Nancy's Brain Cancer Battle - an Update

[Jebus]

Hi All!


Thank you Dukie for helping me get back on here! Been trying for a minute or three.

First off, We wanted to thank everyone here for helping to Support Nancy and I in her Brain Cancer Battle. We are trying to clear all of her debt, put some to Gabe's schooling and prepare for what will come next. Trying to find options here that will fit our price range (which is next to not right now - but still looking) Optune is very hard to get in Canada - its $22000 per month, and only 4 spots available here, Avastin therapy is $8k per month here, and IV Therapy is $4k per month. Insurance doesn't cover any of these since they are considered SOC (Standard of Care) and are optional. Met with Nancy's Medical Oncologist today - there really isn't much more in the way of treatment they can offer except the over and above ones unfortunately.

Nancy is doing good all things considered! Her blood levels were pretty bad for awhile, bad enough were they had to stop Chemotherapy for weeks 4,5 and 6. Still continued with Radiation everyday for the full 6 weeks. We started beef bone broth, curcumin turmeric 1000mg, and papaya leaf extract 650mg X2 daily to help with low platelet counts. They were at 10 (at 100 count your blood can clot on its own, a normal person has a count of 200 to 400, Nancy's was 300 at the start of this.) She did multiple transfusions to try to bring it up without luck. Right now, after 4 weeks off to recover and build her back up, her level is at 216, so proceeding with round 2 of Chemo at a double dose starting today. Her white blood count dropped below 1, so she had zero immune system for the last 7 weeks, really hoping the chemo doesn't make her levels drop so much this go around.

I'm hoping everyone got everything that was shipped out - please let me know if it didn't. I've been a bit of a mess lately, having problems focusing/concentrating on stuff. I'll update you all as we go.

Here is the link for more updates etc....

https://www.gofundme.com/f/nancy039s-brain-cancer-fight

Again, thank you all so much - you are all amazing and we wouldn't be able to do this all without your support!

Chris, Nancy and Gabe

[Interl0per]

Man I’m at a total loss just want to let you know my heart goes out to all of you and sending positive vibes your way

[Rainmaker]

Praying for you and your family, good sir.

[russc]

Thoughts are with you guys...

[Jebus]

Hi all! Haven't been on lately, pretty busy with everything.... Here is an update!


Nancy got her MRI results back, this is her first post-op MRI. Her Oncologist is happy with what she sees. There is still swelling in the cavity, which she explained is common at this stage. I can't remember the term for it, but she assured us that it was to be expected.

Nancy had a horrible reaction to her first cycle of double dose chemo, went back onto the DEX steroid and Claritin to treat it, took a week but it helped.

This cycle really affected Nancy, her blood platelets went from 216 (a near normal person range - 100 and below is the threshold for you blood to clot) to 40. The Oncologist suggested trying a half dose of her first round of chemo during radiation, she said it would be better than nothing at this point. She is hoping to adjust the dose as we go. Nancy's bloodwork on Wednesday showed another decrease to 34, if it falls below 20 Nancy will need another transfusion, she's been increasing her Beef Bone Broth intake to try to help. Her White Blood Cell count also fell, from a normal 2, to .8. this means Nancy currently doesn't have an immune system, we need to be extremely careful with any cut, bruise, even brushing teeth, any cut at this point would mean a trip to Emergency.

Nancy was supposed to start her second cycle of Chemo this week, but due to how dangerously low her counts are, it's been out on pause. Mondays bloodwork will let us know where Nancy is, and hopefully we see improvement.

We are just taking it easy, isolating, and hoping for a positive bloodwork result.

Here are two photos from the MRI's. The pre-op one is the one with a large white area in the lower right of it.

The post-op Nancy just had with contrast shows the tumor cavity - the large dark area where the tumor was. It was almost the size of a baseball.

The next one is almost 7 weeks away, and it will be compared to her last to show the effectiveness of the Chemo, and Nancy's continuing to be a Badass!

Thank you all!!

[MAr]

Please tell her MAr loves her, in the appropriate and non creepy way.

[russc]

Hang in there guys...

[Jebus]

Hi Everyone!

It's been awhile, had issues trying to get on - and then things took a turn for the worse for Nancy. One MRI showed possible growth and enhancement, however, her Neurosurgeon wanted to double check to make sure - he thought it might have been Treatment Effect Necrosis - or a false growth, and he wanted Nancy to go one 30 straight days of Chemo and then another MRI. Things go lost between her Oncologist, and due to Christmas - the MRI didn't happen until early January. It should have been done mid December. The last MRI did indeed show growth, but at this point, it grew too close to Nancy's Ventricle and Brain Stem - and pass over to the other side. Surgery wasn't a possibility now. At this point we were pretty gutted. Nancy has declined quite a bit since before Christmas - I wish we would have opted for Surgery then and there - it may have helped.

Its been a really rough 3 weeks. Since the news, Nancy wanted to move things forward, so she decided to change her Care Goals (level of care in the event of a medical emergency) from R1 - meaning do absolutely every possible to sustain life - to the lowest goal, just keep her comfortable, do not resuscitate. This has been a hard blow for me, I haven't handled it well.

We also had Palliative Care come in to go over Nancy's wishes. She chose the place she want's to pass away in, and we are going over final wishes, doing the will, power of attorney etc.. This was especially hard, I'm trying to see through tears typing this. It's just so hard, seeing your best friend, Wife and Mother of your Son do this, and decline. Its hard.

