Rain from Ro

Ronan. So many people made today, not an awful day. Friends, family, strangers and even you. As much as I was dreading today…. too many things happened for it to be anything, but beautiful. For as awful as I was feeling inside, there were too many things in the Universe, spinning around, not in my hands… making today bearable. I survived today and even made it though the day with a smile. Something I don’t do very often anymore. Something I miss doing so very much.

The day started off normally. Well, kind of. I was tired from not falling asleep until early morning. I heard Quinn come into my room around 6 a.m., saying he had a bad dream. I had just fallen asleep a few hours earlier. I wrapped my arms around him and we both fell back asleep. It was 8 before we woke up and I thought about just staying in bed and keeping your brothers home with me today. I knew if I did this, that it would not be a good day. I would have ended up hiding in bed, and not coming out. That is something your brothers do not need to see and I do not need to do. It only makes me feel worse. I got up, got Quinn up and we rushed to get out of the house before school started. We barely made it. I dropped your brothers off and went to Hava Java to meet N and Fernanda for coffee. I found a table outside, which never happens; as that place is always packed. Fernanda showed up and N soon after. I just happened to get a table right next to Susan Levine. She came to visit us when you were there. Gosh, she is beautiful. She knows, N and said Hello. I went up to her and gave her a hug and I thought I was going to have to remind her who I was, but I didn’t. She remembered. Even in my running shorts, no make-up, baseball hat self. She still recognized me as your Mom. I tried not to cry and thanked her for her amazing Ryan House. It was strange seeing her today, on your 4 months, but it felt like it was supposed to happen. Like it was meant to be.

I sat outside with N and Fernanda. We talked and caught up. N had to leave after a short amount of time due to a work call. It felt nice just to see her face. After N left, I sat with Fernanda and we talked about how I want to go back to NYC…. to have a few words with Kushner. We both know it will not do any good, as we are sure he is not capable of dealing with an emotional, angry mother. I don’t care if I don’t get though to him at all. I just want that man to look me in the eyes and tell me he is sorry. How he promised things that he should not have, and that when he couldn’t deliver, he abandoned us. He owes that to you, Ronan. I need closure. It is something that I cannot do without. It is part of my healing process. It may seem stupid and trivial, but it is important to me.

As Fernanda and I were sitting outside, we weren’t really talking, we were just being. I do this with her a lot. As we were both just being, we looked up at the sky. It started to rain. Rain in September. Rain from Ro. The sky opened up and I swear it was just over Hava Java as the clouds were nowhere else to be seen. Fernanda and I both looked at each other and just sat, held hands across the table and cried. We both know the rain was from you. You know how happy rain makes me. It is one of my favorite things in the world. I felt the little drips of the rain, on my lips and the tip of my nose. Kisses from you. It was such a perfect moment. So simple and filled me with a bit of joy. The fact that I had this moment while Fernanda sat across from me, made it even better. I know you saw the two of us today. You wanted us to know that you are still around and that you are taking care of us now. I really believe this to be true. We sat with the rain and it stopped after a few minutes. I didn’t want to leave but had to get on with the day. Inferno Hiking was waiting. It wasn’t much of an Inferno Hike today. You out of towners are going to laugh when I tell you how “Cool,” the temperature was. It was only 101 today so the Inferno did not exist. I cannot believe I am even saying that. Anywhere else, and 101 would be boiling. Not here. It felt chilly today as I climbed the mountain in that degree of heat and not the 115 that I have been hiking it in. I got to the top and sat down on my bench. I actually laid down and cried my eyes out all while watching the most amazing clouds roll in and the wind thrash back and forth. It was really windy up there today. I listened for you. I talked to you and told you I love you. I hope you heard me. I stayed up top for a good 30 minutes and ran all the way back down. Right as I was ending my run, The Bravery song that I played for you last night, came on. So funny. So fitting. So you.

I came home, showered and the doorbell rang. I went to answer it and it was a delivery guy with the most gorgeous purple flowers. A card was attached, and said something about making this day brighter, but no name was signed. So, I have no idea whom these flowers came from today but I am going to say Thank You, anyway. So thoughtful, sweet, and made me smile. They are gorgeous. What’s even more gorgeous is the fact that somebody out there sent me these flowers, without needing me to know who they are. I love deeds such as this. That says so much about a person. So, lovely stranger or friend. Thank you for your kindness today. I love that no recognition was needed. But I’m still dying to know who sent them! If you want to tell, feel free to send me a little message;) If not, that’s o.k. too. I totally understand.

