Jenay, 7 (Anchorage, AK) | Cancer

JENAY, 7 (Anchorage, AK) | Acute Lymphoblastic Leukemia

written by her mother, Christal

photographed by Danielle Wakefield (The Birth Photographer) 

In late October of 2011, our 2 year old, Jenay Faith, started walking with a little limp.  She had slowed down a bit, but never complained about anything hurting. We thought maybe something was wrong with her back, so we took her to an excellent chiropractor in town. After many x-rays, he determined there was nothing wrong with her back. 

Searching for answers, we then called her pediatrician. They did a check up and a blood test that showed her iron was very low. We were told that we needed to go to Providence Hospital and have more blood tests done directly from there. 

It was scary...not knowing why they were low, or what was going on. I remember thinking "whatever it is, God will take care of us." Instantly, a weight lifted off me and I felt peace. 

After more blood tests, we were told we needed to wait in the hospital until the results came back and they knew for sure what was wrong. It could be an infection causing her white blood cell count to soar, or it could be ALL- Acute Lymphoblastic Leukemia. We were hoping and praying it was an infection, but after a day and a half of waiting, our worst fear was confirmed.  

On November 17, 2011, Jenay was diagnosed with ALL. It was the most devastating news we have ever received. I didn't understand how this could  happen to our healthy 2 year old baby girl. Our lives were turned upside down in an instant. 

I remember thinking "what did I do wrong? Did I not give her enough calcium and vitamins? "  I even wondered if I had not breastfed her long enough.  Doubts and fears flooded my thoughts. I came to accept that it was nothing I had or hadn't done. That it wasn't my fault. If I could have taken her place, I would have. I didn't want to see my baby go through what lied ahead.  I didn't want to face it myself. I wanted to run and hide from the world. But I would look at her sweet little face and I knew I had to face this and be strong so she would be too.

We were told we should go to Seattle Children's Hospital immediately. After discussing options with the doctors, my husband quickly reasoned and said "Jenay can be just as blessed here as anywhere else for her treatment. She needs the family around her and I need to continue to work here."  

Our oldest daughter, Jolina, was in 1st grade at the time, and we wanted to keep things  normal as much as possible for her too.  We also knew that they needed each other, as sisters do. We didn't know then that Jolina would be Jenay's biggest fan and her cheerleader. Making Jenay laugh and and keeping her spirits up was natural for her. 

We trusted the team of oncologists and doctors and nurses here at Providence to take good care of our little princess.

Jenay started treatment right away and had great success in the first month. After the first month, the cancer cells had reduced down to under 1% and  in remission. This was great news, but we still had to go through another 6 months of intense chemotherapy treatments. She lost her hair soon after treatment started, but she didn't miss it. She wore cute soft  hats to protect her soft baby like skin.  

She had some complications along the way, including a bad allergic reaction to one of the chemotherapies which required a little extra medicine to help with the alternative therapy. 

She was so brave. 

I remember one day, as the nurse was about to poke her port, she said " that's not gonna hurt". She was so strong and courageous and fearless. That's what makes her a warrior.

The nurses loved her and she loved them. She  knew they were taking care of her and felt safe and nurtured. Many of our hospital visits were a special time. Time spent together. I wouldn't change that for anything. 

Everyone at Providence was helpful, thoughtful and compassionate. It felt as though we had another family. That was the anchor  that helped us get through some of those long stays when she had fevers and counts were very low.  

Her big sister remembers these times the most. She pushed Jenay in a little squishy red car that she loved riding in. Up and down the halls in a little red tricycle, Jenay would ride. She didn't know she was building her leg muscles back again. She just loved moving and playing like  normal kids do!

Jenay's diagnosis has affected our family in many ways. It has brought our family back together. A major illness woke us up to the most  important things in life, like enjoying and celebrating  life with family. Cherishing the moments we have together. 

We are more thankful for even the smallest things; they are all blessings from above. Saying "I love you" more and  giving more hugs are healing and life-giving. We do those more now. We realize life is truly a gift and every day is a present. I guess thats why it's called the present.

Jenay is now 7 years old and in 1st grade. She is a healthy, happy, energetic, funny, bright, creative, smart and  special girl . She has conquered a disease no one should have to and she did it with grace, courage and strength. She is an inspiration and light. For that I call her a warrior (princess). 

