Latest Story

Bianca has Leukaemia

Posted by Norwin on Friday, 15th May, 2009

Hi everyone,

Bianca White lives in New Zealand with her Mom and Dad, Terence and Lea, and her sister Caitlyn. She would like you to keep her and her Mommy and Daddy and sister in your thoughts, good wishes and prayers. This is Bianca’s situation:

Bianca was diagnosed with Acute Lymphoblastic Leukemia (A.L.L.) at the beginning of June 2007, only two weeks before turning 4 years old. She will continue to receive treatment until September 2009 and then it will become a “wait-and-see” situation for at least the next 4 – 5 years while she’s off her treatment.

During the first year off treatment Bianca will face the highest risk of relapse and only once she reaches 4 or 5 years off treatment will she be referred to as being “cured”, but only because the risk of relapse will be significantly less.

Her story over the past 2 years is as follows:

  • 113 days in hospital as inpatient due to various infections (one of these stays was for 34 days, in isolation and on oxygen);
  • More than 30 blood product transfusions and counting (currently getting a blood product transfusion, IVIG, every single month)
  • Shingles in her face
  • Kidney Stones – A severe reaction to one of the chemo drugs. This means that she cannot get this drug ever again and the next time she needed this drug she had to get a different type consisting of 6 injections into her legs, one every second day.
  • A broncospasm that required immediate medical attention

As at January 2009 the status is as follows (she is little behind in counting her beads of courage – she strings a bead for every single procedure, treatment or hospital admission):

Figure 1 Every single bead represents a procedure, treatment or admission that Bianca underwent 

  • 446 days of chemotherapy (some intravenous and some orally)
  • 112 finger pricks, port accesses, injections
  • 113 days in hospital of which 88 days were in isolation / being neutropenic
  • 72 different tests including Echo, X-Rays, CT Scan and many others
  • 1 surgery to insert a port underneath her skin
  • 3 hair losses (twice complete and once thinning significantly)
  • 4 bone marrow aspirates
  • 16 lumbar punctures with chemo injected into her spine
  • 15 dressing changes
  • 33 clinic visits
  • 39 blood product transfusions
  • 4 NG tubes inserted through her nose, down her throat and into her tummy to help with feeding
  • 19 days of IV antibiotics (probably more, but her parents lost count at some point, so they simply guessed this)
  • 32 unusual things such as being on oxygen, and so on.

To date Bianca has been on approximately 121 days of steroids; these drugs cause mood swings, increased appetite, cravings, sadness, depression, tiredness, can affect the way kids sleep and can even cause temper tantrums. At the age of 4 she learned to swallow tablets!

Despite all of this, Bianca has always coped so well. She lives for the moment and her parents us to enjoy the little things in life, to slow down. She is their hero and their inspiration! They don’t know what the future holds, but they are hope for the best, but only time will tell if the treatment was successful, and whether there were any long term effects such as learning difficulties, heart problems or even infertility. But Lea and Terence have faith that whatever the future holds they will be ready and strong enough to walk that road. Their motto is that they can’t choose what happens in life, but they can choose how to handle it!

For more about Bianca visit her blog at http://whitesinnz.blogspot.com. Bianca’s story is also available to view on YouTube by clicking here.

Thank you,

Bianca, Lea and Terence White

Figure 2 Having fun

Surgery Completed

Posted by Norwin on Tuesday, 12th May, 2009

Hi all,

Just a quick note to all the kidzhelp.com fans that Jarrod’s surgery this morning was a resounding success. He’s recovering well and will be discharged this evening. Read all about the procedure on his blog at www.planetlederer.com.

Thank you to all of you for your wonderful thoughts, wishes and prayers that carried Jarrod through his ordeal this morning. Please don’t forget to forward the details of the kidzhelp webpage to any parents out there that need help, or anyone that would like to support kids in need.

Hugs,

Jarrod’s Grateful Dad

Off To Surgery

Posted by Norwin on Monday, 11th May, 2009

Hi all,

Who would have thought that, three weeks ago, when Dad launched kidzhelp.com that I would be the first kid in need of help from the wonderful support base out there.

Tomorrow I’m undergoing the ninth procedure of my short little life, averaging a procedure per month. For those of you that don’t already know, I have a micro-catheter that runs inside my veins from my head to my groin. It was left there intentionally after my procedures in September 2008 after the coiling was done in my head, as well as the Amplatzer PFA Occluder was inserted via a craniotomy. More details of tomorrow’s procedure can be found on my personal blog at www.planetlederer.com.

So please keep me in your thoughts and prayers tomorrow morning during my surgery. Send me lots of positive wishes and angels and guardian angels to look over me and my medical team. By the time most of you read this blog I will already be in the theatre, so the timing will be perfect.

Lots of love,

Jarrod

Figure 1 Jarrod – scheduled to undergo another procedure tomorrow

 


Piqued Interest in kidzhelp.com

Posted by Norwin on Wednesday, 6th May, 2009

Dear kidzhelp readers and subscribers,

Its been two weeks since my kidzhelp blog was launched, and I’m pleased to report that the interest in the blog has piqued many people’s attention, even though I’ve not had to call on you to assist with supporting or providing help, wishes, prayers and positive thoughts to any children in need.

I’d like to use this opportunity then to request that you forward to as many people the link to the kidzhelp blog, or forward to them this email. Should you be visiting any hospitals, schools or community centres in the near future, you may want to download the kidzhelp pamphlet, print it out and post it on their bulletin board.

If you’re not yet au fait with the concept of the kidzhelp blog, it’s basically twofold:

  1. It provides a platform for parents of children that have medical complications of any kind to have access to a global support group simply by listing their child on the blog, either by completing the online form, or by sending my Dad an email with the relevant details. Here you can play a role by suggesting to parents or friends of parents to list their child in need of help and support.

