Tulip Tales: Amelia

I am so excited to share the story of a precious little girl named Amelia. Her Mom, Veronica and I met several years ago, before Amelia was born, and we have since reconnected at the Janeway Children's Hospital. I asked Veronica some questions about her daughter, and have decided to share her answers exactly as I received them. Raw and real. Meet Amelia.


Tell me a little bit about your family.

We are a small family. My husband is an only child and I have one brother. Our three children are the only grandchildren on both sides. Our boys, Greg & Mace, are 16 & 14 respectively. Amelia is the 'Bonus Baby' - she came along when her youngest brother was 11. She's 3 now.

What is your daughter's diagnosis?

Her full diagnosis is Acute Lymphoblastic Leukemia (Pre B). When she was diagnosed last summer, her Platelets were 1 and her Hemoglobin was 54. Both readings are critical - potentially fatal for the platelets! She had 82% Leukemia blasts in her bones and 35% in her blood! Now she shows no signs of disease, but as Leukemia is known to hide from current medical technology, she will continue with chemotherapy through September 2020.

When and how did you find out there was something wrong?

We were camping at Terra Nova on Canada Day weekend last year. She was running to her brother and I noticed a limp. I couldn't explain it. I'm home with her all the time and hadn't seen this before. I called the doctor when we got back to town, and had an appointment for Wednesday morning, which was the next day after the long weekend. While in the doctor's office, she bled from her gums. Our doctor sent us straight to Emergency and called to let them know we were on the way. Those were her only symptoms, other than a brief fever that came and went within hours on Monday night and a rash that I noticed on Tuesday, which I now know to be petechiae.  

By the end of the day on Wednesday, they were preparing us for the likelihood that it was cancer and her blood work confirmed her diagnosis the next day.

Tell us about the treatments she has had to date and what her treatment plan is for the future.

Amelia spent two weeks in the hospital following her initial diagnosis. She had 11 blood transfusions during that period. A port was installed in her chest through which to administer the chemotherapy for the next few years. This is safer and easier than having to use an IV every time, especially when chemo is sometimes given as much as four times a week. She didn't wake up from the surgery to install the port and spent five days in ICU. One day when they tried to wake her up her responses were abnormal and they sent her for testing that revealed a small pool of blood in the back of her head and they thought she may have had a seizure. That was a scary time. But she woke up a couple of days later.

Chemotherapy for Acute Lymphoblastic Leukemia (ALL) is administered in 6 phases. Each phase is a little different with phase 1/Induction being the most intense. She received her first chemo into her spine during the surgery to install the port and they continued with it per protocol even when she was in ICU. Phases 1-5 last anywhere from 28-56 days. Sometimes there is a delay due to low blood counts, then they have to wait for her to reach a minimum level of health to continue. Most of her chemo has been textbook. She is only delayed 9-10 weeks from textbook. During these phases she received chemo (most often vincristine and methotrexate among others) through her port anywhere from once every 10 days to 4 out of 7 days. She also had several medications to take at home (i.e.: 6MP, methotrexate, dexamethasone).

Right now she is in the final and longest phase - phase 6/Maintenance. This is to attack any lingering leukemia/cancer cells that can't be detected by today's technology. She gets chemo through her port now only once every 28 days, followed by steroids twice a day for 5 days. I give her another chemo drug every night and yet another once a week. She will continue with this phase/routine until September 2020.

Since her chemo began she takes an antibiotic, Septra, 3 days a week as well, and has Zofran and Ranidine on hand for the side effects of nausea and irritated belly from the various cocktails of meds she takes. Her immune system is compromised during her chemotherapy and will be for 6 months afterwards.

  
How has your daughter's illness affected your family?  

It was life altering. And I thought we'd been through that already. My Dad went into the hospital unexpectedly in October 2013 and stayed in critical care for 9 months until he passed in July of 2014. I found out I was pregnant 6 months later. Amelia is that baby. She brought the laughter and joy back to everyone. She was everything you could want in a surprise baby - happy, easy to care for. Just a delight. To have her get sick, when she had just set my world right-side-up again, it was devastating. But you push through. What else can you do when it is your baby? It was a rough summer. The boys got out of school on a Thursday for summer vacation and by the following Thursday they were told their sister had cancer. Amelia didn't understand why she was in the hospital and not home, or why she couldn't go back camping. 

