surface has been properly cleaned, sanitized, and repaired. Look in the corners, closets, etc. (Some hospitals go so far as to clean these rooms with toothbrushes and re-paint the walls and re-wax the floors between each patient.) Don’t be afraid to point out any dirty or damaged areas of the room. Check that your child’s bed is comfortable, safe, and clean. You don’t want to have to break isolation to get your child a new bed or have something repaired later.

All your child’s clothing will need to be freshly washed and completely dried in a dryer (no air drying) and placed in plastic sealable bags. This is for germ control. Hefty and Glad make oversized bags that make the transport a little easier. Once you get to your child’s room, these clothes will probably need to be removed from bags before entering the room.

You will also need to be freshly showered and dressed in freshly laundered clothes when you arrive at the hospital. Some hospitals will require you to shower again before entering your child’s room. Some will allow you to shower at home but ask that you not make any stops (gas station, grocery, etc) before arriving. If you do, you may be asked to shower again. Leaving the hospital may mean another shower (even if it is to just get a Starbucks). Remember, it’s all for your child’s safety.

Your child’s toys will probably need to be new or sanitized. Toys that can be completely submersed in water by either washing them in a sink or a washing machine can usually come in the room. Some hospitals will purchase new toys for children undergoing transplant, so check with your transplant coordinator before you run out to buy all new stuff.

Remember to sanitize and wipe down anything you plan to bring into the room. If it can go in the washer, put it in the washer. If it can go in the dishwasher, put it in the dishwasher. If not, seriously consider whether you need it or not. Check with your team about electronics, as anything electronic or with batteries will probably need to be cleaned by the environmental department of your hospital or otherwise may not be allowed. (Think laptops, DVD players, portable game devices, etc.) Notebooks, books, and other paper materials will probably need to be new or cleared by your transplant team.

Your child’s meals will need to be specially prepared, and the hospital will have a special menu for your child. Make sure your child’s meal comes wrapped in plastic. Check to see whether or not you can have a meal delivered for yourself as well, since you probably won’t want to leave your child to get a bite. Also check before you order any takeout. Some foods may be prohibited altogether in your child’s room.

As noted above, try to surround yourselves with familiar things — photos, posters, pillows, blankets, towels, etc. It may mean a little extra laundry for you, but it will help your child feel more comfortable. Rugs will probably not be allowed.

Make sure you purchase new toiletry items for your child- and COMPLETELY discard the old ones — don’t save them at home for use after transplant, because your child’s immune system will not be normal for a long time. These items include toothpaste, hand soap, toothbrush, nail clippers, lotion, deodorant, etc. Anything that has touched your child’s skin, hair, mouth, nails, etc. should be replaced, unless it can be washed or totally submersed in water (like a comb).

Bring a lot of straws and disposable cutlery for yourself, and don’t share with your child from your plate!!! This is not a time to be environmentally conscious or conservative. Don’t keep leftovers or leave food out for more than an hour. Don’t save a napkin from your takeout bag that wasn’t used. Germs are a totally different thing for your family now.

Consider bringing your own Swiffer and pads. Bring lots of anti-bacterial wipes and go over the computer keyboard, phone, door handles, counter tops, bed trays, buttons, blood pressure cuff, bed frame, and thermometer handle several times a day. Although the room should still be cleaned daily by the custodial staff, you may want to go over it yourself. The room CANNOT be too clean!

As convenient as it may have been during your child’s initial rounds of chemo, DO NOT share bathroom facilities with your child. Use the parent restroom outside your child’s room when possible. If your child does not use the toilet, make sure you wipe the toilet/sink after every use.

Be extremely selective about visitors, especially children. Your hospital will have special visiting policies during transplant, but be extra vigilant yourself. NO ONE (including you) should be in your child’s room if not feeling well. Young children (even siblings) should not be in the room at all (as they are less likely to report not feeling well). The smaller number of people you allow in, the better. Your child can get sick very easily during this time.

Insist that cleaning staff, food service staff, nursing assistants and any visitors entering your child’s room wear gowns and/or masks. Anyone entering your child’s room should ALWAYS wash their hands with soap and dry with a paper towel. If ANYONE coughs, sneezes, or sniffles in your child’s room, insist that they leave immediately. Small germs can cause big problems during transplant.

Some medical issues during transplant

Drugs. Your child will probably be taking several different drugs before, during, and after his/her transplant. These drugs are primarily administered to prevent viral, bacterial, and fungal infections, which can of course be very dangerous to your child during this time. Some of them don’t taste very good, so experiment if possible with your pharmacy’s flavoring system. Choose something that generally tastes good to your child, or whatever is most likely to go in and not come right back out. Get into a routine for administering these drugs — keep a schedule, checklist, calendar, or timer set, as each one is probably going to be administered at different times. Eventually you will be able to wean your child slowly off of each of these drugs as his or her counts begin to recover.

Nausea and fatigue. Not surprisingly, nausea and fatigue will be common for your child during transplant, as his or her body will be severely immune-suppressed. Expect lots of naps, easy fatigue even in low-activity situations, and overall crankiness while your child’s counts are recovering.

