Day 1 – check

It’s just after midnight, but so as not to confuse myself, I’m still going to say ‘today’.

Today’s radiation went much better than expected. Based on how uncomfortable Eric was during the ‘trial run’, I’d called beforehand to see if they could possibly give him a shot of something for pain relief (which they agreed to).

Eric, not surprisingly, opted to try it without taking anything extra for pain – and because they had him propped up in a more comfortable position, easily managed to do without. The actual radiation only lasted about 5 minutes. Eric didn’t even realize they’d started the radiation at that point (thinking they were still setting up) so was pleasantly surprised to hear it was over so quickly.

Even missing our turn on the way back (avoiding the 410), we managed to get home shortly after 4. And perhaps it’s only in our heads, but Eric seems to look and feel better than he did that morning.

Monday is Day 2 – and the technician told us that it should get even quicker as the week progresses. Short of just shooting him with one of those guns at Laserquest, I can’t see how – but it sounds good to us.

We’ll keep you posted next week. Have a great weekend everyone!

Day 1 of radiation

Just a quick update: Tomorrow afternoon we’ll be at Credit Valley for Eric’s first day of radiation.

I’ll update tomorrow evening. In the meantime, thanks for your continued thoughts and prayers.

Next step; Radiation

Today (Friday, but it’s after midnight, so technically, yesterday) Eric went to Credit Valley Hospital for a ‘planning’ meeting. As he’s had radiation before, we got to skip the informational video. They ran him through the machine and tattooed dots where they will target the radiation. Sounds easy enough, but it wasn’t a comfortable procedure. Eric, however, handled it as bravely as he has everything else – and next Friday, will begin a week of radiation.

Radiation targetted at the largest tumour will shrink it – and if last time is any indication, should quickly provide pain relief with minimal side effects (extreme but temporary fatigue).

Thank you all for continuing to keep Eric in your thoughts and prayers. He continues to do relatively well; maintaining his weight and appetite. Some days are better than others, but he remains in good spirits – and never ceases to amaze with his good humour, optimism, and ability to soldier on without complaint.

Thanks again for your support 🙂

Scan results etc.

Sorry for being so lax in updating.
We went to see Dr Reingold for the results of Eric’s scans on Friday. Overall, the news was good; Eric is again ‘stable’. There’s been ‘slight improvement’ in the size of the tumours (and perhaps more importantly, no new growth). It may not be the ‘significant response’ that the doctor’s in Texas want to see in order to approve surgery – but we’re definitely on the right track. Other good news – Dr Reingold is recommending radiation (which Eric did get ‘significant response’ from last time).

MD Anderson had initially set an appointment for Eric the last week of July – and again for August 3rd. However, it’s more cost effective to send down the CD of the MRI and CT scan – have the doctors review it – and take it from there. If they believe surgery is an option at this time, the three of us will be more than happy to make a third trip to Texas. After reviewing the scans, Dr’s Kaseb and Vauthey will decide the next step (be it surgery, more chemo or radiation). They will then consult with Eric’s local oncologist, Dr Reingold (who’s been extremely open in following the expertise of doctors more familiar with FHC).

More good news; Eric is the proud Dad of the most adorable little puppy; Marley. He continues to do well – eat well – and enjoy visiting with his friends (Eric, not the puppy ;-)). At our appointment last Friday, everyone remarked on how well Eric looked.
Shout out to Michael; another remarkable young man fighting (and winning) the good fight. We’re behind you 100%!

Thanks as always to everyone who’s keeping Eric in their thoughts and prayers – it’s working!

Chemo Completed!

A belated update; Eric completed his chemo and continues to feel well; miraculously suffering few side effects.
An MRI and CT scan are scheduled for July 18th – with the follow up appointment on July 27th. Ironically, appointments were scheduled for the same date at MD Anderson in Texas – but it makes more sense to have the scans done here (saving approximately 12K) – then send them to Texas for review (the obvious goal being enough response to elicit a ‘come on down for surgery y’all’).

Much thanks for your continued support, best wishes and prayers!

Day 1; Round 3

Hello dear fellow fibro-fighters.
Well, not much to report – just want to let y’all know that Eric completed Day 1 of his last round of chemo today. We arrived at 8:40 (a bit late as usual) and were there until approximately 2pm. 3 more days to go!

Eric continues to soldier on incredibly. He had 6 hashbrowns for breakfast (then sent me down for another 5 before they stopped serving at 10:30 am) – for a grand total of 11! Shout out to Brampton Civic’s morning caf lady (who let’s just say always takes ‘extra’ special care of Eric). Point is, Eric has a good appetite and is keeping his weight up.

Last week we went out to pick up the garage sale money from Denise (the wonderful lady who organized/hosted it) – and to thank her of course. She managed to raise more money than previously posted – $1,297! Her hard work (along with Dorthy and Betty) is greatly appreciated.
It was our pleasure to meet you (and your adorable jumping dog 😉

Stay cool
Eric and family remain grateful for your continued support and prayers.

