**** this is a friend of Mine and Tony’s, she lost her sister Rachel to cancer. Friday is Rachel’s birthday. I am honored to get to share just a piece of their story. ****
I spend a lot of special occasions, holidays and large moments in my life visiting her. I have taken each of my children to meet her within the first week they were on this earth. I rushed to tell her when I was getting married, having children, buying a business, buying a home or when I myself was faced with the word “cancer” because I know she is there to always listen to me. I’m her big sister so it seems only natural or instinctual to me to tell her all the big stuff in my life as it happens. She is my only sister and I have known her every day since I was 13 months old. Rachel and I have always been the dynamic duo in many ways. We aren’t similar, in fact we are actually the very opposite of each other. I don’t think I could truly encompass all the facets of my little sister in one blog. She is everything all in one. Rachel is the prankster.
When we were very young (early elementary school years) we were going on a trip with our neighbors to Disneyland. This was insanely exciting to us. We were supposed to be asleep in our bedroom at our grandparents house but we were to hyper to sleep. Finally after getting in trouble many times for not sleeping to the point of being threatened that we would not be able to go with our neighbors I went to bed. A little while later I woke up to Rachel laughing hysterically. When I looked around I couldn’t see anything only darkness. She was laughing so loud that we were heard again from down the hall.
Now I should have been able to see even in our dark room but I couldn’t. It was in that moment I realized I was blind. I began screaming “I’m blind! I am blind!” causing the return of the adults to our room furious. They turned on the lights and started to tell us how much trouble we were in when my fear escalated my volume about my vision loss. I was told to “open your eyes” so I of course responded that I had. Rachel was in full hysterics by this point and I was torn with terror. They came over to me and tried to get me to see everything when they realized that my eyes were sealed with something keeping them closed. Rachel the little trouble maker had got a bottle of CLEAR nail polish and polished my eyelids closed together. After a call to poison control, some creativity and a lot of trouble my eyes were back to normal. I however even now at the age of 37 have very few lashes because of this little stunt.
Rachel LOVES every animal and all babies. She was blessed with the natural maternal instinct that I honestly had to learn to cultivate inside myself. She should have been named Menace instead because of her ability to find just the right trouble for us to get into.
While I was doing my jr. high years she became increasingly ill. My annoying little sister had cancer. It was aggressive and she was in nonstop appointments. She did rounds of chemo and radiation that caused her to lose her hair. Rachel’s “style” around this time was red lipstick, two pairs of socks in different colors on top of each other scrunched down over her pegged pants and anything that she seemed to find an interest in at that moment.
Rachel went into remission and to me that meant cured. I was 13 and my 12 year old sister must have been all better as far as my youthful minded could grasp. I didn’t realize that getting to do things with the Make A Wish Foundation was a sign things weren’t all better. Unfortunately that wasn’t the case.
I was a kid, she was just a kid. My little sister who could take on the world was just a child who shouldn’t have been poked nonstop by needles, shouldn’t have been up all night throwing up from the intense medications she had to take, she shouldn’t have lost strands and clumps of her hair. Rachel was treated terribly by other kids because of how the illness made her look. People would stare and move away quickly at times. There was a female singer at the time that had a bald head so people would call Rachel by this singers name as a joke due to her hair loss.
My motherly sister should not have gone through treatments so extreme she was looking at a future not being able to have children that she wanted to have. My younger brothers (I have 2. Michael is 13 months younger then Rachel & our youngest brother Matthew is 10 years younger than Michael) shouldn’t have to watch their big sister fight to breath, struggle to get food or hear her cry because of the pain she was in.
She was going to need a bone marrow transplant this time so Rachel needed to be in isolation at Stanford in the Lucile Packard’s Children’s Hospital during her second round fighting this beast. This was a horrific procedure for her to undergo. My little brothers and parents relocated to the Ronald McDonald house near the hospital to be close to her. I remained living with my grandparents in Gilroy a few hours away from them. I still thought that even though this round was different the outcome would be the same.
Rachel now 14 and I at age 15 were looking at this more as a reason to do some shopping. I already had a job so prior to her surgery I took my little sister shopping at our local outlets to buy her some necessities to wear during and after her transplant. I had no idea it would be the last time I ever got to go on an adventure with my little sister. She should have told me! I should have known she was that sick I was her big sister. It was my job to protect her; I had fought to protect Rachel my entire life from things big, scary and harmful. I’m the oldest of the 4 of us and I am supposed to take care of them through everything even now. We grew up fast, hard, intensely and in a nontraditional environment but we kids stuck together and we survived things kids sometimes can’t. So this shouldn’t have beaten us.