I headed over to see Katie at her boutique. I brought her a Green Tea from Starbucks and a slew of bracelets. She said her phone had been ringing off the hook all day and her email was flooded with requests for your bracelets. I could not believe it. I am still in awe of the support and love that is coming from all of this. I sat at the counter, while she rang up customers. I am surprised at how much at home I feel in Katie’s store and with her. I hardly know this girl, yet her store feels like a second home to me. So strange. I feel like I’ve known her my entire life even though I only met her last week. I am such a skeptic of people too and their intentions. I feel only good vibes when I am with Katie. I know she is helping me because she is just a good-hearted person; not because she wants anything from all of this. She has nothing to gain, she has no reason to put herself out there to gain anything. Her intentions are so true and pure. I love this. As I was sitting at her counter, while she was gift wrapping something for a customer, guess what came on while I was sitting there? Stevie Nicks, “Landslide.” I just looked at Katie and gave her a hard time about putting that song on, on purpose. We both laughed and then the tears started to well up in my eyes. We just kept staring back and forth at each other, both getting teary eyed, while trying to keep our composure in front of her customer. Katie yelled out, “O.K. I can’t even look at you right now.” I just smiled and wiped my tears away. It was such a funny moment. I left there shortly after to grab your brother and cousins from school.

I had a crazy house full of boys. Wild, funny, happy boys. I had 4 of your cousins over to play. 2 of them are staying the night. It’s been a really great night. I love nothing more than being surrounded by kids. It’s my happiness. I took your brothers and cousins to basketball practice. Your daddy is coaching their team again. I watched my two little hoopsters and what amazing players they have become. You would be so proud of them. After practice, your Daddy went to the ASU football game. I took the 4 boys and we decided to try a restaurant, “Beckett’s Table,” for dinner. We have wanted to try this place out for months now. I was so excited to go somewhere new, with my date of 4 boys all under the age of 8. All the boys were really excited too. We sat outside in this amazing weather and had the best service. A really sweet server came out after we had been there for about 30 minutes. We were the only one’s on the patio, eating, but she came out to say Hello and to tell me that she reads this blog. I was surprised, as I guess I kind of forget that I’ve put myself out there in such a way that strangers recognize me. I gave her a big hug and told her thank you. She asked if I Inferno Hiked today and I told her yes. She than said something about how she felt so voyeuristic about knowing all of this stuff about me and asked me if it felt weird. I told her I honestly didn’t think about it at all and I still think that I am really only writing to you, and that nobody really reads what I write. I told her how much I appreciated her coming up to me and saying hello, because I do. So many people won’t and that just sucks. I would rather have someone tell me they are sorry than say nothing at all. As I was gathering up the 4 best dates in the world, we walked out of the restaurant and I smiled and said thank you to the people who were standing by the kitchen. One of the managers chased me out to tell me that our dinner, was on them tonight. I tried to put up a fight but she just was not having it. I wanted to cry but I put on my brave face and told her thank you so much. The kindness of this big city, is really something remarkable. The chocolate covered bacon was amazing. Actually, everything was amazing. Thank you, Beckett’s Table tonight. It was truly one of the best dinners out that I have had in a VERY long time. We’ll be back, for sure:)

I missed you today and tonight, Ro. In everything I did. Even driving in the car. I looked in my rear view mirror today, at the place where you used to sit, behind me. It was empty and felt so wrong. I almost had to pull the car over to throw up. I can’t believe I don’t have you behind me anymore, throwing things at my head, squeezing toothpaste that you had found, all over yourself and smearing it on the windows. This is so fucking wrong. So unfair. So permanent. I still can’t believe that you are never coming back. I still feel like your Daddy is going to come bouncing through the doors with you. I still feel like I made you up in my head, because the pain of knowing that you were here, and are now gone, is just too much. People say this gets easier over time. I’m here to tell you, it does not. 4 months later, and the pain is worse. Your Daddy agrees too. Time does not heal wounds. If you survive something like this, you just learn to live with the pain. You learn to fill the holes here and there, but there will always be a big chunk of your heart missing. That is a fact. It does not get easier, you never forget, the pain does not become less over time. It stays with you, every second of the day until you just becomes used to it. It is just a part of the person you are. Pretty soon, you are so used to the pain of all of this, that you don’t remember what it felt like before. It is as if you have felt this way your entire life. Well, this is my experience anyway. To each his own.

Time to go baby. I love you to the moon and back. I hope you are safe. Sweet dreams, baby doll. I love you so very much.