Food. Make sure you are fully-informed by your child’s medical team about food restrictions. The avoidance of fresh fruits or vegetables, deli meats, some breads, buffets, fast foods (unless freshly prepared), yogurt and some other dairy products, and tap water will be among the many restrictions for your child. Food also must be prepared in accordance with certain precautions, so make certain you understand all the requirements. Know what is safe and what is not. These restrictions are for your child’s safety, and shouldn’t be taken lightly. Some teams will refer to the rule “packaged, processed, frozen” as a guideline for foods for your child. As disgusting as it sounds, most of these foods are safe and should be the basis of your child’s transplant diet. If you’ve been lucky enough to avoid an NG tube or TPN before now, you’ll probably become familiar with one during transplant. Since most children don’t eat or drink for several days or even weeks during this time, the provision of nutrition by IV infusion is likely. Both options have their pros and cons, so discuss both with your team so you can make the best decision for your child.

Skin. Shortly before your child’s isolation, he/she will receive the final round of chemo. These high- dose chemos come with some added precautions to protect your child’s skin and internal tissues that you probably have had to experience during induction chemo rounds. Again, discuss the requirements and side effects of these drugs with your team. Some of the protective precautions taken may include: use of a Foley catheter during the duration of the Cytoxan dose; 4-6 hour bathing

intervals (round the clock) during and a couple of days after a Thiotepa dose; frequent mouth care with lidocaine or similar mouthwash to counteract mouth and GI sores that accompany several drugs (ACT or lidocaine-free mouthwash helps for a young child that cannot spit yet, and offering frequent popsicles before onset of mouth sores help to reduce the incidence and pain); protective creams (also for the skin burns that can accompany Thiotepa- ask for the Remedy line if your hospital provides, otherwise ask other parents what they used). One cancer family concocted their own recipe — equal parts Kaopectate, A&D ointment, and Aquaphor cream. Mix it all together in a big bowl, put it in a squeeze bottle (like a shampoo bottle), and rub on diaper area and any skin fold areas where irritation occurs. Keep away from the eyes, of course! Even if your child is out of diapers, his/her diaper area will be very irritated for some time. There are several creams that parents have found to work well during transplant. Dr. Smith’s Diaper Cream, Flander’s Diaper Ointment, or the homemade version mentioned are all standard choices. Be prepared to try lots of things until you find what works for your child.

Pain. Your child will most likely be on morphine or other pain control (either PC or continuous) at some point during the isolation period. This may seem extreme to us, but it really does help control the continuous irritation from mouth and GI sores, as well as the sometimes severe skin irritations. If your child is old enough, he or she may be able to control the dose, and the pump may be put on a continuous flow for some children. The doctors will slowly wean your child from the pump, and most children must clear the pump before leaving the hospital.

Keeping your family together during transplant

It’s hard to keep your family together during this difficult time, especially if you are traveling to a distant cancer center, if there are other children in the home, or if one or both parents still need to work. Having a support system is very important. Many times neighbors, relatives, and friends will take turns with your other children. As much as you would like to help them with their every day activities, it may not be the best solution at the time. Because there are so many disease-control issues with your transplant child, you want to try to minimize the number of people who come into contact with him or her during this time. As much as possible, your child’s only contact other than the medical team should be you and your spouse. Many hospitals will also not allow young visitors when your child is in isolation. Keep this in mind, and be sure to talk with your team before bringing siblings to visit in the hospital.

While your child is staying at a facility, hotel, or friend’s house near the hospital (either before or after isolation) consider bringing siblings to these places to visit and/or stay the night. Most of the time accommodations can be made, although not usually every day, when siblings want to visit.

Also think about trying a web-cam service to keep your child in touch with siblings, other family members, or friends. Someone at the hospital may be able to help you hook up this service, either on your own laptop or on one loaned by the hospital. This way your child can chat live with his or her family and friends. It works out great for Grandma, too!

Older siblings might enjoy keeping a journal or tape-recording themselves for your child to read or hear. If your child is old enough, he/she may want to journal back or tape-record a message back. Hearing familiar voices is also good for little ones, as they are very responsive to familiar voices.

Keeping yourself busy in the hospital

There are many things that you can do to keep your sanity while you’re inpatient with your child. Although not always the case, some children sleep A LOT during transplant and may even be unconscious for periods of time. Although this may be scary for you and your child, it is generally normal and will pass. In the meantime, you’ll have to find something to keep your mind busy. Since you probably won’t want to come and go from the room very often (minimizing contact with germs), you should bring along lots of stuff to keep you occupied. Some suggestions are:

Magazines, books, crossword puzzles

Laptop computer with internet access (sometimes hospitals will loan one to you)

Movies

Sketch pad or journal

Crochet, knitting, or scrapbooking

Hand held game system (may sometimes be loaned by the hospital)

Healthy munchie snacks (nuts, popcorn, etc.)

A new address book to fill out

Remember that your child’s toys can also be therapeutic for you- coloring and crafting have actually been shown to reduce blood pressure and quiet the mind!

Keeping your child busy in the hospital

You will need to bring some things from home to keep your child busy and happy while in the hospital. Many hospitals that offer transplant procedures do a great job of making your child’s room comfortable and homey, and provide toys and other items to help entertain the child. Ask to speak with a child life specialist or social worker BEFORE isolation to see what can be done to help your child’s stay more enjoyable. Remember that he or she will be very tired and may not feel well enough to play or do any activities. This doesn’t mean you shouldn’t try! Each day, encourage your child to get out of bed if possible, read, interact with you, watch favorite videos, bathe and change clothes, eat or drink, and walk. There will be some days that your child will not be able to do any of these things, but daily encouragement and motivation will help your child recover. Here are some suggestions:

Bring new board games or puzzles.

