Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Sad News for a KA Alumnist

While our newer members won't know her, our old-timers may remember Maxine, who posted for a few years around the time of our Ottawa gathering. Those of you who were at that gathering will remember her son Daniel, who came with her to the BBQ at Cheerful's house. If you'll recall, Maxine was devoted to Daniel, who was such a sweet young man.

Sadly, Daniel died this past September. I've only just found out and thought I'd pass on the word to Maxine's KA family. It's been a truly rough six months for Maxine (other things going on that I cannot share here). She hasn't been here in such a long time, but knowing as I do the magic of KA when we send our prayers and thoughts out for people, I wanted to let you all know.

Maxine, if you see this, please know that white light and love are speeding their way to you.

Many hugs,

Very sad news.

Maxine,
Our thoughts and prayers are with you. I am so very sorry to hear about your son Daniel. I know it is not an easy time for you. I hope that the memories of him can give you some comfort.

Hugs,
Pam

That is sad news to hear that Daniel had passed. I was lucky enough to have met Daniel and Maxine at the Ottawa party and know how much he will be missed by Maxine.
Maxine I hope you read this and know that our thoughts are with you.

Dan

Thanks Kat.

I have missed you all, but really didn't know how to begin to tell people what had happened. I know that you guys would have supported me in ways that family cannot (somehow it's easier to talk to people that can give perspective) but I didn't want to come 'back' with such painful news. Daniel is an inspiration. He was diagnosed with Cancer at 15 months old and given just a few weeks to live. Those that met him will know that although the tumour/surgeries gave him many 'handicaps' he was a joy to be with. You should know that it wasn't the Cancer. Daniel had a new leg brace. He was getting used to it, but it was helping him walk better. We live in a townhouse. I had another railing installed to help with him going up and down the stairs and it was working well. However, Sunday, Sept 23rd, he was coming down the stairs and he tripped. He fell down six stairs, but hit his head on the dining room table. He had a massive bleed to the brain.

The thing that has given us most comfort, is that as he was declared 'cancer free' a few years ago, Daniel was able to donate his heart and both his kidneys. The heart recipient had been on the transfer list for 7 months and had been in hospital all that time. Both kidney recipients had been in 'acute renal failure' and were on daily dialysis. Daniel saved three lives. I couldn't have been able to bear the thought that his life was in vain.

Please everyone, if you feel you can, sign your donor card, it's so very important.

The 'thing' that Kat didn't mention, but I will, is that three weeks before Daniel's accident, I was diagnosed with breast cancer.

I'm doing very well. I'm half way through my chemotherapy. I'm actually having a few 'bricks' right now because the last three treatments are probably going to put me in a major 'flare' and I'm worried about how to deal with dashing to the bathroom while all 'gimpy'.

The oddest thing I have found is that the Oncologist has never taken into consideration my pre-existing joint issues. I have chemo every three weeks for six treatments. The first three treatments consisted of three different drugs.. the last three just one. Apparantly this is because the drug is so severe, it has to be taken alone.. along with IV steroids. This drug causes severe joint/muscle pain. This is why I'm so worried it's going to 'kick off' my AS.

I haven't taken an NSAIDS in years, and I can't now, with my chemo. Let's all keep our fingers crossed that somehow I can avoid a flare. The only good news is that I hear the Oncologist will prescribe Percs for the pain (is that good or bad?? Means he knows what's coming right?) but I haven't taken those in years either.

Anyhow.. that's my update to all those who remember me. Thanks Kat for reminding me to come back. It's nice to talk to old friends again (and I don't mean 'old'... I age every year too!!)

BTW... Do we still have to drink Gin??? (inside joke... sorry)

Maxine.

Kat,

Thanks for posting the info on Maxine and Daniel. I know how hard it can be on the familes and the person who has cancer having gone through it with several family members. I will keep them in my thoughts and prayers as they recover from their lost.

Brent

Maxine..
I am so sorry to hear of Daniel's passing.
This is so heartbreaking to read and cannot imagine what you have gone through and now the chemo. Please know that you are in my thoughts and prayers...luv buggy

I don't know Maxine, but my heart goes out to her . So sorry!

Wow, sorry to hear your news...falling down instead of cancer...he was cancer free, which was good news..his heart and kidneys saved three people...I think there's something to that, spiritually or akin...a hopeful transition...I will be filling out a donor card...may have done it years ago, but now's the time again...

watch out for doctor's meds for pain...they can make you feel drunk...percodans,percocets,oxycontin,anything with pain meds other than high strength ibuprophen (advil) can be detrimental...been there...

my mom just got diagnosed with breast cancer and will start chemo this week... she has osteoperosis (sp?) of the spine....I have AS...I worry about what you say about your joint issues, in her case...any input, keep it coming, and hang in there, you rock..
Peace
Linc

Oh Maxine, I am so terribly sorry.
I can only imagine the heartbreak you have been through.
I hope you have excellent outcome from your treatments.

Hugs
Maggie

Thanks for letting us know. We can't acknowledge what we don't know and this way we can be praying for her.

If you are around, please know how very very sorry I am for your loss.

Blessings to you an yours. Possi