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Julia's Fight Against Rare Cancer

$113,975 of $175,000 goal

Raised by 2,077 people in 4 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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From Amy-
Julia update (3/25, Monday)
Julia had a good day today =) Vitals are improving as she recovers from chemo: heart rate 120s, ET high 30s, BP 88/63. Still no fevers or complications. She vomited once around 6am, and then once about an hour ago (but it was during her bath time when her trach area was getting cleaned - they think she has a super sensitive gag reflex, so they aren't really counting that as a barf).
Child Life visited again today and brought an interactive book. Julia REALLY liked it! I have several interactive books, but I guess I don't have their talent for getting toddlers involved. This Child Life specialist had Julia pointing at things, and smiling, and EVEN TURNING THE PAGES!! She could only move her wrist and forearm a bit, but Julia was 100% turning the pages on her own! She was really enjoying the story. Reed said it was, "About Gorilla's or something stupid" (that's Reed talk for "cute animal story"). So that's so great to see Julia having a good time with a stranger - she SO just wants to be a normal toddler <3
No PT today as they're staggering specialists. So that should be tomorrow. Left arm and both legs continue to be stable (minor movements, definitely there, no noticeable improvement). The nutritionist visited Reed today and had questions that he couldn't answer, so I will meet with her tomorrow to make the formula switch official.
And Julia is COMPLETELY AMUSED by smacking Reed in the face, poking his nose, and fishhooking his mouth. She really thinks its the best thing ever (so of course he lets her do it) and she giggles and giggles =)
Ophthalmology (-- first time I spelled that correctly! --) stopped by to look at her eyes again, just due to Reed seeing the right one behave oddly. They don't believe there is anything wrong. They believe she has nerve damage from the cancer and stroke (which we know about). They believe her eyes are acting normally for 'regaining' functionality. They believe she CAN see out of her right eye (YAY!) and they believe she is favoring her right eye. They explained it like... your brain sends signals to both eyes at the same time... when her eyes get that signal, to like, look to the right, she WANTS her right eye to do the looking. But that eye is slow, and can't move as far, so she struggles to move it. Because she's so focused on moving that one, the left one kind of wigs out and does its own thing (because it's not hindered in any way). So it looks like her eyes are just spasming all crazy, but that doesn't appear to be the case. She's just working really hard at using her right eye. They don't know why she's favoring it, and they don't know the quality of her eyesight. But they are sure she CAN see out of her right eye, and seems to focus with that one first. They tried to check for pupil response but she HATES IT. HATES HATE HATES. So they said, because there are no immediate concerns about brain pressure [which is what the eye checks were for in the first place], to just stop checking for pupil reaction for the time being. She hates it, and she appears to be improving... so unless there is a concern, just stop shining bright lights in there. So now they might check once a week just to see if there's an improvement, rather than every few hours. I'm good with that.
The oncology team also stopped in today and they are "very pleased with her remarkable improvement". They can't guarantee anything of course... not even a little... but it is SO AMAZING TO HEAR THEM SAY IT'S 'REMARKABLE'. OMGosh. I used to look at this team as like... death eaters. That's what I called them in my head. The oncology team and PACT team just like, floated into her room as a morbid group, and always had awful, horrible, depressing news. It was never good. I just imagined them floating around from room to room telling people how their kids were going to die. No joke. So to know they are looking at her as REMARKABLE just makes me so happy and optimistic!
Quick update on me: I saw a GI specialist today. Based on symptoms, he does not think it's anything related to my stomach (despite the location of pain), so he is not going to do an endoscopy. He also doesn't believe it's a gallbladder issue, due to side the pain is on and how my gallbladder looks on my scans, BUT he said it's possible to have gallbladder issues with no stones, and I do meet the criteria for 'most likely to have issues' (woman, 30s, has kids, overweight). So he wrote a script for a HIDA scan (as some Facebook friends suggested). He said he doesn't expect it to come back positive, but if it does, he "wouldn't be surprised". His best guess is a herniated disc. He says based on how the pain is radiating, and that it gets worse when I move. Nothing suggests an ulcer, and the ulcer meds I'm taking aren't doing anything at all to help. I thought he was crazy for suggesting disc, since it feels so internal. But I went to my chiropractor and he agreed, and showed me all the organs that would get deferred pain from a disc issue in my mid back... it's all the organs that hurt (stomach, pancreas, liver, kidneys). It's hard to believe a pain further on my side could be from my spine... but I did have an ectopic pregnancy rupture (my whole fallopian tube exploded) and I felt nothing down there, but HORRIBLE pain in my right shoulder... so I guess it can happen. I just feel like if you can pinpoint the pain, the issue should be right there! I guess it would take an MRI to see it. So in the meanwhile, I'm seeing him for adjustments, I'll continue to take the ulcer medicine for 2 weeks, and I'll get on the schedule for a HIDA scan.
Alright, back to Julia. I was talking to someone today about everything Julia has been through. So I thought for tonight's update I'd "quickly" go through all my posts since October 31st and do a quick timeline or Julia's new Facebook friends. LOL. This poor girl has been through SO MUCH... I spent 1.5 hours and only read through Nov and Dec. So... that's on hold for another night this week. I'd love to get everyone caught up... but it took way to long. And WOW has this poor girl been through stuff. I had blocked most of it out. I'm just getting to early January where we got the "days to live" news. It's not as traumatic as I thought it would be, re-reading everything... because LOOK AT HER!! She's just doing SO WELL!!
Reed sent me this picture of her trying to do RASPBERRIES AGAIN! She loooooved doing raspberries and slobbering all over the place before she got sick. She doesn't have the air passing through her mouth to make the ... like, raspberry motion. But she sticks her tongue out like she's trying and nods 'yes' to "are you doing raspberries?" Super sweet to see <3 <3 <3 (And I know I have a picture of her picking raspberries last summer, and thought it would be cute to include... but while looking, I found this very sweet picture of her and my dad discussing where he was going to build her tire swing. This was in between my dad's 2nd and 3rd brain surgeries (2 weeks apart). He loved Julia so much <3 I hope someone can help me get a tire swing there for my kiddos in honor of my dad.
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From Amy-

