Light at the end of the Tunnel

2nd October, 2016

My blog posts these days are few and far between. This is because i have less of an urge to publicize our cancer journey with Cody as well as less of an urge to talk about it all because we are living it every, single, day. However, it has been quite some time so its time for an update.

2016 has truly been the worst year of our lives as a married couple for Ben and I, or just the worst year of our lives full stop. The ONLY way i can describe what its like for your son to have cancer is that its like being on a really scary roller coaster that is constantly full of ups and downs and yet you can’t get off it. The last 6 months has just been up and down. Initially it was just a downer for the first bit. But when Cody gets a week’s break from chemotherapy we get on a high.

In our little family of me, Ben, Jack and Cody we all react off each other. If I’m in a bad mood, then it brings the mood down for all of us. If Ben has a bad day at work, we feel for him. If Jack has a bad day at school, we feel for him. And If Cody isn’t feeling well, we all feel his pain too. When i see what Cody goes through, when i watch nurses pierce his gentle baby skin to access his port, when i see him in tears because his body has a fever, when i have to hold his wriggling body down for every blood test, it causes my heart to physically ache for him. But. When he is feeling good and well, its like the house is just full of happiness again. We all feel happy. When Cody laughs at Jack making fart noises or when Cody shakes his little booty to that stupid Pen Pineapple song, my heart heals itself again.

The days when Cody is good gives me a glimmer of hope that he’s still there, our little Cody bear is still there. The Cody that goes to hospital and screams and cries all day is not the real Cody. So it is nice to know that even know he has been pumped with toxic drugs and his body has been fighting against itself, that the real Cody is still there.

Starting this Thursday, Cody will be starting a 5 day week of chemotherapy. Just like usual, same old, same old. The only difference is, this 5 day week of chemo will be the LAST 5 day chemo week! He then has a 2 week break (or thereabouts, depending on how his body handles the 5 day week) then he has a 3 day week of chemo. Then a rest. And then…that is the end of Cody’s treatment plan!

Cody will then have lots of tests done, CT scan, MRI, Ultrasound, etc to make sure that the cancer is gone. IF he gets the all clear, we then just go back for monthly reviews, but no more chemo. Apparently, his hair will grow back in about 6 weeks. His body might go a bit ‘funny’ such as eczema or hay fever because his immune system will start to work again. His immune system has been completely suppressed by the chemotherapy for the last 6 months, which is why he picks up pretty much every germ in the air. So it will finally start working and his body will return to working like a normal human again. His bone marrow will return to producing blood in a normal manner once again. But most importantly we’ll have the real Cody back to us every day.

I am so excited for his end of treatment, but very nervous. I don’t want to build myself up too much and keep thinking that its the end of our ride. What the hell would we do if they did all the scans and told me the cancer was still there? Or what if he had another tumor?
The one fact I am clinging to is about 2 months ago, the Doctor did a CT scan of Cody after the tumor was removed and we got the all clear then. The reason we still keep doing chemotherapy is because there is the possibility of microscopic cancer cells being left behind.

So, say everything goes to plan and Cody gets off the roller coaster, what are we going to do? First things first (cue Madonna) “HOLIDAY! CELEBRATE!”
Yep, definitely going on a holiday at the end of all this rubbish and i darn well say we deserve it. We have hopes to go to the Gold Coast at some point. Heck, I’d love to just move there, Ben could quit his job and we’ll live on a house on the beach and drink Cosmo’s all day in the sun, and my body will suddenly transform into that of Scarlett Johannsen and we’ll find a briefcase full of money…er, hang on I went too far didn’t i? Oh well, a girl can dream…

I am, however, looking forward to having a lot more free time on my hands.. Also, looking forward to not spending our weekends in a hospital room! We’ll have more time for our families and our friends and for each other. Me & Ben just want to be a normal family again and see our baby healthy again.

Thank you for your kind words, well wishes and messages.

– Elise x

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You can’t pour from an empty cup!

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16th July 2016

I haven’t written in this blog for quite some time. Reason being is that the daily life of having a toddler with cancer is getting far too depressing and busy to have time to write anything and also I’m sick of spending all my spare time out of the hospital talking about Cancer. However, time for a catch up and possibly a bit of therapy for myself to get it all out.