Goodnight my lovelies. Thank you to everyone who texted me super early this morning to say they were thinking of me, for all the phone calls, FB messages, emails. smiles, hugs, random flowers and a really sweet dinner. I am in awe of all the love that surrounds us thanks to Ronan. Love you all.

xoxo

4 Months feels like 4 Years. Thanks, Cancer. You’re AWESOME.

Ro. I can write tonight. I need to write tonight. It’s been a couple of days I think. I don’t know that I’ll be able to sleep tonight. It’s creeping up. The 9th of every month date. 3:30 a.m. will be here soon. I’ve been dreading it all week. Consumed by it. 4 months is almost here. What was I doing at this time, 4 months ago? Laying with you, while Fernanda sat and watched you so we could get some sleep together. I was cuddled up beside you, which was always my favorite place to be. I’ll bet you Fernanda was rubbing you, trying to sing, “Twinkle Twinkle Little Star,” but she didn’t know the words, so she had to Google them on her phone. I love that story. She watched you because she knew that I needed the rest and I wouldn’t sleep if someone wasn’t keeping their eye on you.  She knew when it was her time to go and I think she left around 2:30 a.m. She kissed us goodbye and left the two of us in the room, alone together. She knew that it was time for you to go. She knew that we needed to be alone. She knows so much. I remember watching you. Your little breaths got so shallow. I remember The Ryan House nurse standing over us and how fast my heart was beating. I looked up at her and asked if you were gone. She told me not yet, but it was going to be soon. I remember thinking how unfair it was that my heart was rapidly beating, yet yours was getting ready to stop. I kissed you all over. I told you I loved you and whispered to you, “Come on baby. Come with me. Let’s get out of this place.” I asked her to go and get your Daddy. You waited for him to come in and kiss you goodbye. Then your little heart just stopped. Just like that. I go over this night in my head, at least 10 times a day. I pray that you know how much I love you, I pray that you were not scared as I worry about that so much. I still can’t believe you are gone and that I am still here, living this life, without you.
I had a mini freak out today. Panic took over after I dropped your brothers off at school. I knew I could not go home to an empty house. I went to Starbucks and sat with my computer and went through emails and paid bills. I emailed somebody at www.spirithoods.com and told them about you and asked them if they had ever thought about donating their amazing “hoods,” to kids with Cancer. I told them how much you loved yours and how many cancer kids would comment on it, but probably couldn’t afford to buy one. I asked them to consider donating some. I actually got a response pretty quickly and I was very impressed. I’m working on them and I have a feeling they won’t let me down. Could you imagine how many smiles their Spirit Hoods would bring to the faces of kids everywhere. Hospitals are notorious for being cold. Remember how much we loved wearing ours together. You looked so cute in yours. I could have gobbled you up and am sure I tried. I miss your little face so much.

One of our favorites met me for a bit today. I was a wreck, but tried my best to remain calm. I don’t think I put on a very good show. It’s fine. I have never been one to pretend with our lovie. No reason to. I talked about how this date is hard for me every month. I tried not to cry and just listened to the words that came my way. I tried to keep an open mind and to not be angry at the fact that you are not here. Our lovie sat and told me that you are not really gone, that you are everywhere. That you will never be gone. I know this deep down, but it does not take away the pain of your physical self not being here. It does not take away the pain of not being able to hear your squeaky voice or look at your beautiful face. Our lovie asked for a smile. I refused as my smile seemed nowhere to be found today. I’ll bet you I went the whole freaking day without smiling. And I always smile for our lovie. That’s how you know it was a really, really, bad day. I know you know. I know it’s on my really bad days, that you find some way to make me feel a little happy. I found that today when I went to visit my new friend, Katie, at her boutique. Her kind heart and kick ass music playlist made me feel good. I joked with her that she must secretly have access to my iPod because I swear she always has my favorite songs playing while I am in her store. Tom Petty’s “Last Dance with Mary Jane,” was on when I was telling her that. Oh, Tom Petty…. how I love thee. And Miss Katy…. this new gorgeous girl you have put in my life, Ro. Thank you. I can tell she is going to be a big part of this new, strange, life without you. Another one of your little gifts. Thanks baby.

The rest of the day was spent in therapy. Therapy with your Daddy and than I went off to therapy alone with Sarah. I felt like my head was spinning most of the day. Than I decided that it should feel that way, as I have many hats that I am wearing right now. I am not sure if this is a good or bad thing; but it is where I’m at. You want to hear all of the hats I’m wearing? I’ll tell you.

The Maya Hat- Trying to take care of me. Whatever that means.

The Ronan Hat- Trying to connect and still trying to take care of you. It’s all I want to do.

The Mama Hat- Trying to be a good Mama to your brothers. I’m naturally a good mom, so this is not hard. But it still takes a lot more effort than it used to.

The Wife Hat- Trying to be a wife to your Daddy. Failing.

The Therapy Hat- Sarah, Dr. Rachel, Dr. Joanne, and Dr. Beth with Liam and Quinn. FUCK. That is a lot of therapy, but so necessary.