Madisyn, 13 (Kodiak, AK) | Cancer

MADISYN, 13 (Kodiak, AK) | Ewing's Sarcoma

written by her mother, Jessica

photographed by Laura Stennett Photography 

When my daughter Madisyn was 5 years old, she got hurt on a trampoline. She was screaming in agony while we were driving to the hospital but by the time we arrived she was calm and had full range of motion so they sent us home and told us to ice it.  For almost 8 weeks I took my little girl to the doctor time after time to be told it was nothing.  I knew in my gut that something was wrong. Finally, one day in October of 2009 I told a local doctor that I was not leaving until an x-ray was done, something was not right.  Our lives changed forever that day.  What started with arm x-rays ended with a life we could have never imagined.  We were told she had a large mass in her arm and that Seattle Children's Oncology team wanted to see her immediately.  My mother, Madisyn and I went to the airport with one suitcase, not knowing what to expect.  We said goodbye to Madisyn’s 2 year old brother, not knowing when we would see him again and we waited at the airport for the fog to lift for days, finally the US Coast Guard stepped in and Madisyn and I were airlifted to Elmendorf Air Force Base and then shuttled to the commercial terminal.

We arrived in Seattle at 3 am and were shuttled the Ronald McDonald House where we would spend the next 7 years off and on.  Appointments started at 7 am and we were told to expect the worst.  Madisyn had a biopsy on her 6th birthday that confirmed our worst fear.  Madisyn was diagnosed with Ewing's Sarcoma of the left arm.  

Patients with Ewing's sarcoma have an overall 5-year survival rate of 66%. This diagnosis required 12 months of intense chemotherapy, and too many surgeries to count.  How can this be?  Her little life has just begun but now she is fighting to stay alive.  My mother and I spent every waking moment trying to get Madisyn to eat and drink and live.  Everyone knew Madisyn back home in Kodiak, and now most of Alaska.  Not only did they know in Kodiak; they ran fundraisers so we could keep our home.  

We lived a normal life the best we could.  We spent a lot of time at Seattle Children's Hospital, and if we weren't inpatient at the hospital, we were allowed to stay two blocks away at the Ronald McDonald House.  We could not be more than 15 minutes from the hospital at any given time.  We were not one of the lucky ones that got to go home on weekends.  We would not return home for a year after leaving.

After 10 months and too many surgeries to count, Madisyn contracted an infection due to her weakened immune system and was admitted to the ICU with a fever of 112 Degrees.  They packed her tiny little body in ice and told us that this might be the end.  Like the warrior she is she fought like crazy and when she awoke in the ICU and her infection cleared up we met with her team and together we decided that Madisyn's little body couldn't handle any more.  

We would not be continuing the chemotherapy protocol and would be returning to Kodiak for three months and then return to Seattle for testing to see if the cancer had returned.  For three years, we flew to Seattle every three months to face two full days of testing, followed by waiting for the results to see if her cancer returned.  It has not; she now 12 years old and still cancer-free. 

We return once a year for her cancer testing  these days. We dread these visits so much; one test, one cell, one problem equals a death sentence for Madisyn.  

We visit Seattle much more often for the implant problems.  Madisyn continues to have daily issues and pain related to the titanium elbow implant that is now part of her arm.  She has had too many surgeries to count, attempting to fix various issues with the implant and the pain it causes her.  

We traveled to Seattle again earlier this year when her pain was no longer controllable.  Her implant is now sitting half in and half out of her bone. Part is resting in the soft tissue.  Her little body hasn't grown enough bone mass to completely stabilize the implant.  So we are under strict instructions- no running, no jumping, no climbing, no carrying anything, a sling during all waking hours, and  no PT, until they can make a new implant, get FDA Approval and perform the surgery.  

We have been told the FDA is behind on the approval process and it could be January before the new implant is ready.  If we cannot keep her pain under control or the implant looks like it is going to break through the skin, her arm will be amputated.  

Madisyn shows her warrior spirit every day.  She wakes up in the morning, puts a smile on her face, even if she hasn’t slept the night before and proceeds about her day.  She has adapted in so many ways, she uses her feet and arms in place of using her left arm, she has little to no use of it at this point.  She takes Tylenol pretty much around the clock and an opioid when she needs it.  The long term side effects from Chemo will  forever be a part of her life but she faces each challenge with a smile of gratitude for still being able to live every day when so many of the friends she met along the way weren’t so lucky.

