neuroblastoma - Isabella Santos Foundation

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February 23, 2017 – 7 years 111 days

March 8, 2017/in Isabella's Mommy/by Rachel Wood

When you lose a child, your life becomes a series of numbers, times of day, songs, and dates. I don’t really know why we do it to ourselves. Why do we look at the clock or the calendar and say things like, “this day in 2010”. It’s just plain torture. It’s especially bad around her passing day because the memories are so vivid that you can still recall every day of that month. How she looked, what she said, who came to visit or even the haircut you got that month, which you always regretted. Why would I leave her to do that? The haircut always haunted me.

How old was Isabella when she died is a question I get all the time. My immediate answer, or the one you will hear out of my mouth is 7. But in my head I am saying 7 years and 111 days. She wasn’t just 7 because of course like any tortured Mother, I remember the day she turned 7. We had a full day planned to celebrate on that day, but we got a call from Dr. Kaplan who told us that she was in need of blood and platelets. I had a small breakdown in the clinic about it because I was tired of having special days ruined for her. She of course was clueless to missing out because her whole life was about missing out. The staff decorated her transfusion room for her and got her cake, balloons and gifts. It was sweet of them and I honestly think they did it more for me.

While we were there, we also got a call from NYC and were surprised to hear that one of Isabella’s four bone marrows tested positive for neuroblastoma. This came out of left field for us because we thought she would be squeaky clean after her third MIBG treatment. The amount they found was very minimal, but in the world of cancer, sometimes that is what will kill you. This small evidence of disease was ultimately the cells that exploded and eventually took her life. Go figure, the start of her death started on her 7^th birthday.

Of course in Isabella style, we did have a wonderful birthday weekend. We went to Great Wolf Lodge with her bestie Soleil and had a horse party with all her friends. She asked for Target gift cards for her presents and then proceeded to spend every single one of them buying toys to replenish the oncology floor playroom. Even on her last birthday, she was still giving.

That was her 7^th birthday. The good, the bad and the ugly. She lived 111 more days.

Phia, 7 years 111 days

I saw it coming as I took a glimpse into my February calendar. There it was. February 23, 2017. This was the day that Sophia would be 7 years, 111 days old. This is also the day that Isabella would officially become my youngest child and daughter.

Of course my natural way is to push things down and try not to think about them. But grief has a way of sneaking up on you. Even this morning, the day before Isabella’s birthday, I find myself being a total bitch. I’m overtired. I’m cranky. I want to be alone. I’m snapping at my kids and want nothing to do with seeing Stuart. I know what it is all about, I am just trying to deny it.

So I go about the days leading up to it and walk right into a memory a week before the dreaded day. I had been trying to get back in the gym and my body was hurting. I decide to take a nice relaxing soak in the tub. We all know as mothers that kids hear that bath running from miles away. Within 2 minutes, Sophia is stripped down naked and about to do a cannonball into the tub with me. She is squirmy as usual and I can’t even get a word in edgewise. Sophia is non-stop energy and it baffles me how she can be at a 12 all day every day. She is making a Mohawk in her hair with bubbles and is putting a Santa beard on me all while telling me about her boyfriend and how he tried to kiss her on the playground. I try to be present but I find my mind wandering as I look at her.

June 21, 2012 (One week before she passed)

“The days seem so long and often I ask myself, what day is it? I seriously don’t know if it’s Sunday or Thursday. The majority of my days are spent in the bed with Isabella. I try to lay with her in the morning until around 4 each day. We don’t do much in the bed. Occasional meds, back rubs, small conversation. I’ll get her up and put her in the bath with me to make sure she at least feels clean every day. But with each bath, I look at this girl and can barely see my Isabella in there. Her stomach is sunken, ribs showing every bone. Her shoulders stick out like they want to punch through the skin and her spine shows each vertebrae. I can no longer carry her with my hand on her back because it just upsets me too much.

