A Barefoot Hike and Little Socks

Ro baby. Everyone is asleep. It is late. We had a late night out tonight. We went over to The Willets’ house, for dinner and to catch up and let the boys play. I so missed you tonight. I was so sad you were not with us. You loved those boys so much and used to always keep up with them, despite your younger age. I sat back and watched as L and Q, ran around with Gay’s three boys all night long. I used to have 3 too. Where are you? It feels so wrong to be the mom of only two boys now. I almost can’t take it. But it was nice to be with all of them tonight. I will say this for the rest of my life….. but we truly do have the best friends. Some are friends we have had for a long time…. like the Willets. Others are new and who came into our lives at the beginning of all of this, like Melissa and her family whom we had over last night. All are beautiful. After Melissa, David and their kids left last night, your Daddy goes, “You have made some really amazing friends through all of this.” I just smiled and told him I knew. I do know. I think about it all the time. It is another one of those gifts you have left behind. Our lovelies are everywhere. We had a nice time tonight as being with the Willets is calming to my soul. We love them so much. I love how laid back they are, funny, kind, and crazy. I love being surrounded by their boys and your brothers. I remember how much you loved being with them. I hope you were with us tonight. I think that you were. I was showing Gay how to put Pandora on her iPhone as she is new at all of that iPhone stuff and I’m an old pro. As I was playing with her phone, mine which was sitting on my lap, started playing music. Katy Perry’s, “Firework,” just started to play. I thought of you. I hope it was you. I think that it was. This life is so strange now. Nothing makes sense. I don’t know how it ever will again.

So, this WordPress Blog is so detailed. I have a whole stat tracker which gives me very specific details on how all of you lovelies are reading this blog. For example, on May 10…. a day after you passed away, Ro… I had 55,923 hits on this blog. On that one day alone. I check it out every few days, just out of curiosity. It tells me what search engine term people are using to find out about you. I get a lot of weird things, such as today… somebody searched this… “me and you baby dolls can drink.” Um o.k. Random and weird, but I guess I tagged Baby Doll before since that is what I used to call you and your website came up. These are the most popular search engine terms used from today.

rockstar ronan 1,438
rockstarronan 352
rock star ronan 93
ronan rockstar 54
ronan thompson 45
rockstarronan.com 43
rockstar ronan blog 43
www.rockstarronan.com 42
maya thompson blog 22
the ronan thompson foundation 21
rockstar ronan dies 16
maya thompson 15
rockstar ronan com 14
ronan thompson foundation

I get some funny things, some disturbing things, but most of all the two things that are searched the most are “Rockstar Ronan,” and “Rockstar Ronan dies.” The last one rips me to pieces every time. I often catch myself thinking, “Wait. What? Ronan died? How can that be true?!” It’s as if I am the blog reader, not the writer. Oh, how I wish that were true. My body than returns to itself, because reading those words truly does feel like an out of body experience. I have to remind myself that you, my beautiful son, did die of Cancer. I sometimes cannot even take reading this, so don’t ask me how I am able to sit here and write this. I still have no clue. One day, I will sit back and read all of this, but not today. I don’t know what I am waiting for, but as of now… it’s the writing that I need to do. The reading, can wait. I know there is no way I am ready to read what I have written in the past. It is going to be so painful and everything is still too fresh and raw.

Ro baby. I started that last night but had to stop due to the Melatonin kicking in. I had dreams about you. They weren’t happy, but they weren’t sad either. I don’t remember what you looked like, but I remember asking you questions. I asked you if you were scared. You told me, No. I’m glad for that. I hope you’re not scared as that is one of the things I worry about most. I still feel like I have just forgotten you somewhere, and that you are all alone in this big, big world. I miss you so much. I am glad I got to dream about you last night. It does not happen often.

I woke up this morning, knowing that I had to have a productive day, regardless of the day off that your brothers had from school and your Daddy has off from work. I got up and showered. I messaged back and forth a bit with a girl named, Katie, whom I have never met, but I have wanted to meet for some time now. She is just a friend on FB and owns an adorable kids clothing store. She is always reposting this blog on her business FB page and I’ve wanted to stop in for a while to tell her thank you. She told me she wanted to run some ideas past me so I said I would stop by this afternoon. I took Quinn with me. I walked into her store, Garage, and instantly fell in love. It is filled with all the things, your stylish self, would have gone crazy over. You loved to dress so sharp and stylish. I met Katie and felt like I had known her for years. We sat and got to know each other, while Quinn played and explored in her store. We went over an idea she has, which I’ll be talking about a little more once the details are finalized. I left her with a bunch of your bracelets, the Naughty and Nice version. I have to be careful about the people I partner up with, who want to help with your Foundation…. but everything with Katie felt right. And just as I was getting ready to leave, “Landslide,” by Stevie Nicks came on. If that wasn’t a sign right there, I don’t know what is. I started to tear up, and Katie told me I could sit and listen to it if I wanted. I told her that I had to go, because I knew if I did stay and sit, that I would be a uncontrollable mess. I left there with tears in my eyes but a smile on my face. Thanks for being there with me today, Ro.

