Julia's Fight Against Rare Cancer

$80,130 of $125,000 goal

Raised by 1,409 people in 2 months
Created November 11, 2018
Alicia McBride
on behalf of Amy Largent
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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Update 72
Posted by Alicia McBride
1 day ago
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From Amy-

Julia update (1/22, Tuesday)

First day of chemo today. The first dose was around 6pm. They went in through the port in her chest that they had put in two months ago. I guess the treatment is 3 different medications, 4 hours apart, and that makes up one daily dose. Within 45 minutes of the first medicine, she spiked a 107 fever. Tylenol immediately brought it down to 99. They watch for these things, but it's still terrifying. Her body knows what we're putting in it is bad... but it's better than the cancer that's killing her =( If we had any leeway, we'd hold off on such aggressive chemo. But with the pressure on her brain stem, her brain could stop telling her body to breathe at any minute.

Vitals at last check: Heart rate 137 (hovering in the 140s today); ET 80; Blood Pressure 150/112. She had her full labs done, and the doctor believes the ET is reporting higher than it actually is (he explained this could be due to some part of her trach circulating extra CO2). He said her blood work is not presenting the issues that they would normally expect from someone having such a high ET for so long - she's still fully oxygenated and her blood PH is normal.

They stopped her sedation medication, and added an IV of Ativan to help keep her calm and relaxed. She's also now on extra fluids and optimal nutrients for chemo.

Really no alertness out of her today. She's barely opened her eyes any (her face is super puffy), though she got some cartoons just in case she was listening. She showed a little agitation during her trach/collar care, but that's about it. Her alternative treatment continues around the clock, and we're looking at adding a few new ones - we just need to make sure there are no known major interactions with anything she's already on.

I guess that's it. We'll know how she reacts to the full chemo treatment by tomorrow... hopefully the one-time crazy fever is the only alarming side effect.

***
*** I'll just add this here since there are already a few questions: What is ET:

From Google, who explains it better than we can: Waveform capnography represents the amount of carbon dioxide (CO2) in exhaled air, which assesses ventilation. It consists of a number and a graph. The number is capnometry, which is the partial pressure of CO2 detected at the end of exhalation. This is end-tidal CO2 (ETCO2) which is normally 35-45 mm Hg. --

It's one of the stats they're concerned about massive pressure on the brain stem affecting (essentially the ability to breathe).
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Update 71
Posted by Alicia McBride
1 day ago
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From Amy-

Julia update (1/21, Monday)

One last quiet day for Julia before the war begins. That's what it feels like. Tomorrow she starts an extremely aggressive chemo - her last shot at reversing this cancer. Five days of IV chemo, followed by a day of 'recovery booster', and then we wait. This drug combination has worked for her type of cancer in the past, but I don't know that it's ever been used at this advanced stage. We're continuing all alternative therapies along with this treatment.

Vitals today: Heart rate has been higher than normal, 140s-160s. Still no one believes she's in pain, because she can still make it clear on her face when she's unhappy. But when her heart rate stays high for an unknown reason, an extra dose of pain meds does bring it down. That could suggest discomfort or irritation. ET in the mid 80s today. Fewer episodes of sporadic breathing today. BP continues to hover high at 178/128. Her meds are being adjusted a bit in preparation for chemo. Her BP medication is being switched to something more chemo-friendly, and I believe she's coming off the Morphine. I'm not sure what they're switching to, but I'm positive pain management remains at the top of their list.

No real alertness out of her today. She did crack her eye open for just a few seconds, and we took that as a request for cartoons. So she at least got to rest listening to her favorite nursery rhymes. She had visitors today. Her cousin braided her hair, and her brother pulled on her wires.

So that's really it. Tomorrow they start blasting her with chemo. I'm thankful she's asleep and no one believes she's very aware. They'll give all the typical meds to help soften the unpleasant side effects. I expect her to lose her pretty hair. Though so much of her head has been shaved for surgeries that we're pretty much halfway there already.

We hope she holds out a few days and gives this a shot - it's the best the medical community has to fight chordoma. We're hoping she doesn't get an infection. We're hoping the shunt continues to manage the swelling in her brain. We're hoping she responds.

