Short update then long FAQ below that can be skipped if you're not interested. Reminder to her casual-followers that her cancer has returned. She finally had a decent night's sleep. Not fantastic, but pretty good. Two several-hour chunks of sleep. In addition, she's had a few pretty good naps. So it's the first time in about a week she's slept semi-well. She just got her third dose of oral chemo. Her vitals are all decent, and she's had no barfing. The big news today is they got her all hooked up for her seizure study. She haaaated it. It didn't hurt, at all, but she HATES things on her head (that's why she's never wearing hats). They would put a lead on, and she'd rip it right off. Finally they had to put a velcro splint (also called a 'no-no') on her arm to keep the elbow from bending, just to keep her hands off her head! So she has about 20 leads on her head, covered by that protective cap, which read to a new fancy machine at the foot of her bed. They will let this run for at least 24 hours to see if there is any seizure activity. If there isn't, they will consider turning it off. If there is, they will keep it going longer to check for patterns. This is due to the "spacing out" episodes she's been having, which (of course) she hasn't really done today... I wonder if it might be more poor-sleep related. But we'll hopefully get some info on that soon. Oh, and because she can't rip off the leads on her head, she is protesting by ripping off the pulse-ox on her toe -_- This little girl is tired of having things attached to her! You can see in the pix that she ripped off her chest bandage as well. This was just protecting her chemo port removal surgery. It's mostly healed up so they're just leaving it off. But she's had lots of cuddles and smiles today, and even a no-no-free tea party =) Reed had to keep swatting her arm away from her head, but they got through it. She enjoyed throwing one of her finger puppets into her basket and then doing the "where is it?" arms, then was super excited to find it for everyone <3 Not a bad day at all, considering. Video in comments <3 ~~~~ FAQ ~~~~ Over the last many months I've gotten pretty good at responding to almost everyone in messenger or tags. But I've received SO many messages these last few days, I either skim them and move on or haven't seen them. So I put together a list of FAQ to help reduce some of the repeat messages. **** General **** What kind of cancer does she have?
-- Clival Chordoma. It's a bone cancer that has spread to her brain. It's similar to the brain cancer ATRT. 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.
**** Other Hospitals / Clinics **** 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.
**** Treatment Options **** 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. 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. 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. 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. How do you know what's safe?
-- 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. 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.)
**** Misc **** Can you take her home?
-- 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. 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.
Where can we send something?
-- My work address is still the best (sorry Anthony): https://www.juliaadamscancerfund.org/send-a-card How can I help?
-- SO many people are asking this. Thank you! -- Right now, my 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 me. (In order to save my sanity, please confirm it's not already in the list below.) I am looking into everything. -- If you're looking to help financially, it continues to be greatly appreciated. Last week I put work on hold to be at the hospital every day. All the links in the footer are still valid. 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), and I'm down to my final two cards. -- Lots of people are messaging wanting to buy a gift. Julia has been blessed by your generosity all year and I can't think of a Peppa toy in existence she doesn't have <3 But if you'd still like to do something, all 4 of the kids have birthdays within 3 weeks of each other! (When I say "all 4", I am talking about my 2, and Aunt Charlene's 2. For the new followers (hello!), Aunt Charlene is my sister-in-law [Reed's brother's wife] and they are the family who has essentially adopted Gabriel this past year). Last year, all their birthdays followed right on the heels of Julia's awful diagnosis and my father's passing, so of course we did pretty much nothing. We've been excited to make up for it this year with Julia's amazing progress... and then all this happened. So these sweet kids are headed into birthday/holiday season with a dark cloud over their heads for the second year in a row =(
- Gabriel turns 2 November 15th (less than 2 weeks!)
- Cousin Kinley turns 13 November 22nd
- Julia turns 3 December 2nd
- Cousin Joshua turns 9 December 9th
- (Bonus: Reed's birthday is November 19th, but he'd prefer if people just forget) **** Things we're heard about ****
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. Hopefully that was helpful for some of the more common questions <3 Video in comments. YouTube: https://youtu.be/QKi-FSVkwyg
. . .
********** ~~ Julia Adams ~~ *********** ************* Official Links ************* **************************************
Julia's official pages:
Facebook: Julia's Fight Against Rare Cancer - Fund
Julia's official fundraisers: T-shirts: https://bit.ly/2MQc0lF | https://tinyurl.com/y55lh988 Jewelry: https://etsy.me/2E1mR8i Tumbler: https://tinyurl.com/yy6oamph Car Magnet: https://tinyurl.com/y4nxr3lr
Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): www.naturallywellforlife.com || Coupon code: danaboyd
Chordoma Foundation: www.chordoma.org
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