I ran a few more errands with Quinn. Talked to NY Miss Macy. She has been with Tricia all weekend long as Trish flew to San Francisco for this long weekend to spend some time with her. I love that. I so wanted to go, but it is not the right time for me to be away from your brothers. It made me happy though, to know my beautiful besties, were spending some quality time together. I sometimes cannot believe that had it not been for you, that Macy would have never been introduced into our lives. She is a gift that I will treasure forever. For as big as the hole in my heart is now, I know you are trying to fill it up as much as you can with people like Macy. I know that you are still working away, trying to find ways to make me grateful and happy again. Your gifts come in so many different forms now. For that, I am grateful.

After finishing up my errands with Quinn, we returned home and the rest of the afternoon was spent doing things around the house. Checking things off my shit list, left and right. I picked up my friend, Julie, who lives right down the street and I took her Inferno Hiking with me. She loved it and almost threw up, but did not. She is a trooper:) I am also glad to know that I am not the only one who sometimes throws up after a hard workout. We got to the top and she was saying that it was kind of like Hot Yoga. I told her exactly, except it was much better:) I can’t wrap my head around being peaceful enough within myself to go back to Hot Yoga. I told her how Inferno Hiking to me, is very intense, yet peaceful. She completely agreed. As we were heading down, Mountain Mike, was on his way up. So funny that we always seem to be there at the exact same time, even though the time that I hike, is never consistent. We said our hellos and I introduced him to Julie. He continued up as the two of us then started on our run down the mountain. It was the perfect ending to this day as you know how hard weekends are for me.

Tonight was spent quietly around the house. Your daddy went to the office and Liam and Quinn are snuggled up together on the top bunk of their bed. I have been busy putting all of the laundry away. It’s taken me forever. I have been washing the same pair of your socks for months now. I refuse to put them away. I just wash them over and over. I carry them around with me. I can’t believe I don’t have your little feet here to put them into. I can’t believe how I wander around the house, doing busy things and often just walk into your room, expecting to see you playing. Your room is still the way it always has been. I don’t want to change a thing. Liam often plays in there. I like to write in there and sometimes sit and quietly think. I still cannot wrap my head around the fact that you are not here to play and sleep in your room. This all still seems like a bad dream, except I cannot seem to wake up.

Where are you baby? Are you playing with Esther. Please tell me yes. Tomorrow, it will have been 4 months since that sweet baby girl passed away. Your 4 months will be here soon as well. Please watch over Esther’s mama tomorrow. Well, everyday, really… but tomorrow extra close. I am worried about her. I feel such a need to go and see her. I promise I will get back East to do this soon.

I think this may be all for tonight, Ro. I have some homework to do before I see Dr. Joanne tomorrow. She took you with her when she went barefoot hiking this morning. I’ll send you the pic she sent me. I love you to the moon and back, baby boy. I hope you are safe. Sweet dreams, my love.

Dear lovely readers…….. Many of you have been asking about Ronan’s bracelets and where you can get them. I am almost completely out, but if you live in AZ…. there are some places that you can get them. Here are the locations::::

The Water Connection:::::::Nice Bracelets only::::: 3929 E Camelback Rd. Phoenix, AZ 85018

Green Cleaners::::Halle has Naughty only::::: 3912 East Camelback Road, Phoenix, AZ 85018

Garage::::Katie has both Naughty and Nice:::: 7144 E. Stetson Drive, Scottsdale, AZ

For my out of town peeps. I PROMISE, I’ll let you know when more are available. Should be later this week. Thanks for the LOVE and SUPPORT.

xoxo

New obsession. Inferno Hikes. My physical Hell.

Ronan. The Sunday Blues. I hate Sundays. Always have. I woke up in an awful mood due to the dreams I had all night long. They were long, intense, and I was mad at everyone in them. I fought with your daddy in my dreams. Quinn and all of your cousins were smoking cigarettes in front of me. I was crying, screaming, and yelling. Everyone in my dream, knew you were dead and it was all they talked about. Is it too much to ask for a little peace in my life? Apparently, yes. To say I woke up on the wrong side of the bed, is an understatement. I woke up, vividly recalling what I had just dreamt about; and then I remembered that I was really waking up to you not being here. I walked around in a zombie state of mind for most of the day.