While we are all trying to come to peace with things, Grant is beginning to struggle. He is having moments of tears that come from just seeing a picture of them together. Nightmares, night sweats and the constant need to be right next to me, letting me know that he is grieving. He misses her. He comes and gives her hugs when he leaves and constantly says, “tell Isabella I love her”. Even today he came in and sat next to the tub while Isabella and I took a bath. Just talking about whatever came in his head… but it just felt normal to him for a minute. They talk as if nothing is going on… he tells her that her hair is coming in good, or they talk about how library day will work next year at Marvin, what happens when people have surgery, his new Spider-man book…whatever. He just wants to be there. I’m amazed he doesn’t mention the look of the body he sees in the water…he notices it I’m sure.”

Just a couple of days later, we took our last bath together. I laid her on top of me and not much was said. I knew she wanted to talk to me but it was hard for her. The words that were coming out of her mouth weren’t making sense. She was trying to talk to me about a bunny or Grant but then said, “Mommy, that didn’t make sense did it.” By this point the cancer was in her brain and it was taking over quickly. It was the last conversation we had. For the next 24 hours she was still there in her mind but this too would go soon.

June 26, 2012 (Two days before she passed.)

Her heartbeat is slowing down but sounding different because her heart is working harder. Her oxygen is slowing down a bit too. Her breathing is slowing down so much in fact that I just stare at her. She will take a breath and then it will be so long until the next one that I find myself holding my breath until she takes one again. She sleeps most of the day and gives me small glimpses of what is in her mind. I lay with her so quiet and still and listen to the things that she says in her sleep. She asks me if I see things or tells someone to wait on Mommy. She will say Grant’s name but then it wakes her and she says that she was just dreaming. She flinches and smiles, makes gestures with her hands and squeezes my hand softly. It’s like she is talking to someone. But the occasional smile let’s me know that it is not a conversation that scares her or makes her sad. Each night Stuart and I snuggle in beside her and tell her things just in case she is not with us when we wake up. We have been told by hospice that we are lucky. She is relaxed, comfortable and not in pain.

Two days later she died. She died in the morning on June 28^th at the age of 7 years, 111 days.

Phia, 7 years 111 days

So on February 23^rd, 2017 I crawled into bed with my now oldest daughter Sophia. We snuggled for a bit and then she got a piggyback ride downstairs as she got ready for school. I dropped her off and continued to torture myself throughout the day. I talked to my Mom on the phone and cried. Then I sat down and watched “This is Us” and bawled my eyes out as the father I loved on the show died from cancer. I visited Isabella’s site briefly. I sat in the sun quietly and waited for Sophia to get off the bus. I gave her a big hug and told her that today she was 7 years and 111 days old. She shrugged me off as usual.

I took her for a haircut where the stylist walked right into my nightmare. She asked Sophia how old she was, to which she responded “7 years and 111 days”. The stylist laughed at how cute she was. I knew when she asked her if she had any brothers or sisters, that we were in for it. Sophia of course responded telling her, “I have a brother Grant and a sister Isabella who died of cancer.” All this while zoned into watching Big Hero 6 on the TV screen. The stylist turned and looked at me. “Oh my gosh! I’m so sorry. How old was she?”

“7 years and 111 days.” I replied. I then proceed to weep on the couch of Pigtails and Crewcuts. Welcome to my f’d up day lady.

Phia, 7 Years 111 days

I took Sophia back and we walked on the trail together, holding hands and laughing. I would catch myself looking down at our hands together and thinking how unbelievably similar that view was. Her hands are identical to Isabella’s yet so much is different. She is healthy and running barefoot ahead of me in her purple dress with her blonde hair bouncing up and down. I am looking at a child that Isabella should have been on that day. Happy, cancer free, without a care in the world.

But instead she is gone and Sophia is now older than Isabella. I am thankful this day is behind us and can thankfully say that I don’t have another day on the calendar for awhile that I’m scared of. It’s crazy to think she would be 12 years old today. I can’t even imagine. But, as Sophia ages each day – it gives me a small glimpse into a piece of who she would have been on that day in history too. I always say Sophia is a gift from Isabella. Her little sister who has in one day, all of sudden, become her big sister too.