So, the old and best treatment option TMZ wasn't working, her Oncologist wanted to try her with Lomustine, a more aggressive chemo, and more toxic. The plus side is Nancy will only have to take one dose every 6 weeks, the downside is it really messed her up the first few days, and we were told week 5 is when we will see the huge drop in Platelets, White Blood Cell counts etc... and it will be a rough week for her. She is going on week 3 come next Thursday. Her Platelets were below the safe threshold before she took it - her Oncologist said the risk should be worth it trying it at her levels, but we won't know until her next Bloodwork, and then another MRI in two and a bit weeks.

On top on this Dr. de Robles wanted to try Avastin as a last ditch effort to help with the swelling etc... It's not covered under insurance, so she said she would fill out paperwork to try to help with that. Each treatment (Transfusion) is between $1900-2200 depending on which brand name they use. The Dr. is hoping the paperwork she sent will be covered - we are hoping too. We would have to pay roughly $550 per week instead of the $1900-2200 a week. I've stated it lots - I'd rather go broke giving Nancy the longest treatment plan rather than going broke in a month. So we are just waiting - started the paperwork last Monday - still waiting.

Gabe wanted to stay home and do Homeschooling to spend more time with his Mom, but he isn't doing well. His grades were in the high 80's or 90's - now he is failing 4 of 7 classes - mostly die to him not turning in projects - so trying to work with his online teacher to help him - they are aware of our situation now, and will try to reach out more now.

Sorry for the long post, more info on Nancy's journey is on the GoFundMe located here:

https://www.gofundme.com/manage/tkgd2m-nancy039s-brain-cancer-fight

Anyways, MCB Members have stepped up more than Above and Beyond - we truly wouldn't be able to continue on as we have without you all. Trying to clear Nancy's debts still - She went back to school last year for Hospital Unit Clerk, on Federal and Provincial loans - and so far they keep charging her until a Death Certificate is produced - zero compassion - she can't work, she can barely walk, difficulty speaking, its heartbreaking, they just keep hounding her for payment we can't make.

I'm all over the place, I'm sorry - the breakdowns throughout the day are more frequent no matter where I'm at - especially work - I do a lot of Driving and thats when it gets me, Got to pull over and work it out until its safe to drive again.

Just wanted to update everyone on what's going on, truly thank you all. Lots of Love to you all!

Chris, Nancy and Gabe

[Rainmaker]

Chris, there are no words. Our prayers are with you and your family, good sir. Really appreciate the update, thank you so much for sharing!

[Stilgar]

very sorry to hear the news Chris, I can't imagine the stress you are under.

[punkncat]

Its been a really rough 3 weeks. Since the news, Nancy wanted to move things forward, so she decided to change her Care Goals (level of care in the event of a medical emergency) from R1 - meaning do absolutely every possible to sustain life - to the lowest goal, just keep her comfortable, do not resuscitate. This has been a hard blow for me, I haven't handled it well.

I applaud her decision to take this on her own terms. If you are being honest with yourself you realize this isn't going to magically get better and the end stages get into things that I hope she doesn't have to (further) experience, or you or her son see.

Take these last moments and lucidity for the blessing that it is. Celebrate the time you have had, the time you still have. Let there be light in this dark place.

[Falcon16]

My thoughts are with you Jebus. My grandmother passed away from a brain tumour on the 12th, given how large it was the doctors figure it could have been there for years. Looking back now it's easy to see the signs of cognitive decline and wonder if we'd done something different would it have helped.

I guess what I'm getting at is that I hope that your wife can live her final days not in pain but happy knowing you and your family love her dearly.

May God be with you all.

[MAr]

Chris: get me authorized with anyone calling you re: money and I will deal with them, and get you the break you need.

love you three. <3

[Jebus]

Hi All,
It's been awhile since the last update. We've been waiting the entire time to find out if we would be covered for a portion of the Avastin Treatment.

We finally received a letter in the mail today stating that yes, Nancy will be covered for a portion up until June 2nd. So this is great news! Instead of paying $1900-2200 per treatment, we will be paying 1/3rd the cost.

I emailed Dr. de Robles today asking what the next step is. She replied back fairly quickly saying she wants to have Nancy do an MRI next Tuesday, and the review the following Tuesday - from there she will decide the frequency of Avastin Treatment. It could be once a week, but we are hoping it is only once or twice a month. We won't know how the new Chemotherapy is reacting until the follow-up from the MRI is done.

Nancy is in good spirits, exhausted but doing what the Cat Poster saying - Hanging in there. We met with Palliative Care again, Nancy requested her Care Goals be changed from R1 - do everything possible to save her life, to a Do Not Resuscitate, just keep her comfortable designation. We went over Hospice options, and we are hoping the one close to us, set in the country is available. It happens to be one of my Customers, and I went out there last week. It is in a beautiful setting, and the Chef is pretty amazing - he said if Nancy wants Steak and Lobster for Breakfast, that's what Nancy will have! The Staff seemed really awesome too. It's so hard to type this out, but its a reality now.

We also have our Wills and Power of Attorney done thanks to a Friend introducing us to his Business Partner who helped us out. Just need to Notarize them this weekend.

We want to thank Everyone for helping us throughout Nancy's journey through this. Thanks to Family, Friends and Community Members, we are able to cover the first month minimum of the Avastin Treatment.

I'll update when we find out anything, we just want to thank everyone so so very much!

Cheers!

Nancy, Chris and Gabe

https://www.gofundme.com/f/tkgd2m-nancy039s-brain-cancer-fight?utm_source=facebook&utm_medium=social&utm_campaign=p_lico%2Bupdate

[TKSTristar]

Much love from my family to yours, praying that you all would feel peace

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