FAQ

Frequently Asked Questions

Diagnosis

What is Julia diagnosed with?


Julia has Clival Chordoma - a very rare and deadly form of bone/brain cancer (it's technically a bone cancer, but it often (and has) spread to her brain). This is already a rare cancer, but it's almost unheard of in children. Prognosis is poor.




How long has Julia been in the hospital?


We took Julia to the ER on October 30th, 2018. She has been at CHOP (Children's Hospital of Philadelphia) since.




NOV 2019: What happened?


After an initial response to treatment with tumor shrinkage last spring, and then stability since, her cancer growth has 'exploded' in the past 4 weeks. Her MRI in September showed complete stability, the MRI last week showed excessive growth around her brain stem, part way down her spine, and in the surrounding membranes.





Chemo Treatment Plan

What is the current chemo treatment plan?


**UPDATED November 2019 - After an initial response to treatment with tumor shrinkage last spring, and then stability since, her cancer growth has 'exploded' in the past 4 weeks. Her MRI in September showed complete stability, the MRI last week showed excessive growth around her brain stem, part way down her spine, and in the surrounding membranes.
As far as curing this cancer, we are out of options. That hasn't changed. What her oncology team is now offering is palliative chemo, to extend her life at hopefully a high quality. This extension might be weeks or months. There are one or two case studies that show an 'exceptional response' to these chemos, but they would be considered a miracle. Of course we are hoping for that. But as far as traditional cancer treatments: effective chemo, radiation, surgery, immunotherapy; she has no curative options. Can you go back to IV chemo? -- No. If it didn't work by the time it did, it would not have worked. Given their experience, the cancer resistance / growth would have happened whether or not she stayed on it. That is a risk with chemo. Her body has had enough hard drugs, if we keep pushing, we risk the chemo killing her before the cancer does. It was a long shot, and it only bought us time. What is the current chemo treatment plan? -- "Plan" is used loosely. We started oral Gleevec (Imatinib). This has been shown effective in like, one case study. But side effects are minimal and it should be well-tolerated. Depending on how she does, we might add in, or alternative with, oral Etoposide. (Her previous IV chemo combo was Etoposide / Ifosfamide.) Depending on tolerance there, we might add a drug that inhibits new pathways from being built (tumors need those)... there is a fancy word for that type of medicine but it's escaping me. (To the 0.2% of readers who feel compelled to share their hatred of chemo: yes, I'm aware of the side effects.) SEPTEMBER 2019: Julia finished her 12th and final round of chemo in September (yay!) At this point, the plan is to watch her for 3 months post-treatment and see what happens with the tumor (hopefully no growth at all). Why a specific amount of rounds of chemo? Can you stop now or add more? --Cancer cells wake up in stages. Chemo attacks the division process of the cell, so if the cell is not actively dividing, then chemo won't kill it. Research is done to determine how many rounds of chemo it takes to effectively kill all the cells as they wake up and try to divide. Stopping early will have possibly made all the chemo for nothing, as just a handful of cancer cells are all it takes to grow out of control. After 11 rounds of chemo, we can't sell Julia short and not complete the 12th if that's what case studies show is effective for her cancer. Chemo IS poison. But the hope is that it kills the bad cells before the good cells. This chemo has worked to put other kids with her exact cancer in a state of NED (No Evidence of Disease). So as much as I hate the chemo, we need to see it out.




What chemotherapy drug was Julia on?


****UPDATED NOVEMBER 2019:
Can you go back to IV chemo?
-- No. If it didn't work by the time it did, it would not have worked. Given their experience, the cancer resistance / growth would have happened whether or not she stayed on it. That is a risk with chemo. Her body has had enough hard drugs, if we keep pushing, we risk the chemo killing her before the cancer does. It was a long shot, and it only bought us time. What is the current chemo treatment plan? -- "Plan" is used loosely. We started oral Gleevec (Imatinib). This has been shown effective in like, one case study. But side effects are minimal and it should be well-tolerated. Depending on how she does, we might add in, or alternative with, oral Etoposide. (Her previous IV chemo combo was Etoposide / Ifosfamide.) Depending on tolerance there, we might add a drug that inhibits new pathways from being built (tumors need those)... there is a fancy word for that type of medicine but it's escaping me. (To the 0.2% of readers who feel compelled to share their hatred of chemo: yes, I'm aware of the side effects.) SEPTEMBER 2019:

She was on Etoposide and Ifosfamide.




