Tuesday, February 24, 2015

Hello 2015 I've been waiting for you!!

Well 2015 has been a bit hectic, but fun to say the least! I decided to split the post that I had been working on into 2 and not publish the negative one, but hey in life you do have ups and downs, so if you really want to delve into what happened in our lives in 2014 go to 2014 - A Backward Glance it's not a happy read, but it ends on a high note.

Me, Myself and I
I took a decision (a type of new year's resolution) that this year is going to be about me. Now this may seem self-centred, but I have put everybody before me for years and now that Tomato is well on her way to recovery, I think it's high time I focused on me and all my ailments.
I've spent a lot of time with friends (yay!) having coffee dates, picnics, lunches dinner and more dinner (yes mostly involving food!!) We've had some deep, meaningful conversations and I have met some amazing people who have imparted their wisdom to me and reignited my spark. I have sent off for a book that was out of print and didn't arrive in the mail (however I am still hopeful that it will get here) about a plan to systematically get rid of my auto-immune disease or at least get it to a point where it is controlled because right now it's all over the place. The one thing I don't like about this book is the diet involving organ meat ewwww but I'm game to try so just need to source an organic organ meat supplier and get going. I was very excited when I read that I had to consumer Sweet Breads which sounded delish [think Kitka] but then I googled it and learned that it is a term for brain, lungs and glands!! Sooooo not having eaten organ meat in my entire life, this should be a fun task *not* so wish me luck!

Bacon
Bacon started Grade 1 and loves her teacher and is doing so well. She was eagerly awaiting the day when she would get her own homework, which she eventually got after the first week, but she sobbed when it was over because she wanted more!! (Long may that last!) She has started doing netball (how cute) and is always as neat as a pin. One of the many things I like about their school, is the buddy system. Basically each grade 1 gets allocated a buddy in grade 7 to help them with any problems they have. Their buddy visits them for the first couple of weeks at break to see if they are ok and know where everything is, and then they are a "big brother or big sister" to the little ones for the year. So Bacon was allocated Jasmine who is just the kindest, most loving little girl imaginable. She loves Bacon and gave her a chocolate on their first meeting, so Bacon feels like she has a friend for life. This week we went to see her swim in her very first gala called a "buddy gala." I was amazed that our little girl came third in her race! The final race was where each child got onto their buddy's back and was carried across the pool in the "buddy race"- such fun! At this stage I have to mention, why oh why are there so many parents who are keen to join in on the races?? All my tots wanted to know was why I didn't participate in the moms' race!! "Um no, sorry sweetie, I completely forgot and left my bikini at home - darn, maybe next time." (or not, whatever).

Tomato
Tomato started Grade 3 and we've been to an orientation evening, a parent's evening and another 2 evening workshops, so the school is keeping us busy. She has started art club and choir which is exactly what she enjoys. Due to her new skin program she can't swim go near grass or sweat, so she is limited with sports but the results have been so phenomenal that I have no problem with it (although she does). By next swimming season I think we will be able to re-introduce swimming and playing on grass. I have become an active member of the team of parents marketing this Eczema doctor's approach and Tomato wants to fly to Cape Town to meet Dr A and say thank you. How cute is that?

Thankfully all the uniform, stationery and endless other shopping (and labelling each and every flipping item), is behind us and the girls are pretty much settled into their new grades.

Tomato was due to go to the Ophthalmologist to have her eyes re-examined and wooohoooo after 2 and a half years of patching her one eye, we can stop!!

The Ophthalmologist said due to my A-type, anal personality making sure she put that friggin horrible patch on religiously (even though we've waged war over it) Tomato has had the best result possible. [See!! Sometimes us A-types do actually come in handy!] Yes she will still have to wear glasses but we've laid the best foundation possible for the rest of her life! I told you 2015 was gonna be awesome didn't I?  Thankfully after "the incident" with her glasses in December, the medical aid paid for new frames and lenses, so I was very grateful - phew!

It is very strange not to be measuring, working out, crushing, mixing and concocting things for Tomato to take. We are down to one tablet in the morning and nothing else. Amazing that we have eventually caught up with how "normal people" live and it is blissful.

I was asked to take Tomato for a hearing test as she is battling with reading. The audiologist thought that she had a perforated eardrum as she had very little hearing in one ear. Thanks heavens we discovered after a visit to the ENT that it was just a blockage and after all the gunk was removed, she re-tested with 20/20 hearing (haha have not idea what 100% hearing is called, so let's just go with 20/20).

Lettuce
Little Lettuce is starting pre-school [sob] He's going to start being a little scholar and he just can't wait to go to "my little school,"
although I could wait, he can't. He has already taken to Bacon's old school bag and wheels it around behind him all the time, wanting to get in the car in the mornings and it is just heartbreaking to see him being left behind every time. I've often said that he can stay at home until he's 16 because he's growing up so fast, but judging by the destruction of our home, I think it's time he started on his own little path [sob again!]

The two pictures on the left show his artwork on my keyboard, screen, mouse and a few household items. The blue is nail polish.
Moving along to the artwork on the walls. The two photos on the right, are the centrepiece in our diningroom and lounge.


Then finally we have an entire contents of a clear nail polish emptied onto the wooden flooring in my office. He seems to be VERY creative! *sigh*

Work-wise, I was contacted unexpectedly by a different division, so I've been working for my favourite company for the past 2 months and I started lecturing again this month, so I'm being kept out of mischief.

I have been given some direction in my life and I am very excited to see how this all plays out. I think it's time to carry on with my writing, focus on the well being of our little family and help others who are struggling.

Our ship is coming in and for once we're not at the airport!!!

LG - Life is gooooood!!!

Look out world, here I come..........

Rainbow over our garden

PS Thanks for reading my blog, I hit 10 000 views and didn't even realise it!!




