DATE OF BIRTH:  October 20th, 1998

 ILLNESS: Acute Lymphoblastic Leukaemia   

Thank You Message
 
Thank you so very much for this wonderful quilt. Rhys just loves it he is so proud of it. He took it to school for show and tell and told his class that it was made with, Love and Heart.  Please pass on my thanks to these amazing people who took their time to make this precious treasure.
 
Thank you once again for all your hard work and this amazing piece of artwork. He sleeps with it every night

Thanks Felicitie, Rhys and family

     BIOGRAPHY      

Rhys was born 2 weeks early and weighed in at 7lb 3oz he was pretty normal as a baby and toddler he had mild reflux and suffered from a condition called abdominal migraines, he had recurrent ear infections and was quite a pale child. He has an older sister and now has a baby sister.

April 2001 our family consisting of me my husband, Taneesha 5yrs at the time and Rhys 2.5yrs at the time. Jetted off to the UK to visit my Dad my step mum and my 1/2 brother who I met for the very first time as he is 9 months younger than Rhys. we had a great time we went to Wales, France and Spain and the Pyrennes mountains we had the most amazing time and were talking about planning our next baby when we got back. Well we arrived back in Adelaide on the 1st May 2001. Taneesha had a blood nose on the plane and Rhys vomitted all over me as we landed in Singapore. (thank god we changed planes). We arrived home and tried to sleep but Rhys was very restless and had a blood nose as well, and was saying his ears were sore. So the next morning the 2nd May 2001 I took Rhys and Neesh to the GP to get their ears checked. Neesh had an ear infection and Rhys was just lethargic and unwell. I pointed out that Rhys had some bruising on his ribs that looked like fingerprints from being picked up.

The Gp said, lets order a blood test and see what it says, she said it is most likely just a cold and change of weather conditions. She told me the test could wait a few days until we got over our Jet lag but that little voice inside my head said go and do it now cause you will be to knackered and forget to do it otherwise. So off we trotted to the WCH, had the bloods done went home and about an hour later got a call from my GP asking to see me for Rhys bloods. Now I really wasn't worried at this stage as he always did this. The only thing that seemed weird was that he asked me not to bring the kids with me. So off I went and the receptionist ushered into one of the other consulting rooms. And I sat there for all of 2 seconds before he came in. Well he sat down and he looked at me and said " Felicitie, Rhys's blood test shows that he has a low platelet count, a low red cell count, no neutrophils and his white blood cell count is through the roof, he also has these cells called blast cells. Felicitie, the test shows that Rhys has a blood disease called Acute Lymphoblastic Leukaemia" well the blood drained from my face, I sat there in total disbelief and my hands started shaking and I could feel myself crying but there were no tears. I was then told I had to go home and directly to the WCH where he would be admitted for further tests. I couldn't tell my husband so I made the doctor ring him and tell him, I just couldn't speak I just wanted to vomit in the doctor's lap.

I drove home from the GP at around 2kms. I got home and started to freak out, I fell to the floor and just cried and cried for what seemed like an eternity. We packed some clothes for him and me and I tried to call my mum. I rang everywhere and was starting to panic, I just felt this mad need for my mum. Cause as mums we know that somehow mums seem to make things seem better. Anyway after about 15 mins of trying to find her I rang my Dad in the UK (what was I thinking) and he suggested that I try her at work (DER). So I rang her and Roy rang his mum and we went off to the hospital, where my mum was already waiting for us (god bless her).

I walked to the casualty desk and I went to speak and give the details as you do when you go to a public emergency department. 2 nurses just grabbed me and whisked us off to the short stay area, where there were Dr's and Nurses putting up IV's and getting needles ready and it just was so surreal, it was like I was having a full out of body experience watching all this. Anyway after a bone marrow biospy and a lumber puncture and other tests we were told exactly what it was and what the next step would be. He underwent 2.5 years of Chemotherapy he has had 1 red blood transfusion, 2 platelet transfusions, 7 Bone Marrow Biopsies, 16 Lumber Punctures, and 150 blood tests to date. I keep a record of all his results for myself. As a result of his treatment Rhys has a lowered Immune system and suffered from low IgG subclass1 (type of antibody) he also had Pnuemoccal Bacteremia septaceamia twice. Because he has a hole in his immune system he has no immunity to the pnuemoccus bacteria and even though he has been vaccinated twice, he still has no immunity.

He suffered from minor learning difficulties and he was helped greatly by the Ronald McDonald Learning Program. He is an amazing boy with so much personality. He is doing so great with school now he has finally caught up with his peers and is just an all a round great boy.

This is the reason that there is such a big age gap between my children as one of the first things I was told or asked was, was I pregnant or could I possibly be. I said no and was told not to fall pregnant while he was on Chemo because it can harm the unborn baby. So here we are almost 6 years later and I feel like it was yesterday that my little man was so sick but I look at my babies (all three of them) and I feel this over whelming feeling of privilege and I feel blessed that I have these amazing people in my life. Rhys will have to have blood tests, at the moment he is on 3 monthly tests but after Feb we go to 6 monthly then in Feb next year we go to yearly blood tests and this is how it will be for the rest of his life. He will have to have 1 blood test every year for the rest of his life, which really isn't so bad.

He is my little HERO

Written by Rhys Mum