Hayden's Fight with Retinoblastoma
$45,874 of $50,000 goal
On July 4th, 2015, their daughter, Hayden (age 3 ) was diagnosed with Retinoblastoma, a rare form of eye cancer that primarily affects young children. While there have been other cases where doctors were able to save the child's eye, it was not the case for Hayden. She underwent surgery just days after the diagnosis to remove her right eye in order to save her life. Upon further tests, it was also confirmed that the cancer had spread to the optic nerve (which attaches to the brain). What is next for Hayden is a series of intense chemotherapy & radiation treatments. The plan right now is for her to undergo 4 rounds of chemo. Each round lasts 3-4 weeks. It will be 12 weeks if she does well and has no adverse reactions to the treatment, otherwise, the treatments will be spread out over a longer time period.
The coming days, weeks and months will be a very difficult time for them. We have set the goal of $50,000 to help cover medical expenses including deductibles, medications and ultimately prosthetics (which we recently learned are not covered by their insurance). These funds will also help the family with various other expenses as they have left work to focus on caring for Hayden. Every dollar helps at this point, especially as we learn more about what is needed for them down the road. We can't begin to imagine the difficult days ahead and hope that our community of friends and family will lend a hand, send positive thoughts and help us reach our goal.
Hayden is a fighter and we know she will beat this. Please keep her in your thoughts and prayers!
Retinoblastoma is an eye cancer that begins in the retina — the sensitive lining on the inside of your eye. According to cancer.org , there was an estimated 280 cases detected in the US in 2014. Retinoblastoma usually occurs in children under age 5 and accounts for 6% of cancers in this age group. Symptoms of retinoblastoma may include “white pupil,” in which the pupil of the eye appears white instead of red when light shines into it, eye pain or redness, and vision problems. To learn more about this disease, please visit Children's Hospital LA, WillsEye Hospital, or view this video.
1 year ago today , 12/22, Hayden received her final radiation treatment and had awoken from sedation groggy, weak and frail. We took this video of her, she could barely muster up enough strength to bang the cymbal, looking back I think she was extremely courageous for even attempting it….
At this time last year, it was just a few days short of 6 months since her diagnosis and almost everyday since then was spent at the hospital. In the days leading up to the diagnosis, Hayden went to school, played soccer, loved gymnastics and was learning how to swim. In the days that followed Hayden would have an eye removed, endure 3 surgeries, 25 days of radiation, 4 cycles of chemotherapy, 27 blood transfusions, she’d be sedated at least 40 times, she’d become addicted to morphine which caused her to have hypertension, she’d spend countless nights vomiting bile, her liver and heart were failing and she was poked and prodded too many times for me to even count… it was nightmare for all of us… BUT … after all of that … Hayden would fight back!!!!
After missing 9-months of school, she returned to her friends and the wonderful teachers at AZ last April. To most, it was as if she hadn’t skipped a beat at all, she somehow flipped a switch and just started where she had left off…pretty remarkable, right???
In the months that followed her weight and strength would improve, some of her favorite daily fills were chicken nuggets, pizza, pasta, “Nina & Mia Smoothies” and of course every night she had to have a warm milk bottle. Nina & Mia smoothies are the cute name that she calls her favorite smoothies that her friends in Florida first gave her
She also began swimming again, she started gymnastic classes and she now attends tap and ballet classes. In fact just this past weekend she had her very first dance recital, which also happened to be a fundraiser for the Andrew McDonough B+ Foundation! She’s experienced class trips, birthday parties and many play-dates with her friends and neighbors. It’s the simple things that she missed while she was sick that are probably the most enjoyable now. She loves listening to music some of her favorites are Taylor Swift, J-Lo and Katy Perry. And lastly, but likely most important to her, is that she loves watching movies, TV and her and her iPad are absolutely inseparable!
She went to Disney twice, once to celebrate the end of her treatments through the Make-a-Wish foundation and then again in October to celebrate her 5th birthday. Nothing gave us more joy than seeing her celebrate her birthday since she didn’t get to enjoy one last year.
Oh yeah, and one other thing, her hair is slowly growing back too!!!
With regards to her health, her doctors say that she is stable. She seems to be more susceptible than other children to common illnesses; she’s had a lot of colds and she also had pneumonia in August. She’s had a few big health scares over the past year but thankfully each time the test results have all come back normal. Her next round of eye testing will be in January and there will be a scan of her brain in February, those are the big ones.
With all of that said, I’d say that she is still a fairly normal child. She goes about her business like every other little girl her age and she certainly seems to enjoy life too!