NOV 2019 Why was chemo not recommended at our meeting / why were we told we were out of options?


As far as curing this cancer, we are out of options. That hasn't changed. What her oncology team is now offering is palliative chemo, to extend her life at hopefully a high quality. This extension might be weeks or months. There are one or two case studies that show an 'exceptional response' to these chemos, but they would be considered a miracle. Of course we are hoping for that. But as far as traditional cancer treatments: effective chemo, radiation, surgery, immunotherapy; she has no curative options.




Can you go back to IV chemo?


**** UPDATED NOVEMBER 2019: No. If it didn't work by the time it did, it would not have worked. Given their experience, the cancer resistance / growth would have happened whether or not she stayed on it. That is a risk with chemo. Her body has had enough hard drugs, if we keep pushing, we risk the chemo killing her before the cancer does. It was a long shot, and it only bought us time.




Can Julia try immunotherapy?


No. Apparently it doesn't work on her kind of cancer. They create immunotherapies to target specific cells (ideally cancer cells) and it switches on their "I'm bad" button that every cell naturally has. (Actually, the problem with cancer is that this "I'm bad - kill me" button is switched OFF, so your immune system doesn't kill it like it should). Anyway, they have not developed an immunotherapy that can differentiate between her cancer cells and her brain cells, since they're so similar. So it would turn on the "I'm bad - kill me" button in her brain cells as well as the cancer cells. Apparently it's phenomenal in detecting ONLY melanoma cells, but they're not quite there for brain cancers yet




Have you looked into proton therapy for this tumor?


Yes, in fact, one of the best proton therapy centers is across the street from CHOP. Julia is not a candidate due to the location of the tumor in relation to her metal spinal fusion hardware. It makes the beam bounce.





Alternative Therapies

What alternative therapies are you giving her?


**** UPDATED November 2019: What is currently being tried? -- Since January, Julia has been on high doses of CBD and RSO (THC). She has a topical that includes these items and some essential oils. Originally we were using essential oils but oncology gave us some compelling evidence that they could interfere with chemo. We have not examined further. Many things have been sent to us that we have not tried due to lack of research. SEPTEMBER 2019:
*** Mandatory I-Am-Not-A-Doctor disclaimer. We are using alternative treatments for Julia because we were given no choice - we were told she had only days to live and treatment had stopped. She was put on hospice so we started treating out of pure desperation. I am not an expert on any of these treatments, so PLEASE do your own research and talk to your doctor before beginning any of them. I am happy to provide any information I have, but please keep in mind it comes mostly from Googling *** We're currently giving Julia CBD Oil, Rick Simpson Oil (THC), and she's lying on a PEMF Therapy Mat pretty much all day long. I buy her CBD oil from this site: https://www.cbdbiocare.com/full-spectrum-cbd-oil.html (coupon code: danaboyd), and purchase the 3500mg bottles. Julia is currently getting 600mg a day, split up evenly throughout the day. We ramped her up pretty quickly from about 200mg a day to 800mg a day over about 2 weeks. She was in coma, so we have no idea how she "handled it" (fine as far as we could tell). We stayed at 800mg for many months, and more recently backed down to 600mg. This is a huge dose - way above any "recommended dose" on the bottle. Rick Simpson Oil, or RSO, is a cannabis product contining high amounts of THC. Acquisition depends on how legal marijuana is in your state. A few states are completely legal (medically and recreationally), a few states are medical only - all with different "qualifying conditions", and still many states don't consider it legal at al... which sucks. If you can get a medical marijuana card, Rick Simpson Oil is often purchasable in a dispensary - I understand more and more are starting to carry it. It comes out in a tar-like substance, and is often dosed as "grain of rice size". We ramped Julia up quickly from 3 "1/2 grain of rice" a day to 4 full grains a day, over about 2 weeks. Again, she was in coma so we have no idea how it affected her. This will absolutely make someone high. I understand kids' bodies get used to the high pretty quickly (and CBD helps to naturally counter the high). Julia currently gets about 6 "grain of rice" sizes a day. We followed the typical "Rick Simpson Cancer Protocol" that can be found online. She's also laying on a PEMF Therapy Mat that I know very little about. Julia's uncle owns it, and insisted she lay on it. She was on it 24/7 to start, and in May we bought her her own. Now she's on it maybe 12+ hours a day. Her uncle Jonathan is HAPPY to talk to anyone about this Mat - how to get it, comparisons, what settings to use, benefits etc. Get in touch with me for questions. Therapies we've considered but have not tried include: essential oils, vitamin C infusion, and dog dewormer (seriously). They are on the list if Julia stops progressing.

