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Julia's Fight Against Rare Cancer

$124,884 of $175,000 goal

Raised by 2,318 people in 6 months
Created November 11, 2018
**This is the OFFICIAL Go Fund Me campaign for Julia Adams, all others should be reported**

My name is Alicia McBride, and I have created this campaign for my best friend, Amy and her daughter Julia. 

 Amy's father, Brad, passed away on 11/8/18 after a short but fierce battle with metastatic melanoma.  He was initially diagnosed 3 years ago, the melanoma was removed and all of his regular checkups suggested he was cancer free - even at the checkup the very same month of his stage 4 diagnosis. 

The cancer was discovered to have metastasized when a mass was found on his brain this past April.  He was a generous, caring, and humble man.  Brad passed peacefully at the VA Hospice on Thursday, November 8th; he was 64 years old. 

A few days before his passing, Amy had taken her 23 month old daughter Julia to the ER with a persistent stiff neck.  They found a mass on her brain! 

The very day after Brad lost his fight to cancer, Amy and her husband received the devastating news that Julia has an extremely rare and deadly form of childhood brain cancer.  

I can't even imagine the grief they are going through.  There are so few ways we can help a family facing these overwhelming circumstances.  One thing we can do is allow them to focus on their time left with Julia, and not whether or not they'll end up losing their home.  That's the purpose of this campaign. 

About the finances: Amy and Brad owned a local IT company.  The company was just the two of them for many years.  Brad did all the computer support, and Amy managed all of the details, they were a good team.  Amy's savings and security was in this business.

When Brad's first brain tumor was found six months ago, he immediately had brain surgery (he went on to have 4 surgeries over the following two months).  Needless to say, he was unable to effectively work, though he continued to try - even using his laptop right from his hospital bed hours after surgery. 

Every penny they managed to save in the business, went to supporting Brad's living expenses over the next 6 months while he was unable to work.  At the time of his passing, Amy is left with no business and no additional funds to draw from.  (Amy has found part-time employment with another local IT company, and this company has been graciously supporting many of Brad's previous clients.)

Julia's heartbreaking diagnosis couldn't have come at a worse time, financially.  The doctors said Amy and her husband Reed will likely be spending the majority of their time in the hospital over the next year, dealing with the actual treatment and then all of the medical emergencies that realistically come out of having no immune system.  After six months of intense chemo, they're looking at possible radiation, although doctors want to avoid radiation in a child so young, followed by another six months of less-intense chemo. 

Both Amy and her husband have employers who are sympathetic to their situation and will hold their positions while they are caring for their daughter. 

I am creating this campaign to help with all of the expenses that goes along  with caring for a child with cancer, and to make sure that Julia can keep her house so she has a home to go home to.  There will be a long list of medical bills, driving expenses, food, babysitting care for Amy and Reed’s youngest son, Gabriel, the mortgage payments and utilities. 

Amy and Reed are good, deserving people.  I can't believe they are facing this.  No one should be forced to lose a parent and a child, in the same year, to the same disease. 

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Ways to help Julia:

GIVE whatever you can. No donation is too small. 
SHARE this on social media 
EMAIL this page to your family and friends - gofundme.com/JuliasFightAgainstCancer  
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Please continue to lend all your strength, love, and prayers to this family.  Little Julia is facing a massive uphill battle against incredible odds... all their efforts needs to be focused on BEATING THIS and being able to see their daughter turn 3!

I will post regular updates on how Julia is doing.

With immense gratitude, 
Alicia McBride

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+ Read More
From Amy-

Julia update (5/26, Sunday)


Julia had a grumpy morning, but OK afternoon. Counts are low, but vitals are fine. She had her gown changed FOUR TIMES from so much drool/mucus. They are starting her on glycopyrrolate which decreases saliva production, so hopefully that will help a little bit.


They already increased her HME breathing springs to THREE hours at a time! So she's increasing by the day. She did great today, even through all the excess snot. She even took a short nap while only on the HME (without the typical vent support she gets while sleeping) and she did totally fine! So they're just going to keep increasing it, and have her continue to rebuild those breathing muscles. She doesn't care for the noise the HME creates, but she LOVES being disconnected from the vent.


The nurse even said she got an ON PURPOSE hi-five from Julia's left hand when the tubing wasn't there! I didn't see it, and couldn't get her to repeat it, but that's really awesome =) We're still looking for evidence of purposeful movement / eventually fine motor control on that side. (For Julia's new followers - in December she developed a brain infection through one of the surgical site, and it caused a stroke [that's the big bulge she has on the left side of her skull - an interior shunt to relieve pressure if needed]. After the stroke, her health declined rapidly from the cancer and she went into some sort of coma... so she is JUST now starting to rehabilitate her left side from 5 months ago!)