Buy or rent new movies or movies your child has been wanting to see.

Encourage play that gets your child moving and out of bed — bubbles, window markers, floor activities, tents, ball pits, video games like Wii, anything that might encourage your child to move! Most hospitals are supportive about bringing whatever you think might help your child. Just make sure it is either new or properly sanitized first.

Many hospitals will stock your child’s room with age appropriate activities, new toys or games, and other favorites based on information you provide about your child. New things are always a nice distraction!

Talk about the view with your child and encourage him or her to get up and look out the window. Even if you can only see a wall, sunlight and a busy alley can even be exciting.

Keep a calendar of your child’s activities and status each day. Display a large classroom calendar (you can get one at a teacher supply store, make one yourself from a poster board, or even ask the hospital for one) and keep track of your child’s days inpatient. Encourage him/her to decorate it too.

Remember to be happy and upbeat as much as possible around your child. Even on the toughest days, being positive can help your child feel better.

Preparing your home for your child’s return

Preparing your home for transplant is a big job. Once again, check with your child’s team as every hospital’s guidelines are different, but here are some suggestions:

At the very least, have all carpets in your home shampooed, steam-cleaned and sanitized. If you are financially able and your carpets are more than a few years old, you may want to consider replacing them. If you do this, don’t forget to vacuum the floorboards before new carpet is laid. Usually the carpet-layers won’t do that.

Have your duct-work professionally cleaned if possible and change the filter in your furnace. Buy enough filters to change them every month for the next year, and if you’re financially able, buy the really good ones.

Have your home cleaned top to bottom. Whether this is done professionally or by you, family, and friends, be very picky about how your home is cleaned.

Wash all draperies, throw rugs, throw blankets, pillows, sheets, and towels

Wash any stuffed animals

Vacuum or dust behind and under all furniture, including appliances. 4. Clean out your refrigerator and freezer.

If you have a door-front water dispenser, change the filter.

Discard or give away any house plants. Ask your team if you’re really attached. Some plants can just be moved to other rooms of the house.

Put away or discard your portable humidifiers. You probably won’t be able to use them in your home for at least 6 months.

Wash out all cabinets (inside and outside) in the kitchen and bathrooms. Clean all blinds

Scour all bathrooms.

Clean all light fixtures and fans.

Vacuum or dust all ceiling corners and vent covers.

Wash all windows and windowsills

Scrub floors and grout.

Clean your child’s toys with an alcohol/water solution. Add essential oil or lemon juice for a better smell!

Dust, sweep, mop, clean, vacuum and scrub everything in sight! Again, your home CANNOT be too clean

Have your chimney swept.

Don’t forget to insist that everyone who enters your home be healthy. Anyone with a sore throat, cough, sneeze, or sniffle should not be near your child until it is okayed by your stem cell team. This includes grandma, siblings, and even you!

Ask your transplant team about pets. Even the cleanest of pets carry germs, shed hair, and create bacteria in your home. Your team will be able to help you make the decision that is right for your family regarding your pets. At the very least, your pets should be regularly bathed and up to date on all immunizations.

If you haven’t yet established this rule, insist that anyone who enters your home remove their shoes at the door or in the garage. They should also immediately wash their hands with anti- bacterial soap. This includes service professionals, nurses, family members, friends. This should become the new normal for your home. Shoes and hands carry way too many germs.

Do not put hand towels in your bathrooms for about six months. Although it may seem wasteful to use paper towels, this is again an easy way to stop the spread of germs in your home for your child. Bath towels should be washed after every use for at least a few months. Same with bath mats and washcloths.

For at least six months, wash everything your child wears, even if it doesn’t “appear” dirty. Don’t “re-hang” anything your child has worn. Wash or clean favorite toys as often as possible.

Replace your child’s toothbrush every week or two for about six months.

Buy anti-viral tissues (Kleenex makes them)

Wipe down all kitchen and bathroom surfaces daily with anti-bacterial wipes for about three months.

Never leave a snack or cup (especially milk) sitting out for more than an hour. Again, what is normal bacteria for us can harm your child after transplant. Also, don’t save an uneaten portion from your child’s plate or cup. Be wasteful!

Finally, as cruel as it may sound, be careful about how you and others touch, kiss and hug your child for a while. Kisses on the mouth should be limited, and make sure that anyone who touches your child is healthy and has washed their hands. If your child touches someone or something that you’re not sure about, break out the anti-bacterial wipes. Again, it is difficult to think about limiting something as essential as human contact, but unnecessary contact with germs will definitely affect your child’s recovery.

Take a deep breath! This is a lot to digest! Yes, transplant is a challenging process, but it is also an important step in your child’s full recovery and remission. Although you may be feeling overwhelmed by the idea of your child’s transplant in the future, know that you can do it! Become fully informed about the necessary safety precautions, make a plan, and stick to it! Also, don’t try to go it alone – now is the time to rely on your Neuroblastoma community and your family and friends to support you during a trying time.

www.nbhope.org

Did you get all that? I am still trying to digest it all. I will be having a little pow wow session on Sunday with a few girlfriends to hash all of this out. I was born a fighter, I can handle this, it was what I was meant to do in life. I will take on the entire world to get Ronan better. Cancer has no idea who they are messing with. Nothing can come between Ro baby and his Mama Bear. We are an unstoppable team.
Cheers to you all tonight. May your weekend be filled with love, light, and laughter. I hope everyday is filled with adventure and smiles. LOVE TO YOU ALL!!!!!!!!!