Please contact me through my personal Facebook page @amy.largent.50 if you need ANY information. I am very happy to share what I know.




Have you tried....


**** UPDATED November 2019: We have lookined into the following already... Radiation (all kinds), immunotherapy, chemo, clinical trials (tazemetostat), specific plants/herbs (dandelion, sour soup, ginger root, sour honey, wheat grass, red clover, cloves, specific honeys, oil leaf, black walnut, lemon, crabapple, mistletoe, asparagus, mushrooms, curcumin), dog dewormer, neoplastins, essential oils (all kinds), Indian mud, colloidal silver, polio virus / measles therapy, coley's fluid, high dose vitamin C, oils (black seed, hemp), essiac tea, other teas, redox signaling molecules, nanotherapy, breast milk, plant-based diet, gene therapy, coffee enemas, specific miracle / holistic doctors, fasting, Avastin infusions, juicing (all kinds), herbal activators, T cells, transfer factors, resonant frequencies, snake venom, CBD / CBG / RSO / THC, Keytruda, oxygen therapy, Ashwa, sodium bicarbonate, alkaline diet, starvation diet, off-label drugs, anti-fungal meds, B17 / apricot seeds, Vitamin D3, lower insulin before chemo, zinc therapy. Are you open to suggestions? -- Absolutely. Though entire books to read, documentaries to watch, and "things to Google" don't really help. Also, "Did you know (insert easy solution here) cures cancer?" may be well-intentioned, but it isn't useful. It's over-simplified and for every one instance of it working, there are likely thousands of it not. If you have access to some sort of protocol with a proven track record of success (ideally with her cancer), please send it. The more scientific and less sensationalized, the better. If it's in all caps followed by "!!!", I'm not interested. SEPTEMBER 2019: We've either tried it or considered it. I promise. We've gotten SO MANY recommendations and suggestions (thank you!) for fighting her cancer. I just lost my dad to cancer last fall, and over the summer I had nothing but time to research - and I researched a ton. So we're currently doing what we feel has a lot of merit for cancer fighting. We have other options to possibly add in the future.




Are alternatives an option?


To us, yes. To CHOP, TBD. We are certainly researching. Please see list of what's been suggested at bottom.




Are you open to suggestions?


Absolutely. Though entire books to read, documentaries to watch, and "things to Google" don't really help. Also, "Did you know (insert easy solution here) cures cancer?" may be well-intentioned, but it isn't useful. It's over-simplified and for every one instance of it working, there are likely thousands of it not. If you have access to some sort of protocol with a proven track record of success (ideally with her cancer), please send it. The more scientific and less sensationalized, the better. If it's in all caps followed by "!!!", I'm not interested.




Will you work with CHOP on alternatives?


We'd like to, but they need to be willing. I am encouraged by their response to our alternative treatment discussion yesterday, despite their initial hesitations. However, as we have since January, we'll do what we need to do. I'd absolutely prefer CHOP to be part of the conversation though.