Madisyn has 2 brothers: a 10 year old and a 2 year old.  Her diagnosis has affected every part of our lives.  Her father left within weeks of us returning to Kodiak and she has not seen him since.  We don’t know what each day will hold, so we take it day by day, and spend as much time together as a family that we can.  That has been a wonderful lesson for us to learn- nothing matters but spending time with your loved ones.  It doesn’t matter if the laundry is folded and the house in clean- you never know what tomorrow might bring.

If there was one thing that I could tell other families it would be this.  YOU are the advocate for your child- just because there is a certain protocol in place to treat your diagnosis-it may not be the best option for your child.  YOU are the only one who can question that, you know your child better than anyone else, don’t let someone else choose what is best for your child.  As a mother you are supposed to take your child’s pain away, but I can’t, I have to stand by and watch and I struggle with that daily.  We cry together at night when the pain in her bones is the worst.  We talk and I rub her legs and arms and hope the pain medication works.  Then I go off to work and face the world with a smile, it doesn’t matter if I haven’t slept in days or can’t keep my eyes open.  This s the reality that we live in. A cold is not just a cold, a fever is not just a fever, and in our case an ache or pain is not just an ache or pain. Never go to bed without saying I love you. Never forget to hug your children. Never forget to kiss them and hold them tight. Never forget to let them know they are loved and let them love you.

Isabella, 8 (Anchorage, AK) | Cancer

ISABELLA, 8 (Anchorage, AK) | Acute Lymphoblastic Leukemia

written by her mother, Erika 

photographed by Autumn Clarkson Photography 

In the fall of 2013, Isabella was a new Kindergarten student at Rilke Schule. She loved going to school every day, but she kept getting sick and having to stay home. Her fevers first came every few weeks and then progressed to every few days. Multiple trips to the hospital gave no answers. I desperately wanted to know what was wrong and figure out how I could help my daughter.

Test after test could not identify what was causing Isabella’s fevers. All of the blood tests came back clean. I finally elected to have a bone marrow test, which gave us an answer we desperately needed, but every parent dreads hearing. Isabella was diagnosed with pre-B cell acute lymphoblastic leukemia on February 21, 2014 and would need to begin treatment right away.

Because English is not my first language, I didn’t understand what this diagnosis meant at first. I didn’t know it was cancer. I thought my daughter was going to die. When they explained it was cancer, I was heartbroken. How do you tell your six-year-old that she has cancer?

The doctors told me that we needed to tell her, because she was going to be the one going through all of the procedures and treatments. And she would need to know why it was happening, and why they were doing these things to her. I remember walking into her room to speak with her about it. She was lying in her bed, curled up like a baby. She asked me “am I going to die, mommy?”

I told her that she wouldn’t die, but that she had a hard road of treatment ahead of her. And that she would probably lose her hair.

Isabella is a little princess, and in our culture, long hair is considered very beautiful. She had always had very long hair, and I would only cut her bangs. She was “beautiful princess Isabella, with the long hair and bangs”…everybody knew her that way. All of us girls had long hair...myself, and her two little sisters. So the idea of losing her hair was very heartbreaking.

We initially planned to travel to Portland for Isabella’s treatment, thinking the best care would be found at a larger hospital outside. But after much deliberation, we decided to have Isabella’s treatment at Providence’s Cancer Center in Anchorage. We knew that the love and support Isabella would receive from her family was a crucial part of her treatment and she just couldn’t get that anywhere outside of Alaska. Medicine does a lot, but family and friends are a sort of medicine too.

Isabella started her treatment right away. She had a long journey ahead of her as chemotherapy for children with ALL is a 2.5-year process. A team of doctors, nurses, and child life specialists all worked together to ensure Isabella was given the best family-centered care possible. We were very happy that we chose to stay in Alaska for her treatment.

It was so hard to watch her go through it all. The chemo made her so tired and weak. There were a few times that it was so hard on her little body, she told me that she would rather die than to continue going through the treatment. But she was so strong. She went to school throughout it all. We had a plan in place with her teachers – if she got too tired or worn out, I would just come pick her up. But she always wanted to give 150% percent. She would sometimes just take a little nap in a chair and then be ready to get back to work…she rarely wanted to have me bring her home to rest.

She did lose her hair, and it was very hard for her. All of her friends and family chipped in to try to buy her the perfect wig. Finding a specific style of wig for a child can get very expensive – it can be thousands of dollars. But she was a princess, and we wanted her to have her beautiful hair back. We did finally get a wig for her, but she can’t wear it all the time because her scalp is so sensitive. She loves the way it makes her feel to see herself with hair again, but most of the time she wears a soft beanie. Her hair is starting to grow back in patches, but it is growing!