--

I also want to say thank you (again) for the constant stream of love. Prayers, cards, artwork, research, suggestions, gifts... it hasn't stopped since her diagnosis, and it's really unbelievable how many people care and want to show their support for this little girl. My mind is in a constant state of extreme stress, and I'm almost in a daze when I go through my mail (still legal stuff regarding my dad and the business we ran; medical bills for Julia [with all the procedures "her plan doesn't cover"]; health insurance forms to handle the medical bills, etc.)

In the midst of all of that, we've received so many thoughtful things from people... and I don't even know who to thank. I have this beautiful locket with Julia's picture that I haven't taken off since it showed up, we've received colored pictures and artwork from kids, I've been filling up my car with gas completely off of Wawa gift cards, we've been eating home-cooked meals, snacks have shown up at the hospital, stuffed animals, blankets, home-made hats in Julia's favorite colors. Recently we've even received products from you that you really believe in. I know these cost money, and they've been sent for free... in hopes of doing everything possible to help this two year old fight cancer.

... and no one is getting properly thanked because I can't put 2 and 2 together in my head right now. So thank you. Your over-generosity is going unrecognized because I'm so frazzled. I WANT to tag all of you, and share with everyone what thoughtful things you've done for Julia. But I stare at this big pile of envelopes... cards, mail, forms, gifts, bills... and I can't remember who sent what.

So thank you for everything you're doing. Thank you for following her story even though it's extremely depressing. Thank you for the constant messages even though now there are too many for me to respond to. Most importantly, thank you for the prayers. She needs a miracle, and we're trying everything we can to give her one.
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Update 70
Posted by Alicia McBride
2 days ago
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From Amy-

Julia update (1/20, Sunday)

Vitals: Heart rate in the 120s; ET a bit worse today, in the low-mid 80s; BP 170-124. She's only opened her left eye twice today, and didn't focus on anything. We gave her cartoons but she didn't even stay with us long enough to watch. Her left eye is starting to not respond to neurological checks as well. The pupil still shrinks... but noticeably slower. (The right eye hasn't responded at all in weeks, and the pupil remains fully dilated - now they just look under the lid to make sure there are no visible changes.)

It is so sad to see our daughter slowly fade away. She lost her ability to talk when the trach was put in; then over two weeks she lost the ability to move her body - starting with the stroke then progressed with the cancer; and now she seems to be losing the last of her sight. I can't believe just three months ago she was bouncing around asking for Peppermint Patties.

I do not like the one doctor there, the same one who was a jerk last week. Reed had a very hard time getting them to agree on action today. He (and the team with him) really just seemed kind of OK to "pass the buck" while Julia lays there dying. Reed asked what needed to happen to get something moving - for any action to be taken - and they just kind of did nothing but give excuses and suggested he call our other doctor who isn't there right now. I can't believe this guy holds the lives of children in his hands.

I called OUR oncologist, and she was much more receptive to our desire to try something, now that Julia has surpassed her "days to live" sentence. She had reviewed her most recent MRI and had been looking into the medications we asked about. A few are not viable because Julia's tumor does not have certain mutations. But one is viable, and it's one of the ones she originally wanted to start her on (this is one of the drugs mentioned by the New Zealand family). I expressed how unhappy we are at the constant delays. Our doctor said administering this medication during an active brain infection, or during her strokes, would have likely been fatal. And then the cancer seemed to not be growing... so they thought giving Julia a week to heal was reasonable. She repeated what we've heard all along - that Julia has faced complication after complication, and absolutely nothing about her situation has been normal, right down to the extremely rare cancer. We very much like this doctor, and we do believe she cares about Julia and wants to try... regardless of how much of a long shot it is.

Even with the alternative treatments we're doing, the tumor is still advancing. Regardless of how much I want to believe in these options, they're just not enough against her aggressive cancer this late in the game. Most tumors have leeway with their location. They can be let to swell and advance, while medication combos are played with and options are tried. That's not the case when it's wrapped around a brain stem. We will keep administering them though, with an increase in dose.

We agreed with our oncologist that tomorrow Julia will get a full work-up done: labs, scans, etc., to get a starting point for the chemo. Her chemo will (finally) start first thing Tuesday. This is a very hard hitting chemo. It's a 5 day infusion, with some sort of "healing booster" on the 6th day. Likelihood of complications are high. 85%. These include infections and low blood counts (requiring transfusions).