Sunday, February 15, 2015

2014 - A Last Backward Glance

Where did 2014 go?  Never mind 2014, where did January go?

So 2014 is becoming a distant memory, for which I am quite grateful! Frankly put, last year was really rough but we soldiered through it and 2015 is looking fabulous!

2014 has been labelled as "the medical and emotional year" in my life. Fortunately I wasn't one of the patients but I spent more time visiting hospitals than I have in any other year since my dear sister crushed 2 vertabrae back in the 90's.

I'm just going to bullet point the events - just for my own records of the year and then get to the good stuff...... (there's always good stuff!)


LOWLIGHTS
  • My cousin passed away from a brain tumour
  • I was weaned off chemo meds by the "2nd opinion" specialist and then back on with more severe drugs and battled with the side effects
  • Casualty for Tomato after she fell off a jumping castle - fortunately nothing broken
  • My friend had an operation to remove a cyst
  • Mom went into heart and lung failure in May and spent 10 days in hospital
  • Mom was very weak and wasn't able to return home 
  • Running backwards and forwards to fetch my mom from my brother to run errands
  • Packing up my mom's home - getting rid of a lot of things that were precious to her
  • In August Mom's blood sugar was very high - admitted again for 3 days
  • Kyle passed away in his mom's arms (this will be emblazoned on my soul forever) Click here to see the blog dedicated to Kyle
  • Tomato was admitted to hospital for 4 days for a bacterial infection
  • My friend underwent radioactive therapy for 3 days in hospital to get rid of thyroid cancer cells
  • Another friend broke her ankle and was in and out of hospital
  • Another family member diagnosed with RA
  • Geyser burst
  • Lettuce ran and dived onto the driveway with Tomato's new glasses rendering them irrepairable
  • House was struck by lightning and we lost 2 small TVs and HD on hubby's pride an joy flat screen. Gate motor was zapped along with lights, some plugs, DVD player etc
  • Eczema, RA pain, dark days with no sleep.........
So that was the bad, but here's the good, better and MOST AWESOME!!

   


HIGHLIGHTS
  • Tomato started Grade 2 
  • Bacon started Grade 0 and wore a uniform for the first time 
  • Lettuce was introduced to his first pizza-making experience 
  • I met many family members for the first time
  • Had a great catch up of 40 years with another cousin over coffee
  • Went on holicay to my friend's farm 
  • Had a "Frozen" party for the girls
  • Friends vistited from afar
  • Bacon got to take Honey Bear for the weekend from school and we had adventures
  • Tomato received a merit certificate 
  • Tomato received an achievement award in final assembly
  • Bacon received the highest honour at her school and a gold ribbon
  • My cousin came to visit from the UK and I met her boys
  • Dorothy and family came from Oz
  • Finding a solution for Tomato's eczema

CHANGES
  • Tomato and Bacon changed schools in the second term and are thriving
  • Packed up my mom's house 
  • Mom moved into a retirement village
  • Tomato's skin!

After having quite a challenging year, I was looking forward to December for it all to be over with!! But November was the turn-around. I met Sean, Shawn and Shaun in the space of a week! Thanks to my friend Chucky and things began to change.... for the better! Ok to be honest the last Shaun didn't do anything but it fitted into my story :-)

Christmastime was relaxed and fun. We had a quiet family Christmas and I actually got to talk to Dorothy from Oz for a few hours, not the usual frenetic conversations we've had in past years. We took B, L and T to the Christmas house and they loved it. I bought 10 new Christmas books and hid one of them in the house each night and we played the hot and cold game to find them. Then I would read the new book each night. The kids loved it.

To bid farewell to 2014 we thought we'd have some fun! So we asked the kids where they wanted to go and they said Spur. Hmmm not our favourite but no problem, because there was a Spur where we wanted to go, so we could do it all.

So we drove to Emperor's Palace in the late afternoon on New Year's eve and dutifully went to Spur. Then when the sun had set we hit Santa's Playground, which was a mini fun fair for the kids. They went wild!! First we went on the Ferris Wheel, then the rollercoaster train, then the kids went on the cars and motorbikes. Tomato wanted to go on the spider, which I wasn't thrilled about, but fortunately once we were strapped in, she chickened out, which meant I could get out of doing it too - yay! After that we found a loooong windy slide and the kids did that a few times and then after the kids had done the little sail boat rides,

Then little Lettuce, all of 3 years old, wanted to go on the shells! Eeek! There was a little boy who was on the shell at the time with his mom (probably 6 years old) and he was sobbing and shrieking to get off, so the girls were put off and I thought that would disuade Lettuce too, but nope, he was keen. So on he and I went. 2 days later I still have vertigo from that ride but Lettuce L-O-V-E-D it!! The first thing he said when it finished was "I wanna go again!" Thank goodness we had run out of tickets!!

We then went to see the beautiful Garden of Lights which was even better than previous years and then back to the car. On the way to the car Tomato picked up R100 worth of tickets that some unfortunate person had dropped, so back we went to Santa's Playground and they chose to do the long slide again and again and again and then we were off home. The kids were transferred to their beds from the car as it was after 10pm and they were exhausted and Hubby and I had a relaxing time celebrating the start of 2015 at home.

Perhaps to be more specific, hubby and I stayed up to make sure that 2014 left!!!

I know that 2014 was seriously bad, but I am grateful that all the bad happened in 2014 because 2015 is gonna rock even in more in comparison and it's going to remind me to be even more grateful.

Onward and upward!!

Can't wait to get my teeth into 2015






























Thursday, December 11, 2014

The Day I Found Dr Richard Aron and Our Healing Journey Began

To follow our journey from the beginning, please click on this link Skin Deep which was my very first post regarding our ongoing struggle with Eczema. When I started blogging, I blogged about my family and our lives, so the posts are usually fun-filled, however Skin Deep deviated from the norm. As harsh as it is, that is exactly how our life was. Reading it now, makes my stomach tighten and my heart beat a little faster from sheer horror. You may think the word "horror" is an exaggeration, but it is nowhere close to what we have been through, and that blog post recounts a lot of the pain.