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Falling On Deaf Ears… the Consequence of Silence.

September 12, 2016/in Behind The Foundation, Isabella's Mommy/by Rachel Wood

By: Erin Santos (Isabella’s mommy)

I’ve written some things in the past that have made a difference or gotten someone up out of the chair. For the first time this year I thought, I’m not going to write something because people finally get it. I’ve written about how “awareness” is a bullshit word and how instead we should take action. I’ve written about what all cancer steals from a family when someone dies. And last year I wrote 30 days of “whys”. Why people get divorced, why I stopped visiting her, why we cremated her and more. I have poured my heart out year after year, picking my scab and pulling back the curtain on what cancer, loss, and heartache is really like. So I figure you get it now.

Each year the foundation grows more and more. We see more dedicated people coming to support the cause who never even knew Isabella. People would tell me what we are doing here is phenomenal. Most non-profit’s had a run rate between 8-10 years before they close their doors. They slowly lose their supporters. But we were different somehow. We had some secret sauce to what we were doing that meant we were going to survive the charity down turn. Even more amazing is that we were doing this all without Isabella standing on stage or asking people in Target to come to her race. Maybe we were going to be the charity that survived the industry down turn because our supporters were lifelong supporters.

I have to say, today I’m scared.

When you are riding on the wings of a ghost year after year, you begin to have moments where you think your message is falling on deaf ears. In years past, it seemed easier for me to rally the troops. But this year I feel like something changed. I sit back and watch social media and see these people on the Dream Team posting pages after they have gotten up on a Saturday morning while everyone in the world is snug in their bed. I see them fighting mentally to run in the heat and humidity, up hills – putting in mileage they never dreamed they could accomplish. Only to finish with their body’s aching, limping to their cars. They go home and push out their proud morning to their supporters and often times get no donations to support them. We have runners that show up every morning, to save kids they don’t even know – someone else’s kids – and have trouble receiving $500 in donations over a period of 6 months of training. How is that possible? I worry I have somehow let these people down by not providing them with a child they can fight for. Am I not supplying content that is meaningful that will make their supporters understand how important this is?

I watch us work all year towards a race that is dragging in numbers. I have to tell myself that people always sign up late, but we all watch as excuses come in about why someone can’t attend. Soccer games, vacations, family in town, and a party the night before (possible hangover)… the list goes on and on. It’s so hard for me to hear the excuses when I watch my team work tirelessly to make the day so amazing for everyone. I want the entire city to show up and appreciate all they have done.

I think it’s hard because I watched Isabella walk Time Warner Cable arena, on a beautiful day when all her friends were playing, to collect money for the Ronald McDonald House, or bake cookies for families or give her toys away. No matter what she had going on – she knew what was important and made the time for it. Stuart always said that by watching Isabella, you always realize the things you really thought were important – really aren’t. She always got it. I love those that get it. I love seeing people that have been there year over year – no matter what their Saturday looks like. I love when I see people at the race who come with their company that is in for the weekend. I love people like the Gold family who are currently fighting neuroblastoma themselves, who can’t come to the race because they are taking their family to Disney. (Talk about a good excuse!) Instead they created a team and are constantly recruiting people to come to the race under their team name. They created a FirstGiving page and have raised over $3,000. Just today their family was here picking up our ISF tent to hold a lemonade stand on a Saturday night to raise money for a cure that might help their own daughter. They get it.

I wish I knew how to motivate others into action like I once did so easily. I wish the Dream Team was being rewarded for the 8 miles they ran for other people’s children this morning, and again and again when they ask for your support. I hope my ISF team feels a huge sense of accomplishment when they see the waves of purple 2 weeks from today. I hope everyone who supports ISF feels proud when we are able to send funds to advance treatment is Isabella’s name. I wish Isabella were here so you all had someone to save who you could see that morning. But she isn’t here because for years, these pleas have fallen on deaf ears and her death was the consequence of silence.

My hope is that instead of liking a page, sharing a post or being aware of her passing – you make the change to do something about it. These kids all need us to change from awareness to action. The clock is ticking.