Overall, it has made me even more grateful for my children, husband, family and friends. Amelia is one heck of a fighter. So resilient. Her brothers are amazing. They have taken extra responsibility and odd schedules and the hectic chemo life all in stride. They adore her and she adores them. My husband and I know we can face anything together. Our friends and family have been wonderful support. Our fathers have passed but our moms ROCK. My mom helps a lot with Amelia since my husband went back to work last fall (he was home the first couple of months). I am unbelievably proud of Amelia, Greg & Mace!!!

How has Amelia impacted your older children?

They were always doting big brothers, but I think it has made them even more aware of how much they love their sister. They wanted a sister even before we knew we were expecting. Watching them with her, I know they will be fantastic fathers should they choose to have children! There is the realization with her illness that anyone can become seriously ill at any time. How precious life is. That has hit home. But I think they are also learning that you roll with what you're faced with. We have continued to make good memories and make the most of our family time together. 

  
What are your hopes for your daughter?

Oh my! A long, happy, healthy life! Minimal late effects from chemotherapy. That she knows that after conquering cancer she can do anything. That she knows how much she is loved. 

How has this experience changed your outlook on life?

I feel so much more connected to other people. To my friends and family who have shown up for us. To the nurses, doctors and staff who care for her. To the other parents of Childhood Cancer patients and of all sick children. One mom said to me that it's a club... One where the admission is way too high, but a loving club when you're there. She's right.

I am more likely to advocate for the charities I believe in. Where once I wouldn't want to bother you, now I will flat out ask you if you can donate to Camp Delight (for childhood cancer patients and their siblings) or if you are going to give blood! It makes me realize that anyone could be getting life shattering news at any time. When someone cuts me off in traffic I give them the benefit of the doubt. I think to myself that they could have just found out their kid has cancer, or their parent is in ICU. It makes me even more adamant in my belief that we should all be kind to one another, we can all do better and should try to do so everyday. I try to "Hope for the best, deal with the rest" and not get caught up in the details of a bad day.

  
I know that Amelia has relied on blood transfusions. Can you tell us why donating blood is so important?

Amelia had 11 blood transfusions in less than two weeks. I watched that blood go into her knowing it was keeping her alive. I learned that blood has a short shelf life. Platelets last only about 7 days! There is a constant need of donors to refresh the supply. Blood often has to be sent in from other provinces when we don't have an adequate supply on hand. Donations dwindle during peak vacation times but the need for blood doesn't, so it is important to donate as often as you can.

Blood donors give such an intimate gift. It is so much more than blood - it is the opportunity to live, love, learn, run, walk, jump! It is life-saving. Some people need blood almost every day and others only during a short period, like Amelia. But it could be any of us at any time! And in order to save a life, the supply has to be there!

Please donate blood in Amelia's honour on July 5th!  

7 Wicklow Street, St. John's 9-1pm, or your nearest Canadian Blood Services clinic! 

1-888- 2DONATE. Keep the supply going for other children like Amelia!

Finger Puppets for the Janeway

Are you guys aware of the incredible thing that is happening right here in Newfoundland and Labrador right now? No, not the icebergs, though they are lovely.. I'm talking about something a little more personal. There are people - knitters - coming out of the woodwork to help put a smile on the faces of the children of our province.

On May 9th, Denika Philpott saw a Facebook post saying that the Janeway was running out of finger puppets, and it struck a chord with her. Denika told me that she remembers visiting the Janeway numerous times with her own young children, not for anything serious, but her daughter, Abigail had to have bloodwork done quite often and every time she left she would leave with a finger puppet, and she would dry her tears and that would be the highlight of her day. She said that the thought that a child might have to go to the Janeway for bloodwork or some other procedure, and not get to have that little treat really bothered her, and so she decided to do something about it.

Denika started public a Facebook group called 'Knitted Finger Puppets for the Janeway', and it has grown to include almost 1000 people, all eager to donate their time to such a wonderful project. It is such a positive group, with people sharing patterns and offering help to those who might not be seasoned knitters. It is amazing to see how creative some people can be with such a small canvas to work with. There are pictures of finger puppets in the shape of unicorns, sock monkeys, ninja turtles, you name it! There are photos posted daily of the batches of tiny puppets that people are ready to donate. My favourite photo so far was of a bag stuffed with finger puppets with a note attached that said, "Emma Wells, 97 years old, 175 finger puppets, original pattern since 1982". Amazing.