Secondly, please click on this link The Eczema Chronicles to read, on a monthly basis, what different medications and alternative therapies we tried, for a 16 month period, when Tomato was so bad that she couldn't walk or go to school! This is a real glimpse into the life of an eczema sufferer and how the entire family is affected daily.

Those were very dark, hopeless days, until we found the light at the end of the long 5½ long tunnel, and it wasn't an oncoming train, it was just pure, beautiful light! For more "before" photos go to the bottom of the page and click on the other Dr Aron Links.


*****

I have included the last 2 paragraphs from The Eczema Chronicles, so if you have not chosen to read that post, this one will still make sense! 


On Sunday 30th November Tomato was battling with the itching. She loves having play dates with her little friend at a local coffee shop that has a playground, so she asked if I would set up a play date with her friend, which I did. Because she hadn't bathed in over a week, I told her that she had to bath before we went out to meet her friend. She was very stressed but I eventually coerced her by making it special, saying she could bath in my bath, I would be there the whole time, I put on relaxing music and she tentatively got in. She was in the bath for no more than 2 minutes before the screaming started and she had scratched her skin raw before I was able to get her towel! I dabbed her dry as I had been taught, put some Vaseline on and put her in front of the TV to distract her from scratching. It didn't help. Within minutes she was bleeding, not just the smearing of blood on the couch that by now was the norm, but dripping drops of blood all around her and when it was time to go out to see her friend, she was too sore to get off the couch and she couldn't stop crying. Sometimes I wonder if her behavior is just for attention, but today I realized that she would have had to be very sore to cancel her play date with her best friend. This was the beginning of an "all-fall-down day." I went upstairs and cried and cried and cried.

I consider myself to be a very strong person, but the past few years have taken their toll on all of us and I was drowning. This is the day I decided to reach out and join a support group, which I had never even considered before. I needed to cry and vent my anger of having to watch my child suffer, to other families going through the same horror as we were. I was ready to give up. I felt that I wanted to run away and never come back. The helplessness of our situation was weighing so heavily on me. I couldn't even see through my tears. I got into bed in the middle of the day and left hubby to feed, bath and put the kids to sleep, I was exhausted and I had been told categorically that there was no hope by all the medical professionals. Tomato had twice told me that she didn't want to live anymore and I totally understood how she felt, but hearing those words from your child is heart-breaking. The situation was hopeless and depressing.

Watching TV after bathing on 30 November 2014
When I eventually stopped crying, I started to Google. I found a Facebook group but it was closed and you had to ask permission to join, so I kept researching and I came across a video of a dermatologist, Dr Richard Aron who was interviewed by Carte Blanche. Suddenly I was interested. Carte Blanche is a show that has been on South African TV for probably 15 years or more and has an excellent reputation of weeding out the con artists and exposing controversial issues that other shows are too afraid to report on. 

I instantly was drawn to this man. He made sense! The skin needs a combination cream of cortisone/ steroid as well as an antibiotic to stop the staph infection and of course a moisturiser. We had been using these, but in extremely high doses. Dr Aron explained how it worked and exactly how staph worked. Our whole family had been plagued by staph infections that Tomato had kindly handed around our family for the past 5½ years. Hubby had to have an abscess drained surgically due to one of his infections and when Lettuce was 2 days old he got 2 "pus things" (as Tomato calls them) in his groin and again 5 months later, a huge one on his forehead! We had used all of those medications that Dr Aron mentioned - AND IT STILL WASN'T WORKING!! 

Here is the Carte Blanche video that changed our lives:



Due to the fact that the video was 5 years old, I thought he'd probably retired or worse, died (sorry Dr A!) So I went to Dr Aron's website and was delighted to discover that he was alive and well, and was offering cyber-consultations. Even when I read that, my inner BS radar did NOT go off. I live in South African where we are targeted daily by con artists, so I question everything. My BS radar can detect a con artist from miles away and this is usually what happens when somebody tells me to deposit money into a bank account before I've even met them!! But my gut said "go for it, you've got nothing to lose." My practical brain however, ignored my gut and decided to look for some "dirt" on Dr Aron (apologies again!) Surely there was someone who had an axe to grind with him, I wanted to see the negative comments, so I could get a balanced view, so I continued searching. The only "negative" thing I could come across was this article Eczema Expert Defended by Parents that had been recently published, which showed that parents had seen dramatic results! Parents who sounded like they had been living through the same hell as we had! Parents who were trying a different approach and going against their own doctor's advice.

I then requested to join the Dr Aron Eczema Treatment Discussion Group on Facebook. I was reading through success story after success story and realised that this entire group of parents were (or had been) in the same situation as we had been, to varying degrees. It was such a positive, uplifting group and I couldn't find one comment that was judgemental, only helpful. I decided to read as many comments as I could, but I was getting excited, could this be the answer?  I was umming and ahhing as to whether to proceed, when I came across a comment from one of the administrators saying that Dr Aron was going to take a well deserved break and would not take on any new patients from 1 December until late January 2015. My heart dropped, it was 8pm on Sunday night, 30th of November! Now I am an instant-gratification sort of chick and patience is NOT a virtue of mine, so there was NO WAY that I could wait that long if it was possible that Tomato could get relief, like the other children who were mentioned on the forum! 