How do you know what's safe?


**** UPDATED NOVEMBER 2019: That's a tough one. Even things the hospital gives aren't necessarily safe, it's a risk/reward decision. I am pulling every professional I know into the conversation to get their opinion. If someone suggests a "miracle vitamin", it goes to our nutritionist for her opinion on if it's actually useful. Then we run it by hospital pharmacy to see if there are any known serious interactions. If we hear it's bogus by our nutritionist, or dangerous by the pharmacy, we have decisions to make on our own. On top of that, we need to consider what "mostly safe thing" might poorly interact with some other "mostly safe thing". If we throw two alternative treatments at her at once, might they cancel each other out? There is a lot to research and experts seem to make it a point to completely disagree with each other. Needless to say, it's been a very busy, stressful week.





How to Help

Is there an address where I can send a card or gift?


Yes! You can send checks, cards, and gifts to Amy's work address found here: https://www.juliaadamscancerfund.org/send-a-card




What is the best way to help out Julia and her parents?


**** UPDATED NOVEMBER 2019: SO many people are asking this. Thank you!-- Right now, Amy's number one priority is obviously finding some miracle cure. If you have legitimate research, not in the form of a book or documentary, please send it to us at juliasfightagainstcancer@gmail.com. (In order to save our sanity, please confirm it's not already in the list below.) We are looking into everything.

If you're looking to help financially, it continues to be greatly appreciated. If GoFundMe is your thing, you can manually tip $0... they've made plenty of money off Julia. The most valuable gift card is by far Wawa as it's how I pay for my gas. Gas has been completely covered by you guys since this all started (seriously, thank you.) Find ways to donate here: https://www.juliaadamscancerfund.org/donate-gofundme
SEPTEMBER 2019: Right now, it's staying involved =) Read Julia's nightly updates, and react, comment, and share. Julia's story reaching so many people has allowed Amy and Reed to get a ton of really useful, potentially life-saving information. Please keep doing it! If you want to support them financially, donations to their GoFundMe are greatly appreciated. Or if you'd like to do something more specific, Wawa gift cards go directly to Amy's gas/transportion costs. Or purchase a bottle of the CBD oil they use (Julia goes through a bottle every 4 days). https://www.cbdbiocare.com/full-spectrum-cbd-oil.html




What should I do if I find a suspicious fundraiser in Julia's name?


DEFINITELY tell us about it! We care a LOT about keeping Julia's name clean. Contact Amy via Facebook, or tag her in a message. Don't worry about bothering her - she has a team of family and friends handling this sort of thing =) We WANT to keep control of this!




Can I do my own fundraiser for Julia?


Yes -- absoutely! We would be very grateful for any money someone can raise and donate to Julia's fight against cancer. The only thing we need to mention is that unless we know you personally, we can't advertise or endorse your fundraiser on our website.

There are A LOT of fundraisers for Julia going on (which is awesome!) but we can't vet everybody, and we've already had some instances of people scamming money in Julia's name. So in the best interest of the family, and our time and sanity, our rule is to only advertise fundraisers from close friends and family.

You are more than welcome to run your own fundraiser and donate the proceeds to Julia's GoFundMe account (https://www.gofundme.com/juliasfightagainstcancer). If you would like to use any photos of Julia to share her story for your fundraiser, please email us first so we're aware of where they are being used. You can contact us here: juliasfightagainstcancer@gmail.com




What is the GoFundMe money being used for?