Isabella responded to treatment very well, and went into remission during the second month of chemotherapy. Her bone marrow results in May of 2016 showed that she was cancer-free. Her IV port was removed in June. She stills visits the Cancer Center once a month to receive chemotherapy infusions that are very hard on her body, but her spirits are very high. It’s amazing how children can bounce back. She would be crying and in pain one minute, then an hour or two later would be up and smiling.

Isabella has told me that she is so happy that this happened to her and not to her little sisters. Her love for them and her strength amaze me. She truly is a little warrior. Going through all of this with her has been so hard for our family, but I don’t think I would change anything. You never want your child to be sick…I wouldn’t ever wish for that. But through watching her fight and overcome everything she has at such a young age, it has showed me the things that are truly important in life. I slow down and appreciate the blessings in my life now…the things that really matter. God was definitely by our side; divine beings were holding us up.

Bradley, 2 (Anchorage, AK) | Cancer

BRADLEY, 2 (Anchorage, AK) | Acute Lymphoblastic Leukemia

written by his mother, Helena 

Photographed by Danielle Wakefield (The Birth Photographer)

Bradley was born a healthy little guy. His first 15 months were full of milestones met, laughter and joy. 

Last August, we noticed that Bradley started becoming crankier, running fevers here and there and was just more needy than usual. We were thinking,  "Okay, he is just teething, and he is a toddler."

As time went by, the fevers, diaper rashes, random rashes and drooling were becoming more and more frequent. By mid-October, he was running a fever almost constantly. After leaving a few doctor's appointments and being told it was likely teething-related, we didn't think twice about it.

On a Thursday, while playing in the living room, he stepped on a floor tack. By Friday, he started to crawl again...which was odd, because he had been walking for a while. By Sunday evening, he wouldn’t walk, eat or drink anything. 

We decided that we would call in the morning and make an appointment. Maybe it was an ear infection. Monday morning came early, and we were sitting at the table discussing making this appointment when we noticed these little red dots (almost like pen marks- later to be determined as petechia) on the side of Bradley’s ear (this was one of the biggest signals to the doctor that indeed something was wrong.). The Doctor ordered blood work and cultures, all the of the regular tests came back normal, which was a relief. Still, waiting on the culture which would take a couple of days.

Bradley's pediatrician called us on Wednesday morning and asked how he was doing. We let her know that nothing had really improved. She ordered another more complex blood test.

At 3:12pm on Wednesday afternoon, Bradley and I were taking a nap. Daddy was mowing the lawn. Big brother was watching TV. A normal afternoon. The phone rang and changed our life forever. It was the pediatrician. She asked me “Helena, is there someone at the house with you right now? “ I told her “Yes, Toby was mowing the lawn in the back yard.”

My heart sank.

She asked me to sit down, she told me that Bradley’s test came back and that we needed to go to the hospital right away. The test came back resulting with common traits of Leukemia. They were going to have to admit him and do more tests to confirm the diagnosis. 

Cancer.

No parent should have to hear those words regarding their child.

I couldn’t finish the phone call. I handed the phone to Toby, and could barely stand on my own two feet. The Doctor was crying also. Toby and I held onto each other for a short time while we cried. We knew we had to get Bradley to the hospital, so the phone calls began to find someone to watch Big Brother and the dog.

We were admitted by 5pm to Room 322. That was our stomping ground, and has been every time we are admitted.

Thursday morning we did the bone marrow test, and it was sent to Seattle.

Friday October 23, 2015 at 1:23pm, Bradley and I were taking a nap in the hospital room when Toby and the doctor woke me up. She sat down and told us that the test came back 99.9% positive for Acute Lymphoblastic Leukemia (ALL). I remember this moment very well because I was still lying on the couch with Bradley on my chest. I kissed his head and looked out the window at the blue skies. 

How could there be beautiful blue skies when we just received such horrible news?

Anxiety. Frustration. FEAR. Sadness. Anger. Shock. Disbelief. Why my child? (Not that any child ever should have this ugly battle.) What did I do wrong? All the emotions and questions you could possibly think of ran through my head.

They say that in the first 3 days after your child is admitted for childhood cancer, you will meet 65 people. I think we met more than 70! Nurses, Doctors, Dieticians, Physical Therapists, Child Life, Heart Specialists, Respiratory Specialists, Surgeons, Anesthesiologists. The list goes on and on.