On 1st June, Cody had his major surgery to remove his tumor. It was a very long and intense day. The surgery itself went for 4 hours. We had no reason to worry though, it was a complete success. The surgeons removed the entire tumor in full without it breaking or spilling into his body. Cody healed quickly and nicely and will forever have a large scar across his tummy, its all good though – chicks dig scars!

A few people have asked me if the tumor is out then why would he still need chemo?  The answer is simply that cancer is a bitch and even though the tumor is gone there is still lots of microscopic cancer cells left over in his body.

Cody had a week of Radiation to help kill the leftover cancer cells. The radiation doesn’t only kill the cancer cells but also changes their DNA pattern so that the cells grow as a normal cell and not a cancer cell. The radiation wasn’t too bad at all actually. Cody needed a general anesthetic every morning of the radiation which wasn’t too nice, but we were out of hospital in about an hour and had few side effects. Chemo is far worse than radiation. The radiation took place at Royal Adelaide Hospital, so we were joining in with the adults with cancer. There were lots of dear old people there and they seemed to be happy to see a little boy around the place. I sat next to one old lady and she said to me “He shouldn’t be in here. I should be, I’m in the right place because I’ve had my time, but not him”…I know its not right but I didn’t disagree with her. Truth is, I wish no-one had to be in there, no-one at all, young or old deserves to have cancer.

We are halfway through our Chemotherapy treatment plan. This week, Cody will have a Heart Ultrasound and CT to check on how the cancer is doing. Hopefully, the chemo is doing its job and killing off the cells.

Chemotherapy. Its not a promised cure. Its all trial and error. Chemo is designed to kill off cancer cells, which is great, however chemo drugs are so toxic that they kill off all the good in Cody’s body. It makes his bone marrow stop producing blood, which makes his blood count low, often. After a 5 day week of chemo he is very weak and sick. His immunity is at zero. He has had a cold for over a month and its not going anywhere soon because there is no goodness in his body left to fight off the virus.

This week we had to go to hospital because he had a fever with his cold, which means he needs antibiotics to clear the infection from his body. Chemo kills anything good in his body. Antibiotics kill anything good in his body. We better have good results from his CT this week, because we need a bit of hope to know that all of this suffering is for a ‘cure’.

I always used to think that people died from the cancer growth itself, but sometimes it can be from the treatment because its just so harsh on the body. Is there an alternative? No. Not for us anyway. Cody is 2 and has a very good chance of thoroughly beating this cancer buy following our chemo treatment plan. We are just really in the thick of it all now and its bloody hard. I look at my son and his legs are skinny and bruised, his tummy has a massive scar reaching across him. Followed by a smaller scar above that one, with a round circle poking out of his body, its his port and the skin surrounding it is covered in tiny pin pricks from all the times the nurses need to access it. On his neck is another small scar where the line of the port was put through. He is pale white on a daily basis now. His eyes are sunken back with dark circles underneath. He has a couple of eyelashes left and a couple of tiny strands for eyebrows and a bit of fuzz on his head.

Cody is truly so beautiful to me, I love him so much. Every now and then the thought of Cody losing this cancer battle slips into my mind and i have to push the thought out straight away. If i get into that head space then i wont be fighting with him anymore, and we need all the strength we can get. Staying positive, isn’t just a good idea at this time, its the only thing that will get our family through this. We have spent so much time in hospital now that our family time together is truly cherished. The truth is once I’m out of hospital i don’t want to talk about Cody’s cancer. I know people care and we appreciate the kind messages and thoughts from people. But these days, the cancer has become our entire lives, so sometimes when we get a break from hospital, me & Ben like to pretend we’re a normal family again without a care in the world. My poor Jack is on school holidays and has spent his first week of holidays in hospital instead of doing fun school holiday activities. The cancer affects all of our family greatly.

The stress has taken its toll. Last week i turned 30. I looked in the mirror and realised i look more like 50. The last few months of stress has taken its toll. My hair is going grey, my skin is ageing and looking haggard. The stress eating is taking its toll when i step on the scales. I’m slowly starting to realise that if i don’t look after myself then i wont be much use to my family. Running on empty isn’t working out for me these days – ah who am i kidding, no one’s ‘running’ here!

