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!

Kaiden's Wish

On Saturday, Andrew and I took our two boys to the 7th annual Terra Nova Motors TruXtravaGanza!

The TruXtravaGanza is a fundraiser that Terra Nova Motors hosts every year to raise money for the Children's Wish Foundation. The event features street trucks, classic trucks, off road trucks and ATVs navigating a full size obstacle course and mud pit. Let's call it what it is - grown men playing with their toys in the dirt! It's awesome, and it's all for a great cause!

This year's event raised money to go towards granting the most heartfelt Wish of a very special little boy named Kaiden.

In January of 2016, at just 3 years old, Kaiden was diagnosed with Stage 4 Neuroblastoma - a type of childhood cancer that starts in immature or developing nerve cells.

Kaiden's mom, Danielle says, "We were two months trying to figure out why his legs were hurting. He was in so much pain he could hardly walk. He was misdiagnosed with juvenile arthritis. Kaiden had six rounds of chemotherapy. He spent his 4th birthday having stem cells harvested at the Sick Kids hospital in Toronto. He had surgery to insert a G-tube into his stomach to allow us to provide him with the nutrition he needed, as he had no appetite and he was nauseous from the treatments. Kaiden had surgery to remove one of his adrenal glands - the primary area of disease. Kaiden went to Sick Kids hospital in Toronto again, where he received high dose chemo before he had a stem cell transplant. We were there about a month before we were able to come home. After that, we returned to the Janeway for 12 radiation treatments on his leg and abdomen, where he had to be put to sleep each day for those. We finished treatment off with 6 rounds of immunotherapy."

The good news is that Kaiden is now in remission! His recent CT scan and bone marrow tests were all clear, and his echocardiogram and EKG showed normal heart function! Kaiden will be monitored closely, but he can now resume his life as a healthy and happy little boy!

At the TruXtravaGanza on Saturday, Terra Nova Motors presented Kaiden with his Wish package that included tickets for the Disney Pop Century Resort and a Disney Dream Cruise! He and his family are leaving for Florida next week! So exciting! Have a wonderful time, you guys!!

We had a great day at the TruXtravaGanza, watching some insane drivers tear it up in the mud, getting stuck in the pits and attempting to climb over massive tires and other obstacles. It was impressive, I have to admit. I didn't think I was, but it turns out I'm a fan of truck shows!

This little one loved all of the noise and excitement! 

Here are some action shots taken by Matthew Myler. Check out more of his photos from the TruXtravaGanza HERE.

Thank you to Terra Nova Motors for your incredible support of the Children's Wish Foundation!

If your workplace would like to know how you can grant a wish through the #HeroesChallengeNL, call Dave at 709-739-9474 or see their website for more details at www.childrenswish.ca/hero

Diane

A couple of years ago, my beautiful friend Diane Coffin wrote the story of her little boy for my Tulip Tales series. Benjamin was just three years old at the time, and she wrote about his condition and how it affected their family. Benjamin is similar in a lot of ways to my son Brennen, and I could certainly relate to her when she said things like, "There have been many ups and downs on our journey. We have had some really dark days when it is hard to believe that there is a light at the end of the tunnel. Thankfully, there are also some really great days where people rally around us and inspire us to keep fighting. Sometimes it is anything but easy to raise a child like Benjamin, but one look into his beautiful eyes melts my heart."

You can read Benjamin's story HERE.

Diane was always very positive and upbeat. She poured her heart and soul into her children, and went above and beyond to advocate for her son, Benjamin. She was a fighter in every sense of the word, and she had no idea, at the time, what was in store for her family.

Diane passed away yesterday, after a short but heroic battle with breast cancer. I am absolutely heartbroken at the loss of my beautiful friend, and I just can't even begin to think about what this must mean for her husband and children.

People say things like, "God won't give you more than you can handle."

Bullshit.

That's like saying, "It's ok that your wife died. You can handle it." "It's ok that your child has a life threatening condition and will never live any sort of 'normal' life. You can handle it." No. These are not things that people can handle.

I cannot believe that someone would look at a family like Diane's and say, "Let's give them more hard things. They can handle it."

It is not fair, and some families just have too much heavy stuff on their plate to even be considered 'manageable'.

I used to believe, when Brennen was younger, that he was my one 'hard thing' in life. I thought that I wouldn't be affected by things like cancer or disease or other devastating health issues because this was my hard thing and that was enough. Well, obviously it doesn't work like that. There isn't someone up there evenly doling out hard things, who stops when he thinks you've had your fair share. There is nothing fair about it. Life is completely unfair, and unpredictable, and undeniably cruel.

Tomorrow, our close-knit group of Moms - parents of children with special needs - will gather together at Diane's visitation. We will hold each other up, like we have done so many times before, but never in a situation quite like this. We have been there for each other through all of the things that come with raising a child with a disability - appointments, admissions, surgeries, sickness, close-calls, and even for the tragic losses of some of our children.

I always thought there could be nothing harder than that. How do you come to terms with the death of a child? How do you go on after something like that? And perhaps, there is nothing more difficult, but thinking of Diane and her family and how they will carry on without her is really tearing me up right now. The thought of her saying goodbye to her children, and for her to know what she was leaving behind is almost unbearable.