Sign up for the race. Be a Phantom Runner. Create a Team. Create a FirstGiving Page. Support a FirstGiving Page. Just do something.

The House That IB Built

August 28, 2016/in Isabella's Mommy/by Rachel Wood

IV cart ride By: Erin Santos/ “Isabella’s mommy”

When I look back at who we were in 2012, everything made sense to me. It seemed that every person involved with the Foundation knew us personally or had followed our story in some way. Nothing needed an explanation or back-story as to why we did the things we did. But now I find myself in 2016 and I look around me to the growth of the Foundation and I’m happy to see new names and faces. I’m always amazed with people who are so dedicated to our mission when they never had the pleasure of laying their own eyes on my daughter. Those people have become just as special to me as the family who was with us from our initial cancer diagnosis. These people stand next to us without asking questions or without looking for reasoning in our decisions, and for that – I am grateful.

When your organization starts to grow, everything from your logo, to the colors you use, to the stories you tell have purpose. It all makes perfect sense to me because I was here from day one. But for all the new followers, these things must just seem natural for ISF. Sometimes I find that telling the story of where we came from helps put more understanding around who we are today.

So with that, I want to introduce you to the house that Ib built.

The Isabella Santos Foundation:

In the beginning it was just about her. We weren’t thinking globally. Looking back, it probably would have made more sense to name ourselves something general so the Foundation would be applicable in Nebraska, just as it is here. It says nothing about cancer, or beating cancer… it’s just about her. She became a little celebrity in our little community and it was no longer about that little girl that was just diagnosed with cancer. People knew her name and her face and we were okay with that. We didn’t want to hide behind something bigger.

Our Ibby logo:

Sometimes you see an image and it just clicks. We saw an image online once of a stick figure little girl. It was very innocent and child like. Because of Isabella’s physical limitations, art became her safe place. When you find yourself in hospital beds day after day and you are too weak to walk down your driveway, you have to find something that speaks to you. For her it was art. She would spend hours drawing and coloring. All she needed was a white piece of paper and a pencil and she would be entertained for hours. She would draw pictures for everyone and it became her way of saying thank you. What started as a stick figure little girl that Isabella could easily draw and color, became something else. The logo changed to be the girl on the world because that is how we saw Isabella. The world was at her fingertips and no matter what happened to her, she was going to conquer anything. That simple logo has moved and shaped into a life of it’s own now. I love watching all the things they can make our little “Ibby” character do. Often times I find myself jealous of all Ibby can do because my Isabella struggled. But maybe Isabella lives through that little logo and is finally able to do all the things she wished she could have done.

Who is Ib/Ibby?:

If you were in our home, you knew that this word was used a lot. Now thinking back on it – I’m not sure how I started using it. Even when I go visit her site at Calvary, I kiss her immediately and call her Ib. It always feels so good to say it when I’m there because it’s a word that has vanished from my vocabulary. Ibby just seemed like such a great name for our logo because it was her, but an extension of her in a way. She was referred to by so many different names and they all have meaning behind them. Isabella was her formal name. This is how the industry people referred to her (doctors, nurses, strangers and supporters). “Bella” was the name reserved only for Grant and Sophia. Because they were so young at the time, Isabella may have been too difficult so Bella became how they knew her. “Isabella Jo” was one of my favorites because if you were her true friend, you knew her by Isabella Jo. She had such a common name in preschool that we decided early on to find something that could make her unique. Joanne was her middle name, named after Stuart’s mother, Joanne, who passed away before I met Stuart. Isabella Jo just seemed perfect.

Purple:

I know childhood cancer is supposed to be gold. You try telling a 3-year-old little girl that everything we are going to do for her will be gold. Good luck. When we started getting things organized, all she wanted was pink and purple. This is confirmed by the hours we spent painting her room upstairs in pink and purple stripes. We all know that pink has been owned by another organization so good luck incorporating that in anything you do. So purple it was. Not that we didn’t believe in supporting childhood cancer as a whole, we just didn’t think we had to conform to the standard to do any good in this world. We were building something initially based off Isabella and what she embodied. That is why we are still purple today.