Julia's update (3/24, Sunday)

Julia slept all day, and finally started waking up around 6pm. Apparently around 4am there was a "controlled emergency" as Reed called it. He said I would have fainted or ran out of the room. Apparently Julia was just getting a regular trach string change, but shortly after that was done, she was unable to breathe. She was visually in distress, all her alarms started going off, she was de-sating (oxygen saturation). They tried suctioning and putting her on 100% oxygen but neither helped. So they quickly did a full trach change and things calmed down. They have no idea what happened. Their best guess was some sort of mucus snot ball clogged the trach, and just got dislodged when they changed it. But Reed said seeing her doing that was pretty alarming... with her face all red and veiny...

And I just learned this RIGHT NOW, while I'm here visiting. Just before, I finally got up the guts to WATCH a string change. They sat her up to do it (the other nurses had her laying down), and it seemed to go better. She fussed a little, but she wasn't gasping or gagging and it was pretty OK. And then I watched the nurse clean her stoma. I didn't really SEE anything, but I wasn't avoiding it... it just never came in view. Anyway, so I finally thought I could take baby steps to making this happen, and then Reed tells me about this horrible experience earlier in the morning after string changes! I can only imagine that happening when I'M the one caring for her...

So I guess after that excitement, she and Reed finally got to sleep around 7am and slept most of the day. Right now she's taking a cat nap, and her vitals are great: heart rate 120s, ET high 30s, BP 109/70.

She pretty much hates everything Charlene and I picked out for her to touch and feel (mom win). She very clearly shakes her head NO to everything we offer... and we picked out some cool stuff! Some squishy worms, and soft spikey things, and slimey things, and fat unicorns... not interested one bit. She did seem to enjoy an large numbers board we got - just a like, half-poster size board with the numbers 1-12 on it. She didn't respond great to being asked where the numbers are, but she... half responded I guess. Before she got sick, she could find 1-10, so I can't tell if she was just really tired, or maybe forgot a bit. But she did enjoy me holding her elbow up and her pointing to different numbers. So at least that one seems like a keeper. (And she very excitedly pointed to "Julia" (her belly), "leg", "knee", and "mommy" - all things she can touch without really moving her right arm =)

Oh, and Reed started seeing her right eye (bad eye) act.... strange. It appeared to be moving independently of the left. Like, until now, her right eye would appear to try to move along with her left (it just could move a much smaller distance and would like, pop back to center). But today Reed believed he saw it moving a completely different direction than the left eye. So he told the doctor at rounds and they will have the ophthalmologist come back this week and take a look. But because there was a visual symptom change, they did another head CT to make sure nothing neurological was going on, and everything was totally fine (obviously except the existing problems). But they found nothing alarming that would suggest the optic nerve being newly squeezed, or a brain bleed, or anything like that.