I rushed down the stairs and into Hubby's office (he was catching up on some work after a hectic day of being a single parent with the kids) and I said "I'm just telling you that I'm about to spend some money on the Credit Card for a new Dr for Tomato and I have to do it NOW!! I just have a really good feeling about this!" He looked at me like I was mad. He didn't look like he was comprehending and he just said "OK??" very slowly. I rushed out, got my Credit Card and switched on my PC. I had no idea how I would do it, but I was going to follow the instructions and call Hubby if I needed help making the payment. But it was so easy! I put in my details and viola I got a message asking me to send an email with some photos to Dr Aron and wait 5 working days for a response, no mention of him closing down over December - phew! I sent the photo that I had taken that day (see photo above) and gave a quick run-down of her condition, including that she was suicidal and that she was coming up with ideas on how to kill herself and begged him to help us. I got an automated response saying due to the increase in patients, I may need to wait up to 5 days. Phew! At least I had got in my request before the deadline. (We eventually traveled to meet the man. See that blog post here: Meeting Dr Aron).


I waited and waited and waited, hoping it wouldn't be 5 days due to my impatience issue that I mentioned before. Strangely I never once thought that I wouldn't receive a response. I checked my email all the time and then he phoned me! It was Tuesday afternoon (2 December). We had a chat about Tomato and the severity of her skin and how we had literally tried everything, so I wasn't sure that his method would help us. He made promises and we joked that he sounded like a used car salesman, telling me what I want to hear and I admitted that I wouldn't be taken in by a used car salesman's promises! He then said that I should only go ahead if this resonates with me. That word speaks volumes. I have NEVER heard that word uttered by any other healthcare professional. To me, that was a sign, confirmation. When he used the word "resonate" I immediately knew that this was going to work. I also told him that Tomato was taking anti-anxiety meds and she was currently using Vaseline and Steroid cream on her skin twice a day. She hadn't bathed since I tried on Sunday and before that, it was at least a week, probably two or three. Dr Aron said she may NOT use Vaseline on her skin again as it was the perfect breeding ground for bacteria and he warned that the first application of the cream may hurt her. My heart sank. But he promised that after the first application she wouldn't mind. I was a bit concerned because me forcing cream on Tomato in the past, had caused a lot of her anxiety and I told him this.

Dr Aron asked to talk to Tomato but she was too timid to ever speak to anyone (that's what eczema does to children, it robs them of their confidence), so I put him on speaker. He was so kind to her and drew her out of her Eczema-induced introverted shell. He told her that she needed to put the cream on (a huge ask in itself to apply a cream) and she wasn't impressed. He told her that it was magic cream and he had made it specially for her and had sent it on a huge Jumbo Jet. He asked her if she knew what a Jumbo Jet was and she whispered that she did. He went on to tell her that she needed to make sure her mommy collected it at the pharmacy right now because it was waiting for her! He then told her she needed to stay home from school and get creamed 6 times a day for 5 days. In exchange she could relax at home and not worry about school and homework. He then asked if she was good at maths and asked her 3 sums that she had to work out. He told her she was a super star and she was sold! She promised to try the cream. I thanked Dr Aron and we went to get the cream!

I had seen on the video that the modern world did not like mixing creams but I did not expect the reaction I got from the pharmacist! He said "I'm leaving in 15 minutes, I don't have time to mix creams!" After a heated exchange he stormed off to mix the cream. The pharmacy was only closing in 45 minutes, so I was not impressed, I was a mother on a mission! I was so excited to get started, I felt like applying it in the car! 

Day 1
As soon as we got home I applied a layer of cream. I am the M-A-S-T-E-R of distraction, having had to apply so many different medications to Tomato's skin over the years, so I sat her on the kitchen counter with my ipad and allowed her to play games (huge treat). I watched her play the game and talked to her, asking questions about how it worked, while I creamed. I knew the very sore, open wound areas on her body, like the back of my hand, so I waited to apply cream to these areas last. When I began on her ankles she started going wild, screaming in pain, but I calmed her down and asked her questions about who was who in the game and eventually I got her whole body creamed without too much fuss. I then let her play on the ipad until dinner was ready, as I knew that would take her mind off her skin and the constant itch.  Our kitchen counters are made of black granite and when she got off, I could write my name in the dry skin flakes that had landed on the counter during the 10 minutes that she had been sitting there scratching. 

I let her stay up later that night so that I could get another application on her, again while she played on the ipad, this time I found a quick video on funny animals that would entertain her. She didn't complain at all about it being sore. That night she went straight to sleep!! That had never happened before. Usually I spend the whole night begging her to relax and tickling her back so the itch wouldn't take over. I got to eat dinner with Hubby AND I got to watch some TV uninterrupted!! Whoo hoo!  Every time I checked on her she wasn't scratching! She was sleeping!! I even pulled Hubby out of bed to show him how her ankles were already looking different, they weren't dry and flaky anymore! He told me that I was getting ahead of myself, we had been here before, we had been promised the world by so many doctors, he firmly told me that I should be cautiously optimistic but manage my expectations. I knew he was right but I made him look at her ankles (with the torch from my cell phone) and he had to agree that they looked red but not dry and flaky! NOTHING was going to stop me being excited. Deep down I just knew that this was the answer, it just felt right. It resonated with me.
20 hours later, the red marks are much lighter and not itchy




Day 2
I carried out Dr Aron's instructions to the letter and the next night she bathed. Not for long, but she bathed, enough to wash the important bits and get out. AND she didn't scream! She was panicky that it was starting to get sore, but she didn't scream like she usually did, like someone was holding her in a tub of boiling water and then splashing her with it. I could already see progress. She was loving watching TV all day as this is not the norm in our house and by Thursday morning (4 December) her skin looked amazing!