Any time Julia barfs or disconnects her feeding tube to water the bed, they have to change her bedding. It used to be a LONG process with her delicate neck, but starting about two months ago, someone (a nurse or Reed) could just gently lift her completely out of bed and someone else would change the sheets. Today, Reed lifted her up for a change and she squirmed around in his arms and then full-on monkey hugged him! she wrapped her right arm and both legs around him and wouldn't let go. So he gave her LOTS of standing hugs, and she just bounced her feet around all content. She shook her head 'no' every time he asked if she was ready to go down <3


Picture tonight is Julia grabbing her foot! Such a silly simple gesture, but she hasn't been able to do this since surgery on November 17th! So over 6 MONTHS of not being able to grab her feet like all littles do. You can tell she's enjoying her re-found ability <3


We visited with baby brother today, and Julia was so happy to see him, as usual. She makes her big "O!" face when she hears him - it's always such a nice surprise! Julia was trying so hard to roll toward him... she wants to get to him so bad. So they hung out for just a short while and then she couldn't keep her eyes open anymore and took a snooze. I have a super short video of her VERY EXCITEDLY saying hi, and then the nurse had to do something and I forgot to take more (pardon her snot).


And today Gabriel and I went on a hike with Manny and Megan. For starters I nearly died. It was a least a million degrees, and it was 90% uphill. But Gabriel had a great time <3 Manny even sung him to sleep while walking through the meadows =) So I'll put a few of those pix in with Julia's toe-grabbin!

https://youtu.be/-PSCsUAfRu0
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*********************************************
************** Official Links ***************
(These are here because of scammers)
*********************************************

Julia's *only* pages:
Website: juliaadamscancerfund.org
Facebook: Julia's Fight Against Rare Cancer - Fund
GoFundMe: gofundme.com/juliasfightagainstcancer

Julia's *only* fundraisers:
T-shirts: https://bit.ly/2MQc0lF
Children's Book: https://amzn.to/2CTTN2S
Jewelry: https://etsy.me/2E1mR8i

Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle):
www.naturallywellforlife.com || Coupon code: danaboyd

If you're new and want to know what's going on, my first post about Julia was on October 31st. You can find them all on my Facebook page or Julia's website <3
+ Read More
From Amy-

Julia update (5/25, Saturday)


Decent morning... grumpy afternoon and evening. All her counts are solidly on the way down from chemo (white cell, red cells, platelets), so she's exhausted and overall pretty miserable. Sometime during the week they should start to rise again, and she'll be the happiest of the cycle just before it starts again. We expect an MRI after NEXT cycle. Other than a ton of snot, her vitals are still great. Still no complications from this "high complication" chemo - so she'd doing fantastic!


She really enjoyed reading a Peppa book (over and over and over) early this morning, but the rest of the day she grumped. That same Peppa book got thrown a lot. Along with Tiger. And anything else she could reach. She threw a fit anytime Reed tried to leave, and she was not happy to see ANY nurse today. No one got any waves. Certainly no hi-fives or kisses.


She's still a snot waterfall. They are waiting for results from her allergen test to come back. I guess that determines if she can stop a certain antibiotic as well as start one or two new meds to help dry her up a bit. Hopefully some relief... it's making her so miserable =( Also, Reed is asking about several of the suggestions from the comments last night (anti-nausea patch that helps with secretions, and a chain for the trach [rather than velcro]).


She has not had floor PT in 2 weeks =( They don't do it during chemo because it just takes so much out of her, and they didn't get to it this week at all (and they're not in on the weekends). That's one plus with her being home (or at a facility) - just more opportunity for exercise. Though she IS doing a lot on her own! She grabbed her own foot for the first time today and was super content just pulling on her own toes <3 And we're going to bring her bouncy donkey down to see what PT can do with it... possibly really great, possibly really bad!


Reed reviewed all the class stuff for an actual trach change, and I guess he's going to participate in the next one she's scheduled for which is Monday (it gets changed once a week unless there is a problem, such as it gets filled with gunk). He says he has no concerns. Even just hearing that he's going to do it made me anxious. And it got me thinking... when I was like, 15, I was at my grandpa's farm (hi grandpa!) and we were shooting shotguns. Mine went off "unexpectedly", and ever since, I've had a super over-the-top fear of guns. I don't mind OTHER people having guns, and I love playing video games with guns... but if I'm actually physically near a gun, I get irrationally terrified. I don't trust it. I don't know what it's going to do... I feel like it will fire if I even get near it. I realize I have that same fear of this trach. I feel like if I nudge it wrong, it will fall out and she'll immediately die. My fear of it is ridiculous, and I'm not sure where it came from. But I realize this is why I can't even WATCH them do a trach change... I feel like somehow I will accidentally interfere, screw something up, and then watch her die.