Hi baby. I started that yesterday, but didn’t finish due to trying to go to sleep. I passed out around 10, but tossed and turned all night long. My dreaming is out of control. I could be sick just thinking about it. I saw you in my dreams last night. Yes, indeed I did. I wish I could tell you it was amazing, but it was awful. I had a dream that I was holding you. You were still alive, but you were being cremated in my arms. Your skin was burning off and it was so hot, that I could feel it. I was supposed to just wait it out and watch you burn. I woke up, barely being able to breathe. I got up, walked around the house, went into your brothers’ room, and tried to go back to sleep in there. I did, but didn’t. I slept for a couple of hours and got up early to start my day. I was so tired of trying to sleep so I just aborted mission. I got up, showered, made your brothers breakfast, got them ready, got myself ready, made myself a list for the day of things to do and headed out to take your brothers to school.

I filled my day with errands. I went over to Gay’s house to give her a hug. I have not seen her since your services. I miss her and her little guys so much. So do Liam and Quinn. We are planning a play date with them tomorrow. It will be so bittersweet without you. After I left Gay’s, I finished up the things on my list. I came home, threw on my workout clothes, and decided to do hike at 1:00 in the afternoon. The temperature on my car read 114. Screw it. I’ve hiked the mountain everyday for a week now. Tricia hiked with me Saturday and Sunday. We are OBSESSED. Inferno hiking is our new Hot Yoga. As I was getting ready to head up the mountain, I decided I’d better tell someone where I was. I texted Trish and told her if she didn’t hear from me, it was because I had died; hiking. I made sure she knew where I was in case I didn’t make it back down. I had a moment of hesitation before I started. An empty mountain, the thought of rattlesnakes, the heat, and god knows what else; was enough for me to think twice about braving it today. But then I thought of you and everything you went through in your little life. All the pain and suffering. My fear subsided and I ran, as fast as I could for 35 minutes, up, up and up. I got to the top, started to dry heave, and threw up the only thing I had in my stomach the entire day which was coffee and water. No biggie. I took about 20 minutes to feel the sun burn my skin and I did my talking to you. I can’t remember if I cried or not as I was in a daze. I headed back down and just as I was thinking in my head, that I must be really be crazy; because nobody else in their right mind would do what I had just done….. a man appeared. I thought I was hallucinating at first. I took out my headphones and watched the man who must have been about 75, with his walking stick, approach me. He was carrying a spray bottle mister full of water in his hands. I smiled and told him I couldn’t believe that he was hiking today as I thought I was the only crazy person on the mountain. He told me to take off my sunglasses so he could spray me down. I laughed and thanked him and he told me it would keep me cool for about 10 seconds. I told him that was better than nothing. I think that 75-year-old man, hiking today, was clearly an Angel. It was a little sign from you to let me know that no matter how alone I think I am, without you… that you will never be far from my side. I really needed that today, Ro. Thank you.

I picked up your brothers from school, came home and we did their homework. The rest of the night has been pretty low key. Everyone is tired from the heat of today. Tomorrow, I have a busy day full of therapy appointments. I’m seeing Sarah and Dr. Joanne. I am going to try to go to boot camp at 5….. so please let me get some sleep. I need the rest, emotionally, physically and mentally. I miss you so much. We all do. We spent last night all crying about you. Quinn was hysterical, sobbing so hard that he couldn’t even talk. Liam was crying in your bedroom with your door closed, playing with your Star Wars guys. I cried most of the night as your Daddy tried to take care of all of us; but he was just as sad. I just don’t know what to do with days like yesterday. I almost can’t handle them. We survived somehow. Quinn is watching your favorite movie, “Home Alone,” now. I really can’t handle that. The little boy in the movie is you to a tee as far as the way he acts. You used to quote this movie every other day as you loved it so much.  I so badly wish we would have went on a vacation, and left you at home alone. At least this movie has a happy ending. I don’t see how our life can possibly have a happy ending without you here.

I’m going to go now baby. I’m so tired I can hardly see straight. I love you to the moon and back and hope you are safe. I miss you so much. Sweet dreams, my “not spicy, little monkey.

xoxo

I would like to dream about these sparkly shoes tonight. Something crazy, gorgeous, and girly.