We don't like those numbers... but we're out of options. We can physically see Julia dying. She's survived infections and strokes already... we are hoping she can fight through this. We want her to hold on long enough to give the chemo a chance to shrink something. This is the drug that has worked miracles in both the families who contacted us. I'm just afraid we're too late.
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Update 69
Posted by Alicia McBride
3 days ago
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From Amy-

Julia update (1/19, Saturday)

We spoke with the oncologist about the MRI results. First thing: the tumor is still growing, and the cancer is still spreading - which was expected. However, the rate has slowed down a shocking amount, and the doctors can't explain why.

Three weeks ago, Julia had MRIs six days apart, the latter MRI ordered because she stopped using her right hand. The growth between those two MRIs was insane - the tumor had gone from barely touching her spine to wrapping completely around the brain stem. Due to this extremely aggressive growth rate, we were told she had days to live and nothing left could be done. The very next day, Reed and I started aggressively treating her with alternative medicines that have many success stories for cancer, especially brain tumors. Now two weeks have gone by, and the current MRI *only* shows a growth rate of roughly 5% (visually estimated).

So to be clear, we're still headed in the wrong direction, and the pressure being placed on her brain stem is dangerous - possibly fatal at any moment. HOWEVER, the doctors were doing absolutely nothing to treat her cancer; only Reed was. And this treatment appears to have put a major halt on one of the fastest progressing cancers there is. In the interest of not holding potentially life-saving information back from anyone currently fighting the fight, we have been using a high dose of the best-quality CBD oil we can find, as well as a high dose of Rick Simpson Oil, which is high-THC cannabis oil. When my dad was fighting metastatic melanoma (spread to the brain) over the summer, we had started looking into the validity of cancer-curing claims made by CBD/THC users. He was interested in trying it, but his health declined too rapidly and he never got the chance. As soon as we were told there were no more medical options for Julia, we knew we had to start right where we left off with my dad... just to see.

Of course we can't be 100% sure the CBD/RSO is what did it... but nothing else was being done, and the reduction in growth rate was shocking. (I also need to say I know *absolutely nothing* about either of these treatments, and we really did a rush research job and kind of shot in the dark with dosing a 2 year old... so I don't have much to offer in the way of assistance.) But I wanted to share that immediately because I've gotten so many messages from people fighting their own cancer, or a family member's cancer, and wanting to know what we were using. So from someone who has never even held a cigarette, and can't remember the last time I had alcohol... if I found out I had cancer I would immediately start medicinal doses of both CBD and RSO... I can only imagine the power this could potentially have against less-aggressive cancers.

As far as chemo; the doctors have looked into the two drugs suggested by my angel in New Zealand. They found the one does not cause swelling, and it is now on the table. We will be talking with them tomorrow and making a final decision on whether or not to start. The CBD/RSO will continue.

As far as Julia's vitals... she's in a very delicate situation. Her heart rate is currently 117, but has been in the 140s much of the day. Her ET is steady around 70. Her blood pressure is still high at 174/133. It responds mildly to the blood pressure medicine, so they're checking with the pharmacy to see if they can divide the dose into 2x a day to keep it more steady. She's also on a nerve pain medication now just in case, though they still do not believe she is in pain other than when she's moved. The "new thing" she's doing is going through periods of about 15 minutes where she doesn't take many breaths. She's generally doing 15-20 breaths per minute, but now sometimes she will go down to 6-7. This sets off all the alarms and her ET goes up into the high 90s. They suction her even if she doesn't sound junky; sometimes it helps, sometimes it doesn't. So far her breathing just kind of goes back to normal on it's own. But it's terrifying sitting here watching her through these moments...wondering if now's the time her body is going to give out.

So that's where we stand. Cancer is still growing, as expected. Possible amazing cancer-growth-reduction qualities of CBD/RSO. Discussing starting chemo tomorrow. Hoping Julia can hold on long enough to really try to fight this.
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$80,130 of $125,000 goal

Raised by 1,409 people in 2 months
Created November 11, 2018
Alicia McBride
on behalf of Amy Largent
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