Denika has been so impressed that people are taking it upon themselves to deliver the finger puppets to the Janeway, and they are even checking with other hospitals around the province to see who might be able to use them. She says it really shows the true hearts of Newfoundlanders and Labradorians - people pitching in to help others.

The group has now expanded to include people knitting preemie hats, and booties for the Janeway as well. There are photos of tiny babies, with captions like, "My granddaughter was born December 9, 2018, 10 weeks early weighing 2 pounds 6 oz. These hats are what kept her little head warm while she was in the incubator." If  that doesn't pull on your heart-strings, I don't know what will!

I have visited the blood collection department with Brennen many times over the years, and he always leaves with a puppet covering his bandage, and a smile on his face. Like Denika, I can't imagine not having that little token of kindness to go home with. It's something so small, but it can really brighten your day and put a positive spin on something that can otherwise be quite scary for young children (and their Mommas!)

We invited some of our favourite kiddos over on the weekend (my niece and nephew), and they had a great time playing with the finger puppets that Nanny made! We look forward to bringing these in to the Janeway this week!

I am a sucker for a good-news story, especially when it comes to children in the hospital, and I commend these knitters (including my own Mom!) for putting the time in to help put a smile on the faces of some very special kiddos. Thank you, thank you!!

Send Happiness Project

You might remember my post last year about Petit Mail - a kids story postcard subscription created right here in Newfoundland by local mom and entrepreneur, Alison Butler. Brennen and I loved receiving the postcards in our home mailbox, and we had lots of fun together exploring the activities that the cards suggested.

Brennen is a fun kid. He has changed the lives of everyone in our family. We were not expecting his disability when he was born thirteen years ago, but because of it, I have learned so much about myself, the world around us and what really matters.

Brennen has been doing really well lately, and we are fortunate to be able to enjoy these fun activities at home, but part of raising a child with a disability means that we spend quite a lot of time in the hospital. In recent years, we have spent more time than I would like to count admitted to the Janeway for one medical procedure or another. Brennen has had several major surgeries (like this one) that have found us living in the hospital for days that turn into weeks that turn into months. It is part of our life, and one that we have come to accept, but it never, ever gets easier.

Being 'frequent fliers' of our local children's hospital means that we have gotten to meet some truly remarkable families, each facing their own set of healthcare challenges. We know families who have children with complex disabilities and medical conditions, children with cancer, and other life-threatening illnesses. We know children who go through some of the hardest situations imaginable, and they do it with a kind of resiliency and strength that I've never seen before. These children clench their teeth through countless blood draws and examinations, and they withstand treatments and procedures that would make the best of us weak. These kids are tough but vulnerable and they have touched my life in a truly profound way.

Wanting to give back, Alison recognizes that there are many children in our community who could use a pick-me-up, and has created the Send Happiness Project -  delivering snail mail to children who might need an extra smile in their day!

Brennen and I will be personally helping to deliver these special cards, and every purchase will be matched with a donation (1 purchased = 1 donated).

Our goal is to brighten the days of 500 children in 2019!

I'm going to be honest with you. Brennen and I were planning to deliver a postcard to our dear friend Kaiden Little this week, but his mom wrote me on Monday afternoon to let me know that he'd passed peacefully away. Our hearts are broken for his family. Kaiden was a true warrior. He had been diagnosed with Neuroblastoma at the age of three, and he fought hard like a true super hero right to the end. Kaiden was six years old.

There are so many children in our local children's hospital who could use a smile today. If I have learned anything from having a child with a disability, it is that more than anything, these children need love. They need to know that they are valued, they matter, and that people (many people!) care about them.

Purchase a “Send Happiness Project” story postcard or letter and we will deliver a Petit Mail story to a child, in person, to brighten their day!

Tulip Tales: Emma Jane

I am thrilled to be able to share this space today with my dear friend, Sherry. Sherry is one of those power house Moms that makes you wonder how she does it all. Sherry knows that raising children is the most important job we possess, and I have learned so much from her over the years about strength, resilience, and rising above adversity. Sherry has three incredible children, and this is Emma Jane's story.