Beat Cancer. Grow Hair. Live My Dreams.:

This might just be one of my favorites. When you have a little girl with cancer, the actual cancer is a little harder to hide. I found myself envious of little boys who could throw on a hat or get away with the regrowth buzz cut look. But when you have a little girl in a crazy dress with purple knee high socks and tennis shoes running around, a bald head can be a little harder to hide. So instead of hiding, she embraced it. We found the shirt online among other great shirts that she loved to wear like “I love my oncologist.” She proudly wore this shirt for many reasons. First because above anything, her wish was to beat cancer, but coming in a close second was to grow her hair. Sometimes I think she wanted her hair back more than she wanted to beat cancer. Live my dreams…boy did she have dreams. None of them were on hold because she had cancer and they were big dreams.

She was constantly drawn to making wishes. The amount of money we spent throwing coins in a fountain would pay a mortgage. We would have to listen to her spout out these wishes with each toss into the water. Sometimes hearing these from her would make us smile, especially when we felt like we were winning the war. But other times it would be like a knife in our heart when we were in a battle that we didn’t know if we would win. Add on top of this the theme of “Wishing upon a star” thanks to Disney and a religious preschool that introduced bedtime prayers. Welcome to Isabella’s reoccurring three wishes that we heard over and over and over.

The 5K/10 and 1-mile fun run for Kids Cancer:

It started by an idea to get some people together to show support for a newly diagnosed family. We were Ballantyne residents who worked at LendingTree in the Ballantyne Corporate Park. A couple of friends threw together some shirts, a start line, a finish line and some refreshments and we were off! We had about 170 people at that initial race and raised just over $7,000. We watched Isabella run awkwardly across the finish line that year with a fresh scar on her head from a brain relapse. She would attend 5 more races with us before she passed away.

You will still find us with a start line in the Ballantyne Corporate Park in September, but we have grown a little. Last year we had close to 3,000 people at our event, which is no longer just a basic run. It’s not a run anymore; it’s become an event. Silent auctions and raffles, kids zone, food, music and a sense of community like you have never seen thanks to sponsors, volunteers and participants. Our event raised close to $400,000 last year and this year will blow that out of the water. Don’t believe us? Come check it out. You will come year after year.

Where we give:

For me personally, where we give our money makes sense. Honestly, if it doesn’t make sense to someone – it’s a hard pill for me to swallow. We give to what mattered to our daughter. Plain and simple. Saving her friends was always first and foremost the most important thing to her. This is why 90%+ of our funding goes to Neuroblastoma research. It’s why we are here and why she isn’t here. But for us, giving to the Make a Wish Foundation and Ronald McDonald House are important to us because we never would have made it through our amazing journey without these organizations. The Make a Wish Foundation gave Isabella some of the most amazing days of her life. From our actual trip to Disney, to the Taylor Swift concert to the days as a TopCat. Looking back on her short life, you become extremely appreciative of the experiences they are able to have since they are robbed of graduation, marriage, children and everything else we take for granted. The Ronald McDonald House allowed us to be treated in New York City for just $35 a day. So many nights and wonderful memories were created during her treatment and the majority of those were in New York City. We could never have been treated there without accommodations through the Ronald McDonald House and this is true for all families who have to travel for treatment. We also occasionally help out local families with a mortgage payment usually in the beginning or ending of treatment. Local organizations provided us with this during our battle and it was a lifesaver.

I think it’s important to thank the people who helped you in your time of need. So this is what we do. Neuroblastoma is our mission and everything we do is with that in mind, which is why almost every dollar sent out from ISF goes toward Neuroblastoma research. But this organization was built off Isabella and what was important to her. Every organization is different and I think that is what makes us all special. If she told me she wanted us to give money each year to the Humane Society – then we would do it. Because in the end it’s all to honor her. This is what she believed in, so this is what we do.

