Lilys PXA Journey

Look what I got in the mail!! The #TrailBlazeCA challenge ends on the 20th I believe, Im going to throw in a few extra dollars to make it a 600$ donation with your help Helping a kid get their wish is everything

After over a year of struggling to eat, using a GTube, chemo, and other operations/test, Auston has been diagnosed with having cancer. This is something that no parent should have to endure. If you can spare anything for this family, it would be greatly appreciated.

A little bit of why Im selling masks now I am so glad that theres such a thing as Make a Wish foundation and I just want to help even one kids get their wish

A friend is helping me out with my goal to raise 500$ for Make a Wish BC&Yukon. You can get one of these keychains by simply donating

Lily was supposed to have surgery at the end of April for her eyes and teeth. That was postponed because of covid and now were waiting to have it rescheduled. Lilys been having fun keeping busy making lots of arts and crafts while being home from school. She went back to school yesterday and is so excited to be back with a few of her friends. She also had her haircut a couple weeks ago and is LOVING her new sassy do ... Hoping for an appointment for surgery soon

Olivia accompanied us on our trip to BC childrens yesterday and had such a blast with her big sister. We met a new friend who decorated Olivia a cookie:) This young man has just come to Ronald McDonald house last week after they found a brain tumor. And here he was decorating a cookie for a little girl he just met. It was amazing being able to sit down for dinner with him and his mom, talking about about the struggles of having a sick child and being away from family duri...ng that time. Ronald McDonald house charities is such a huge part of so many peoples lives and it really is like a second home to many. Were so thankful for every day weve been able to stay there and for all the support and love everyones shown us. Its nice to be on the other side where were not sitting, crying in the dining room because we werent sure if our child would make it. But one day a couple years ago, that was me. See more

I am SO proud of Lily. She really talks up a big game on the way to the MRI about how shes NOT going, shes NOT getting a needle, and shes NOT smelling the paint. But then we get in there and shes likeok. I know the drill. Its go time. She got herself dressed and laid down and put a blanket nicely over her in the bed. When it was time for the gas mask, I assured her that there were no surprises, no tricks. She just laid there and breathed deeply and went to sleep. That is by FAR the easiest its ever been. My babys growing up

Made it to RMHC just in time for pizza and hot chocolate. They really know how to make everyday special here

Rough start to the day. Heading to Ronald McDonald house today for an MRI tomorrow. Lost our tap form, went to a walk in clinic, waited 2 hours just to be told that they couldnt do a tap form(even though thats what I told them when I got there). Making the 4pm ferry. Fingers crossed I can cheer up and still make this a girls weekend as Lily likes to refer to it.

This is what happens when she gets out of an MRI now:( she doesnt even have enough energy to open her eyes, let alone walk.

MRI for Lily today. Praying for good news. If theres no change again, shell be 1 year post Op and wont need another MRI for 6 months

Lily had an MRI coming up on Monday. Its always nerve wrecking. Never gets easier. PXA can progress at any time, at any rate. I try not to worry, but when its your child, you cant help it. Please pray for her or send positive vibes

My little superhero will be getting another surgery soon. But this is great news for her! After her first brain surgery, her one eye deteriorated quite a bit because of the nerve damage from the pressure of the tumor. So we got her glasses to protect her good eye. Then we went back and found that her bad eye had actually improved drastically, but that her good eye was now barely functioning at all, yet somehow she was able to see really well now. ... Today we went to see a new ophthalmologist, hes here in Victoria, so no long distance trips! Yay!!!! We were told that shes gone long enough with poor general vision, some color blindness and 3D vision issues, that she can now get surgery on her eyes! Theyll be cutting some muscles to help her from over straining her eyes. Turns out its NOT irreversible nerve damage thats causing her eyes to drift So excited for her, that she has options to help her vision instead of just a shrug from a doctor

This is Maddie in her happy place, Aloha Camp, back in 2015 (look at all that hair!!!). Thanks to so, so many of you, we are raising enough funds to make a last...ing difference in the lives of Aloha campers! I know that those changes will have a ripple effect and make the world a better place. There is still time to donate. Just designate that the gift is in memory of Maddie and it will fund the projects were working towards. Ill post details when I know exactly what we have money for - it looks like it will be quite significant! https://alohafoundation.org The Aloha Foundation 2968 Lake Morey Road, Fairlee, VT 05045 See more

Just for awareness, this is what a petit-mal or absent seizure can look like. This is the first seizure I caught on video. Because she seemed fine the doctors wouldnt do anything, even though I took her to emerg 3 days in a row. She then was sent for an EEG, which showed no abnormalities, then another, which again showed nothing. She went on seizure medication than stopped her from having upto 13 seizures in a day and she went on for the next year and a half dealing wi...th this tumor crushing her brain and thinning her skull. Im glad every single day that I listened to my mom gut and pushed the doctors to eventually get her a CT scan or she might not have been with us today If you see someone having a seizure like this. (I learned later) Do not try to get them to talk. Just make them comfortable and keep them safe. *disclaimer. It may sound like Im mad, but I was so frantic and was trying to hold it together. This was the worst seizure yet, and when she *tried* to say Im trying I still want to break down in tears.