And in POSSIBLE GOOD NEWS, like... fingers crossed she wasn't seeing something... the nurse today said she believes she saw Julia's right pupil react the TINIEST BIT to light! She can't be sure (but that's usually how all her other improvements started). But this would be the first pupil response out of that eye since December - it was the first thing to go. So I'm hoping the weird eyeball movement might just be pressure (from the cancer) on that optic nerve being released even further - allowing the pupil to start to react, and making the eyeball behave oddly as it regains some functionality. Hopefully more updates in this department over the next week!

In chemo news - two days ago her blood counts were at zero, today they were 8,000. So they are finally on the way back up (she should start feeling better in a few days!) and they were able to stop the extra medication that assists in early recovery.

We have a consult with nutrition tomorrow to (finally) make the formula switch. Super annoyed it has taken so long! And we also asked about the speaking valve for the trach, so Speech Therapy will consult with us this week to see what steps they might be able to take to make that happen =)

Pic tonight is Julia being a TODDLER! She's been escaping her hand braces minutes after they're put on now =) She doesn't like them and wants nothing to do with them! It's kind of adorable to see her waving her hands around when they're supposed to be in her splints <3 <3

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*********************************************
************** Official Links ***************
(These are here because of scammers)
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Julia's *only* website:
juliaadamscancerfund.org
Julia's *only" Facebook page:
facebook.com/JuliaAdamsCancerFund
Julia's *only* GoFundMe:
gofundme.com/juliasfightagainstcancer
Julia's *only* official fundraisers:
T-shirts - https://bit.ly/2MQc0lF | 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 (3/23 Saturday)

Julia had a good day today. Really tired - she could stay awake for maybe 30 minutes at a time, but then quickly fell back asleep. Her vitals have been great: heart rate 130s, ET mid 30s, BP 93/57. They haven't seen traces of blood in her urine in many days now, so they're happy with how that medicine worked and aren't concerned at this point.

As you can see in the pic, they got her into her stroller for the FIRST TIME since October 30th; so 144 days!! The transition was rough. It took several nurses to move her with all her connections, and she didn't enjoy it. She was upset for a while once situated, but after she calmed down, she seemed very content. They didn't take her for a walk (mostly because she was still connected to so much and her counts are at zero), so they were really just testing to see how she'd do seated up like that. Reed rocked her back and forth (first time being rocked in 128 days(!) - since her surgery.) She was out in minutes =) ...Until she gagged on a snot ball and puked all over herself ...and then that whole thing made her poop, which exploded out the sides of her diaper. SO, she got a bath, all cleaned up, tucked into bed... and promptly went to sleep =) That was the longest nap of the day at several hours.

Today she raised her LEFT arm at the elbow several times! Which is an AWESOME new movement! She seemed to do it when she was aggravated (like during diaper changes). She's definitely weaker on that side, and has less control, but she's still getting better.

And a few random mentions. Her right eye is still not focusing or reacting to light in any way. It does seem to move a bit like it's trying to follow the left eye, but it can only move a short distance, and it seems to lose itself and come back to the center where it likes to rest. Some pictures recently made it seem like she was focusing with it, but really it was just the angle. In other pictures it's more evident that she can't really move it. But it's getting better, not worse, so we're still hopeful that a little (or all?) functionality will return in time.

The trach is still in because she's still gets ventilator assistance at night (when she's extra tired - especially while in the thick of chemo). She's not currently getting any extra oxygen, nor is the vent breathing for her. But it detects when SHE initiates a breath, and it gives her some extra pressure support by blowing air down into her lungs. This just makes it easier for her to breathe when she's tired. If this assistance weren't there, and she were too tired, you'd see her clearly struggle and retract in with each breath. So ALL the vent is doing right now, is that little bit of pressure support in the evenings. Since we're in a new unit, I will ask what the plan is as far as attempting to cap the trach / disconnect her from the vent / possibly get her talking. But in the long run, I believe they want her to be 100% vent-free for 3 months before they even consider removing the trach.

