The beautiful stranger, life, death, and life again

Ronan. 2 steps forward, 3 steps back. Is that how this is going to work? That’s how I feel today. I had one of those days, where I feel as I can’t breathe without you. It started off the way it always does. “Good Morning, boys! Time to wake up. I’ve started your shower.” (insert happy face here)

Shower, teeth brushed, breakfast made, ….. wait. Where’s Ronan? I need to make his eggies. Oh. Ronan is not here….. but continue on anyway. Lunches packed, water bottles filled, dishes done, lights off, boys in car… off to school. Where are you? Because once again, you are not here. I always know this, but some days it smacks me in the face, harder than others.

Autopilot continues on. Boys dropped off, but I knew this morning, that I could not go home to an empty house. I took all of my “busy,” work and my computer to Starbucks so I could sit and get some things done. Coffee, couch alone, laptop out, headphones on, music blaring, and I did my best to ignore all the happy people walking around like sunshine was coming out of their asses. WTF you jerks. Don’t you know that my son just died of cancer? Why is everyone so happy and bliss? Don’t they know there are hospitals all over the world, filled with kids fighting cancer? Of course they do not. Why would they? It is much easier to live in,”The Real Housewives of Scottsdale,” than in, “The Real Housewives of Childhood Cancer.”

Just as I was about to fling myself onto the couch across from me, to strangle the two happy mommies, as they sat in deep in conversation in regards to our worlds problems….. “What are we going to do with all of our free time now that our kids are back in school??? “Yoga or Tennis?” mommy # 1 said. “Tennis has much cuter outfits. Let’s take up Tennis.” mommy #2 said. “I agree, but what am I going to do without my Nanny?” mommy #1 said. “I have to hire a new one soon, because taking care of a one year old, alone, is just too much for me. And it’s interfering with my Yoga.”

Deep breaths, I told myself. No judging. I closed my eyes as the conversation continued on… the screaming started inside of my head. And then she appeared. She, as in the beautiful woman, with the bald head, and hat on. She sat down right next to me. She looked like an angel. I touched her arm. The words, “Do you have cancer?” Just flew out of my mouth. Fuck. Did I really just say that? So elegant, Maya. I wish I would have just said to her, “Are you o.k.?” She smiled, told me yes. My next words were, “Are you going to be o.k.?” I wished they would have been my first. I’m still so very new to this world. I have no idea how to navigate it; and my bluntness tends to just organically take over. She told me she was going to be o.k. That they had caught her Breast Cancer at Stage 1. I felt a wave of warmth wash over me. I told her I had a bracelet for her and handed her an F U Cancer bracelet. I had my computer screen open, and your picture was on it. I then told her about you and how you, my 3-year-old, had just died of cancer. She looked shocked to say the least. I put on my bravest face as she sat with tears in her eyes and asked all about you. I did my best to tell her some of your story. It felt like another out-of-body experience. We sat for about 45 minutes and talked. It turns out, her little boy goes to the same school as Liam and Quinn. Such a strange, small world we live in. Such a coincidence. Or not. Such another sign from you. We exchanged smiles, tears, anger, and phone numbers today. I have a feeling I will be seeing her again. This story literally leaves me with my head spinning. Babydoll. I don’t know why this happened to you; but I know there is a much bigger reason than life. You were meant for so much more than just being on this earth. As much as I hate it, and would give anything to have you back here; I know there is something else. Watching all of these little things, that you are making happen, feels as if I am watching you being born, all over again. It often leaves me breathless, exhausted, scared, and vulnerable. But the “life,” part that you are creating, is going to be so beautiful. I just know it.

After I left Starbucks, I went to visit one of our lovies. I tried my best to sit still and articulate all of the thoughts I have swarming around in my head. I couldn’t even do it. My quietness crept in and took over. I am such an easy book to read. The quietness on the outside is always when I am screaming the loudest in my head. Our lovie knows this. Conversation went something like this:

Me: “Hi. I’m just sitting here, trying to figure out how I’m going to change the world.”