*****

I remember this carnival ride from when I was younger. It was a huge flat circle, and you stood up in it against the outside wall. Once the carnie got it started, it spun faster and faster, all of your weight pressing into your back, your body paralyzed by the centrifugal force, and it would continue until you were ready to scream for the ride to stop. Almost by magic, it would stop, and then - after swearing you would never ride it again - you would. 

That is the closest thing to how I felt leaving the hospital with my daughter Emma Jane after receiving her diagnosis of Type 1 diabetes. The paralyzing pressure would come in waves, pinning me to the wall as I struggled to breathe. And then, interspersed with the waves, little bits of relief. The day I felt like I finally understood what ketones were, and the days when I felt like I had played some small part in 24 hours of stable blood sugar, I’d fist pump in victory as I fell asleep, thinking “yeah, I got this,” only to wake up for a night check to see 3.1 on the meter - or worse, 1.2 - and we'd start spinning again.  Slowly, over time the light creeps in, that paralyzing feeling starts to fade out, your confidence builds, you feel stronger, smarter, and you can separate yourself from the disease. 

You realize that the very reason you hate Type 1 diabetes is because you can’t control it. No matter how strong you feel when the ride comes to a stop, you know it’s going to start spinning again. You just have to ride it out. Then, suddenly, a year has passed. You look back at photos of your child, right before the diagnosis - her arms so thin they look ready to snap, the dark purple bags under her eyes, and your heart can’t help but hurt. You know you shouldn’t feel guilty, but you do. You wince when you see that photo of her eating a huge apple, or drinking a mug of hot chocolate and visualize how high her sugar must have been. The danger was invisible to you then, and now it’s almost the only thing you can see.

Diabetes is real, and my precious child still has it. Somewhere in your mind you kept thinking it wasn’t real, that tomorrow you’d wake up and you wouldn’t have to put a needle in your child every time she ate a meal; you wouldn’t have to coax drops of blood out of her tiny fingertips a dozen times a day. You wanted to think that this wouldn’t last, but it did.  But you also lasted. You woke up each night when you should have. Maybe it took you a bit longer to roll yourself out of bed at 3 a.m., but you did it. Even more importantly, your child, the one who fought and screamed at you for hurting her on those bleached white hospital sheets, shes getting stronger. Braver. Now she’s checking her own blood sugar, she’s not even flinching when you stick her with that syringe, and she only winces slightly when the insulin is a little too cold.

Celebrate all of those tiny victories. Celebrate the time you nailed that bolus for that huge freaking cupcake or kept her from going low when she was out sledding for six hours. Reward your kid for when she didn’t fight you over a finger poke. Really, really importantly, reward their siblings for how they grabbed a juice box for you, for when her sister approached you calmly and said, “I think she’s low” and when you tested, her blood sugar was 3.2.

Every year brings new challenges, but it is important to recognize that living with Type 1 diabetes can also bring togetherness, new experiences and joy. Even though the ride won’t stop spinning, we’re all on it together.

Here is how it all began.

On the morning of September 3, 2011, there was a lot of excitement with back to school shopping for Emma Jane's first day of Grade 1. She was looking forward to seeing her friends that she had met in Kindergarten, and she couldn't wait to meet her new teacher. Our excitement quickly changed, when for fun, we took out my father in law's glucometer and started finger poking each person in our family, changing the lancet and going to the next person just like an assembly line to see what their sugar was. How exciting was that, we thought?! I remember the anticipation waiting for the meter to beep, everyone with their heads together trying to be the first to read the number as it beeped and the numbers popped up. 

Emma Jane was quick to put out her finger, as if it was a game she had to win. When the meter beeped and the numbers came up I leaned down to make sure I was reading it right. Must have been a mistake, I thought, and we tried it again. Same number - 29!  Hmmm...that's strange, I thought, and thinking nothing of it, figured we could wait an hour and try again to see if it changed. I went about my day not even thinking it was serious. A little past the hour we double checked and sure enough her number read the same thing - 29. Terry said, "Sher, I think you should call the help line at the Janeway just to see what they say".  