Day 3
By Friday (5 December) I emailed Dr Aron telling him about the amazing transformation in Tomato's condition. He was not surprised. I also mentioned that although her Eczema was 90% gone, which was fantastic, the staph was still there, although to a much lesser degree. Unfortunately she did have 3 or 4 big boils which were erupting which were very ugly and painful (and disgusting). Dr Aron suggested that we give her a penicillin-based oral antibiotic. I mentioned that Tomato had finished a 7 day course of Augmentin in mid-November, so I was concerned and I wasn't sure if she was able to tolerate it again so soon. I loved his response. She can have more antibiotics if we feel it is necessary. He used the word WE! We were in this together, making decisions about the treatment together - that was comforting. He obviously understood my discomfort with using more antibiotics and after seeing some photos of the staph as per his request, he suggested that I bath her in a very diluted surgical scrub solution for 5 days to see how she goes. It had to be very diluted so as not to irritate her skin and cause a flare, but still be strong enough to kill off the bacteria. 

36 hours after first application
Here are the staph photos that I took on Friday and sent to Dr Aron. This was our third day into the treatment. The eczema is almost gone but she had about 150 "pimples" all over her body. The first is of her back and the bottom two are of her legs. The purple mark is a scar from a previous boil and the other a large boil. Both legs had boils.
On her back, very slight compared to weeks ago, but still there






  





New pimple on her neck




Dr Aron said that we should reduce the cream applications from 6 times per day to 4 times per day from Monday which we did, but we started using the bath surgical scrub immediately. 

Day 5
Most of the boils have disappeared. I couldn't find any new ones until yesterday when I realised that I wasn't using the scrub right into her hairline and lo and behold she got one on the back of her neck! Sneaky little buggers!! Today it is half the size. 

Day 7
2 days into using the scrub, I could see a huge difference and most of the bumps went away on her tummy. I bathed Tomato in my bath and I spent additional time on one resistant spot on her tummy. While I was washing it, I mumbled half to myself "go away horrible spot, why are you so determined to stay? Go away!" Tomato started laughing and said "Mommy that's my freckle!!" I stopped and had a good look and sure enough, I was trying to get rid of her one and only freckle on her tummy!!! Oh boy did we laugh. Honestly I had forgotten that she had that freckle! It had been hidden under the Eczema for so long, I didn't recognise her "normal" skin! She has told EVERYONE that story!! 
#embarrassing

Day 9
So far, Tomato has had 9 full nights sleep (apart from the playing instead of sleeping that she is now doing with her brother and sister because she isn't sore and itchy anymore!! I have to admit, I love everyday parenting challenges.) She no longer scratches in her sleep and when she wakes up, she opens her eyes and says "Good morning" without getting panicky and scratching herself raw before even getting out of bed! She is a completely different child. She used to be clingy and needy and now she is a pleasure. She is acting her age instead of regressing into baby language and today for the first time in 9 days she cried, not because of her skin, but because her siblings didn't include her in a game! I know that this may sound ridiculous to most people, but this is ABSOLUTELY WONDERFUL for our family. We are laughing and having fun like a "normal" family.

Tonight Bacon (age 6) asked why I was taking a photo of Tomato's back and I told her that I needed to see how much better her skin is getting. Bacon stroked her back and said "Oooh your skin feels just like my skin!" Tomato beamed with pride. The sandpaper skin was gone, her wish for skin like her siblings had eventually come true. 
Beautiful smooth skin on her back

Knees are still being stubborn (and ankles)

Legs still looking bad. Eczema mostly gone. Staph and previous scarring.
Day 12
I contacted Dr Aron and told him that most of the staph had cleared but the more resistant areas of Eczema were taking longer, otherwise her skin is silky smooth. He suggested we continue with the diluted surgical scrub in the bath for another week but to reduce the applications on all areas (even the clear areas) to 3x per day and the more stubborn areas to 1x per day (giving the more stubborn areas an extra creaming.)

Day 14
Christmas has come early this year!!!!  
2 Weeks later and Tomato's skin is looking amazing and feeling soft and silky! Honestly I did not think that her skin would ever be "normal." We have our little girl back. At long last, she may be able to enjoy what is left of her childhood. We know that Dr Aron does not promise a cure. But what he has done for my daughter's skin and for my family's sanity, is indescribable. He was right when he told Tomato that this is "magic cream." I have no doubt that our lives will be better and the suffering will be less. We will meet flares if and when they arise as we are now members of the Dr Richard Aron army. Together we will fight against this debilitating disease that steals childhoods and turns parents into crazy-people. 

I am so very grateful for seeing that video and joining the Facebook page. I really feel like I am amongst friends on that page. Friends who are further down that path than we are, but friends who are willing to assist however they can, because they know first-hand, what happens in families, whose children have been diagnosed as "just" having that pesky thing called Eczema.





"Eczema is not only a disease of the skin, 

it's a disease of the soul"



If you'd like to follow our progress click on this link: 3 Months After Starting with Dr Richard Aron 


Other links to blog posts about our journey with eczema:

Is Avene the Miracle We have been waiting for?