Lovie: “You are going to change the world. I have no doubt about that.”

Lovie: “What is going on with you? Why are you so anxious today?”

Me: (insert smartass reply here) “Um, I don’t know…. maybe because of the fact that my child is dead.”

Lovie: “No. That’s not it. There is something else going on. These past few days, your anxiety has been really high.”

Me:(insert another smartass comment here) “Fine. Maybe it’s because of this list. (throw yellow legal pad across couch) My shit list of 500 nothings, but everything, things that I have to get done.”

I tried to blame my anxiety on the “Shit List,” today, which has everything on it from buying toilet paper to writing Dr. Kushner a Fuck Off letter. The “Shit List,” of 500 nothings but everythings that are bogging me down. So many things that I don’t even know where to start. Did I really just not pick up our dry-cleaning, go to the bank, to the grocery store, today because I just couldn’t?? What the fuck is wrong with me that I could not complete these simple tasks today? Those things could have been easily done and checked off my list. I went Inferno Hiking instead; just hoping to run into that Pink Rattlesnake that Tammy told me about yesterday. I actually had a full on conversation in my head today with that Pink Rattlesnake as I was running up the mountain in 112 degree heat.

In my head, it slithered in front of me, showed me it’s fangs and told me it was going to bite my leg. I told that Pink Rattlesnake, that if it tried, I would kick off it’s head off and kill it because the world took you away, so now, I am invincible to any kind of pain. I know what it is like to feel the worst pain possible, so the pain inflicted by the Pink Rattlesnakes bite, would not hurt me at all. He would be wasting his time and his venom on someone who would feel nothing. I watched as the Pink Rattlesnake, slithered away down the trail to take cover under a shaded bush. I continued on my run up the rocky trail. I was almost to the top, where most people choose to stop, at the first bench. A man was sitting there. I took out my headphones and said hello and what in the heck are you doing up here, as nobody is ever out hiking when I am, in the middle of this heat. The man laughed and told me to come sit down next to him. I told him, no way…. that if he wanted my company than he was going to have to keep up with me and continue up the rest of the hill to the second bench. He got up and followed behind me. I told him that I was running up the hill, not walking, and that he’d better keep up. He did a pretty good job, all while managing to tell me that he had just moved here from Idaho, just got a divorce, he has 3 kids, used to live here when he was little. I listened, quietly, and didn’t really say much of anything. I focused on getting my butt up to the top of our place, as fast as I could. Mountain Mike said I was trying to kill him. I laughed. We got to the top, I did my breathing, pacing, and just being. Mountain Mike did all of the talking for about 15 minutes. I kept thinking…. fuck…. I’m going to have to say those words again when he asks about me. Sometimes I don’t feel like telling strangers about you, but then I feel like I am being dishonest about you, us and what has just happened. Mike asked me what my story was.

Me: “Well, you are basically looking at a human being, living life on this earth, in Hell.

Mountain Mike: “Why? Are you going through a divorce?”

Me: “No. My 3 year old son just died of cancer, hence the reason for the Inferno Hiking.”

Mountain Mike: “I am so sorry. You know, I feel like my divorce is a death. I was married to her for 25 years.”

Me: “Mike. That sucks. But you know what, I’m sure you will fall in love again and your heart will be repaired. Mine won’t ever be. EVER.”

I gave Mountain Mike one of your bracelets, told him to look you up, and then maybe he would understand a little more. I told him goodbye, it was nice meeting him, and I would see him on the way down. He started the trek down the mountain. I stayed at the top to do my talking to you. I stayed for about 15 minutes, put my headphones back on, and hauled ass as fast as I could back down to the bottom. I passed Mountain Mike again during my run. I told him to have a good day.