P.S. Today was World Cancer Day. You know what I have to say to that????????????????? Earmuffs if you must.

A big FUCK YOU, CANCER!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

It is also my oldest and dearest friend, Sandy’s birthday. Happy Birthday my sweet, hobag, of a friend. LMAO!!!!!!!

The faces all around me they don’t smile they just crack
Waiting for our ship to come but our ships not coming back
We do our time like pennies in a jar
What are we saving for [x2]

There’s a smell of stale fear that’s reeking from our skins.
The drinking never stops because the drinks absolve our sins
We sit and grow our roots into the floor
But what are we waiting for? [x2]

[chorus:]
So give me something to believe
Cause I am living just to breathe
And I need something more
To keep on breathing for
So give me something to believe

Something’s always coming you can hear it in the ground
It swells into the air
With the rising
Rising sound
And never comes but shakes the boards and rattles all the doors
What are we waiting for [x2]

[chorus]

I am hiding from some beast
But the beast was always here
Watching without eyes
Because the beast is just my fear
That I am just nothing
Now its just what I’ve become
What am I waiting for
Its already done

Oh

Magic Medicine…. Day 1, Round 6

I feel like I don’t have a lot to say tonight. Ronan hasn’t gotten out of bed, except to use the bathroom, since we got here on Sunday. He says his legs are hurting and does not want to walk around, go to the playroom, or anything. I tried all day to get him out of bed. I’m sure a lot of this is due to all of the pain he is in from his surgery and just feeling crummy that he is in the hospital. He has been playing with his Star Wars guys, on my iPad, watching Mickey Mouse, and we have been reading a lot of books. I did get him to giggle tonight which I really needed. I downloaded a book for him on my iPad that has Grover in it and he thought it was hilarious. He has been really sweet, but really quiet which is not my little guy. The chemo finally started this evening. It took a few hours to get him hydrated before so it was around 5:00 p.m. before it got started. He is sleeping now and I am praying that he continues to sleep without getting sick to his stomach.

Sarah came to the hospital for a few hours this morning so I could run home and shower and do a little bit of laundry. Ronan was happy to see her and didn’t even put up a fuss when I left. She is so good with him and he loves her. It was nice to get out of the hospital for a few hours just to be at home. Felt a little sad and empty though. I try not to remember my old life too much anymore because it hurts so much. I am mostly just numb to everything and going through the motions. It’s all I can do right now. I am trying to come up with a way to make this whole isolation thing easier on everybody. I worry about Liam and Quinn a lot. I am thinking I can set up Skype and do things like help with them with their homework, etc…. I miss doing normal things like that with them and I worry that they are going to suffer. They are at an age where they are going to remember this time in their life and I am trying to figure out how we can make this into something that makes them stronger little men. Woody took Liam and Quinn to the Suns basketball game tonight with their entire basketball team. They called me when it was over and they were on their way home. I heard Quinn tell Woody it was one of the best nights of his life. I am so glad they had such a good time, but hearing him say that felt like I had just been slapped in the face. Bittersweet. It was one of the best nights of his life, and I wasn’t there. Makes me sad. All the time.

My girlfriends keep telling me they are going to kidnap me soon to take me out for an unbirthday celebration. I love them all so much, but I honestly feel like burying myself in a hole and never coming out. Hospital depression maybe? Or maybe just sad because my baby has cancer. I know things with Ronan could not be going better, but I am the one who has to watch everyday as he suffers and goes through what he is going through. It is the hardest thing to see and watch; and all day long I push my fear and sadness away to be happy and strong for him. Nights get me, when he is asleep and I have nothing to do but sit with my thoughts and watch him sleep, praying that every little whimper he makes is not due to any pain he is feeling. I will have to watch him closely tonight. This round of chemo is nasty stuff. I’ve gotten so good at the “cancer lingo,” and knowing what exactly the side effects are. Words like, Vincristine, Doxorubicin, and Cyclophosphamide, roll off of my tongue with such ease as if I’ve known them entire life. They are now words that I will never forget, no matter how hard I try.

Alright, that is all for tonight. I am going to get out my own head before it’s too late and I can’t get my thoughts under control. G’nite, sweetest dreams to all of you.

xoxo

Hello Insomnia and Nightmares

 

 

Awake. Lovely. Fell asleep for about an hour. Woke up due to horrific nightmares. Not going back to sleep anytime soon. I talked via text messaging to Ashley’s mom today; the little girl who underwent surgery. It went very well and she is now recovering over in the ICU. Her mom told me to prepare myself. Fuck. How do you prepare for something like that. I sent Woody the text message she sent me about what to expect. His response? “Fuck.” Great. My rock who is usually my positive power, knows what we are about to go through is going to be hell. I am trying to mentally prepare myself…. but I don’t even know if this is possible. She did tell me that she is completely in love with Dr. La Quaglia though:) That makes me feel a little better. Cheers to Ashley and her successful surgery. So very happy for her and her family.