We lost a strong and courageous friend yesterday. She too was battling PXA. Her journey was much different that Lilys. She developed cancer, had almost every imaginable reaction to chemo, tried several different therapies to get rid of the tumor but it just kept coming back faster and stronger. She was diagnosed around the same time as Lily and then this past January, she had a seizure that lasted a very long time and had a massive stroke because of the damage. She spent over a month getting used to her new life as a teenager post stroke, but is now without limits and pain. We will always remember Maddie and how she powered through everything that life threw at her. Her courage and light shines for the whole world now. Keeping Alexandra and her family in our thoughts and prayers

Lilys MRI on Monday came up pretty much clear. The tumor is still there, but the small part left over is stable and not growing. Shell need to do a one year post op MRI, then we can go to every 6 months!! Shes so excited:) This last MRI was especially hard on Lily. She had an extremely difficult time coming out of sedation. She asked probably 10 times why she needed to be put to sleep if they did the needle while she was awake, wasnt able to walk for about 3 hours afterward, cried for probably 2 hours afterward as well:( It was so hard watching her like that. Ill post another update about a little act of kindness from another girl while Lily was waiting to see the doctor the other day

Good news! Lilys tumor has NOT grown since her last scan in September Bad news. Lily was not very happy about how things went with the scan, especially that she couldnt eat lunch right away afterward Will be heading back to BC Childrens hospital in January to see her Opthamologist. Hoping to start vision therapy shortly afterward, just need to find out if its the right path for her

Tried to do the MRI without sedation since shes old enough now. Tried out the pretend MRI machine with all the sounds, the ear plugs and headphones, everything. When it came time for the needle... she didnt realize theyd started, so when she did, she absolutely lost it and smashed the table with her leg and went full hulk. So they found an anesthetist and were able to smell the paint, which was a great idea until it came time to actually do it Then we spent 10 minutes trying to convince her to do it or that shed have to pick the needle. Eventually had to press her head against mine and hold her arms with a couple other nurses helping, and she finally got to sleep from crying into the mask Hate that we have to do this so often. Doesnt matter how many times, she still hates it

Just got back from a couple weeks of vacationing to see family in Saskatchewan. Lily had a great time with her cousins, aunts and uncles, and grandparents. Shes starting to have some weird symptoms which could be nothing... but were worries that it may indicate that the tumor is growing. Will be pushing to get an MRI sooner than later.

One year ago today. Lily had been experiencing seizures for a year and a half but the answer was just shes epileptic. Then she started having headaches and nausea and anxiety/depression, but that was just written off as anxiety and its symptoms. Then came the hand tremors that eventually made it nearly impossible for her to eat. She started eating with her hands so that the door wouldnt fall off her utensil nephew it got in her mouth. Still no answers. But I already kn...ew it was a brain tumor. It seemed so obvious to me, but the doctors wouldnt do anything. Finally a doctor suggested Lily to for a CT scan. That was when they saw it. We were transported to BC Childrens hospital. Steve was sailing and needed to somehow get home so he could take a ferry to us. I can still remember that day like yesterday. Calling my mom to get her to the hospital quickly, but without telling her what was happening so she didnt have to hear it on the phone. Trying to stay strong for Lily and joking around with her to keep her in good spirits. Calling Steve after Lily finally went to sleep, finally letting myself cry when i told him that they didnt think it was congenital so I couldnt have been my fault. So much has happened this past year and its been a hell of a ride. But weve had so many prayers said for Lily, so many friends reaching out to help, so much love and compassion for Lily. A friend set up a GoFundMe for Lily right away so that we could stay in Vancouver with her and not have to worry about anything but her. I cant thank everyone enough for everything. I never thought that this would be my life. Ive always said that I would never wish this upon someone, but that Lily was made to deal with this. She is so strong and resilient. She has powered through every obstacle and made it look like a breeze. Were not at the end of her struggles, but Im thankful that shes still with us so that I can help her through instead of visiting her grave. Because we were really that close. Im thankful every day that I kept pushing and calling the doctors saying that something was wrong, that she needed more help.

Weve been keeping busy in between appointments. Went to the Disney store, lots of biking outside, video games and dress up in the playroom, lego, and then we watched the Labrynth and all snuggled in the same bed until about 11pm Today Lily saw the ophthalmologist for pictures of her optic nerve, where only one of her eyes dilated at first Then when we got back home, Lily went to art therapy where she sculpted and painted a unicorn. Now they kids are making sugar cookies and then well have dinner soon:) Ronald Mcdonald is seriously amazing and makes all of the craziness so much better.