I was hoping the Inferno Hike would have helped to quiet my mind today; but it didn’t. I survived today somehow, but barely. I picked up your brothers from school, took them to Doctor Beth for a 2 hour individual session. Stacy came by to try to help calm me down over my “Shit List.” We went over everything I need to get done. She settled me down. After Dr. Beth we went to dinner with Daddy. I cannot even tell you how painful that was. We to to Wally’s and the owner goes, “How many?” I automatically said, “Five.” Fuck. I than said, “Actually just 4.” I keep forgetting that you are not behind me, running off, throwing rocks or doing something else naughty that I loved so much. The 4 of us sat at a table. It was just sad and pathetic.

We came home, played a board game as a family. We all got ready for bed. I tried to just sit and watch T.V. with everyone. I hate the T.V. now. I got up, headed into your room and just wanted to be alone so I could sob into your pillows, stuffed animals, and let your bed swallow me whole. I don’ t go into your room very often and tonight I so just wanted to sit in there, alone. But Quinn followed me. GODFUCKINGDAMNIT. I could not break down in front of him, I could not sit and sob for you, the way I so wanted to and needed to. Instead, I sat with Quinn quietly in the dark, held it all inside, and listened to him talk about how he used to love to sleep in your bed with you. I talked to him about you, let him love on me when that is so the last thing I wanted. I loved on him back, told him what an amazing little boy he was how I am so lucky to be a mommy to both him and Liam. None of it felt good or comforting to me. But as of now, very little things do. This is a hard pill for me to swallow. I am still so numb, sad, and in shock. Your daddy said to me tonight that he thinks the sadness from us of missing you is only going to get worse. I told him I agreed. For once, I didn’t try to argue back. He’s right. He knows too. We are all broken, Ro. I don’t know what to do with all of these broken pieces. Are they fixable? I don’t know. All I know is the pain today, was too much because I sat by and watched as all of us had a tough day. I can deal with my pain, but sitting back and watching your brothers and Daddy is so overwhelming sometimes. Just when I think I am strong, that I can get through this; it’s days like today that have me wanting to just throw in the towel. It’s days like today that I have to remind myself of you and how you lived your life. You never gave up. I have to use that strength from you, to survive days like today.

I have to go now, babydoll. I love you to the moon and back. I hope you are safe. I love you, Ro.

xoxo

The beautiful stranger, life, death, and life again

Ronan. 2 steps forward, 3 steps back. Is that how this is going to work? That’s how I feel today. I had one of those days, where I feel as I can’t breathe without you. It started off the way it always does. “Good Morning, boys! Time to wake up. I’ve started your shower.” (insert happy face here)

Shower, teeth brushed, breakfast made, ….. wait. Where’s Ronan? I need to make his eggies. Oh. Ronan is not here….. but continue on anyway. Lunches packed, water bottles filled, dishes done, lights off, boys in car… off to school. Where are you? Because once again, you are not here. I always know this, but some days it smacks me in the face, harder than others.

Autopilot continues on. Boys dropped off, but I knew this morning, that I could not go home to an empty house. I took all of my “busy,” work and my computer to Starbucks so I could sit and get some things done. Coffee, couch alone, laptop out, headphones on, music blaring, and I did my best to ignore all the happy people walking around like sunshine was coming out of their asses. WTF you jerks. Don’t you know that my son just died of cancer? Why is everyone so happy and bliss? Don’t they know there are hospitals all over the world, filled with kids fighting cancer? Of course they do not. Why would they? It is much easier to live in,”The Real Housewives of Scottsdale,” than in, “The Real Housewives of Childhood Cancer.”

Just as I was about to fling myself onto the couch across from me, to strangle the two happy mommies, as they sat in deep in conversation in regards to our worlds problems….. “What are we going to do with all of our free time now that our kids are back in school??? “Yoga or Tennis?” mommy # 1 said. “Tennis has much cuter outfits. Let’s take up Tennis.” mommy #2 said. “I agree, but what am I going to do without my Nanny?” mommy #1 said. “I have to hire a new one soon, because taking care of a one year old, alone, is just too much for me. And it’s interfering with my Yoga.”

