Ruby's Medical Fund
On December 4, 2014, Dr. Wade Kyono, a pediatric hemotologist and oncologist ordered a number of test that enabled him to diagnose Ruby with Acute Lymphoblastic Leukemia or ALL. The mass in Ruby's abdomen was a bunch of swollen lymph nodes that had mashed up against each other. Dr. Kyono admitted Ruby to the hospital that very night and Ruby had her first treatment of chemotherapy on December 5, 2014. Ruby appears to be responding to her treatment but the total length of time for the treatment protocol last for two-and-a-half years. This means that she will be only five years old when she completes treatment since her birthday is May 8, 2012.
Ruby is a charasmatic, assertive girl with a lot of willful determination. She showed the nurses who was boss the first time they tried to give her "yucky medicine." All the nurses said that her temperment would help her fight this cancer. Though she protested each blood draw and medication, she also won the affection of her medical team with her purple stethoscope that she wears as a necklace and her frequent singing of the Doc McStuffins song after a procedure was over, "I feel better, so much better, thank you Doc for taking all the ouchies away." She also insists on covering her PICC line with a large purple bandage, which she says makes her feel better.
The Malate's are fortunate to have had such excellent medical care but they face a long fight ahead of them. The Malate's will have to initially fly from Hilo to Honolulu every week for Ruby's treatment. Their insurance does not cover this expense. Ruby's immunity will be vulnerable especially during the early part of the treatment protocol. Emily closed her private practice as a psychotherapist in order to care for Ruby. Jeff is also taking time off from his job as a deputy prosecuting attorney to care for the family. Although fighting this disease is impacting them both emotionally and financially, the Malate's are looking forward to having Ruby dance in her tutus again.
of chemo. Ruby understands this is her last chemo pill, but I don't
think she understands what this means. She told me this morning that I
am more excited about this than she is, and that's probably true. She
may not understand the significance of this day until she is much
older. To me this day means she will feel better, we will have less
germ hypervigilance, our lives will open up for other priorities,
things will become more "normal" for both kids and we've reached the
end point of the hardest thing I've ever done.
You'd think I'd be dancing on a rooftop today, but I'm not. I've read
that its common for parents in our situation to experience this
milestone with a giant ball of mixed emotions. I am grateful,
relieved, proud, and reflective. But I am also struggling with some
survivor guilt, anxiety about what comes next, fearful of relapse and
feeling the normal restlessness that comes with a huge transition. But
I'm sure over time, the extent of the full relief of being done will
fall into place.
Thank you for sharing this challenging chapter of our lives with us.
The amount of love we have been surrounded by has been such a cushion
during all the discomfort we have faced.
This is our second to last post. I will be closing our Go Fund Me
account after Ruby's Make a Wish trip to Disneyland in March. This
venue has allowed us to keep folks on and off social media informed
and connected in one easy message. Please feel free to reach out to us
via email or phone if you want to check in.
On this day, in honor of our fighter, please hug the ones you love and
be extra kind and compassionate to strangers you encounter. Life can
be hard, you never know what battle someone is going through. We
appreciate the compassion you've given us. Much love, Emily
But then she just handles it - sitting up straight and calm, waiting to cry until after the poke is done.
She is amazing. Glittering and twirling on the days she feels good, going to preschool when she can, but we are very aware her health hasn’t been stable for quite some time now. The doctors are great; the care we have received is wonderful. We are grateful, but getting scared that her little body is having a hard time rallying.
I thought maybe reaching out would help lift our sails. Thank you for being there and following Ruby through this long battle. (And no, I’m not going to say “journey,” – battle indeed, and she is a warrior.)
We have encountered another bump in the road in Ruby's treatment. Last Saturday she went to the Hilo ER with a high fever and a sore stomach. We were sent home that day after numerous pokes and other tests. Her blood count was just a tiny bit above the neutropenic cut off. Symptoms got better the next day but then came back. After the second blood culture results, we were told that Ruby needed to be in the hospital for IV antibiotics to treat a slow growing infection in her blood. We also have learned that her port is no longer functional - it is clogged by a large clot. The doctor said it is fairly common for the body to reject the foreign object like this towards the end of treatment but we were all hoping it would've taken us a little bit longer. It's too risky to try another port so she is having it taken out on Tuesday and the other chemo treatments will have to be done through an IV line each time we come to Kapiolani. Sigh. Most of us know how much those IVs hurt - the port spared her this unpleasant experience. But, it is what it is, and we are happy we got it figured out. The IV team here is very skilled with little ones and were able to put it in on the first try.
During these dark first days, we had a wonderful surprise. Make a Wish Hawaii had arranged for a real mermaid to come visit Ruby! Her name was Lea and she is Ariel's cousin. Ruby learned all kinds of mermaid trivia and can't wait to prove to her brother that mermaids are real!
Jeff and Lincoln are busy getting ready for the Relay for Life fundraiser in Hilo. The theme this year is "Paint the Town Purple," how perfect. We are sorry to miss it this year.
Much love. Ruby told me to tell you "I'll be okay, don't worry."
She enjoyed her special day splashing at Coconut Island with her friends and family. The day was full of glitter and splashing - perhaps her two favorite things.
Thank you for all the support this past year. When I think about where Ruby was during treatment last year it shows how far we've come.
During breakfast today Ruby said to me, "Mommy remember when I lost my hair? That was funny. I don't want to do that again." I can just picture her a year ago on her 3rd birhday dancing around in a purple tiara with chubby steriod cheeks and nothing but a peach fuzz scalp. Same spirit, same girl, but now she is at a much more comfortable place.
She has adjusted well to preschool and has made two good girl friends. Today they were discussing why they don't like Ursula.
Her blood counts have been stable, and we are having a good calm period of treatment. (Hope I didn't just jinx us!)
Much love to you all.
wow she's a cutie! she's a perfect mix of you and jeff. I cannot imagine what you are going through. Every time I read these or see a post by you I send / say a prayer and my heart goes out to you and your family for health and healing and strength and courage. If there is anything ever I can do, please ask. We are so consumed in our little busy world. I just though I would reach out to you. Perhaps we can meet up some time and get our sons together again! all my aloha and love! jill