Wow! Just wow! This girl is so brave so proud of my baby girl. She was so tired of having to smell paint(using the gas to go to sleep), so she opted to try the needle. So she got an IV while awake and made it look easy. She said Im just not scared of needles now. The first time we needed a sample of blood from just a finger prick, it took 6 adults to hold her down while she screamed. Im just beaming right now

The nurses drew flowers on her special lotion bandaids today. Lily quite up and down this morning and is super hangry, but a quick call to her dad fixed that MRI soon, then seeing her neurosurgeon after for results

Lily started grade 1 yesterday:) So glad shes well enough to attend school again

Literally a wish come true! Cant believe this is happening:) Lily is just ecstatic about this upcoming trip. Shes going crazy over how cool the tea party set is right now Kind of ironic that shes wearing the PJs that she got at VGH, just minutes after she was diagnosed with her brain tumor. Its sad that this is the reason we get to spend this time together in Disney, but Im just so glad that shes still here with us to wake us up everyday with her smiles

Lily wish box opening!!

Lilys eyes are getting really bad:( but she still keeps a good attitude about it. Noticed how badly her eye was drifting and asked if I could take a picture and asked how she was feeling. She gave me this look and started going on about some gibberish, trying to make me laugh Love this girl. Shes also enjoying ALL the snuggles with her new sister. Shes very excited to be leaving for Orlando in a few days and is busy getting ready for it:) MRI and several appointments at BCCH in less than a month

Now that things are finally booked, we can share Lilys VERY exciting news! A few months ago, Lily was approved for a Wish through *Make A Wish Foundation*. Though Lily is not terminally ill, they also provide wishes for children with life threatening illnesses if approved by their doctor. Lilys Wish is to meet Disney Princesses in Orlandos Disney World. This news came just a bit before her last surgery was booked and has made such a huge difference already for her. When sh...e would get nervous and anxious about her surgery, we would distract her with trip planning. Weve watched approximately 1000 YouTube videos about all the rides, the characters, and what itll be like there. Lily has been so strong through all of this and Im so glad that she has received this opportunity. Her vision still isnt great, so she gets double vision often, but she acts like its no big deal Well be staying at Give Kids the World Village and will be leaving for Florida on the 1st of September. We cant wait! See more

Not too much going on with Lily recently, which is good:) Her eye continues to bug her though. She says that when it drifts, she gets double vision. But shes so tough and because shes a kid, she just rolls with the punches:) Shes getting really excited for her baby sister to arrive soon and has been a big help getting everything ready for her. Anxious for her MRI at the end of the summer so that we can see how much of the tumor they were actually able to get out, then we start back up on plans for what to do next.

Lilys sore in front of her ear burst last night and its now an open wound. We had it bandaged overnight and only took it off for the doctor to take a look. If you didnt know better, youd think that her wound being cleaned and re-bandaged was actually an exorcism. Lily did NOT have a good time. Just used water to wipe it and then she was on the floor bawling about how much it hurt and that she wasnt taking anymore medicine:( My poor girl is having such a tough time. They wanted to keep us a few days but I figured I can clean it at home and return if the swab comes back with somethings. I think theyre mostly worried about meningitis.

In trauma at the ER and seeing a nurse already. Heading to Vancouver tomorrow.

Looked like Lilys ear was getting better after just a day of the antibiotics, but then this morning we realized that the infection is from the stitches and the bottom of her stitching is bulging from the infection:( Ill spare you all the gross pictures. Its very painful for her and definitely worrying for us all. Going to the hospital this morning I guess:(

Lilys had a really rough week. First, her eyes are getting worse everyday. When she first blinks and opens her eyes its not bad, but within seconds her right eye drifts outward. Secondly, she has a skin infection inside her earlobe. The doctor suspects its from the stitches inside that go just above and around the front of her ear. Poor girl has 3 stitches left on the top that are also appear to be infected as well. Her ear is very sore and has been pussing and hardening and causing more pain:( *Should also add that the bruise on her forehead was from an unfortunate run in with the wall. It apparently jumped out in front of her

My little stinker Apparently she has nerve damage in both eyes now... her vision is relatively normal, but shes colorblind now in the right eye.... Just always something for her:(

Lilys eyes are getting worse everyday Hopefully we come up with a plan when we see the ophthalmologist tomorrow. Looking like shell need eye surgery since its the eye that wasnt affected by the tumor. So now both eyes have their own set of problems

I cant thank you all enough for your support and donations Really, we wouldnt have made it through this last month without you all. Little update on Lily- her eyes are going a little funny. Not sure if its her optic nerve not working or if the other eyes muscle is overcompensating. Either way, were going back to Vancouver on Monday to see her ophthalmologist. Also, a friend of a friend is doing an online fundraiser for the Sunshine Kids foundation as well as for Lily. All proceeds from the purchase of this bracelet in particular go to help kids battling cancer Let me know if you want to be added to the Facebook group, it goes until the end of the week and then there will be a bit of time left after for orders to still go through. Again, THANK YOU

Greatest news!! The piece of tumor they removed has the same characteristics as the last, which means no change in grade and its not cancerous. On top of that, theyre quite confident that the tumor is pretty much gone. Theres some stuff that theyre not sure if its tumor or what they used to stop bleeding in the surgery. Repeat MRI in 3 months and hopefully things look good. It is still grade 2, so there possibility or regrowth as well as the possibility of it becoming cancerous, but were quite happy with this news