Deep breaths, I told myself. No judging. I closed my eyes as the conversation continued on… the screaming started inside of my head. And then she appeared. She, as in the beautiful woman, with the bald head, and hat on. She sat down right next to me. She looked like an angel. I touched her arm. The words, “Do you have cancer?” Just flew out of my mouth. Fuck. Did I really just say that? So elegant, Maya. I wish I would have just said to her, “Are you o.k.?” She smiled, told me yes. My next words were, “Are you going to be o.k.?” I wished they would have been my first. I’m still so very new to this world. I have no idea how to navigate it; and my bluntness tends to just organically take over. She told me she was going to be o.k. That they had caught her Breast Cancer at Stage 1. I felt a wave of warmth wash over me. I told her I had a bracelet for her and handed her an F U Cancer bracelet. I had my computer screen open, and your picture was on it. I then told her about you and how you, my 3-year-old, had just died of cancer. She looked shocked to say the least. I put on my bravest face as she sat with tears in her eyes and asked all about you. I did my best to tell her some of your story. It felt like another out-of-body experience. We sat for about 45 minutes and talked. It turns out, her little boy goes to the same school as Liam and Quinn. Such a strange, small world we live in. Such a coincidence. Or not. Such another sign from you. We exchanged smiles, tears, anger, and phone numbers today. I have a feeling I will be seeing her again. This story literally leaves me with my head spinning. Babydoll. I don’t know why this happened to you; but I know there is a much bigger reason than life. You were meant for so much more than just being on this earth. As much as I hate it, and would give anything to have you back here; I know there is something else. Watching all of these little things, that you are making happen, feels as if I am watching you being born, all over again. It often leaves me breathless, exhausted, scared, and vulnerable. But the “life,” part that you are creating, is going to be so beautiful. I just know it.

After I left Starbucks, I went to visit one of our lovies. I tried my best to sit still and articulate all of the thoughts I have swarming around in my head. I couldn’t even do it. My quietness crept in and took over. I am such an easy book to read. The quietness on the outside is always when I am screaming the loudest in my head. Our lovie knows this. Conversation went something like this:

Me: “Hi. I’m just sitting here, trying to figure out how I’m going to change the world.”

Lovie: “You are going to change the world. I have no doubt about that.”

Lovie: “What is going on with you? Why are you so anxious today?”

Me: (insert smartass reply here) “Um, I don’t know…. maybe because of the fact that my child is dead.”

Lovie: “No. That’s not it. There is something else going on. These past few days, your anxiety has been really high.”

Me:(insert another smartass comment here) “Fine. Maybe it’s because of this list. (throw yellow legal pad across couch) My shit list of 500 nothings, but everything, things that I have to get done.”

I tried to blame my anxiety on the “Shit List,” today, which has everything on it from buying toilet paper to writing Dr. Kushner a Fuck Off letter. The “Shit List,” of 500 nothings but everythings that are bogging me down. So many things that I don’t even know where to start. Did I really just not pick up our dry-cleaning, go to the bank, to the grocery store, today because I just couldn’t?? What the fuck is wrong with me that I could not complete these simple tasks today? Those things could have been easily done and checked off my list. I went Inferno Hiking instead; just hoping to run into that Pink Rattlesnake that Tammy told me about yesterday. I actually had a full on conversation in my head today with that Pink Rattlesnake as I was running up the mountain in 112 degree heat.