Anyway, to end on a positive note, we are officially at the halfway mark of our treatment plan. I’m not sure what the future will hold for Cody, but we’ll continue to take one day at a time.

Thank you everyone for your kindness and taking the time to read this.

– Elise xo

Days of the week

IMG_797115th May 2016

I never intended for this blog to become an ongoing sob story, but I guess talking about my 2 year old son’s journey through cancer isn’t exactly going to win funniest blog award – if there is such a thing…which I highly doubt.

We all knew this week was going to be a tough one, being 5 full days of chemo treatment. We were mentally prepared for the long week ahead and although it sucks, we just thought we’ll toughen up and by Friday that would be the end and we would go home and play happy families, right?… Wrong!

Monday when the nurses went to put Cody’s IV fluids through his line, they noticed they could easily insert the fluids into the line fine, but when they withdrew the syringe back it wouldn’t budge, as if there were a blockage of some sort. Same thing happened Tuesday. Again Wednesday.

By Wednesday, the Doctor was concerned about continuing with the Chemo for the day. The doctor held off chemo for 2 hours to see if she could get an X-ray for Cody, but she couldn’t get him one until the following morning. It was decided that although there was a blockage, the fluid could still go through the line and so he still had his day 3 of chemo. We got home at 6.30 Wednesday night, very tired. Still no time to relax because Thursday was bound to be a full on day and that it was.

Thursday morning, Cody started the day with his usual 2 hours of IV fluids. He then had an X-Ray to see what his port was doing. The X-Ray results indicated that the tip of his port line had somehow moved from the centre of his chest up to his neck!

After the X-Ray he then needed an Ultrasound and a Blood test. Just a re-cap, Cody hates being touched. To the point where he screams if any nurse gets too close to him, so at this point, as you can imagine he was very distressed.

After reading the results from all the tests, the Surgeon informed us that he would perform surgery and would either try to salvage the port line or put an entire new port inside him and it might possibly have to go on the other side of his body but they would find that out once in surgery. Thankfully, it didn’t have to be moved. He had his surgery and they put in a brand new port on the same side.

They wheeled him back to the room and he was still sedated. He wasn’t with us long before the surgeon then informed us he would next need another X-ray just to confirm the new port was in the correct position. He was then wheeled back to his room and then they continued to commence his 4th day of chemo. So summing up for the day of Thursday, Cody received an X-Ray, an ultrasound, a blood test, SURGERY, another X-Ray and a round of chemo all in one day.

Needless to say, Cody was not good Friday. He barely moved much. Vomited twice and barely ate anything. At 2 o’clock Friday, they started day 5 of Chemo on Cody as was originally planned. We finally got to leave hospital on Friday at 7pm.

This is the part of our journey where things are getting very real. We knew after 5 days of chemo that Cody was going to be low. But with Surgery on top of it all, it’s made things worse. He has so many medications to take, but the 2 most important ones right now are his pain meds and anti-nausea meds. If we can keep the pain and sickness at bay, then he will be well enough to eat some food. Then hopefully the food will help him have a proper bowel movement, which he hasn’t had in over a week – just to add to the party!

How is Cody right now? Up & Down. When the drugs have kicked in he is good. When the drugs have worn out or after he wakes up from a nap he is not good.

Our Sunday morning wake-up call consisted of Cody waking up at 6am crying. Ben saw that he had vomited. He sat in the shower with Cody while Cody shaked and cried. Cody is losing weight and with his bald head, its truly heartbreaking to see that he is now a fully branded cancer patient. We are now truly living the cancer life now with Cody. It is what it is. We can’t change it and there’s no one cure for it. The doctors have a plan of treatment for him and we just have to hope that it all goes well.

Once again, I don’t mean for this blog to be so depressing. It is however, real. It helps me get all my thoughts out. Hopefully, it gives everyone an inside view of what our family is going through and how our lives are changing.

– Elise x

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Codytherapy

4th May 2016

Hello Friends, Family and Strangers!

Just thought it was time to give an update on Cody’s progress. We are currently in week 3 of chemotherapy and so far so good.

Up until a month ago, I thought chemo was just one medicine called ‘chemo’ and had no clue as to how it all works. So I would like to give you all a basic idea of what Cody’s treatment is like.