~Team Eric~

 

Garage/Bake Sale Update.

The garage/bake sale in benefit of Eric was a smashing success.

Thanks so much to all who donated – and came out to purchase items and baked goods (and by ‘goods’ I mean delicious).

An impressive $1274 was raised!

As usual Team Eric’s biggest supporters Tia and Maria were onhand to help out. Thanks especially to hostess Denise Dumas – and Dorthy Hartly & Betty Taillon. Anyone who’s held a garage sale is well aware of the effort it takes. When making drop offs that evening, Denise’s house looked like a combination of the TV shows Hoarders and Hell’s Kitchen.

Members of Eric’s family; his grandparents; Steve and Joan –  and co-founder of this site, Aunt Kara (along with cousins Tyra and Marcus) enjoyed meeting you all.

Thanks again!
~Team Eric~

An update – finally!

Let’s start with OHIP.
The application for pre-approval for ‘out of country service’ was DECLINED on two clauses;
To paraphrase – 1) the treatment requested (or any treatment for that matter) is deemed “experimental” and 2) is not deemed suitable for someone in Eric’s condition (in Canada).

So – despite all the documentation we submitted; the case studies and abstracts – stating that surgery is the best course of treatment for Fibrolamellar – despite the letters from Dr’s Kaseb and Vauthey (at MD Anderson in Texas) as well as Eric’s oncologist (stating the same) – and despite the fact that Dr Vauthey has performed several surgeries on FHC patients (successfully) – OHIP will, under no circumstances, fund Eric’s operation (should he be eligible).

I had the pleasure of meeting with another young man who was diagnosed with FHC (from Ontario). He has been operated on twice by Dr Vauthey (and was, in fact, the one who referred us to MDA) – and was twice declined coverage by OHIP. I’m happy to report that he is now in good health (though years later, still fighting his OHIP appeal!)

Treatment for FHC is deemed experimental in Canada, because there are no oncologists with any experience treating it. Dr Vauthey, I’m sure, will laugh when I inform him that a surgery he’s performed many times, is considered ‘experimental’. It is a fact, not an opinion, that surgery is the standard goal of any patient diagnosed with FHC.

As for Eric’s ‘condition’, I can only assume that because his cancer has spread, they would not consider him a good ‘investment’. Fortunately, YOU do. And thanks to your generosity (and NO thanks to the Canadian Government), Eric WILL have surgery if eligible. OHIP is not factoring in the ‘condition’ of Eric’s strength, determination and courage.

Day 1 of chemo was Tuesday (we pushed it back a day to take Eric’s dog to the vet. Unfortunately, Sam died en route – and despite the best efforts of the vet who worked on her for 20 minutes, we were just too late to save her. Godspeed sweet Sam. You’ll be missed). Eric slept through most of today’s treatment (and OK, I may have nodded off for an hour or so too). So far – so good. No surprise – Eric is very predictable in his ability to soldier on.

I have an event to announce; Denise is hosting a Garage/Bake sale in benefit of Team Eric!
32 ASHWOOD Cres.
Behind Avondale Plaza, near Bramalea Rd. and Steeles area.
Date, Sat. June 16 from 8am-4pm.

Please check the Events section tomorrow (and this time I really mean tomorrow, not next week).

Thank you!

Overdue Updates

My apologies for falling behind on keeping the blog updated.

It’s just after midnight, but ‘today’, Eric completed Day 2 (of 4); Round 1 of 3. Friday will be his last day of treatment, with the next round to begin the first week of June (and presumably the final one to follow in July). Once again Eric is undergoing one of the most aggressive chemotherapy plans possible; a 4 drug combination that the oncologists at MD Anderson suggested he be admitted to hospital for. I’m extremely happy to report that Eric is tolerating this treatment incredibly well. Obviously, it’s no picnic – but considering how severe the side effects usually are (and could be), I’m nothing short of astounded by how well Eric is doing (even grabbing a bite at the cafeteria before we head home).

More fundraisers are in the works (and will be announced soon) – if you’re planning anything, please feel free to email us so that we can promote it – and give proper credit and gratitude for your hard work.

Thanks to YOUR generous donations, over $78,000 has been raised thus far! $32,889 was used for the initial consultation in January – and we just received a bill for April’s visit; $12,398. Alarming – but that figure should be reduced – to deduct the cost of the scans Eric did NOT have during his consultation (though they were scheduled and factored into the consultation fee). In case anyone’s curious, the cost of an MRI is $8915 and a CT scan is $1994. Obviously, we will be doing scans at Brampton Civic whenever possible (and sending/taking the CD’s to Texas for review).

It’s getting a bit late – so please check tomorrow’s blog update – to read how OHIP justified ‘declining’ out-of-country service for Eric. It’s really quite creative – incredibly disappointing – and somewhat nauseating. Submit an appeal? You bet your @zz!

Good night all – and thanks once again for keeping Eric in your thoughts and prayers.