Today, we spent the day all together as a family. Liam and Quinn leave tomorrow and I am devastated. Ronan is going to be so sad; those boys are his life. We tried to soak up being together as much as possible and had a great day. Lots of laughing and throwing snowballs:) Tonight, Woody and Quinn ran out to get some dinner down the street a few blocks. Ronan was so upset after they left because he wanted to go with them. He screamed and cried the entire time they were gone which was about 20 minutes. I was dealing with him and I looked over to see the tears pouring out of Liam’s eyes. I immediately left Ronan to his temper tantrum to tend to Liam. I sat and held him and asked him what was wrong. He told me how much seeing Ronan scream and cry, bothers him. I wanted to die right then and there. Of course it all makes perfect sense. Liam has been spending a lot of time with Mimi and Papa on this trip because they are his safety, his security. With them, there is no chaos, no unexpected, no scariness. Liam lives for calmness, structure, and rules. With Ronan, you never know what you are going to get and every second is different from the next. Liam does not like this at all and seeing him tonight all I wanted to do was to take him home, and just be able to put him back in his secure environment where all this madness does not exist. I held him for a long time, let him cry, and just explained to him why Ronan was acting this way. Ronan got so mad that I was tending to Liam that he shut himself in the closet. I let him; Liam needed me. As soon as Woody and Quinn returned, we ate dinner and then he took the twins upstairs to watch football. I curled up with Ronan and fell asleep; for a little while anyway.

So, it is officially New Years Eve. I am so ready for 2010 to be over. Worst year of my life. 2011 is going to be much better; I have a great feeling about it.

My friend, Sandy, sent this to me today. It made me smile and I agree with almost everything on this list. Thanks, ho;)

Written by Regina Brett, 90 years old, of the Plain Dealer, Cleveland , Ohio :

To celebrate growing older, I once wrote the 45 lessons life taught me. It is the most requested column I’ve ever written.  My odometer rolled over to 90 in August, so here is the column once more:

1. Life isn’t fair, but it’s still good.

2. When in doubt, just take the next small step.

3. Life is too short to waste time hating anyone.

4. Your job won’t take care of you when you are sick. Your friends and parents will. Stay in touch.

5. Pay off your credit cards every month.

6. You don’t have to win every argument. Agree to disagree.

7. Cry with someone. It’s more healing than crying alone.

8. It’s OK to get angry with God. He can take it.

9. Save for retirement starting with your first paycheck.

10. When it comes to chocolate, resistance is futile.

11. Make peace with your past so it won’t screw up the present.

12. It’s OK to let your children see you cry.

13. Don’t compare your life to others. You have no idea what their journey is all about.

14. If a relationship has to be a secret, you shouldn’t be in it.

15. Everything can change in the blink of an eye. But don’t worry; God never blinks.

16. Take a deep breath. It calms the mind.

17. Get rid of anything that isn’t useful, beautiful or joyful.

18. Whatever doesn’t kill you really does make you stronger.

19. It’s never too late to have a happy childhood. But the second one is up to you and no one else.

20. When it comes to going after what you love in life, don’t take no for an answer.

21. Burn the candles, use the nice sheets, wear the fancy lingerie.  Don’t save it for a special occasion. Today is special.

22. Over prepare, then go with the flow.

23. Be eccentric now. Don’t wait for old age to wear purple.

24. The most important sex organ is the brain.

25. No one is in charge of your happiness but you.

26. Frame every so-called disaster with these words ‘In five years, will this matter?’

27. Always choose life.

28. Forgive everyone everything.

29. What other people think of you is none of your business.

30. Time heals almost everything. Give time time.

31. However good or bad a situation is, it will change.

32. Don’t take yourself so seriously. No one else does.

33. Believe in miracles.

34. God loves you because of who God is, not because of anything you did or didn’t do.

35. Don’t audit life. Show up and make the most of it now.

36. Growing old beats the alternative — dying young.

37. Your children get only one childhood.

38. All that truly matters in the end is that you loved.

39. Get outside every day. Miracles are waiting everywhere.

40. If we all threw our problems in a pile and saw everyone else’s, we’d grab ours back.

41. Envy is a waste of time. You already have all you need.

42. The best is yet to come…

43. No matter how you feel, get up, dress up and show up.

44. Yield.

45. Life isn’t tied with a bow, but it’s still a gift.”

Here’s to you, Wooddawg. 9 years later, baby.

Today, 9 years ago, I was married to my best friend, the
love of my life, my Woody. The only person who has ever truly had
my heart. It was the happiest day of my life; until today. Today is
the happiest day of my life in a different way; a bittersweet way.
Never in a million years did I think that 9 years after I married
my husband, that I would be crying tears of joy because my baby’s
bone marrow scan came back as clean. Yes, that’s right, you heard
me, CLEAN! When Ronan was diagnosed, his bone marrow was filled
with 5-7 percent of Neuroblastoma. Now, it has come back as gone.
What does this mean you ask? It means a lot of things. It means
that the chemo is working, it means that the Neuroblastoma is going
to be easier to get rid of, it means that Ronan truly is kicking
cancer’s ass, and it means that we are once again, filled with so
much hope for our baby of ours. He truly is a force to be reckoned
with. Nothing can stop this baby, not even something as evil as
cancer. This is the best news we could have received today; the
best anniversary gift I could have ever asked for. It is truly a
miracle and proof that all of our prayers, love, energy, and
whatever else is out there, is working in our favor. We met with
Dr. La Quaglia today. He was serious and to the point, but also as
soon as he walked into the room, I knew. I knew that we were in the
right place and I knew that there is nobody in the world that I
would trust with the life of my child. It was like he had a circle
of angels surrounding him. I took one look in his eyes and the
trust was formed instantly. He of course told us how serious the
surgery was; he had to make sure we were aware of the risks. This
was hard for me to hear; but I know legally, he has to tell us
these things. He said on a scale of 1 to 10, 10 being the worst,
Ronan’s Neuroblastoma surgery was about a 3. I asked him how long
he anticipated the surgery taking and he looked at me and said, “As
long as it takes to do a perfect job.” Done and done. I know this
man is a gift from god and the only person that should be operating
on my child. With that said…. PLEASEPLEASEPLEASE…. spend all
day Monday thinking and praying for Ronan. He will need it and we
will need it. I have never been more scared in my entire life. This
is a huge deal… he has to get through this. Just imagining my
baby going through this makes me sick to my stomach. But he is a
fighter and has proven that he can handle anything. He loves us all
too much to leave us.