     

  2. The second part of the concept is where you, my valued readers and fans, play an important role. As you recall I was born diagnosed with major medical complications after my birth which led to my having to undergo 8 medical procedures to date, I have suffered four heart failures, my lungs collapsed, and I endured several other medical difficulties during the first few months of my life. Today, 10 months later, I’m home and I’ve beaten all the odds. Although I know that medical advances had much to do with my recovery, I also firmly believe that the thousands of people that prayed for me, supported me with positive thoughts and wishes, and sent me goodwill that I triumphed. At the height of my complications, when I almost didn’t make it through some of my procedures, I had in excess of 10 000 people viewing my blog each month. I truly believe that it is this support group that carried me through my darkest hours, and now I’m calling on my support group to offer that benefit to other parent’s children as well.

Please don’t forget that my Dad is not doing this for personal or financial gain, but simply to try and ease other parent’s anguish if their child suffers from medical complications and provide them with a global support group that is not restricted to any denomination, culture or ethic group.

If your preference is to not participate in kidzhelp, then please use the links in the email to unsubscribe from the mailing list; I nor my Dad will not feel offended.

For more details, visit the first kidzhelp.com blog posting, by clicking here.

In closing, please don’t forget to visit my blog from time-to-time as well, which is what originally inspired kidzhelp.

Lots of love,

Baby Jarrod

Figure 1 Baby Jarrod, 10 months old and going strong

Special Edition – kidzhelp.com is launched

Posted by Norwin on Wednesday, 22nd April, 2009

Hi all,

This is a SPECIAL EDITION blog to all my valued fans that regularly follow my blog, as well as a few additional people that I’ve selected to be on this distribution list. Those of you new to my blog, please read on, as I don’t consider this to be spam!

My regular readers will know that in June 2008 I was born with an AVM in my head, which stands for arteriovenous malformation. It’s an extremely rare condition, and the enormous size of my AVM meant that my prognosis was close to zero. During my convalescence, I had four severe heart failures, my lungs collapsed, my liver starting giving trouble because of all the meds I was on, and a whole bunch of other complications. During this time I underwent 8 procedures, 5 of which were in my head, including a craniotomy. However, now ten months later, I’m in good health and at home with my loving parents and I’m ready to live a long, industrious and meaningful life.

Figure 1 In September 2008 I was very close to the edge

The journey to my current good health was not an easy one, and fortunately thanks to private health care and the major advances in medical technology I pulled through, albeit sometimes by the skin of my chinny-chin-chin! There were a number of times I felt my self heading down a long tunnel with a bright white light at the end, only to be dragged back at the last minute.

Another factor that led to my miraculous recovery was the love and support that I obtained from near and far, from family, friends and many many strangers. My Daddy spent hours and hours creating my own personal blog keeping the world updated on my progress, through the saddest hours and through the happiest moments.

It was through this blog that I started receiving as many as 10 000 hits a months at the height of my health difficulties, and I, as well as those close to me, believe that through the awesome power of thousands of people thinking of me, wishing me good fortunate, praying for me, and holding me dear in their thoughts, that I actually survived. The medical practitioners, without a doubt, had much to do with the success of my numerous brain procedures, but I think they had the help of my thousands of followers who kept me alive and going.

I now appeal to you to keep up this good work for other kids who find themselves in a similar predicament. I feel that I have been advantageously blessed by having a Daddy that knew how to put together a blog, load it on the internet, create a mailing list, and write so wonderfully about my trials and tribulations. I would now like to share that blessing with other kids.

My intention therefore is that I’ve asked my Daddy very nicely to create a second blog, not for me, but for other kids in difficult medical circumstances. He has obliged, and bought the domain www.kidzhelp.com. On this site he has created a blog, and a mailing list.

The contents of the kidzhelp blog will be dedicated to kids all over the world, of all walks of life, of any colour or creed, for their stories to be published, and hopefully to benefit, as I did, from all the wonderful thoughts, prayers, wishes and good fortunate that all of you bestowed on me.

The kidzhelp blog is not based on any particular faith or denomination, but only on the belief that if enough people are willing on a little person to survive, then that little person’s chance of survival is increased in multitudes.

To achieve this I need to call on your support. If you know or hear of any kids in neo-natal ICU, regardless of whether they are premature or seriously ill, or in a paediatric ward, ask their parents to send me an email with the following information:

  • The child’s name
  • The names of the child’s parents (surnames are not needed)
  • A brief description of the ailment afflicting the child
  • Which hospital and city the child is in
  • A photograph of the child – very important

 

Send the info to norwin@kidzhelp.com.

One of the reasons why a photograph of the child is so important is that from my experience people can better relate to praying and sending good wishes to a child if they have an image of that child in their minds. I discovered this when I got feedback from all over the world, from Russia, New Zealand, the UK, USA, etc. that it was so nice that Daddy posted pictures of me on my blog, sometimes in my worst condition, as this helped people pray for me and send me positive thoughts as they had an image of me in their minds.

You might all be wondering why is my Daddy doing this? What’s in it for him? Well, in all honesty, he’s just doing it for me, because he loves me so very much, and because I asked him to.

With your permission I’m going to add you to my kidzhelp mailing list; if you do not want to be part of the experience, please unsubscribe after the first kidzhelp newsletter has been sent out, which will be done shortly.

I also need you to send this email to as many people as you can think of that may want to participate in helping a child somewhere in the world survive.

Anyone can subscribe by clicking here.

Once again thank you for your help and support, and keep a look out for future kidzhelp updates. You may be wondering what will happen to my blog? Well, it will continue in tandem with the kidzhelp blog, so remember to visit both regularly.

Love Jarrod

Figure 2 Now, 9 months old I’m on the road to recovery

Figure 3 Happiness

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