We are no strangers to the Janeway. I have spent many hours and more nights there than I can count. The staff, nurses, doctors, and rehab team are no doubt our second family. Everyone there knew us, as we have a twin that was born 13 weeks premature and weighed only 2 pounds each. They spent 6 months in ICU and NICU and we had been back many times for surgeries, therapy and appointments since their birth. When Emma Jane was born, she was a ray of sunshine in a whirlwind of emotions. She was healthy. She spread happiness on our darkest days and she completed our family.

I called the helpline at the Janeway and I knew the routine. I said to the girl that I was a bit alarmed because we were all fooling around checking blood sugars and my daughter's came up over 29, what should I do? In my own mind I really didn't think it was serious. I had no clue what it could have meant or what would happen next. She quickly replied, "Mrs. Jones, you should pack a few things for her and bring her right in right away".

I look back on that day and I was so naive. It was as if time stopped, yet things were happening so fast around me. Emma wasn't sick and I kind of felt foolish going to emergency. Gosh was I wrong! I checked in and they were expecting us. They rushed us to the room inside and I remember texting Terry and saying, "It must be serious, they took us right inside to triage." They immediately started an IV and gave Emma a needle, telling me they were trying to get her number down. This was routine. The nurse at the desk picked up the phone and I could hear her ask if they could send the doctor down from upstairs as they had just received a 5 year old girl, Diabetic. I sat by Emma's bedside and I felt a flood of emotion rush over me. Diabetic? We are the only ones in this room.. was she really talking about us? I called her over and asked if she had just said Emma was diabetic. She tried to reassure me that the doctor was on the way and would speak to me soon. I knew what this meant. It wasn't something a band-aid could fix. This was serious.

That day is forever etched in my memory. I can't erase hearing the nurse say those words. It echos over and over in my mind. Your child is diabetic.Your Child Is Diabetic, YOUR CHILD IS DIABETIC. It's life threatening. There is no cure and she will live the remainder of her life battling this disease. I can still close my eyes and see Emma crying. What were they saying? It was hard for me to hear. I can't imagine what her 5 year old mind was trying to process. She cried with every needle poke. Laying in the hospital bed with her sad eyes screaming at me to make them to stop hurting her. I couldn't stop them, this was our life now. How could we go on giving her several needles everyday? I would be the bad Mommy, always giving her a needle. I put my head down and cried uncontrollably. I felt overwhelmed. I wanted to blame someone. Did I do this? Was it something I did during pregnancy? I even blamed God. "What did I do to deserve this", I repeated over and over in my head. Surely God knows my plate is full already?

Here we are, over 6 years later. Some days I'm not sure how we got here, or how we have survived this long. We have overcome and faced many challenges, hospital stays and scary moments. Emma has gotten braver and more mature. Her understanding of her disease has grown much broader, but we continue to take it one day at a time. When the sun rises and our first blood sugar reading is done, then our day is based on that. Life with Type 1 diabetes is unpredictable and just when you're getting comfortable, it throws an axe at you to make sure your not slipping. One thing that remains constant is our family's support for each other and for Emma. We will fight this battle with her until there is a cure. Every day we pray for a cure. Until then, she will always be our spunky, beautiful, fun loving, bubbly little girl.

***** 

Sherry, you are one incredibly strong mama. I know that your family has been through so much, but I look at your beautiful, happy children and I know you are doing something right! 

Emma is so mature, so responsible, and so kind-hearted. She has always had a connection with Brennen and she is so very sweet to him. She is an all-around good kid - as are all three of your children! They are all thriving and doing incredible things, and that is a direct reflection of the way you and Terry have raised them. I know that some days are easier than others, and that some days you feel like you are absolutely drowning, but don't let the hard days overwhelm you. Take it one day at a time. Ups and downs are what life is all about! 

Thank you for sharing Emma's story. I love how you say, "living with Type 1 diabetes can also bring togetherness, new experiences and joy. Even though the ride won’t stop spinning, we’re all on it together." So true, and so relatable, no matter our journey.

If you would like to be featured on Tulip Tales, please email me at: juliebrocklehurst@hotmail.com  Please include a brief description of your child and their condition, along with any pictures you would like to share. I will contact you with specific questions.

Thanks!
-Julie