Tonight, I am asking that you keep a little
girl in your prayers named Ashley. Her mom got in touch with me a
few months ago and her daughter, who is 7, was diagnosed about a
week after Ronan. Today, as Ro and I were trecking through the snow
to Sloan Kettering, I heard her mom yell out my name. I turned
around and there she was, Nicole, on her way to Sloan as well. She
introduced herself and said she has been following my blog for
quite some time now. Ashley, will have her surgery tomorrow, by Dr.
La Qualia. I know she is going to be fine, but as always, extra
prayers help. I will keep you posted and I will be thinking of her
all day. I saw Ashley today. She has the exact same sparkle and
strength in her eyes that Ronan has. She is going to be fine;
another beautiful survivor.

So, New York has completey healed my
love for running. It truly has become my therapy again. Last night,
I was crawling out of my skin, dying to run since it had been a day
since I had gotten to. I headed up to Central Park and ran about 6
miles on complete ice. It was dangerous, crazy, and completely
cathartic. Tonight, I did the same thing as well. Right now,
running is the only thing that is saving me. I don’t have my
therapist here…. and I so need to do a phone conference with her.
Running is my saving grace for the time being. I am going to come
back here and make the NYC marathon my bitch. Mark my words.
Today, I got to meet the new love of my life, Miss Macy:) She is somebody
that emailed me awhile back on my blog to say that she lived here
and if I needed anything to please call her. She is around my age,
and we have been keeping in touch for awhile now. Finally, I was
able to meet this little angel of ours. And what an angel she is.
She came through the RMH, all bundled up in her fur, toting gifts,
and as gorgeous as can be. Ronan and Quinn instantly fell in love
with her and I did too. She stayed for a couple of hours and we
entertained the boys the entire time. Ronan was flirting away, up
to all of his usual tricks. Macy could not have been more fun and
just what we needed to brighten our day. Thanks, Macy… as I said
before, I feel like I’ve known you forever. I can’t wait to
celebrate my birthday with you.

So, tonight, I sit alone at some
amazing pub by the RMH, paying bills and blogging away on my
anniversary. Sad but true. I would of course, rather have Woody
with me but he so sweetly understood that I needed to get out.
INDEPENDENCE…. ugh. it is so important to me. I need this time to
do my thing…. blog, pay bills, be out in the real world
surrounded by people laughing and who have no idea what the fuck
cancer really means in life. Everyone here is laughing, drinking,
playing trivia, and living life to the fullest. Just as they should
be. Hey, it wasn’t so long ago that I lived this carefree life. I
will never take it for granted again. I used to be exactly like
these people in this bar. And I will be someday again. Someday, I
will be back here, with my husband, just enjoying each other and
not obsessing about Ronan’s cancer. Love you all. Sweetest dreams.
xoxox

This is dedicated to Ronan… thanks Linds. Because baby, he
is our firework. Do you ever feel like a plastic bag, drifting
through the wind wanting to start again? Do you ever feel, feel so
paper thin like a house of cards, one blow from caving in? Do you
ever feel already buried deep? 6 feet under screams but no one
seems to hear a thing Do you know that there’s still a chance for
you ‘Cause there’s a spark in you You just gotta ignite, the light,
and let it shine Just own the night like the 4th of July ‘Cause
baby you’re a firework Come on, show ’em what you’re worth Make ’em
go “Oh, oh, oh” As you shoot across the sky-y-y Baby, you’re a
firework Come on, let your colors burst Make ’em go “Oh, oh, oh”
You’re gonna leave ’em falling down-own-own You don’t have to feel
like a waste of space You’re original, cannot be replaced If you
only knew what the future holds After a hurricane comes a rainbow
Maybe you’re reason why all the doors are closed So you could open
one that leads you to the perfect road Like a lightning bolt, your
heart will blow And when it’s time, you’ll know You just gotta
ignite, the light, and let it shine Just own the night like the 4th
of July ‘Cause baby you’re a firework Come on, show ’em what you’re
worth Make ’em go “Oh, oh, oh” As you shoot across the sky-y-y
Baby, you’re a firework Come on, let your colors burst Make ’em go
“Oh, Oh, Oh” You’re gonna leave ’em falling down-own-own Boom,
boom, boom Even brighter than the moon, moon, moon It’s always been
inside of you, you, you And now it’s time to let it
through-ough-ough ‘Cause baby you’re a firework Come on, show ’em
what you’re worth Make ’em go “Oh, Oh, Oh” As you shoot across the
sky-y-y Baby, you’re a firework Come on, let your colors burst Make
’em go “Oh, Oh, Oh” You’re gonna leave ’em falling down-own-own
Boom, boom, boom Even brighter than the moon, moon, moon Boom,
boom, boom Even brighter than the moon, moon, moon

Christmas 2010

This  post was from last night. We have been having Wifi problems at the RMH. That’s why there have been lack of updates. I’ve missed you all and hope you had a great night last night. We had a beautiful time together and now the city is covered in a blanket of snow. Below is what I wrote last night. Love to you all.