And I came across the comment of someone who is a recent follower of Julia's story (Hi! - I know there are many of you <3 <3 ) and they asked who the people I keep mentioning are: I'm her mom (Amy), her dad is Reed, and her 1 year old brother is Gabriel (aka Goomba or Bulldozer). Jonathan is Reed's brother, and Charlene is Jonathan's wife. They are currently caring for Gabriel full time, and have been since October 30th when we took Julia to the ER. They have two older kids who are the best cousins to Gabriel <3

Oh, and Reed just sent an adorable video (in the comments). He asked her "Where's Julia?" and she gave a VERY confident point to her own belly. It's so wonderful seeing her be a normal toddler, despite how miserable she must feel! <3 <3 <3

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*********************************************
************** Official Links ***************
(These are here because of scammers)
*********************************************

Julia's *only* website:
juliaadamscancerfund.org
Julia's *only" Facebook page:
facebook.com/JuliaAdamsCancerFund
Julia's *only* GoFundMe:
gofundme.com/juliasfightagainstcancer
Julia's *only* official fundraisers:
T-shirts - https://bit.ly/2MQc0lF | 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 (3/22, Friday)

Julia had an uneventful day. She threw up a few times in the morning, but Reed thinks it was really just gagging on snot, rather than formula/chemo. They suctioned a lot of mucus out and then she's been OK the rest of the day. They also stopped the extra fluids for the chemo, so they hope the excess mucus slows down. Heart rate 130s, ET high 30s, BP 119.70.

They're trying to get her on a better sleep schedule, so they switched her bath-time routine to the evening. So she just got her whole bath (she gets chilly and shivers!) and now she's zonked out. Until her trach strings get changed shortly.

PT dropped off a few therapy toys, but no session today. Charlene and I brought down some stuff as well, but Julia was very minimally interested. She shook her head no to everything, and really didn't want to do much of anything. Her counts should be at zero now, so she probably just wants to sleep and not be bothered.

Oh, Charlene did read her her FAVORITE book "Don't Push The Button", and all by herself, Julia pushed the button on the pages! She remembered what to do, and on the page that said "Push it twice!" she pushed it two times =) She really did enjoy that part at least.

I'm working with some experts who specifically help dose RSO for children, and I'm learning quite a bit. Right now we just buy the stuff and give it to her, but apparently we ca be doing better. So over the next week or so, we'll be adjusting what it's mixed with (and hopefully how it tastes!) There is also a THC/CBD topical we're going to make to replace just the CBD we're putting on her skin. I was never confident we were doing this the right way, so it's nice to get this assistance.

I have met SO MANY people who just want to help, and they've continued to donate their time and knowledge over and over again. In return I try to share everything I can when I get linked to another child's page (which unfortunately happens a lot).

Right now Charlene is watching the nurses change Julia's trach strings... it's awful. OMG. It's just constant gagging, and alarms going off. Now she thew up all over the place so they need to take them off and start again. Julia hates this... I'm not even watching. I'm hiding behind my laptop here while Charlene holds her hand. I'm never going to get my credits. It's hard enough to do it because I'm grossed out, but to know Julia hates it, and she cries and squirms and gags... she turns bright red, and has a death-grip on Charlene's hand. Ugh. I want to leave this room so bad. I don't know how Charlene does it. Give me a confrontation any day... or a legal battle... or tax issues... anything besides this medical stuff. I'm just not the right person for the job.

Ugh. I'm sick to my stomach now. Just listening to that. I can't even focus on the rest of the post.

I'm going to try to find a cute picture to post and be done with the night! The pic with her in the bracelets is right after the trach change. She's exhausted from the ordeal.

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*********************************************
************** Official Links ***************
(These are here because of scammers)
*********************************************

Julia's *only* website:
juliaadamscancerfund.org
Julia's *only" Facebook page:
facebook.com/JuliaAdamsCancerFund
Julia's *only* GoFundMe:
gofundme.com/juliasfightagainstcancer
Julia's *only* official fundraisers:
T-shirts - https://bit.ly/2MQc0lF | 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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Raised by 2,077 people in 4 months
Created November 11, 2018
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