Nine Months Later with Dr Richard Aron

Meeting Dr Aron - A Dream Come True



Post Script - August 2015

One of the moms who was interviewed on the TV show (link above) agreed to give a quick update on how her son is doing today:
"It is great to see Dr Aron’s work being promoted and reaching as wide a public as possible. As our son was treated many years ago, I think his experience since his initial treatment will be of interest to those who are considering treatment now. 
I met Dr Aron 7 years ago when my 5-year old son, Aidan, was suffering badly from eczema. We had tried endless treatments from dermatologists, homeopaths, pediatricians etc over the years and nothing had ever worked for more than a few days relief.Dr Aron’s treatment, however, was like the miracle cure one sometimes read about and secretly hoped for for one’s own child. It was so dramatic you could almost see the eczema receding before your eyes. By the 2nd day of treatment he started sleeping through the night – something we hadn’t experienced in years! The relief for him – and for the rest of our family – was profound. 
More importantly, Aidan’s severe eczema has never returned in the 7 years since his initial treatment. Nor have we used the ‘Dr Aron’ cream at all in the last 5 years except for 2 short flare-ups (a week or less). 
Aidan was a child with an exceptionally high IgE and had many food and environmental allergies as a baby and young child. Dr Aron was clear that his treatment would not take away Aidan’s allergies, but would simply help his skin to cope. So Aidan remained on a fairly restricted diet for many years and he needed to bathe after playing on the grass or he would become very itchy. Two years ago, we re-tested Aidan’s allergies (with Dr Adrian Morris in Cape Town – someone I can also recommend), which confirmed that Aidan had outgrown his food allergies but remains allergic to grass and tree pollens. 
Aidan continues to have beautiful skin. We have looked for - and never found - any sign of thinning skin from the treatment he used so many years ago, which included a prescribed mix of moisturizer, cortisone (and initially) antibiotic creams. He plays both rugby and cricket despite remaining allergic to grass and is able to manage this by bathing after games and applying a simple moisturizing cream. Additionally, I still use a special laundry soap as regular detergent seems to be an irritant. Besides the above – Aidan’s life is completely normal and we remain deeply grateful for his treatment with Dr Aron!" - Julia Cain





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Wednesday, October 8, 2014

Hold Me Tight - RIP Kyle Du Preez Lowry

I have a wonderful friend, who I have known since school. We first sat next to each other in Standard 8 biology and instantly became friends. As much as we loved the friendship, our teachers were not as enthused because we were a bit disruptive in class. We laughed. A lot. Actually we laughed and chuckled so much that we both somehow took to being called Chucky and we have seldom referred to each other by our real names since then. Right now if you check my phone, her number is listed under "Chucky".

Fast Forward 20 years. We've both had ups and downs and I've mentioned in a previous post how we lost touch for a few years and would bump into each other from time to time and have a quick catch up. Then when I was heavily pregnant with Lettuce, we bumped into each other at the mall. She was buying an iPad for her son Kyle. He was starting high school the following year and the school was moving to iPads instead of text books, and I was slowly pushing a grocery-laden trolley. I remember her saying "Oh my gosh, when are you due?" and I said "12 days ago!!" We just laughed. I gave birth that night!

We are standing directly below the ball - it's enormous!!
Since that day we have met quite often, she has been a wonderful friend and is such a beautiful, fun, kind, friendly, giving, loving woman. She adores her 3 children and has the most positive outlook that I have ever come across. She started her own business in her early 20s, in a male-dominated industry and has won entrepreneurial awards for her efforts. Against all odds, her business is still thriving under her leadership. She has a beautiful home that she decorated herself and the welcome mat is permanently displayed. Just 2 weeks ago she bought the biggest mirror ball in the country and threw a massive party to celebrate and let everybody see it.

The ball at night
We were supposed to go to dinner with a mutual friend last week but we couldn't get it together. So we were planning for this week, probably tonight. We always have such a good time and usually laugh until we cry. And we always go to the same place, it's ridiculous but we love it.


So this morning started out as a beautiful spring morning, but very soon became one of the very worst days of my life. One minute I was finishing up with a bit of admin, promising my rowdy kids that I would hurry and take them somewhere special because they are on school holiday, and the next minute I was speeding towards a hospital, praying for my friend's son's life.

My friend's 16 year old son Kyle had been riding his scooter and was hit by a car. He was rushed to the Flora clinic. A nurse told us that she would keep us informed every 20 minutes and true to her word, she did just that. Firstly she told us that he was undergoing surgery as he had damaged his spleen and it would need to be removed as he was losing a lot of blood. He had also fractured his pelvis and had possible head injuries but these issues would be dealt with at a later stage, the surgeons needed to stabilise him first. We waited and prayed. The nurse came back and told us it didn't look good, we hugged our friend and prayed harder. Then there was some positive news, he was being sewn up and taken to ICU, the immediate family could see him.

The family went upstairs for a long time and when they returned, it didn't look good. We were all in shock. Kyle had not regained consciousness. The doctor called us and we all went up to the ICU where the surgeon told us "there is nothing more we can do, his injuries are too severe and he has lost too much blood." He had no blood pressure and he was being kept alive on the medication that they had given him, but it would wear off.  It just didn't seem real. If the doctor's words were foggy for me, I can only imagine what my friend heard as he delivered the words that would rip out her heart and change her life forever. I cringed as my friend asked, how long she had with her boy. The surgeon gave her approximately an hour. How do you say goodbye to your beautiful child? In an hour?  How can anyone be expected to do this? She kept asking if the surgeon was sure and he kindly answered each time, that he was very sure, there was no hope of recovery. Each time he said it, it jolted through me.

What struck me was that Kyle was lying there, with tubes and pipes everywhere and his head in a red, steel vice, so there was nowhere for his mother to touch him. His granny held his hand. Words are insufficient to describe the feeling that overcame everybody in that room as his mom lay over him and hugged his lifeless body and his parents, grandparents, uncle and friends said goodbye to this beautiful, precious soul, who has been a part of their family for what must feel like a lifetime. We left the family and shortly thereafter the kind nurse came to tell us that his pulse was fading and minutes later, he was gone.

8 October 2014, the day that started out as a beautiful spring morning, will be emblazoned on this woman's heart forever. The day that she held her beautiful, precious baby boy in her arms for the very last time, told him she loved him and that he was her angel and finally had to say goodbye and leave him in that cold, stark, hospital bed and to go on without him.

How does this strong, fiercely-loving mother go on?  Friends and family can hold you, pray for you and with you, but what could ever repair this mother's heart?  Parents are not supposed to bury their children for a very good reason, it's not the natural order.

I found this quote and thought it sums it up completely:



Incredibly, life goes on and after leaving the hospital, they had to go home and break the terrible news to Kyle's sister, 10 year old Megan, who was blissfully unaware of the life-changing events that had occurred earlier that day while she was at school.