Silent Night…. Holy Night…. All is calm… All is bright….

This is the lullaby that I have hummed to Ronan since he was born. I’m not sure why, but I hum or sing it to him every night before he goes to sleep. Since he was diagnosed, I’ve stopped singing it to him. I’ve taken the most beautiful song, and turned it into something crazy in my head, telling myself that I don’t want it to ever be a silent night because that means my baby will be up in heaven and not with us anymore. I’ve only told a few people about this… Tricia, Marisa, and Charisma. Charisma is the one who told me she understood, but really thinks the song is not about what I have turned it into. It has always been my favorite Christmas song; until now. What we are going through is so scary to me that I have taken one of the most beautiful things and turned it into something ugly and sad. Sometimes I feel as I don’t have control of the feelings and thoughts I have. How can I?? My baby has cancer; nothing will ever be the same.

We had a great Christmas morning. We stayed in our room, opened up gifts, and the boys could not have been happier. We were all together as a family and it was such a beautiful thing. As they were busy playing with their toys, I bundled up and braved the 29 degree temperature and headed out for my Central Park run. I ended up running 10 miles and it was beautiful, brisk, hard, and just what I needed. Before I came on this trip, I was telling a good friend of mine how I came here to run the NYC Marathon a couple of years ago and how I would never do another one again because it was so hard. He looked at me with a sparkle in his eye and goes, “Oh, you’ll do another one…. Just you wait and see.” As I was on about mile 7 tonight, I thought to myself… I am so coming back here when Ronan is all better to do this marathon again. I imagined Ronan waiting for me at the finish line, so proud of his mommy. I will run it for him, and for NYC. This is the city that is going to heal my baby and is healing his mommy as well. There is no place I’d rather be right now. Funny how this city feels like such a second home to me already. That is because it is full of all things magical, miracles, and it is all about taking that tumor out of Ronan. January 3rd cannot get here soon enough.

Tonight was bittersweet. I have been doing o.k. here at the RMH, but tonight my emotions got the best of me while we were doing the whole Santa thing with the boys and all of the other families here. They do such a beautiful job and are so generous with the gifts. I was standing up next to Woody and the boys, just kind of soaking it all in. Then the tears started and I couldn’t get them to stop. It was all too much. The room was full of the most beautiful kids, who are fighting so hard for their lives, but are still so happy. Then there were my 3 babies sitting there together; like it was just another Christmas. Woody pulled me down next to him and let me cry on his shoulder and tried to comfort me by whispering to me how lucky we are to all be together and that’s all that matters. He keeps telling me that together, we can get through anything. Team Thompson, as he likes to call us. He is such a good man. After awhile, the tears stopped but after the boys’ got their gifts I took Ronan up to his room. For one, he wanted to go, but two, I felt an anxiety attack coming on. Still not doing well in big social situations I guess.

I am fighting everyday to be brave and strong. Sometimes, this all still becomes too much. This will never become easy for me, everyday is a struggle. Imagine living everyday of your new life full of hurt, and watching everyone around you hurt as well. It is so hard, so unfair, but I know I just have to keep moving forward. I’m very thankful to be married to such a strong man. I would fall to pieces every second of the day if it were not for him.

That’s all for tonight. Time to cuddle up to my little boo and kiss that sweet, bald head of his for the millionth time today. He is our Christmas miracle, and he is the sweetest Christmas gift I have ever received. He is teaching us so many lessons along the way.

Love you all. Hope your holidays were so very, very blessed.

xoxo

The most wonderful time of the year

Christmas in New York truly is magical, even under our circumstances. Today, we spent the morning hanging out at the Ronald McDonald House, just enjoying the activities that they had going on. Around one, I skipped out, hailed a cab, and went over to pick up Liz so we could do a little holiday shopping. I had yet to get Wood a thing and talk about waiting until the last minute. Today really was the only free day I’ve had alone to do his shopping. Liz and I walked the streets of New York for 5 hours straight. It was busy, chaotic, and so much fun. We had the best time together and I feel so lucky to have her in my life. She is such an amazing young lady and truly is like a sister to me. The streets and shops were full of people everywhere and I could practically feel the city buzzing with the excitement of the holidays. I loved every second of being right in the middle of it. Today, I enjoyed a day of escaping our reality for a few hours…. even though Liz and I talked about Ronan a lot, we spent most of our day just enjoying our surroundings. It was a wonderful Christmas Eve day. Tonight, everyone came over to the Ronald McDonald House and we hung out. Ronan had a couple of meltdowns… he’s tired tonight; but happy. Liam and Quinn have been great and we have really been enjoying them. They love staying here with us. RMH does such an amazing job of having fun activities for the kids to do and everyday there is something going on. We feel so blessed to be staying here for such a long amount of time. It is a very safe, fun, positive, environment. I just know Quinn and Liam are going to look back at this Christmas and remember it as being a fun time, full of lots of laughter and love.