Diane faced her battle with grace and bravery. She has given me hope, in a weird way, that one day I will be able to face my biggest fear just as bravely as she did.

It wasn't until I had a child of my own that the fear of death - both for me and him - became something really heavy. Andrew and I have spent countless hours talking about life, and loss, and children, and family, and the what-ifs. It is a LOT to think about, but what we always come back to is love and human connection. Really, when we strip everything else away, that's always the one thing that's left. Our love for each other, and our relationships in this life.

I know I will hold my loved ones closer, and cherish the time I have with my precious little boy. I am thankful for the support of our group of Special Needs Moms, and the strength we gain from each other in times of sadness. But, what can we do in times like this? What can we do to show our love and support for one of our dearest friends?

I think something each of us can do to honour Diane is to work on being a good person, on living a good life, and to work on making this world a better place than it was when we arrived. At the end of the day, it's sort of all we can do, isn't it? Be the best mother, the best friend, the best partner or spouse we can be. Love your kids. Teach them to be grateful. Live by example. Make the choice to be happy, to be compassionate, and to look out for each other.

We all have it in us to be able to improve the world, to make it better and brighter, and Diane did exactly that. She was a bright light in a world that holds a lot of darkness. There are so many people who's lives she touched, and so many people who are grieving her loss right now.

We will never forget you, Diane. You are an inspiration. You are loved, and you can be sure that your children will always know how much you love them.

Tulip Tales: Liam

At just 10 months old, Liam Wrice was diagnosed with a brain tumor at the Northern Lights Regional Health Care Facility in Fort McMurray. His parents, Jerry Wrice (of Carbonear, NL) and Natasha Hewlin (of Cow Head, NL), share their son's incredible story.

***** 

On December 28th, 2014 our little miracle arrived at our home. He couldn’t wait to come into this world! He wouldn’t even let us get to the hospital to deliver. It was then that we knew we had a determined little guy on our hands! Through the first 10 months of Liam’s life, we watched his progress, his development, and marveled at how smart of a baby he is - a baby with a smile that could melt your heart, a baby who brought us the true meaning of what life is really all about. 

Liam never experienced a day of sickness until the early days of November, 2015. It was on Thursday, November 5th that Natasha and I decided we should take Liam to a doctor. Early symptoms were virus-like - a small fever, a little vomiting, and sleeping lots. The first visit was to our family doctor in Fort McMurray. We thought it was a virus and needed to run its course. We were told to go home and give him some Tylenol for the fever. Two days later, on November 7th, we took Liam to the Emergency department at the Northern Lights Regional Health Care Centre. Again, we were told it was a virus and that it needed to run its course. 

The following day, Sunday November 8th, Liam had a couple of blisters break out in the temple area of his head and we took him back to the hospital once again. It was then that they ordered blood work and urinalysis, but nothing was found. They told us the blisters were likely his fever breaking and that it should clear up in the next couple of days. On the morning of Tuesday, November 10th, I was getting ready for work and noticed Liam lying awake in his crib. I knew that wasn't like him. Typically, if Liam is awake he wants to be up and playing, so I picked him up and put him in bed with Natasha. I went to work and wasn’t there 20 minutes before I received a call from Natasha saying that Liam’s lips and tongue were moving uncontrollably, and they were on the way to the hospital. Upon arriving at the hospital, I met Natasha there and they took us in immediately. The pediatrician took a quick look at him and ordered an MRI scan and a spinal tap. Prior to getting the MRI, they hooked him up to a heavy antiviral drug in case it was a virus that had spread to his brain. Once the MRI was done we understood that a spinal tap wouldn’t be required and that we would be going back to the emergency department to wait for the doctor to come and discuss the results with us. It was about 15 minutes later when the pediatrician came in to our room at the emergency department and delivered the shattering news that Liam had a mass on his brain and that a medical team was on route to airlift us to Stollery Hospital. At that moment, it honestly felt like someone dropped the world on our shoulders. Our whole life came crashing down.

Upon arrival to the hospital in Edmonton, surgeons were expecting to have to perform surgery right away based on the size of the tumor (9cm x 9cm x 9cm). When they had the opportunity to meet Liam, it was determined that surgery wasn’t an immediate requirement and that they would have a little more time to plan the surgery.

It was determined that Liam would undergo surgery to resect the tumor on Friday, November 13th. At approximately 9:45am, the nurse practitioner came to the waiting area where our family was anxiously waiting news on the progress. The first update was that the tumor was proving to be difficult and it was likely they would not be able to resect the entire mass during this surgery and that based on their findings under the microscope, it was going to be an uphill battle. Not another hour had passed when the neurosurgery team came to update us again. They were there to say that the entire tumor had been resected! What appeared at first to be challenging wasn’t so challenging after all! They came to an area that they thought would be difficult, however, there was a fine delineation between the brain and the tumor and thankfully they were able to lift it out without issue. 