It turns out chemotherapy is the term used to treat cancer, but consists of several different types of medicines given at different doses and stages so that the blood levels maintain a steady up and down level.

So during his first week of chemo, he had a 3 day week where he was treated with Doxorubicin, Vincristine and Cyclosphoside – big words huh? It sounded like gibberish to me at first too, but I’m slowly learning the words and pretending to sound like an intellectual when i say them. Except for when I stuff up the words and make up my own like ‘Cancer-oxide’ or ‘Chemo-cristine’.

During the Cyclosphoside days he will experience nausea, so needs to take anti-nausea medication. But the anti-nausea meds can make him constipated so we need to give him Lactulose to combat with that, its funny, but awful at the same time.

Week 2 and Week 3 we were only in for half a day, for Vincristine – this is the drug that makes your hair fall out. Aah, we all know that one!

Ive been checking Cody’s hair every night when I bathe him. Monday night was the first night I noticed hair loss but it wasn’t a big chunk of hair like I had imagined it to be. I rinsed his hair and a couple of strands came out & thought it could be nothing,  but when I rinsed a second time more hair came out. And now that I’m aware of it, I find when I stroke his hair now, usually a few strands come out. I’m assuming it might happen slowly. Ben is eager to shave Cody’s hair – and he will shave his own hair at the same time to match. I’ve had time to think about the hair loss and even though its like having a sticker on your head saying “Hey everyone, i have cancer”, his hair has always been thin anyway and he’s a boy, its really not a big deal to us.

So next week will be a big week of chemo. We will be in for 5 days worth of Cyclosphoside. Our doctor offered us the option of staying in clinic and traveling home each night, OR staying in the nice ward area and sleeping there for a week – We chose clinic. I have a Ben, a Jack, and a King Size bed waiting for me at home and that’s far better than what that the hospital can offer me!

A few people have mentioned to me that it seems odd that Cody is going in for treatment for a week here and then a day here so i hope this helps explains things better. Its all so his blood levels have a healthy up and down balance. The treatment plan that he is on has obviously been created to give medicine to Cody no more than what his body can handle. His blood work so far has been very much to plan, high one week, low the next, so that is good.

Cody. How is Cody going with the treatment? Well, if you came to our house any given day you would not know he was a sick little boy. He’s still full of energy and is usually running around the house or dancing most of the time. This is great and I’m cherishing it because I am fully aware he won’t be like this for long. He will soon get more anemic and sick. Surgery will be somewhere around week 6 or 7  and things will probably keep going downhill. Right now it is the calm before the storm.

When people say to me take one day at a time, I really do now, we have to! If I think about the ‘what if’s’ too much I would turn into a big Debbie Downer. So one day at a time, meaning today, Cody is a happy little chap, which means today is a good day 🙂

– Elise x

First Port of Call

17th April 2016

Another week down. I am sitting here trying to recall the events of this past week and its all just a blur as most weeks are now. Thankfully Ben has just relayed it all back to me.Last Wednesday we met with our Oncologist who gave us a rundown of the Chemotherapy, how it works, side effects and a very rough schedule of the treatment plan. The first week of Chemo will be a 3 day week. Depending on the drug used (which apparently we will soon know all the medical names) our days of chemo in hospital will vary from one day a week to five days a week. If Cody gets a fever, allergic reaction, etc, the treatment plan goes out the window and we play it by ear.

Meaning, from now on, it is extremely hard to plan ANYTHING because it will all depend on Cody’s health. We just have to remind ourselves its all for the sake of Cody getting better.

Side effects of Chemotherapy vary from person to person. The hair loss will happen maybe around week 3. I am prepared for it. But the day it falls out, is going to be like another one of those cancer bombshells.

On Thursday, Cody had minor surgery to have his Chemotherapy port inserted under his skin. Once again, we were prepared for the procedure, but when they wheeled him back to the room after 3 hours of surgery, his small body had me and Ben in tears. He was still asleep from the General Anesthetic, however, he was sort of whimpering in his sleep and would cry out in pain here and there. I sat next to his bed for an hour watching him. I thought if I stared at him long enough that maybe I could use some sort of Jedi mind power to transfer his pain over to me, so that i could bear the load of the pain and not Cody. If it were that easy, i would’ve taken the cancer off him by now and taken it for myself, but unfortunately, it doesn’t work that way.