Who we are:

We are Isabella. Every single thing we do is for her. Where we give, what we say, what we do, the standard to which we hold ourselves. We are honest and true and giving, all things she was. I love the compliments we receive about how we run our organization. I take them as compliments for each of us that work on the Foundation day in and day out, but it’s also a compliment to her. Because in the end, we are all just extensions of Isabella. Our work is done in her honor and we hope, like her, we will one day conquer the world and make all of her dreams come true.

Thank you to all of you who have supported us from day one up to today. I realize that without her here, it can be hard to see what we are trying to do. But know that she is still here and she is working through each and every one of us to make a difference. I can’t wait to see what we accomplish together.

Why She Did it…

September 26, 2015/in 'Why' Series/by Rachel Wood

Day 25
Why she did it…

Yesterday, I told my Mom I’m going to take a break from writing. I want you to write a blog on what the experience has been like from your point of view. Do what I do, have a glass of wine, sit on the back patio for 20 minutes, and write like you are talking to someone. What followed was not a traditional blog.

She wanted to do it, but it was hard for her. When I say that she put 6 hours into it, I’m not lying. She wrote, she revised, she had me read it and she cried. “It’s terrible. It in no way says what I want it to say. It’s just too hard to put into words.” I think she did a pretty great job of telling you her side of the story. But in case she missed a few things, here is what I saw from my point of view.

She was amazing. We received the worst news of our life and she didn’t flinch. She took a leave of absence from work and moved her life into our home. She did all the unglamorous tasks. She changed diapers, she did dishes, she gave baths, she made dinner, she did laundry, and she stepped in when I had to step out. She also lived with Stuart and I during the most stressful time of our life. That task in itself was worthy of a medal.

She put her life on hold. She didn’t get paid. She CANCELED her own wedding, due to a relapse of Isabella’s.

She traveled with me to New York. She kept my mind busy while I had to wait for scan results. She raised Grant. She raised Sophia. She raised me.

She disciplined Isabella, which was a hard thing to do. She kept her in line and knew when to be her Grandma and when to be her Mom. She kept me in line and knew when to be my Mom and when to be my friend. No matter what Stuart and I were going through, she had my back. She would yell at him when I couldn’t and try to fix us when we were unfixable.

When Isabella would relapse, she would be my first call. She would talk me off a ledge and help me make arrangements. I would go to bed that night and wake up to a doorbell ring. There she would be standing on my front porch. She would drive through the night 12 hours to be there. I would break down when I saw her because she always knew what to do without asking.

She was as close as you could be without being right there. Which is a hard thing to explain. She wasn’t making the decisions but she was implementing them. She was giving medicine and catching vomit in buckets. She was rubbing backs and changing bandages, but she was never in the spotlight. She never wanted to be. She would just tell me over and over how we were making the right decisions and that we were strong and how proud she was of me but honestly she was right there along side us.

She took the lead on dangerous radiation treatments when Isabella relapsed in the brain. I was pregnant with Sophia and it was too dangerous for me to be around that amount of toxic radiation. So she stepped in and slept behind a lead wall, allowing her own body to be radiated so that mine wasn’t affected.

She was Isabella’s second Mom and Isabella knew that Grandma would take care of her. Isabella adored her and often times would want to be with her over me because they just had this connection. It wasn’t just Isabella either. She raised Grant. And if you see them together today, it’s a bond that is unlike anything you have ever seen. The love he has for her is close to that of a Mother and it should be. She was his Mom.

She was all I had when I felt like I had nothing. I could tell her anything – no matter how bad it was. Some days I was ready for Isabella to die and she is the only one I could say that to. She would hold me up when I was ready to fall and held my hand through everything. She is the only person that I allow to give me honest feedback in my life because she is the only person in my life that knows the true me. You also never realize how much you want your Mom to crawl in bed with you when you are sobbing until she does it. She never said anything. She just got in bed and let me cry on her.