The first month was a whirlwind of learning about ALL.Treatment, chemo, the side effects, and asking the many questions we had. His Pediatrician said to us on day 2 that we would become uncertified RN’s by the time this is over. We laughed then but now realize what he was saying. He should have also said pharmacist.

Bradley has had some complications along the way, including 2 cases of CDIFF, failure to thrive (a feeding tube was placed for nutritional markers), rare side effects from a few of the medications, and neuropathy pain in his lower extremities. 

We have had to reteach him how to crawl, walk, stand, sit and speak multiple times after he fell sick and would shut down. He's had setbacks, but he always pushed through and tried his hardest to regain strength.

There are 6 phases to treating ALL. All of them have their downfalls, and none of them are easy. Being able to check the box complete next to the phase and move onto the next is a great achievement.  I love the statement “He passed labs!!! “ Ask any cancer parent; it will bring a smile to their face!

During our journey we have had to adjust to the “New Normal.” Clean, clean, clean; no public outings if his numbers are running low (we haven’t eaten out as a family since diagnosis).  We have to turn visitors away if they have been sick within the last 2 weeks or showing signs of possible illness. We try to make life at home as normal as possible. Big Brother has been involved every step of the way playing, supporting and being a rock for Bradley. He amazes me daily with his love and compassion for his brother.

Our nurses, doctors and therapists have become a family we never thought we would need. They have been so knowledgeable, thoughtful, kind and compassionate. They have made our journey as easy as possible. I thank all of them all the time!

We are now in the maintenance phase. A light at the end of the tunnel. We still have a long road ahead of us as January 18, 2019 is the last chemo treatment he will need if all goes as planned.

On the first day of treatment, Toby and I decided that we needed to stay positive not only for our well-being, but because it would also make Bradley’s treatment a little easier on him. Even if we are having a rough day, a simple smile from Bradley would make it brighter. We have grown closer as a family to get us through this journey, and we have a fabulous support network of family and friends.

We constantly remind ourselves that Bradley is STRONG and a FIGHTER. He will kick Cancer’s butt. Cancer has changed our lives, but we won’t let it get us down. Positivity, faith and love have been our biggest steps forward.

We have become friends with other cancer kiddos and parents, which has been nice as they understand truly what we are going through. Their kids amaze me as well. If your child is newly diagnosed remember this you are not alone, reach out, it is very helpful.

As I leave every message about Bradley, I will end with this;

Hug your loved ones daily...you never know what may happen.

Meghan, 5 (Fairbanks, AK) | Cancer

MEGHAN, 5 (Fairbanks, AK) | Acute Lymphoblastic Leukemia

written by her mother, Holly

photographed by Samantha Ruf Photography  

Meghan got sick November 10, 2015 and we took her to the doctor where we were told it was the flu. I took her back the next day when she didn’t improve, and we were told to go to the emergency room. They did blood tests and told us within 45 minutes that we were being medvaced to Anchorage.

When we got to Anchorage, were we were told Meghan had cancer. They were unsure on which kind. The next day, they did a bone marrow test. On November 13 (her dad’s birthday), we were told it was Acute Lymphoblastic Leukemia (ALL). From there we have started her journey.

Meghan is almost a year into chemotherapy and is making great progress. There have been a lot of ups and downs but she has been so courageous through everything! I love Meghan’s strength! When she gets sick from chemo or doesn't feel good, she still just goes on with life like normal. I love that she can talk to us about what she is feeling, and her fears. 

It’s been hard for me, as her mother, to watch my child be in pain. Hearing her talk about having cancer is difficult, too. I want other families who are facing this diagnosis to know that the fear never goes away. I am always afraid of her getting sick again. This sickness will change your life forever. Not just while in treatment, but even after. 

The biggest change for our family is that now we have to pay extra attention to hand washing, and to where she goes in public. We have to make sure to protect her from germs and dirt to prevent sickness. 

Meghan comes to Anchorage once a month for chemotherapy. She goes to school and plays with other kids, but we have to watch who she is around because her immune system is weaker than a normal child's. Sometimes her leg pain gets her down (kids on chemo can get let pain, and in Meghan, we see a lot of that in school). 

We are all positive and hopeful through her phase of treatment. Now we have been through the worst of things together, so it's like nothing can knock us down. 

We will share links to local resources for families and children battling cancer here later today.