I wonder what you are all up to. I wonder if Christmas means more to you this year? It does to me. All I want for Christmas is for my family to be healed, my friendships to be stronger, and to have Ronan healthy. It was so hard for me to see his tumor on the scan yesterday. It made everything so real and seeing the very first scan, when the tumor was everywhere, took my breath away. It was so huge before. I just don’t know how that thing was growing in my baby and we had no idea. His stomach did not protrude at all…. he acted and felt fine. The doctors could not even feel it when they pressed on his stomach, yet it was everywhere. Such a scary thing. It it wouldn’t have been for his little left eye, we would have never known what was going on. I am thankful every single day that it metastasized up into the orbit of his eye… otherwise whose knows when or if we would have caught this.

Tonight, Karen, Olivia, and Liz went to church here at 11 p.m. I wanted to go with them, but felt like I needed to be with my boys. Karen said she was going to pray extra hard for Ronan, for me. What a beautiful gift they have given me this Christmas. I couldn’t ask for more. The thought of all 3 of those beautiful souls, sitting in a church in NYC, praying for us brings tears to my eyes. It’s one of the best gifts I’ve ever been given. I know he is going to be healed, I know he is going to grow up and be the most amazing man, there are too many people thinking and praying for it to go any other way. Too much love surrounds this little boy of ours.

This Christmas, I would like to say thank you to all of you and leave you with a little toast. To all of my family, friends, strangers, near and far…… thank you for thinking of Ronan and following his journey and believing in him. A toast to all of you. Cheers!

To Nearest

To Dearest

To The Truest

To The One’s Who’ve Been There

To The One’s Who Who’ll Be There

To Dropping Everything

To Honesty

To NO Judgements

To No Doubts

To Loyalty

To Trust

To Humbleness

To Knowing What Matters Most

To Having Our Back

To Asking For Nothing In Return

To Accepting

To Loving

To Kindness

To Living Your LIfe Full of Being Selfless

To All Of You, Who Know This Is True, And Know It Is Your Soul We See Shining Through.

Happiest Holidays!!!!!!

Cheers to being finished with Ro’s Stem Cell Harvest!

We spent 12 hours at Sloan today. I took Ro over there this morning to finish up his stem cell harvest. We are finally finished and they got more than enough, thank the lord. I don’t think I could have handled one more day of him being hooked up and I know he couldn’t have. We did a stem cell collection at Phoenix Children’s and many of you have asked why we are doing another one here. We are basically doing it for “insurance.” IF Ronan’s Neuroblastoma comes back….. which we pray it doesn’t, Sloan believes by having his stem cells before a relapse will increase our chances of killing this god awful disease. If they were to try to harvest them after a relapse, they don’t think the stem cells will be as good. They will stay here at Sloan, frozen, and hopefully we will never need them. We are taking every precaution as parent; we have no choice.

It was a good day though. I had a visit from a friend that just happened to be in the city for the day; a friend who was my very best childhood friend and whom I have not seen or talked to really since I was 13. She was so sweet to come by the hospital to see me. It’s so funny how life works out; as soon as she walked in it was like, hello childhood! She looked exactly the same, except even more beautiful…. if that is even possible. I am so glad I got to see her and so hope to spend some more time with her when she comes back from her trip. Thanks, Jen for coming by. My friend from AZ, Danielle, or DD, is in NYC too! Yay for that! She is staying with her brother in the city for a few nights then heading to spend Christmas with her family. She came by the hospital and hung out with us for a few hours. Always love having her around. So, I had two nice treats today from two lovely ladies. I feel so lucky:)

We have nothing else too major going on tomorrow. Ronan will go to the clinic for platelets and then Thursday we have his CT scan done. So anxious and nervous all at the same time. Please pray extra hard for him…. hoping the tumor in his abdomen has shrunk even more after 3 more cycles of chemo. I will keep you updated as best as I can. We go in very early on Thursday morning.

I am taking a night off from my run tonight and all 3 boys are going to stay with Mimi and Papa. I am going to enjoy a night out with Woody and some friends. A night out together is very much needed. Ronan’s spirits have been great; he is such a little trooper. I am the luckiest mommy alive.

Enjoy the rest of your day<3 It’s the simplest things that are the sweetest!!

xoxo

I heart NYC

 

We had the most gorgeous, smooth, flight today. Not to mention, we made it to NYC in 3 and a half hours, didn’t have to deal with security, lines, people….. we just drove right up to the jet and aboard we went. The pilots were amazing and they even let Ro co-pilot the plane! He was in heaven and I was so relaxed, calm, and felt a sense of peace that I have not felt in a very long time. Just knowing that Ronan was on a private jet, without germs or 300 other people was the best gift I’ve ever received. Again, thank you Mr. W…. when all this is said and done, I hope you can meet our baby boy so you he can look into your eyes, and tell you thank you. We are so grateful to you and what you did for our family.

We arrived at The Ronald McDonald house this evening. It is quite a sight and a very happy place, all things considering. They really do it up for Christmas and make everything extra magical. I am thankful that places like this exist. I don’t know what we would do without it. Auntie Karen came and met us and we grabbed some pizza nearby. We then she came back here and she helped me unpack and organize. Feels like home ready:)

Ro is asleep and I’m going to try to get some shut eye too. We have to be at Sloan very early in the morning so Ro can have some blood work done. Just wanted to let you all know that we are safe, thankful, and so happy to be here.

Sweet dreams, angels.

xo