I'm not a psychologist, but my best guess is it's a control issue. (I'm also terrified of flying.) My assumption is I don't REALLY know how the trach works, or what it's doing, or how the respiratory system actually works... so because I don't know enough, I'm afraid of it (like flying and guns). I've gone 34 years just avoiding things I'm afraid of, but I can't avoid this. So it's a lot to overcome, and like... my kid's life literally depends on me doing it right. No pressure.


Anyway... clearly I have a lot to work on.


Picture today is LIMITED happy baby - early in the morning while reading Peppa <3 And no video "because she was a grump factory" - Reed. So I picked a video from October - just one week before we took her in. Many people have asked if she could talk. She could talk minimally - and you can hear it in the video. (Gabriel already has way more words, and he says them way more clearly.) Also, you can see how she's laying. This is the ONLY way she'd lay the last month. It's a totally normal way for a toddler to lay! But looking back, we realize she started laying with her neck hyper-extended like this around September (sleeping, watching TV, laying on the floor, playing with toys, etc.). We only noticed there was a problem when we tried to physically adjust her neck/head position... but like... who does that to a 2 year old? So we only really saw it while trying to buckle her into her car seat. But even with a sore neck... happy baby!

https://youtu.be/MfWmnF61d9Y
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*********************************************
************** Official Links ***************
(These are here because of scammers)
*********************************************

Julia's *only* pages:
Website: juliaadamscancerfund.org
Facebook: Julia's Fight Against Rare Cancer - Fund
GoFundMe: gofundme.com/juliasfightagainstcancer

Julia's *only* fundraisers:
T-shirts: https://bit.ly/2MQc0lF
Children's Book: https://amzn.to/2CTTN2S
Jewelry: https://etsy.me/2E1mR8i

Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle):
www.naturallywellforlife.com || Coupon code: danaboyd

If you're new and want to know what's going on, my first post about Julia was on October 31st. You can find them all on my Facebook page or Julia's website <3
+ Read More
From Amy-

Julia update (5/24, Friday)

Some good times and some grump times today. This poor girl and her snot =( It was really frustrating her today - they actually stopped the HME breathing sprint early because she was so miserable from the mucus. She has to work a bit harder while on the HME... and it was just too much with constantly coughing and gagging. They sent a sample of her mucus away for testing, just to see if there are any allergens. It's likely the cancer/chemo/meds/trach/inactivity, but they just want to make sure there is nothing they could be doing. They are also adding in a med to help dry her up. Really hoping for some relief there... she is handling this intense chemo like a champ, this is really her only misery.


Speech therapy stopped by and attempted to work on communication. Opinionated baby. She was NOT interested. They pulled out the picture board with all the things she could ask to do, and she just kept pointing at "stop" and waving goodbye. LOL! I shouldn't laugh... but it's kinda funny. She knows what she wants, and it's NOT speech therapy!


So OT came in later and she had a really great time coloring <3 They colored with her for quite a while, and then just left the table for her since she was having such a great time! She colored for HOURS, and dozed off several times mid-scribble. She even has a new Peppa Pig coloring book from a Facebook friend =)


Right now she's... playfully unhappy that Reed's talking to me on the phone instead of paying FULL attention to her, so she keeps chucking her tiger at him and then laughing and waving. Like, actually chucking. And her aim is improving. It's adorable. Oh, and every time Peppa comes back from cartoon break she points and says "Peppa! Peppa!" and wiggles all over the place. Seriously, if we could just get the snot under control... she'd be a happy 2 year old... cancer, surgery, chemo and all.


And I just wanted to mention the trach strings since so many people ask: The trach itself is only about 2 inches long, and it's like... a little flimsy floppy rubber straw with a stopping plate in the middle. All that's in her throat is seriously only an inch or two (I know some people picture it as like, 10 inches of tubing in her throat - not even close!). So this little floppy thing needs to be secured to her neck somehow, and that's generally done with velcro ties (sometimes called strings). These attach to the stopping plate through a hole on either side, and then they wrap tightly around her neck and velcro together. They are tightened so you can only get 1 finger underneath (that's tight!), but they have to be like that so this short trach doesn't fall out. Because while she can breathe without the vent, she would struggle greatly without the trach, as there would be nothing facilitating the air entering/exiting her lungs (and the open hole would interfere with mouth/nose breathing). These ties need to stay dry to protect her skin, so they need to get changed daily, or any time she barfs/drools/snots.


In my trach training, I've now changed the strings several times while someone else holds the trach in place (it's quite the process). My next hurdles are holding the trach while someone else changed the strings, and then a full trach change. I'm nowhere near that.