The Friend Hat- Trying. Failing. I miss my friends.

The Foundation Hat- My busy work. Trying to get everything figured out. I like this hat. It gives me HOPE that I am keeping  you alive; even though you are gone.

The Not Slitting my Wrists Hat- Want to. Everyday. Everyday I survive without doing this is a fucking miracle.

The Grieving Hat- I’m doing this. In my way, alone. Or in the presence of therapists. I’m working hard to do this. I don’t want to stuff away any pain because it will all come back to haunt me later if I do.

So baby. What do you think about all of that? That’s A LOT of stuff. Remember back in the day, when all we had to worry about was naps and grocery shopping? That life does not even seem real anymore. I feel like I’ve been living this life now, forever. What a stupid, spoiled brat I was. I’ve got a lot of making up to do for being such an ignorant human being. I’ve got a lot of work ahead of me. It’s fine, baby. I’m not scared. I know you are going to help me, therefore, I can do anything. Fuck You, Cancer. Right, Ro?

My new friend, Heather, also stopped by for a visit. She is the Queen of random, surprise drive-by’s. I just happened to be home and was so glad to see her face. We sat in the kitchen today and talked for awhile. She is another one of those peeps with such an amazing heart. She always seems to appear when I need  a bit of cheering up. When I need a little kick in the ass to remind me of how strong I am. She told me that she tells someone, at least once a day, that I am going to do for Childhood Cancer, what Lance Armstrong has done for Cancer in general. WOW. What a compliment. Talk about picking a girl up, when she is down. I took a minute to think about what she told me. I started to get overwhelmed, but a calmness washed over me. I think she is right. I think she is right because I have you to fight for and the strength you give me will help me change things, in a drastic way. Everything I used to be scared of, Ro…. no longer exists. I am here, on this earth, to change things for you. Because you know that you did not deserve to die, nor does any other child suffering from Cancer. Somebody has got to take this fucker down. Super Ro to the rescue!!!!! I know we can do this, little man. Heather, knows we can do this. She lit up like a little Christmas Tree when she was telling me this today. It was so stinking adorable. It was so beautiful. It was so you.

Oh, Ro. Nice song pick tonight as I was just getting to end this post. Seriously! That just got you the BIGGEST SMILE! I love you to the moon and back, baby. I hope you are safe. You are so right, this is absolutely not the end.

THE BRAVERY

Tell me
Come on tell me what you can
Even as you wait for death your wiser than I am
Tell me what does it mean to exist
I am not a scientist I must believe there’s more than this
And I can not accept
That everything that’s real
Is only what our eyes can see
And our hands can feel

[chorus]
Not even earth can hold us
Not even life controls us
Not even the ground can keep us down
The memories in my head
Are just as real as the time we spent
You’ll always be close to me
My friend
This is not the end

I see
I can see you’re still afraid
Weathered like the silver moon, on you even fear looks good
I wish, I wish I had some words to give
But all that I can think to say
Is I’ll be with you everyday

[chorus]
Not even earth can hold us
Not even life controls us
Not even the ground can keep us down
The memories in my head
I just realized the time we spent
You’ll always be close to me
My friend
This is not the end

La la la la la
This is not the end
La la la l al la
This is not the end

I don’t care
I don’t care what you believe
As long as you are in my heart
You’re just as real as me
Maybe
Maybe even more
Someone who’s touched so many lives
can never, ever die

[chorus]
Not even earth can hold us
Not even life controls us
Not even the ground can keep us down
The memories in my head
I just realized the time we spent
You always be close to me
My friend
This is not the end

Ronan. I swear this song was written for you.

 

 

 

Tell me
Come on tell me what you can
Even as you wait for death you’re wiser than I am
Tell me what does it mean to exist
I am not a scientist I must believe in more than this
And I can not accept
That everything is real
Is only what our eyes can see
And our hands can feel

[chorus:]
Not even earth can hold us
Not even life controls us
Not even the ground can keep us down
The memories in my head
Are just as real the time we spent
You always be close to me
My friend
This is not the end

I see
I can see you’re so afraid
You wear it like a silver hood on you even fear looks good
I wish I wish I had some words to give
But all I can think to say
Is I’ll be with you everyday

[chorus]
Not even earth can hold us
Not even life controls us
Not even the ground can keep us down
The memories in my head
I just realized the time we spent
You’ll always be close to me
My friend
This is not the end

La la la la la
This is not the end
La la la l al la
This is not the end

I don’t care
I don’t care what you believe
As long as you are in my heart
You’re just as real as me
Maybe even more
Someone has touched so many lives
Can never never die

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