When Rachel found out she was going to lose her hair again she took it into her own hands and she got her head shaved into a mohawk. She had the hair dyed purple and teal the colors of a Barney kid’s character from TV that our little brother Matthew really liked to watch just for him. I was 15, Rachel was 14, Michael was 13 and Matthew was 3 at this time. I went to see her at her room with a special decontamination area for entry. She decorated it with these little troll dolls that were popular at the time. I got her a baby one of course to add to it. She would chatter on with every nurse or hospital employee who entered like it might be some fun summer camp. Again I took this as a sign of she was kicking cancers butt. I would leave to head back home and tell her see you later. Sometimes you don’t get to.
The call came.
It came out of nowhere.
We needed to rush.
My grandparents and I got into the car and made the trip to see her. Something had happened. Adults don’t explain to kids in these kids of moments. They go into “best case scenario” mode and try to talk to kids about just being positive for the person who is sick. It’s all unanswered questions and keep strong.
There she was.
It seems like she is sleeping again. She does that a lot because of being sick but she looks different this time. She is so pale and puffy. She is so swollen. Everything smells like hospital again. She is so filled up with fluid I can see every red and blue pathway through her skin. Everyone is crying but why? Everyone keeps taking a turn to talk to her while she is asleep. She doesn’t move at all, she just lays there with all the sounds of her monitors going, people touching her and talking.
It’s my turn. They tell me to say she needs to fight. Then they tell me to say she needs to know its ok to let go if she needs to. What does that mean? It wasn’t ok! How is that ok? Why do they all keep telling me how sorry they are? I don’t understand. It is still not ok. She wasn’t supposed to leave me behind to fight alone. It is so hard and so lonely without her. I couldn’t tell her goodbye because I didn’t want to lose her. I told her if she had to go I would be ok and I would protect the boys. It was a lie.
I will never be ok again something will always be broken and darker inside. I will now always be furious when I hear a child has cancer. I will be the only sister they have to watch get old. I will be the only aunt for their kids from our side of the family now. My kids won’t have their Aunt in a normal way. I left to come home that day while my sister was in a bed asleep in a comatose state. That is the last time I ever felt her hand warm.
We were heading back in the afternoon. I was with my older cousin Melissa on a trip to see her again. We stopped at the gas station to fill up. My Uncle Bob owned the station so he called telling them to send his daughter (my cousin Melissa) back home before heading to see Rachel.
THAT WAS THE CALL.
We went back to my Aunt Toni & Uncle Bob’s house. We walked in that door and that was the moment in my life she left me behind. They had to do the most unthinkable thing of telling their 15 year old niece her little sister is dead. I don’t know to this day how they found the strength to make it through that with me. Rachel Hubbard who was born on April 24th, 1979 died on August 2nd, 1993 at age 14. She will never have babies, she will never be asked to a prom, she will never hold my children, she won’t get married and she won’t sit to talk to me anymore.
I’m 37 now and it never goes away. From the moment I started to type this I have been crying. I’m not a person who cries. The pain is sometimes just a shadow, always there but not blocking anything. I visit her all the time with big news or troubles. My kids (age 17 & 6) visit the 14 year old girl they call Aunt Rachel with me at a plot of grass.
Since the day she passed away I send my little sister balloons in purple or red her favorite colors. I send them on her birthday, I send them on her memorial day, I send them on days that end in the letter “y” and I sent her my first one the day I had to tell my youngest brother that we could still give her gifts by kissing a balloon and writing her a note on them because they will float up to her in heaven where she is helping god with all the new babies who will be born. That a balloon will let my sister know I love her and miss her or that she is on my mind.
Jordan (my daughter) and Jaxson (my son) now have this family tradition of sending her love this way. Every year on her two big days (April 24th & August 2nd) I wear red lipstick just like she wore. We all do.
She is with me always. She is everywhere I am at all times. Rachel is unpresent company. Two of these songs we played for her the day we put a little girl wearing pajamas into the ground. It’s been over a decade and my entire family is still affected by cancer.
No more daughters, no more sisters, no more cousins, no more nieces, no more granddaughters, no more friends… NO MORE CHILDREN should suffer with cancer and no more should die.
Happy 14th birthday again.
– Kristen Oakley-Hubbard