I stayed overnight with Cody in hospital, but neither of us had much sleep as a nurse came in every hour to take his obs. Cody would drift off to sleep, then he would roll over or make a noise and I’d jump up each time just to make sure he was okay.

The next morning, Cody needed an infusion of Iron just to make sure his iron & blood levels had a nice, healthy start before starting chemotherapy. We were told it would take 6 hours and we would be able to go home at 6.30pm that night. As 6.30 approached, I got excited at the idea of finally going home and seeing my Jack. Jack had his last day of school for the term and I couldn’t wait to see him and hear all about his day. 6.30 came and went, the infusion didn’t finish till 8 o’clock. The nurse came in and then said Cody needs another drip to flush it out and then had to observe him afterwards to make sure he didn’t have a reaction, we wouldn’t get out of there until after 9pm.

I rang Jack and told him that we’d see him in the morning instead. I was upset afterwards. Ben reassured me that this type of thing would happen a lot. However, it wasnt reassuring. It just sucks. I hate not being able to be a family each day. And even though its only early days, I already hate the hospital. The thing that makes it so hard is that I KNOW being at hospital and Cody getting his medicine is the only thing that will get him better. And I’m sorry if it sounds selfish, but I hate how our lives are now based in and around the hospital. The novelty has run out very quickly.

We got a storybook from the hospital that explains Cody’s tumor in a simple way to Jack. Jack sometimes wants to talk about it and other times does not. He has a simple understanding of what is going on. He knows Cody will be starting his medicine this week and that Cody’s hair will fall out. Jack is a real caring soul and when he gets upset, so do I and vice versa. Today at lunch, he just started crying and told me and Ben that he misses Cody so much when he’s at the hospital. It made me cry then, and guess what? Its making me cry now! I probably share far too much information on this blog, but hey, this is our life. Each day is different as a family. Some days we actually forget about it all and have a heap of fun, other days we’re reminded of the reality that we are facing.

Tuesday is Cody’s first official day of chemotherapy. I’ll keep you all posted.

– Elise x

 

Clear Cell SarCODY

10th April 2016

So here I am on another Sunday morning. These days so much happens in one week it is very hard to remember what day it is.

After writing my blog last Sunday, I felt as if a huge weight was off my shoulders. The messages I have received since writing the blog have been truly overwhelming and comforting.

A friend suggested that I start a “Go Fund Me” account. I had never heard of the website, and went to investigate. The pages were filled with emotional stories of people in similar circumstances as us or people trying to raise money to help others less fortunate. With Ben needing time off work, I decided to start my own “Go Fund Me” page, assuming people would donate and we might have a spare $200 in savings. Well, the prices went above and beyond that and each time someone donated, Ben and I were very emotional and thankful. For those that donated, please know that you are helping take some of the stress out of our hands. This money means, if Ben needs a day off (e.g- In the last 2 working weeks he has had 7 days off) that we do not need to worry so much about our electricity, gas, phone, water, mortgage, rego, groceries, etc.

Last Wednesday was the big day we were waiting for. Cody’s Biopsy results. Ben worked in the morning and Me and Cody took Jack to school. Now the night before, I noticed the rear left tyre of our car had gone flat (you know, cos we’ve had such a BORING week after all). Ben was worn out Tuesday and quickly changed it over to a new tyre, which was a little flat, and told me to put air in it before school the next day, which i did, all good.
Wednesday, I dropped Jack off and went to drive home. As i got closer to home, the back tyre made a little bit of a noise but i kept going. I turned at the roundabout just around the corner from my house, the noise got louder, so i slowed to 20km. I thought if i went slow i could get home, i was so close. Nek minute…BANG! The rear of the car slides on the ground, the Tyre flips off and bounces down a nearby street like Bugs Bunny, boing boing boing! The car stops sliding because i must’ve braked at some point. I know all the men reading this are cringing and saying “Why didn’t you stop the car immediately?!” (Well, at least Ben is saying that).

