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Posts Tagged ‘retinoblastoma fundraiser’

“But, why would you need a fundraiser? You have insurance, right?”

I can’t tell you how many times I heard people say that to me when Joli was diagnosed with cancer. I heard it so often that I actually became very embarrassed when people talked about the fundraiser or asked me to bring it up. The tone of the comment made me feel as if I was “taking” something from other people. And yet, without the nearly $18,000 that was raised for my family when Joli was diagnosed, I am quite sure we would not have come out of this experience as strong as we did.

When Joli was in jolihospitalthe hospital for her first round of chemotherapy — just 3 weeks after her right eye was removed — I received a call from my good friend, Deirdre. Honestly, Deirdre was the last person I expected to hear from because she had just delivered twin babies and had a 2 year old at home! My own 2-year old was strapped to a bed with IV tubes of poison (aka “chemotherapy”) and a red, hollow hole in her face (aka “her enucleation”). Joli had just finished throwing up due to the chemotherapy. And, I had just finished throwing up due to first trimester nausea with Baby #2.

Deirdre told me that she had a plan. She had a plan to raise a few hundred dollars for us to help us during this difficult time. She wanted to help contribute to gas money, parking, and meals at the hospital while Joli was sick. I recall telling her “No, Deirdre, that’s weird. I don’t want people giving us their money.” She replied, “Liza, we feel so helpless just watching you and your family go through this. Your friends need to feel useful. Your friends need to feel helpful. Please, let us do this. If not for you, please let us do this for us.” If you know Deirdre, or you have friends like Deirdre, you know they don’t give up! So, I agreed – still somewhat uncomfortable with the idea of asking for money from people – but knew that there was no stopping Deirdre!

Deirdre batted around ideas for selling t-shirts or raffle tickets for small prizes. She would coordinate all of this, and asked that my only task would be to give her a list of people — the “Christmas Card List” she called it.

After we were discharged from the hospital that round, I went home and emailed my Christmas Card List to Deirdre. And, again, with the strength of every single Superhero that I know, Deirdre got started. Did I mention she had a 2-year old and baby twins???

After that, I really just focused on taking care of Joli. After a week or so,  we began to get checks in the mail from friends. Those checks and notes of kindness were so touching and well appreciated. Then, I began to get checks and notes from strangers — friends of friends of friends. That was mind-blowing! During this time of “I can’t believe this is happening to us! This is so unfair!” mentality, I was reminded each day of the good that happens in our world.

In addition to checks and notes, I began to get copies of articles and emails that people wrote to draw attention to our fundraiser. My friends and their friends worked their media-magic and reached out to my old college and every single job I used to hold. Deirdre printed our raffle tickets, mailed them out, got people to sell raffle tickets, and solicited prizes. Did I say “prizes”? I actually meant, “ridiculously amazing electronics, original artwork, and services that I could only dream of having!” Perfectly timed for the Holiday season, I was actually pretty jealous of the prizes folks were winning!

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Deirdre hoped to raise a few hundred dollars. Within a few months, Deirdre —  and her large army of friends and strangers — raised $18,000.

So, why was that money even important? Did it stop Joli from having to go through chemo? No. Did it bring her eye back? Nope. Did we take it and run?? Certainly not!

When a family is diagnosed with cancer, there are so many expenses that are incurred — yes, even when there is health insurance. Here is a quick run down of how we used that money:

  • Co-payments for every single doctor, every single medication — this was probably one of the single most expensive things during her year of treatment
  • Bi-monthly exams under anesthesia, MRI’s, and major medical procedures
  • Co-payments for her prosthetic eye
  • Glasses – 2 pairs – which cost more than I even care to post…. rip off, but a necessity!
  • Parking for 4 days at the hospital every month for a year (for just 1 car) and then parking when Jorge would come and visit
  • Gas for all the trips to the hospital, clinic, doctors appointments
  • Meals while in the hospital (only the patient gets to eat the hospital food — we had to either pack our food or buy from the cafeteria every meal)
  • Medical supplies — She had her port-a-cath accessed more than 100 times and her Neupogen injections 14x a month. That’s a whole lot of band aids, gauze, and alcohol pads.
  • Nutrition –– I admit, we used to be a fast food family. But, with her post-chemo nausea, Joli could only tolerate liquid, and we had to purchase Pediasure drinks for nearly 2 weeks after chemotherapy. Have you seen those things? They are ridiculously expensive…. but, we had to do it for her nutritional purposes.
  • Lost wages — I was fortunate to find a new job when Joli was diagnosed, but that came with a nearly $8,000 salary decrease. When I realized this, I brought my laptop to the hospital and began looking online for part-time jobs that I could do on the weekends. I would need to make up this salary difference somehow. The money from the fundraiser meant that I did not have to work on the weekends. Instead, I could focus on taking care of my daughter.
  • My husband also had to adjust his work schedule. Unfortunately, he did have to work weekends in order to get enough time off to help out with doctor’s appointments. So, we didn’t see him much because he had to work overtime.
  • Help with the mortgage payment – We had just purchased a house 2 months before diagnosis, and our mortgage was based on my old salary. I am confident we would have completely lost our house had we not been given funds to help us make up the difference here.

The funds were also used to help pay for medical examinations for the baby that I was carrying. Because our genetic testing was inconclusive, we had to have the baby go through the same series of exams that Joli did for nearly 18 months. Again, gas, work time off, meals, hospital parking, etc…..

I made a point to write a THANK YOU note to every single person from whom we received some sort of donation. I did my best. If I missed you, please accept my apologies. The people who helped us during this time saved our lives. I mean that fully. It is so stressful to go through this experience, and the financial piece was a stressor that was removed so that we could focus on the health of our child.

If you see a request for a fundraiser — even if it’s for a few dollars — please donate. That family needs it more than you know. And, if you can only give $2.00, realize that $2.00 is almost a gallon of gas. That gallon of gas could pay for the trip to the hospital. Your donation – even the smallest one – makes a difference to a family caring for a person with an illness.

If you are coming across this site to support a family with Rb, please try and arrange a fundraiser for them.

To learn more about the fundraiser for Richard Matthew, please click here.

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