All kinds of stuff! Thank you for donating! Julia's alternative treatments are expensive. One bottle of CBD lasts about 4 days and it's $140 a bottle. Her RSO costs $60 and lasts about 6 days. We're now looking to switch her to a really great formula ideal for cancer fighting, but it's not covered by insurance. So that, in addition to the trans-dermal patches, are out of pocket. In addition, I drive to and from the hospital almost every day (and that's a ton of gas). And we were already at essentially $0 when Julia got diagnosed, due to having spent (literally) all my savings in order to help my dad while he fought his cancer. Everything I had saved in our mutual business was spent on his treatment and living expenses. So when Julia got diagnosed the day after my dad passed... we didn't even have $500 extra left over. We could still get by month-to-month, but had no emergency fund or anything. In addition, while we certainly don't know the future, we are very much aware that we will likely bring home a daugther with a variety of medical needs - possibly severe. I will likely have to quit my job and become a full-time care-taker. Reed and I are not currently in the position to survive on a single income. So we're working toward that possible end as well. If you're reading this, I want to say THANK YOU for donating. All of you are lifting this financial burden and allowing us to just focus on our care for Julia.





Other Treatment Questions

Does Julia get physical therapy?


****UPDATED November 2019: Julia is currently getting regular physical and speech therapy. Please see blog updates for details. SEPTEMBER 2019: Julia has received minimal physical therapy while at CHOP. She does get 'regular visits' by Speech Therapy, Occupational Therapy, and Physical Therapy, but they are only a few times a week, and only if she's feeling OK. As of October 2019, she is getting ready to (hopefully) enter into an acute rehab facility for 1-3 months. Goals will be sitting up, standing, walking, and breathing strength =)




Can she go to St Jude?


No. They are not currently studying her cancer. Their commercial of "turning no child away" is misleading, either intentionally or not. They are a fantastic research hospital, they just have nothing for Julia at this time.




Has the Chordoma Foundation been contacted?


Yes. They've been contacted several times throughout this process and have kept in touch. I asked again recently if there are any possible trials, even getting the drugs off-trial. Nothing official yet.




What about another hospital?


We are satisfied at CHOP. Last November we did our due-diligence and got our 2nd, 3rd, and 4th opinion from the leading chordoma hospitals (and honestly, it's so rare in kids, those don't actually exist). No one recommended we leave CHOP. CHOP's neurosurgeon is world-renowned, and we're literally next door to the best radiation therapy center on this half of the US. Anyone can administer chemo once a protocol has been chosen. The contacted experts agreed with the protocol CHOP chose, and said nothing more could be offered elsewhere.




What about Mexico?


We can't bring her to Mexico. She's not easily transported with her trach / vent / medical frailty. And with how her disease progressed last December / January, she needs to be in a hospital close to immediate intervention. I understand there are alternative clinics in Mexico with promising success stories (though not with her cancer), but it's just not practical. And initial research does not suggest they are willing to treat remotely.




What is she eating?


Her formula is real-food, organic, plant-based, non-dairy, gluten-free, soy-free, corn-free, non-GMO. She has been on this since March. This was a compromise between what the hospital defaults to and what our nutritionist recommended. We are looking to take this diet a step further but we need to work with CHOP's dietitian.




Can you take her home?


**** UPDATED NOVEMBER 2019: Not easily, nor would we want to. Home nursing would need to be arranged for her trach / vent, and they have spent many months working with the agencies in our area to make that happen, without success. Also, she very likely doesn't even remember home. It is not a source of comfort to her, as it might be for an older kid or adult. In addition, she has come to know and love her nursing team. She waves and smiles and plays. These nurses know everything about her. They know how to move her to not hurt her spinal fusion. They know how to effectively but gently restrain her during trach changes. They know how to convince her that diapers changes aren't the worst thing ever. They know what her goofy hand signals and faces mean. The team at CHOP is her family. These nurses come on shift happy, awake, energetic, and with unlimited patience. And they have fallen in love with Julia. Taking her home would mean putting her in a lonely house, with two exhausted parents, and brand new home nurses who know nothing about her and she'd know nothing about them. In addition, we've seen what happens when this cancer progresses. I want her close to immediate intervention and pain relief should that time come. So as awful as hospitals are for most of us, it's where she needs to be for her physical and emotional health.




Is Make a Wish an option?