A lesson to take from this, and I believe there is always a lesson, is that we should not take life for granted, nothing lasts forever and our children are lent to us for a finite time. Live your life to the fullest and enjoy each day that you are blessed to spend with your loved ones, especially your children.

I know that when I got home, I just hugged my BLT (children) close and cried and cried for the hugs that my friend won't ever have again.

R.I.P. beautiful Kyle Shaun Du Preez Lowry



Postscript

The above blog post was posted on the day of Kyle's death. This has impacted me much more than I had thought possible. Facebook immediately became flooded with images of Kyle and the most heart-wrenching messages from people who cared about him and knew the side of him that was shielded from his family. So many images and stories, that his family hadn't seen before, surfaced. This gave enormous comfort to his mom and sister.

On 14 October we all gathered together at Kyle's school hall to celebrate his life and bid him a fond farewell. 741 people were counted at the memorial service for Kyle. There were many school friends, family and people who knew and loved him. Kyle's life was all about lights and music and his mom arranged for a send off in true Kyle-style with lights, decor and beautiful music.


Gordon Harrison then got up to speak:

"Kyle, my boy.
It seems like yesterday that we realised mum was pregnant. Her winter cravings for gherkins on a train bound for France were a give away... we were there.
When you made your debut into the world with a distinct yellow tinge, we were there.
We have watched you go through all the stages of pre school, primary school and most of high school, we were there.
Our ski trips and Italian lunches (that we are still paying for  ) we were there.
Watching you grow into an amazing young man who along the way dealt with some really tough challenges. Seeing you become the little man of the house looking after mum and Meggie and watching you face the difficulties young adulthood brings and taking them in your stride, we were there.
Listening to you talk about your passions.. Lighting, sound, motorbikes...we were there.
On Wednesday when we received the call to say time was running out... we could not be there.
My boy, so many words left unspoken.
Know that we love you and are very proud of you and that you will be in our hearts always.... forever young.
All our love uncles S and G... Your favorite aunts/godfathers"


Kyle's godfather (and principal of his school) gave the eulogy which was so personal and beautiful. This is what he said:

"Today, I stand here as a godfather, an Uncle…a friend. Most certainly not as a Principal. You see, the only fights and arguments I ever had with my godson, Kyle, was as his Principal. So, today I am just his godfather. Many parts of this speech had been prepared in my head for his 21st. Today, I share them with you in celebration of his life.
I want to take you back just over 16 years. Picture this, a train, in the middle of the English Channel, the European winter of December 1997, we were crossing underneath the Channel as we were on a freight train transporting our bus that was returning us from our recent skiing adventures from the French Alps and in the middle of all of this Jo-Anne wants gherkins! Not one, not two…but an entire jar…. demolished, eaten, devoured. Less than 10 minutes later she was feeling ill. This ill sensation had started a few days earlier. Of course Jo put it down to the hundreds of gherkins that she had consumed over the past few days. Not a store in Courcheval, our ski village, had any jars of gherkins left. Gordon, called it first…Jo-Anne was pregnant with our dearest godson, Kyle.
Being born in winter is tough! Being born on the Highveld in winter is even tougher. It’s cold! On the 21st July a baby boy was born to proud parents Jo-Anne and Kurt Du Preez. To my great honour, he was given the name Shaun as his middle name.
Being the oldest meant that neither Mom nor Dad had any experience in the ‘baby’ business. From bottles, to changing nappies to feeding. So dear old Kyle was fed, clothed, changed and medicated, sometimes by trial and error. Picture the next scene. Jo-Anne and I were in the room with Kyle, not even a week or so old. I look at this little thing and start thinking that he has a pretty mean tan for a Highveld winter baby. On closer inspection, I see that his skin is a serious tinge of yellow. “Jo-Anne”, I ask with alarm, “does Kyle not look very yellow to you”? “Oh”, she replies, I thought all babies are this colour when they are born. Fortunately, it was a mild form of jaundice and a few days in the flirted rays of the winter sun soon sorted out his tan.
Within days of returning home from giving birth to Kyle, Jo-Anne was back at her company, Upstage, running things in her usual inimitable manner. Except this time, there was the pleasant sounds of a newborn baby boy gurgling and often not so pleasant sounds of him crying in the background.
His early years were at another private school. However, Kyle’s character never suited that school and despite our recent heated discussions on his current high school, he knew that his uniqueness suited the personality of Crawford. I clearly remember giving the then Principal, Jopie Maasdam a call and asking if he could make space for my godson in Gr 3. Jopie’s own tales tell the stories of Kyle’s exploits at Primary school. Every time when Kyle saw me after he moved to Crawford Fourways, he would thank me and tell me how much he was loving school.
Kyle was born to be involved in some form of lighting or sound work. From a very young age he was in the warehouses, tinkering with electronics and lights and sound systems. Most kids had jungle gyms, Kyle had scaffolding. How many of you remember coming into this very hall, only to find him dangling from high beam or straddled across the scaffolding several meters up.

