The money raised will go towards an APP that will help Kiwi kids with cancer and their families stay organised.
Auckland
I want to raise enough money for an APP to help Kiwi kids with cancer and their families organise their treatment journey. My son was diagnosed with Leukemia last year and I wished that there was an APP to help me get through all of this and make my life easier.
You'd be surprised how much information is given when a child is first diagnosed, I'm not even talking about the enormous blue folder from Child Cancer Foundation that they hand you in the beginning. I'm talking about information such as the phone numbers, what medicine to take, when to take it, the dosage, at what temperature are you supposed to be alarmed and call the ward, the blood results, what the numbers mean, when does your child need a blood transfusion, when is your child neutropenic, when is your child not neutropenic, when your child needs to be starved for their lumbar puncture the next day, when to stop giving them water, when to stop feeding them milk and the list goes on and on... Imagine getting one of those things wrong or doing all this when English is a foreign language.
I appreciate everything that the doctors, nurses, social workers from the hospital and Child Cancer Foundation have done for us. However, I do wish that things were more suited for this day and age. The flying bits of appointment papers, blood forms and prescriptions are the least of the worries. The thing I found most frustrating was looking at the roadmaps that they print out for the parents to read or go through. Let's just say it takes a while to understand...
For me, this is personal. I have reached out and asked for things to be changed but I guess the best way is to take matters into my own hands. Since my husband and I came from an APP developing background, we thought that instead of sitting here waiting for others to make changes, we'd rather start making the changes ourselves. Believe me, if it were up to me, there are a million things that I want to be done differently. My hope is that if we start with this APP, then maybe we can move on to bigger changes such as getting the hospital and Child Cancer Foundation involved. I really want to give back to everyone that has helped my family get through this. I understand how hard it is, and how much harder it must be for families in worse situations or a more severe diagnosis. I just want to make the whole journey easier so that everyone can just spend their time on the things that matter rather having to deal with problems that can be easily solved with an APP.
The plan
The plan is to focus on more generic things such as numbers to call, clinic appointments, medicine alerts and break down the initial blue book with all the information so that it's introduced to the user accordingly. If this goes well, we will start talking to Child Cancer Foundation, the hospital and Ronald McDonald house to include more features to help parents plan their journey (things such as roadmaps and so on).
Fund Target
We will kick start the app if the fund reaches 50,000NZD and if it goes over, the money will be used towards additional features. The initial features will at least include the following...
Patient Profile
Numbers to call (which hospital/department to call if you are outside of Auckland)
Growth Track
Alerts
When to call
Temperature
Medicine
Neutropenia
Blood Test (Transfusion)
Clinic Appointment Notifications
Treatment Calendar
The Blue Book
Patient Support Information
Parent / Caregiver Community
BEADS!!!!!
My son was diagnosed with Leukemia last year. It was the worst day of our lives yet we were introduced to an enormous amount of information from the ambulance membership to treatment schedules. I know how overwhelming everything can get, this is why I am dedicating to this project. I want to help make this journey easier for the children and their parents so that they can focus on each other and the things that matter.
The funds will be used to develop an APP that will help Kiwi kids with cancer and their families organise their lives. The APP will be developed in phases and if we cannot reach the goal, the money will go towards helping 27A/B Child Cancer Foundation.
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