And in the last week of Isabella’s life, it was painful for me to watch Isabella shut her out. No one was allowed to be with her except Stuart and I in the end. My mom had been there from the first day to that moment and Isabella put up a wall with her. My mom was forced to lay with her only when she was asleep. But she took every single minute she could. She once again took on the most unglamorous tasks like cooking corn casserole when Isabella craved it, only to watch her not eat it. “It’s okay,” she would say to me. “I’ll do anything she wants.” We even made her drive to get Grant the morning Isabella died. We should be shot for what we put her through.

I regret all the horrible things we made her do during those years. But if you ask her, it was the best gift we could have given her. It’s hard to put into words what people like her do for your life. Sometimes you are just given someone in your life that is a true blessing and you can’t imagine your life without them. I seem to shut out everyone in my life these days. But my Mom is the one person that will never see my wall. She is the person I strive to be in my life and what I get from her is the definition of a Mother’s love. I will never fully understand how she was able to give so much to us, or why she did it. But as I grow as a Mom, I start to see that I would do the exact same thing she did because the love you feel for your kids makes you do things you never thought were possible.

My Mom is the best person I have in my life. I love her for what she did for me, for Isabella and my family. She is the true definition of a Mother. I can only hope to be half the woman she is one day.

-Isabella’s mommy

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Why I Go Red…

September 23, 2015/in 'Why' Series/by Rachel Wood

Day 23
Why I go red…

Every single time we had to tell her, I dreaded it. I found that whenever we received the news of a relapse, it was the first place my mind went. We would walk through the plan of new chemo drugs she would start and when. I would try to pay attention as best I could but I was always waiting for a break in the conversation when they would say, “Do you have any questions?”

Will she lose her hair?

Inevitably, she would always end up losing it. It was the worst part of it for her in the end. I remember when her hair started to fall out initially…she was only 2 ½ years old. We took clippers to it in the bathroom and she seemed kind of excited about the change. The lack of hair transformed her to another child. Now she was a sick child and now everywhere we went, people would stop and stare at her. Shaving her head was never a good experience for her after that.

The first time was the easiest, but each time after that was hard. We would try to sit and talk with her about what is going on but I knew that she too was waiting for that break in the conversation so she could ask us.

Will I lose my hair?

When we had longer periods of remission it would grow back. She could occasionally get a little bow in it or rock a headband without people looking twice at her. I found it funny when people would tell me they loved my little girl’s pixie haircut. Little did they know that the pixie haircut took about a year to get. One February it finally reached a length she had been waiting for; Grandma could curl it. It looked ridiculous really, but she was over the moon about having anything that could be styled like a princess. Of course, just a month later the cancer returned all through her body and she would lose it again.

When we were told of that relapse it was her birthday. We had just had a big swimming party for her and she was finally living a normal life. A call in the car from her New York oncologist that asked me point blank, “Is she still able to walk?” I was stunned by this question because just yesterday she was swimming like a fish in the pool. But when someone asks you that question, you know the news coming after it isn’t good. It wasn’t good at all. The cancer was all through her body once again. Just another time that Isabella was probably living a life with intense pain but continued to live with it instead of complaining.

It was after that relapse that we decided; if she is going to lose her hair, she can do whatever she wants with it until the last hair falls out.

“I want to have red hair like Ariel.” So that’s just what we did.

For some reason it always made the news of her hair falling out easier to hear for her. I could tell she was upset, but after the news set in she remembered our deal. Off we would go to the salon and transform her once again. She would sit in the chair beaming from ear to ear. I feel like everyone around was breaking down about the sadness of it all, but not Isabella. It was hard for me to be sad for her in these moments because she was so happy.

I think most people now think of her with her red hair. For the last three years of her life she was either bald, working a 5 o’clock shadow or Ronald McDonald red. Most of the pictures we have of her when she was at her happiest is with red hair. It’s how I picture her in my mind too.

So each September for the race, I come in and go red in her honor. I sit in the chair and squirm a little because it makes me go outside my comfort zone a bit, but in the end it’s just a silly thing I do because I know she would love it. Sometimes we would go red together and walk out of the salon hand in hand like twins. Now it’s just me – going red alone…but I know somewhere she is loving it because she knows I’m doing it for her.