In my head, it slithered in front of me, showed me it’s fangs and told me it was going to bite my leg. I told that Pink Rattlesnake, that if it tried, I would kick off it’s head off and kill it because the world took you away, so now, I am invincible to any kind of pain. I know what it is like to feel the worst pain possible, so the pain inflicted by the Pink Rattlesnakes bite, would not hurt me at all. He would be wasting his time and his venom on someone who would feel nothing. I watched as the Pink Rattlesnake, slithered away down the trail to take cover under a shaded bush. I continued on my run up the rocky trail. I was almost to the top, where most people choose to stop, at the first bench. A man was sitting there. I took out my headphones and said hello and what in the heck are you doing up here, as nobody is ever out hiking when I am, in the middle of this heat. The man laughed and told me to come sit down next to him. I told him, no way…. that if he wanted my company than he was going to have to keep up with me and continue up the rest of the hill to the second bench. He got up and followed behind me. I told him that I was running up the hill, not walking, and that he’d better keep up. He did a pretty good job, all while managing to tell me that he had just moved here from Idaho, just got a divorce, he has 3 kids, used to live here when he was little. I listened, quietly, and didn’t really say much of anything. I focused on getting my butt up to the top of our place, as fast as I could. Mountain Mike said I was trying to kill him. I laughed. We got to the top, I did my breathing, pacing, and just being. Mountain Mike did all of the talking for about 15 minutes. I kept thinking…. fuck…. I’m going to have to say those words again when he asks about me. Sometimes I don’t feel like telling strangers about you, but then I feel like I am being dishonest about you, us and what has just happened. Mike asked me what my story was.

Me: “Well, you are basically looking at a human being, living life on this earth, in Hell.

Mountain Mike: “Why? Are you going through a divorce?”

Me: “No. My 3 year old son just died of cancer, hence the reason for the Inferno Hiking.”

Mountain Mike: “I am so sorry. You know, I feel like my divorce is a death. I was married to her for 25 years.”

Me: “Mike. That sucks. But you know what, I’m sure you will fall in love again and your heart will be repaired. Mine won’t ever be. EVER.”

I gave Mountain Mike one of your bracelets, told him to look you up, and then maybe he would understand a little more. I told him goodbye, it was nice meeting him, and I would see him on the way down. He started the trek down the mountain. I stayed at the top to do my talking to you. I stayed for about 15 minutes, put my headphones back on, and hauled ass as fast as I could back down to the bottom. I passed Mountain Mike again during my run. I told him to have a good day.

I was hoping the Inferno Hike would have helped to quiet my mind today; but it didn’t. I survived today somehow, but barely. I picked up your brothers from school, took them to Doctor Beth for a 2 hour individual session. Stacy came by to try to help calm me down over my “Shit List.” We went over everything I need to get done. She settled me down. After Dr. Beth we went to dinner with Daddy. I cannot even tell you how painful that was. We to to Wally’s and the owner goes, “How many?” I automatically said, “Five.” Fuck. I than said, “Actually just 4.” I keep forgetting that you are not behind me, running off, throwing rocks or doing something else naughty that I loved so much. The 4 of us sat at a table. It was just sad and pathetic.

We came home, played a board game as a family. We all got ready for bed. I tried to just sit and watch T.V. with everyone. I hate the T.V. now. I got up, headed into your room and just wanted to be alone so I could sob into your pillows, stuffed animals, and let your bed swallow me whole. I don’ t go into your room very often and tonight I so just wanted to sit in there, alone. But Quinn followed me. GODFUCKINGDAMNIT. I could not break down in front of him, I could not sit and sob for you, the way I so wanted to and needed to. Instead, I sat with Quinn quietly in the dark, held it all inside, and listened to him talk about how he used to love to sleep in your bed with you. I talked to him about you, let him love on me when that is so the last thing I wanted. I loved on him back, told him what an amazing little boy he was how I am so lucky to be a mommy to both him and Liam. None of it felt good or comforting to me. But as of now, very little things do. This is a hard pill for me to swallow. I am still so numb, sad, and in shock. Your daddy said to me tonight that he thinks the sadness from us of missing you is only going to get worse. I told him I agreed. For once, I didn’t try to argue back. He’s right. He knows too. We are all broken, Ro. I don’t know what to do with all of these broken pieces. Are they fixable? I don’t know. All I know is the pain today, was too much because I sat by and watched as all of us had a tough day. I can deal with my pain, but sitting back and watching your brothers and Daddy is so overwhelming sometimes. Just when I think I am strong, that I can get through this; it’s days like today that have me wanting to just throw in the towel. It’s days like today that I have to remind myself of you and how you lived your life. You never gave up. I have to use that strength from you, to survive days like today.