Liam spent the next 5 days in the Pediatric Intensive Care Unit, where he was under 24 hour care. He proved to our whole family at that time just how strong he was. Just a short while after surgery he started to follow voices with his eyes. He ate a Popsicle just a couple of days after surgery, and started doing other silly things that Liam was known for.

After 5 days in the PICU, Liam was brought back to the post-surgery floor. This was time for recovery and time to understand the pathology of the type of tumor on his brain. Liam experienced some swelling during this time and there were a couple of anxious moments.

After a few days up on this floor, our family was advised that the pathology was back and it determined the type of tumor Liam has. We were called in to a meeting and were told that Liam has an AT/RT (Atypical Teratoid Rhabdoid Tumour). AT/RT is an aggressive, fast growing and very rare cancer which mainly occurs in children under the age of 3. The chances of getting it are 1 in 3,000,000. In the United States each year, approximately 30 children get diagnosed with this type of cancer. The prognosis is based on many factors such as age, location, metastases (spread), and ability to resect the tumor. The team at Stollery Hospital in Edmonton did tell us that they have had very little success with this type of cancer. However, in Liam’s case there are high hopes and great optimism. They were able to completely remove the tumor, and there was no spread to his spine and kidneys (which are the only other areas to which this type will spread). We were advised that over the next 9 to 12 months, Liam would receive an aggressive chemotherapy protocol.
 
Liam was placed on the oncology ward at the Stollery Hospital. After a couple of days there, it was determined that Liam would require a shunt to be placed in his head due to the swelling. This surgery went very well, and Liam recovered rather quickly.

A couple of days after the shunt surgery, Liam was discharged for a week so he could return to Fort McMurray and spend some time with his family before returning to Edmonton to begin his chemotherapy. Upon returning to Fort McMurray, he enjoyed a full week at home playing with his toys, living a 'normal' life, and celebrating his 1st birthday.

Liam returned to Edmonton on December 13th, to be readmitted to hospital. On January 11th, 2016 Liam and Mommy traveled to Calgary via medevac for Liam to have a stem cell harvest. Part of Liam’s chemotherapy protocol is to have high dose chemotherapy. This completely suppresses the bone marrow, therefore Liam needs his stem cells to go in after his chemotherapy and rescue him. This stem cell harvesting needs to be done in between his standard chemotherapy cycles, when his counts are the highest. On Wednesday, January 13th, Liam had his stem cell harvesting procedure done at the Calgary Children’s Hospital. The required number of stem cells he needs for his future therapy is 150 million. At first they advised us that there was potential to have to do this procedure a second time if they didn’t get enough stem cells, but just 4 hours into his procedure they had 165 million stem cells!
 
On Friday January 15th, Liam and Mommy came back to Edmonton. Liam had a couple of baseline tests performed - one for hearing, the other for kidney function. Both came back fine. Also on that day, Liam finally got 'evicted' from the isolation room, after being in isolation for over a month! They cleared him from all viruses, which meant that he could leave his room and go out for walks. On January 19th (just this week), Liam began round 2 of induction chemotherapy. 

To date, Liam has proven to be a champion, a true inspiration and a superhero. He is stronger than you could imagine, braver than anyone we know, determined as can be, and happy even on his worst days. He will win this fight, and it is the love, support, prayers and well wishes from all over that will help him get through it. Our family thanks everyone from the bottom of our hearts for the support shown to our son, Liam. 

If there is one message to be delivered to any parent out there, it is that you know your child better than anyone - better than any doctor or any nurse. If your child is acting different or is not feeling well, you know it. Be persistent with the medical team and ask questions. We were very fortunate that in just 3 visits to the Emergency department, they found the tumor on Liam’s brain. The average time to diagnosis is between 4-7 visits to an ER.

-Much love from Natasha and Jerry

*****

Jerry and Natasha, I can only imagine what you are going through. My thoughts and prayers are with you and your family, and especially to sweet Liam. He is strong. He is a fighter, and he will get through this thing. It must be such a scary time for you all right now, but I can only hope that your fear and worry is swallowed up by the day to day joy that your little boy brings. 

Liam’s journey can be followed on Facebook by searching - #LIAMSTRONG – Liam’s Journey to be AT/RT Free.

The family has also made available for purchase #LIAMSTRONG bracelets. These bracelets are dark grey in color, which symbolize brain cancer. These are being sold for 2 reasons - as a fundraiser, and to raise awareness of brain cancer, specifically in children and infants. Childhood brain cancer is the second most common type of cancer in children, after leukemia. It isn’t heard of often, it isn’t talked about enough, the study and research into childhood brain cancer is not where it needs to be. There needs to be a cure. Wear a #LIAMSTRONG bracelet proudly and share Liam’s story. Please feel free to direct people to the Facebook page so they can follow his journey. Awareness is key in finding a cure.

Liam's father, Jerry says, "We will some day, some way, some how, find a way to thank every single person who has been a part of Liam’s journey in one way or another. Natasha and I have made a commitment, and that commitment is – At the end of this journey, if there is 5 cents left over from the fundraising and support that has been given to us, we will pay it forward to someone who needs the same support we required."

#LIAMSTRONG