We can't think of anything she would enjoy. She was still a 1 year old when she went into the hospital. She spent the end of her 1's and the first half of her 2's in sedation or coma. She's spent the last half of her 2's with her iPad and limited mobility. There's nothing she likes enough that some sort of event or excursion would be worth it. She just wants to be with Reed and watching her iPad. Other kids would benefit much more greatly from this awesome program.




Have you looked into proton therapy for this tumor?


Yes, in fact, one of the best proton therapy centers is across the street from CHOP. Julia is not a candidate due to the location of the tumor in relation to her metal spinal fusion hardware. It makes the beam bounce.





Other Diagnosis / Symptom Questions

Why did Julia have a stroke?


Julia developed a brain infection through one of the surgery sites in the back of her throat. This infection caused her brain to swell which resulted in a stroke. The infection was a "rare complication" - one that you can get from any surgery. Luckily Julia was already in the PICU being monitored, and the damage was limited thanks to the team's quick response. Julia does have side effects from the stroke - notibly some droopiness in the left side of her face, as well as limited mobility on the left side of her body. Through PT, she is improving by the day =) At this time, they do not expect her to have any lasting complications.




Why/When did Julia stop reacting and moving & when did she start again?


Julia stopped responding completely in early January, shortly after we were given news that the cancer was terminal and nothing more could be done. She laid completely motionless for weeks while we administered alternative therapies. She started showing very small signs of movement again in mid-February =) The cancer is wrapped around her brain stem and as it grew, it squeezed so hard she lost physical function and her vitals started to be affected (heart rate, breathing, digestion, etc.) As the cancer shrinks, it releases pressure on the brain stem, and she regains abilities. At this point, the tumor is not compressing her brain stem at all and she has regained all function and abilities. Now she just needs to recover from the stroke.




Why was Julia wearing a halo/neck brace | What are those scars on her head from?


Julia's initial tumor was wrapped around her C1 vertebrae. In order to remove the tumor, they had to remove a good portion of the bone. This caused instability in the neck. She had a follow-up surgery a few days later to fuse her C4 up through her skull. So she was put in a halo neck brace (screwed to her head with 8 titanium bolts) for 7 weeks. She has 8 small round scars from the bolts, 2 behind each ear, 2 on each side of her forehead. Once she was taken out of the halo in late December, she was put in a regular neck brace for about a month. She is currently healed nicely from the surgeries and does not require a brace, but her neck is still very weak.





Misc Questions

Does Reed ever leave the hospital?


Not often. He currently comes home one night a week to spend it with our son Gabriel. If he leaves other times for appointments or tours, we generally take that opportunity to get some lunch or something and see Gabriel. Reed is not unhappy in the hospital, and he is very content with his situation, given the circumstances. He is a man of very few needs - he has a place to sleep, he's warm, he has food, and wi-fi (usually), and most importantly, he is right next to the love of his life. Reed does not want to leave the hospital, and he would find no 'relaxation' or 'recharge' out of being away from Julia. He has a very unique personality that allows him to face this situation with never-ending patience and understanding.




What is Julia's favorite color & cartoon?


Julia's favorite colors (as far as we can tell) are orange and blue =) She is OBSESSED with Peppa Pig, and she gets excited for every new show that comes on Nick Jr - Bubble Guppies, Abby Hatcher, Paw Patrol, etc.




Re: Facebook "How do I put so much space between my paragraphs?"


This random question made me laugh, so I had to answer it =) The limited line spacing between paragraphs on Facebook drives me nuts (more awful on desktop than mobile). I use periods sometimes to add white space, but in between my paragraphs I actually copy/paste an invisible character so Facebook honors an extra line of space. And tip: in a message you can "alt+tab" to add a line break or two without sending the message / entering the comment. This prevents walls-of-text, which I've received a lot of lately. I have no idea what the equivalent is for Apple.





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© 2020 - all photos in blog copyright Amy Largent. Please do not use them without permission. Thank you. 

Meet Julia Adams
I'm 3 years old and I have a rare and serious form of childhood bone cancer. I'm doing my best to beat it, but my family needs your help!