On the other hand, Helen and I continue to struggle, there’s rarely a moment that we don’t worry about her. We try to remind ourselves how fortunate we are, we’ve witnessed other children with retinoblastoma not make it this far, which is heartbreaking. We also have an incredible group of friends, neighbors, family members, nurses and doctors that have supported us and have helped us navigate through this new and difficult world. In fact, we’d like to publicly recognize every single person if we could. We hope that we’ve contacted each of you individually but in case we have missed you please know how much we appreciate what you’ve done for us.
From the fundraisers, meal donations, gift cards, toys, phone calls, emails, text messages and most importantly coming to the hospital and to our home to be by our side!! THANK YOU for all that you’ve done and Happy Holidays!!!!
As always, we like to start off by thanking all of the people that have helped us get through the past 7-months which were the darkest days of our lives. There are too many people to thank individually through this medium but we still want to make sure that everyone knows how much we appreciate all that you’ve done.
You came to our home and the hospital to keep us company. You gave us meals, food and gift cards when we had no time to cook. You constantly called, texted and emailed letting us know you were there. You had benefits and fundraisers in Hayden’s honor and were extremely generous with your contributions. You choose to forego exchanging gifts with your families to give Hayden gifts instead...etc...
The list is endless so we cannot reiterate enough how much these acts of kindness have meant to us. Your support, your love, your thoughtfulness have given us the strength to forge ahead and our words cannot express our gratitude nor truly communicate how much these things have meant to us.
Now...you’re probably wondering what’s happened over the course of the past 3-months, which is when we last provided an update on Hayden’s progress so let's bring you up to date....
First, Hayden began radiation treatments in mid-November that required sedation 5 days a week. The evening prior to each treatment she would begin fasting at about 9 PM and couldn’t eat again until around 1PM the following day. At first it was very difficult but as the weeks progressed she became more accepting of the routine. Her stress and anxiety levels were also very high when we began radiation but thankfully the hospital staff worked to develop a strategy to eliminate those issues. As strange as it may sound, by the end of her treatments she actually looked forward going to the hospital and coming home afterwards.
The treatment itself would only last for about 15-minutes but the entire process was normally 3 to 4 hours due to the pre and post sedation procedures. As you can imagine, a radiation beam to the brain of a 4 year old is an invasive treatment with severe risks. We feel it’s best not to share those risks but we will say that thus far we have only observed mild side effects; it was communicated that it could be months or even years before some complications appear. The radiation treatments finally ended on Christmas week which meant we could start to recover after spending almost every day at the hospital for 6 consecutive months!
In the days that followed, Helen returned to work full-time at the beginning of January and Andrew became Hayden’s primary caretaker. The daily routine for Hayden consisted of playtime, exercise and educational activities. After only a few short weeks, we saw major improvements in her strength, well-being and intelligence. Also, we’d like to mention that many of Hayden’s other close relatives and significant friends continued to assist in her recovery. During this period, she always looked forward to spending time with her friends Bree & Jules and her Aunts Emily & Alice; these loving interactions truly helped with her rehabilitation.
As January progressed into February it became increasingly more difficult to keep Hayden occupied and happy since she longed to be with her peers at school. However, that was not an option since Hayden recently encountered 2 minor, but scary, setbacks that involved hospitals visits and more testing which brings us to today.....
Over the course of the past 2 weeks, Hayden has had an eye exam at Wills and an MRI at CHOP. Both exams were clean with no visible signs of tumors! So, what does that mean???
That means that Hayden can now have the surgery to remove the central line that’s attached to the main artery in her heart. Once the surgery is complete, she may return to school and start to resume her old life. (YES!)
Does that mean she’s cured???
Unfortunately there is no cure for cancer so Hayden will be closely monitored with exams and scans in the coming months and years. If she reaches 5 years post treatment where these tests find no evidence of cancer then the chances of it returning drops considerably. We will continue to hope and pray for that day.
With that said, we know that there is a long road ahead for the 3 of us. We constantly communicate with families that are on this same horrible path but some may not be in the position that we are in today. To those families, we want you to know that we think and pray for you regularly; and yes even Hayden prays for you too. As we hopefully reestablish our old lives, we intend to find ways to give back to these families and the hospitals that have helped us get to this point. To those of you reading this that are not thankfully on this path, please add these families to your thoughts and prayers.They need all the help they can get and are struggling dearly right now!
From the bottom of our hearts, thank you again for all of your love and support!