We all have a fond memory of Kyle. Some, shared his passion for motocross. As we were going through photographs these past few days we realised how many motor bikes Kyle rode and just how much he enjoyed it and how good he was at riding.
The number of times that we as friends and family headed north to the delights of the European Winter to take on the French, Swiss and Austrian Alps are some of the best memories that we have. Kyle was not interested in skiing and like his Dad, Kurt, he was determined to snow board. This he did remarkably well. We happily traversed the many ski runs with Kyle keeping up continuously and some times very bravely. At one point on a particular run, Kyle, Gordon and I were separated from the rest of the group. We spent much of the day skiing across the Swiss border into Italy. Much to Kyle’s delight we stopped at a small family run hut. Our famous last words, “if you are hungry my boy, order what you want…” we have just recently paid off the loan taken out to settle his lunch bill. He was 10 years old.
Lately,it was his passion for DJ’ing and how he fought his Mom to try and convince her that it was absolutely OK for a 16 year old to be DJ’ing at Clubs. I was told explicitly that DJ’s are in their prime from 17 – 19 years old and he had no intention of missing his prime. Many of you here today will have heard him and I do believe that he was very good.
Kyle suffered for years from a form of arthritis. And after years of agony and operations he finally gained good health. This led to his newfound love for gym. Many of you know me well. Despite my lack of 10 full fingers, I am still useless at trying to play cricket and spin the ball or even bowl. Kyle, despite his hours and hours of playing in the swimming pool whilst growing up, tried water polo for two sessions in Gr 8 and carefully approached me to say that he was moving back to cricket. So when he told me this year that he was now hitting the gym, that really got me fired. I loved the fact that he was prepared to take the time and train with me. I loved the fact that I could keep up with him, barely. I loved the fact that we could exchange the different types of Whey Protein shakes, I loved the fact he would spot me and carefully glide the weights back into place.
His hard work in the gym was paying off. The now, infamous selfie of the triceps and deltoid extended flex in the change room at Virgin Active has graced dozens and dozens of Whatsapp profiles and Facebook pages. Of course, his ability to claim the top prize of Selfie King of Social Media is a given…Snapchat and Instagram will never be the same again.
So many of you will remember that out of 10 times that you saw him, he was probably smiling on all 10 occasions.
How do you talk about someone’s life in the space of a few minutes? I wrestled with that question over the past few days. I understand now, that you can’t. You just can’t. In the video that we put together, you will hear two songs. The first one is from City of Angels. A movie that Jo, Megs and Kyle watched again and again. The 2nd, Was one of his favourite songs.
Each and every one of us has special memories of Kyle. The number of you that have shared these with his family over the past few days has been just wonderful. Your care, love and support has been the biggest comforter for his family.
To his amazing mother, Jo-Anne. You are indescribable. I have watched how you have hosted so many of his friends over the past few days. How you are concerned for their well being and happiness and how even when you are grieving, you take the time to call one of his friends late at night just to reassure him that everything will be OK.
Like most of you, I never got to say good-bye. At first I struggled with that. But now, I understand that I did not need to say good-bye, he will always be with me and in the same way, with you."


Click here to view the video played at Kyle's Memorial Service - unfortunately You Tube removed the video due to the "Faded" song being used (Copyright issues)

Kyle's sister Megan was strong enough to read the following poem:

Never Alone
I feel you in the morning
When at first I awake
Your thought is with me
With each decision I make
You'd been around forever
Since the first breath I took
Now I have to go on alone
But for love, I need not look
Cause by what you bestowed
In our short time together
Will last in my heart
Forever and ever
Although you've left
And now walk above
I'm never alone
I'm wrapped in your love


Then his mom bravely stood up, took the mic and gave this tribute to her son:

"I am standing here living every parents worst nightmare and I am broken. But I am also the proudest mother anyone could ever be. I have received literally hundreds and hundreds of messages, emails, facebook postings and sms’s these past few days and the love that we have felt has been overwhelming and I thank you all for this and for being here today.

To Kyle, my ratbag, my sunshine and my Angel, you made me so proud. You were the most amazing and brave son, kind hearted loving big brother, gentle grandson and loyal friend and have left a huge hole in so many lives. Your passion for lighting and music will remain your legacy. The Angels in heaven have put down their harps to listen to your ‘deep house’ music and the Upstage flags lowered to half mast in your honour, and I trust that todays event is a fitting celebration for you, and testament to the very full life you lived as we never do things in half measures in our family – there is always drama, lights and music and a production!


The picture behind me is my favourite – you made me so proud with your lighting and told me that night what a cool mom I was and used this pic on all your social media for weeks. I know you had no regrets. You lived and died happy and with passion and I have no doubt in my mind that you are watching and listening to this right now from the sound room with a smile & giving me the thumbs up!

Looking through pictures of your life, you are smiling in every single one. This gives me peace knowing you were a very loved and happy child. And after meeting so many of your special friends who truly loved you, it is an indication of the person you were, as you attract back what you give. And speaking of attracting, it has been brought to my attention this past week just how many girls had a crush on you – even Megan's 10year old friends. Your energy, humour, kindness, and wholesome attitude, along with your need for fixing your hair, stealing my spray tan, eating egg whites and salmon sushi, xxx mints and blue Energades will be sorely missed. 

I know that you are always with us and that you have become Taylor, Megs and my Guardian Angel and my only regret now is that Heaven does not have visiting hours.


Thank you for choosing me to be your mom and may you fly with the wind in your wings, music in your ears and know you will always be loved and with us."


After the memorial service we were each given a white balloon on which to write a message to Kyle and send up to him. His grade sent theirs up together. It was so sad but so beautiful. 

So as friends and friends of friends say farewell to a beautiful soul, who graced this earth for a very full but very short period of time, his family are left to deal with the massive gap in their lives. The empty seat at the dinner table, his empty room and all of his things. They will be reminded by the "first" of everything without him - the first Christmas, the first New Year, the first birthday without Kyle. And slowly the hurt will fade from a raw wound to a scar that will ache from time to time but will always be a strong reminder of his life and what would have, could have, should have been. 


Click here to view the full memorial service





I am sending love and light to his family, especially his mom, who will suffer the most. As mothers we are the very first to feel our baby's energy and then the first to feel the physical movement within our bellies. When we first hold our newborn baby in our arms, we feel an overwhelming connection and we will be connected to our children forever. A mother's love and connection is greater than any other bond. Kyle's mom knew that something was not right on the 8th of October, it was her maternal instinct. That maternal love bond and energy that a mother and child share is not only felt on earth, but for eternity. Kyle's spirit will never fade.






Rest In Peace Kyle