Your little footprints, are going to leave big marks

Ronan. Hi baby. What are you doing? I hope you are sleeping, peacefully and dreaming the sweetest dreams. I hope you are visiting all of our special friends and family in this world and giving them all the sweetest dreams possible. I hope I get to see you tonight. Today started off lovely. Lovely in every way, without having you here. Tricia asked if I wanted to go to Hot Yoga with her. I’m not ready to go back to that yet, as I am too angry at the world. I asked her to go with me, around noon, on a hot hike instead. I felt the need to take my anger out on the mountain today, as I have done every day this week and I wasn’t going to let the fact that it was noon and 105 degrees out; stop me. We kicked that mountains arse today, and then some. I love my bestie for being crazy enough to do it with me. We ran down the mountain as fast as we could; without falling on our faces. It was hard, but felt good. The sweat dripping from my face stung my eyes so badly that I had to pull over and wipe them for a while, so I could see enough to drive again. I was relieved to feel the sting from the sweat as it gave me a break from my tears. I felt like I was going to pass out as I sat in the car and tried to pull myself back together. I didn’t care.

I came home, hopped in the shower and than went with Danielle and Tricia to get our tattoos touched up. All of ours have faded, so we went to get them fixed. I thought Tricia was going to pass out from the pain. I sat with her as she squeezed my hand and shut her eyes. Her little star looks so much better now. I went after her and enjoyed the pain of having my little purple stars recolored, a darker purple. The pain that is so totally addicting. I love it because once again, it is a change from the pain I feel all the time now. Danielle dropped me off at home. It felt good being with those two today. I miss them so much. I was supposed to go out to dinner with them last night; to celebrate Danielle’s 4th of July Birthday…. but I just couldn’t do it. I was tired with a headache and the thought of getting ready and going to Chelsea’s Kitchen; with tons of people, was just too much for me. I felt awful though because I am never here to celebrate D’s birthday during the summer. And she deserves to be celebrated for being such an amazing soul. Today was important to me, to go and to be with those two girls. The time with them, is always special to me.

After D dropped me off, we got ready to pick up Liam from a Birthday Party, and than headed to the AZ County Club to meet Kenny, Stacy, and their kiddos for some family fun time. I thought I was going to be o.k. I had a little anxiety about going in at first, but I talked myself down from it. The boys’ were so happy to be there and we were so happy to be meeting our dear friends for some swimming, playing, and dinner outside. I had the chance to say hello to a lot of wonderful women. Some of my busy little bees. I loved seeing them and getting a chance to give them hugs and tell them thank you. I hope they could feel all the love in my heart I have for them. I am so thankful and proud for the beautiful people who are so in love with you, that they want to help and make a difference. The fact that these strangers, are taking the time out of their busy lives, to help ours so we can leave your little footprints all over this world, is such a beautiful gift, Ro. I cannot do this without the help of these selfless souls. They all make my heart smile. One of the women I met tonight was named, Sassy. For real. Does it get any better than that? I think not.

We sat and had dinner. I tried to eat. Kenny’s exact words to me were, “Hey sister. You may be able to get away with that not eating crap at home, but not on my watch. Eat. That Coke Slurp Buster crap is not going to fly tonight.” Made me laugh, so I tried my best to force feed myself. And force feed myself I did. But then it happened. The little boy, sitting across from me; Kenny and Stacy’s family…… FUCK. The sweet little boy, who looked so much like you. Even your Daddy knew it; as soon as he saw him. He instantly asked me if I was going to be o.k. I smiled and just quietly said yes. I tried to be o.k. But I ended up crying at the table, to his mom, telling her how much he looked like you. She said she knew, that she had talked about it with Stacy before we got there. She said she was sorry. I told her not to be sorry that he so much reminded me of you. I was the one who was sorry for crying like a psychopath; but there was nothing I could do. I got up, as I was feeling so sick to my stomach. I went to go and find your brothers. I sat and watched them play basketball for a while and tried to ignore the waves of nausea washing over me. I was having such a physical reaction to seeing this little boy, that I ended up in the bathroom, throwing up every thing I had just eaten. Good thing I have learned to carry a toothbrush and toothpaste with me at all times, because I never know when this is going to happen. And it happens so often now, that I am just learning to get used to it. Add it to the list of many things that I am going to have to get used to now in this almost unlivable life without you.

We ended our night with happy kids, hugs, and an ice fight. I sat and watched as all of our kids, threw pebble ice at each other and laughed away. I looked up at the sky and could almost hear your giggles of laughter, as you would have so loved to have been in the middle of all of this. It is so wrong that you are not. I am so sorry. I love you to the moon and back, my spicy monkey. I hope you are safe. I have to say goodnight now. Too many tears tonight to continue on. Love you, Ro.

xoxo

I love my sisters. So very much.

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