Picture tonight - Reed looked over around 3am to some commotion and saw this! She got that little leg all the way out of bed and reached for daddy <3 And BOY was she happy with herself! And short video in comments of some coloring. Since it's so short, I added a second short clip of them just being brother & sister. This was August, so she's 20 months (2 months before we brought her in), and fat brother is 9 months <3

https://youtu.be/aq1vRwB99nU
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*********************************************
************** Official Links ***************
(These are here because of scammers)
*********************************************

Julia's *only* pages:
Website: juliaadamscancerfund.org
Facebook: Julia's Fight Against Rare Cancer - Fund
GoFundMe: gofundme.com/juliasfightagainstcancer

Julia's *only* fundraisers:
T-shirts: https://bit.ly/2MQc0lF
Children's Book: https://amzn.to/2CTTN2S
Jewelry: https://etsy.me/2E1mR8i

Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle):
www.naturallywellforlife.com || Coupon code: danaboyd

If you're new and want to know what's going on, my first post about Julia was on October 31st. You can find them all on my Facebook page or Julia's website <3
+ Read More
From Amy-

Julia update (5/23, Thursday)

Snot factory.

That's Julia's new name. It's insane. So. Much. Snot. I don't know where it's all coming from. They still say it's likely a mixture of a bunch of stuff - body's response to chemo, extra fluids, having the trach, and not swallowing. No one is concerned, it's just SO MUCH wiping and suctioning! But even with all that going on, she did so well with her breathing sprint yesterday that they already increased it to 2x a day for 2 hours each. She's improving quickly!


Wound care came in to look at a small blister on her neck, under her trach strings. So much effort is put into NOT getting skin irritation there (since you can't just like... not put the strings on). But Julia is constantly drooling/snotting/barfing onto that area, and even with packing it with gauze and changing the strings constantly... some moisture must have sat there, or maybe the strings were too tight. So they treated it, and decided to loosen the trach strings another 1/2 finger width just to give it some breathing room - now that she has a slightly longer trach, it's not likely to fall out with things not quite as snug.


Little miss Julia didn't sleep at all last night!! She was up until 7am. At some point in the early morning the nurse showed her a new shark tail blanket that a Facebook friend sent <3 Julia thought this was THE BEST THING EVER! She was the happiest squirmy bug when she found out she could put her legs INSIDE the blanket. She kicked and smiled and wiggled all over the place =) I understand there is a DADDY SIZE shark tail as well... but so far Reed hasn't gotten in it (that I know of!) Even the nurse told him how HAPPY it would make Julia to see her daddy in the shark tail next to her. We'll see if we can make it happen!


So this little one slept from about 7-11am and then was up ALL DAY. She was soooo tired and really needed a nap but just wouldn't go to sleep. She was so fussy, and she's quite the fighter when she's tired! Even the nurse commented on Reed's "unwavering patience" when it comes to her. Everyone loves her, but man, she was really trying to push some buttons today. She was just an over-tired 2 year old. But the good news is, she's doing GREAT with full-leg kicks! Huge progress!


In other news, we are looking into all reasonable options to get our home ready for her. We own a log cabin on a pretty steep wooded lot. This is the opposite of a handicap-accessible home. So we're looking into ways to get her from the driveway to the first floor (looking into ramp systems / lift systems), and we're looking into ways to give her a safe and semi-private area on the first floor to live for the foreseeable future. Mostly just trying to create a Gabriel-safe area. Private, quiet, and a place for the home nurse are bonuses at this point. I guess the priority is making it so Gabriel can't like... yank on all her stuff. Our house is not very large, and the floor plan is unusual. We'll make it happen for sure, but I just don't have the brain power to be making these kind of decisions right now. Running on empty. (Apparently my hair is noticeably falling out - according to my doctor. I'm sure it's just stress.) Definitely wish my dad were here... he'd have a solution for everything.


Pic tonight is AWAKE SHARK ATTACK BABY, and a bonus pix of her 1 year ago (of course with her daddy), and Gabriel in his awesome new PJs a Facebook friend sent! They are amazing and soft <3 I tried to get a good video of Julia kicking her feet - she didn't do it quite as much as she was a moment before... but she's progressed so far from a few toe-twitches in February! In comments =)

https://youtu.be/LXRLOria3Cw
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.
*********************************************
************** Official Links ***************
(These are here because of scammers)
*********************************************

Julia's *only* pages:
Website: juliaadamscancerfund.org
Facebook: Julia's Fight Against Rare Cancer - Fund
GoFundMe: gofundme.com/juliasfightagainstcancer

Julia's *only* fundraisers:
T-shirts: https://bit.ly/2MQc0lF
Children's Book: https://amzn.to/2CTTN2S
Jewelry: https://etsy.me/2E1mR8i

Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle):
www.naturallywellforlife.com || Coupon code: danaboyd

If you're new and want to know what's going on, my first post about Julia was on October 31st. You can find them all on my Facebook page or Julia's website <3
+ Read More
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$124,884 of $175,000 goal

Raised by 2,318 people in 6 months
Created November 11, 2018
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