I have to go now, babydoll. I love you to the moon and back. I hope you are safe. I love you, Ro.

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

A breath of fresh air

I spent today enjoying everything to the fullest. Woody and I made a big breakfast together for the boys, Mimi and Papa; who came over to take Liam and Quinn to get their flu shots. I ran some errands alone which was nice. I then met Woody over at The Village to watch Liam and Quinn’s basketball game which was the highlight of my week. Danielle, her amazing boyfriend, Dave, and Trish came to watch as well. It was such a great game and I found myself laughing and cheering the entire time. The twins played awesome… it was like a switch flipped and all of a sudden they get it. They were hustling up and down the court, throwing great passes, guarding their guys, they each made a basket and played with the most heart that I have ever seen them play with. I was grinning ear to ear watching them and seeing how much fun they were having. The most beautiful sight that I have seen in a long time. I loved sitting with my sweet friends too and hearing them laugh and cheer right a long with me. Liam and Quinn were so excited to have an audience<3 I wish I would have recorded it all but it will forever be engrained in my brain. There is nothing like watching your kids flourish at something they love. My heart is sooooo happy today. I feel like a whole new person…. well, maybe more like the older version of myself;  someone that I love and miss so very much.

After the basketball game, Trish and I went to Chestnut Lane for some lunch and girl talk. There is nothing like time with my bestie. It was nice to catch her up on some things that have been going on and to get to talk about our Marisa who just had her sweet baby boy, Max. I am so excited to see her and meet the newest little member of our inner circle. I am going to try to go to the hospital tomorrow to check in on them and to give Marisa the big hug that I have been saving for her. I’ve been missing her so much. Trish and I ran a couple of errands over at the mall and then we parted ways. It felt good to be out today, with her by my side. I even managed not to be bothered by being out in public. I am feeling stronger than I have in a very long time. I’m chalking it up to a very big weight being lifted off of my shoulders and the fact that Woody and I have really been enjoying each other lately. I have been missing spending time with him, doing all the little things that we used to do. Even just cooking breakfast together this morning was so therapeutic.

Tonight Mimi, Woody, and I all made a big turkey dinner together at our house. The boys played board games with Papa while we got everything ready. Ronan was pretty tired but ran around the entire night. He didn’t nap today so he finally fell asleep around 8. His energy amazes me. He had a few tantrums today…. I hate seeing him so angry. I know that anger is usually a secondary emotion so I am wondering what the first one is that he is feeling…. could be fear, or even pain. I hope he is not hurting physically and that is what is causing him to be so mad. I ask him all the time if he is hurting and he always tells me no. He has such a high tolerance for pain though so I can’t always trust what he says. I just pray that his little body is not hurting… that would break my heart. He is going through enough with everything and if he is feeling any of this, well, I don’t even have words to express how that would make me feel. All I can do is pray, watch him, and take the best care of him that I possibly can.

I am going to curl up with Woody and watch Saturday Night Live in a bit. Auntie Karen’s close friends daughter, Emma Stone, is hosting tonight. (GO EMMA!!!)You all should watch if you stay up that late. She is such a talented little thing and I love watching her in movies. She was amazing in “Zombieland.” One of my favorites:)

I hope you all have a beautiful weekend full of love and thankfulness. It is easy to get caught up in things that are not worth our time or energy, but it is even easier to just let some things go and live a life full of being true to ourselves. I know days like today are not going to come along very often for me for a while. I am going to have more bad days than good; which is a huge reason why I will forever cherish and remember today. The feeling of complete happiness is so easily taken for granted, but so easy to achieve when you know what really matters most in life.