The Weiss Family
We apologize for not providing an update on Hayden’s progress sooner but the 4th cycle of chemotherapy was much more difficult than expected. Hayden began the cycle on October 6th and she was at the hospital for 30 consecutive days, which included her 4th birthday on October 15th. This period was extremely challenging physically and emotionally for the 3 of us and without the support of our family, friends and random strangers I’m not sure how we could have survived.
During the hospital stay, Hayden went 25 days without eating a meal, walking more than a few steps and experiencing the daily fill of happiness that’s needed for children her age. There were some moments of enjoyment like when the Horsham Athletic Club staff visited and a friend dressed as Elsa from Frozen. Hayden's Uncle Harry also visited from Hawaii and her BFF Ella spent an afternoon with her too. These visits were extremely therapeutic for her, in addition to the other regular visitors that spent countless hours at the hospital supporting us like the Willner, Gorson, Cohen, Marrow and Herz families.
From a medical standpoint, there were 2 major issues where her heart wasn’t functioning properly but thankfully those problems were corrected through medication before she had to be moved to the ICU. Every time there was a sign that her body was recovering it was followed closely by a depressing setback. The longer we remained at the hospital the deeper the psychological effects mutated her personality. The simplest exams such as taking her temperature caused major anxiety attacks to the point that she would sometimes cause herself to vomit. She would also act out violently and scream incoherently for hours at a time leaving us helpless and confused. The hospital finally provided us with a team of therapists but by the time that assistance arrived Hayden was uncooperative and non-responsive.
When Hayden’s body had seemingly recovered a few final sets of vital signs unexpectedly showed that she had very high blood pressure. Her medical team decided to test all of her major organs but there were no conclusive findings. They guessed the cause of the high blood pressure was due to morphine withdrawal but we thought stress also played a factor. The solution was a morphine wean over a 2 week period and a hypertension prescription which has since been completed.
Once she was finally released, her behavior began to improve immediately and so did her eating and strength. She only had a total of 4-days off before the start of radiation, which began on November 12th. The plan is for 25 treatments that require her to be sedated every Monday through Friday for 5 consecutive weeks. Each night and morning Hayden must fast until the treatment is complete which is normally early in the afternoon. (You can imagine what it’s like to get a 4 year old to fast every night and day)
The good news is that her last MRI showed no visible signs of a tumor and her last eye exam showed no tumors in her good eye. We will also continue to pray and hope for the best results over the course of the remaining treatments and in the months and years to follow.
Thank you again for the incredible support that you’ve given us over the past 4 months. Your phone calls, visits, messages and gifts have made an incredible difference in our lives. We know that all of this positive energy will bring a positive outcome!
Thank you again,
The Weiss Family
It's incredible how so much can change in such a short time. Less than 4 months ago, she was a happy little girl who was doing everything that little girls do, and today, she is fighting for her life.
I spoke to Helen this past week to catch up. I learned something new. I know that Retinoblastoma is rare, but Hayden's case is extremely rare. Unlike most other kids inflicted with this condition that starts with a "glow" in the eye, there were no warning signs for her. In fact, the doctor said her condition was so rare that the she had only seen one other case in the last five years similar to Hayden's.
I'm amazed by Hayden's spirit and her strength. She is a fighter and we are all her cheerleaders. Your prayers, calls, emails and generosity have really helped Hayden's family. The family sends their thanks to the many friends, families and strangers that are helping them through this very difficult time.
Please feel free to leave a birthday wish for Hayden in the comments section.
Hayden and family, You are in our prayers each and every day. I remember when Hayden was with Danny in twos 4 with Mr. Josh. Danny and I and the rest of my family are pulling for you. Hayden we wish you the best of luck in your chemotherapy and we want you to get better. Danny says, " please get better and feel better ". Love, The Morse Family
This is so encouraging. Thanks for sharing this blessing right before the holidays. I pray for her continued strengthening.
My thoughts and prayers for Hayden and family. I pray she stays strong to fight this terrible disease. Get better soon. God bless.
Happy birthday Hayden! You are a brave, beautiful girl!
"Happy birthday and I hope you feel better" from Adalaide Diaz
Happy Birthday Beautiful GIrl. You are one strong cookie. Prayers and love are being said today and everyday. Uncle Paul's sister Mary:) ♥ ♥ ♥
Happy birthday and many many many many many more beautiful!
Sending you special wishes on your special day. Thinking of you!
Happy Birthday sweet Hayden ♥
Andrew, Helen, & dear sweet Hayden, my continued thoughts and prayers are with you each and everyday. Be strong & Fight hard...I know you will beat this! ! Hugs & Kisses! ❤️
Tony and marie we are Paul's aunt and uncle iam praying to st. Therese she always answer me my prayers are with you .