I sat there, looking out the window, watching the tyre bounce down the street. I may or may not have said a swear word really loud at this point. Cody starts crying from the backseat. I get out the car. Suddenly a rain cloud appears above our area and it starts pouring with rain. I ran down the street to pick up the tyre. Nope, that ain’t happening, turns out Tyres are really heavy. I rolled it back with one hand while using the other hand to try to ring Ben…”Hi, you’ve reached Ben, I can’t get to the phone right now…” stupid message bank. I looked at the time, it was 9.30, we had just under 2 hours to fix this situation so we could get to our doctor’s appointment in the city. I thought to myself “Wow Satan, you’re doing a great job today!”

I rang Ben’s dad and he was on his way to help, but he was working half an hour away. Suddenly, a man pulled up in a ute and got out his car to look at the wheel. He told me there was no damage and said he could put the wheel back on. I gave him the jack and off he went working away. This stranger, asked me where I was off to today, so i told him my story about Cody. This man reassured me ever so kindly that everything was going to be fine. He told me he is a cancer survivor. He told me him and his wife lost their child at a young age and he told me his wife is currently recovering from a major operation. He assured me that you just keep going and you get through it. He fixed the Tyre enough for me to get home and went on his way. I regret not asking for his number or address because it honestly felt like God had sent me an Angel right when i needed it the most.

Ben and his dad got home and completely fixed the tyre and we set off for the hospital.

Our Oncologist met us and told us the Biopsy results straight away.
“It is not Wilms Tumor as we thought. Instead, it’s a more rare Cancer known as Clear Cell Sarcoma of the kidney. Its going to be harder and take longer to treat. Cody will now need both Chemotherapy and Radiation. We also need to scan his heart, bones and his brain to see if the cancer has spread”

We were in the doctor’s room for about another half an hour longer discussing things, but my memory is a little vague after this point. Me and Ben had walked in that office far too cocky, we had assumed that Wilms Tumor was the more common cancer so that’s what Cody had. We were not prepared for this news. There’s probably only a handful of 2 year olds in the whole wide world right now with this Clear Cell Sarcoma Cancer, why our Cody? Seriously? It’s not fair! I was so angry. Cody needed a scan of his heart in half an hour so we went for a walk to get lunch.

I rang my mum as I walked and told her the news. Her heart was breaking over the phone. None of us expected this. I hit a bus stop glass wall. Someone suggested i try some boxing classes, at this point, sounds like a plan.

Cody had his heart scan and the lady told us then and there that his heart was free from any cancer so that was a relief.

The next day, Cody had his bone scan. Instead of general anesthetic, they gave him medicine that makes him go to sleep. In most cases, it takes 5 – 15 minutes for the child to go to sleep. On our little darling it took one hour. He finally went to sleep and we put him on the bed to scan him. He woke up and started screaming. The nurses grabbed the special tape and started taping him to the bed. Cody broke through the tape twice, before crying himself to sleep. You see our Cody is a very strong little 2-year-old, this is good, this means he’s going to beat this cancer.

Friday, I took Cody to get his MRI done. We were sent to DOSA, so I expected to be there all day long as usual. At 8.15am they called Cody’s name and said they were ready, i nearly fainted, there’s a first! This time he did have a general anesthetic. I tell you, it never gets easier watching his eyes roll backwards and his tiny body go limp.

Our next appointment with the Oncologist wasnt until the following Wednesday. I assumed we wouldn’t find out the results until then. However, Friday at 2.30 I got a call from the doctor.
“Hi Elise, ive got the results from the bone scan and the MRI here already, would you like to know what they are?”
My heart stopped beating. In that split second if she told me the cancer was all through his body, my world would come crashing down.
“Yes please, what are the results?” I said scared.
“He’s fine, cancer free. Its gone nowhere else in his body, just the right kidney only”
My heart started beating again, and I let out a huge sigh of relief, followed by tears,
“Thank goodness, that’s good, good right, I mean , is that good news?” I asked.
“YES!” she said excitedly “It’s very good news, I’ll chat to you Wednesday”.

I hung up the phone and immediately dialed Ben.
“Ben, where are you?”
“I just pulled up in the driveway, why’s that?” he asked.
I bolted down the hallway and out the front door, and told Ben the news. He squeezed me and we both stood out the front of our house bawling our eyes out. We were so relieved that the cancer was in the one place only.

It is still going to be a long journey and harder than what we originally thought, had it been Wilms. But we all feel so determined to beat this. Cody is like a little Hulk, he is so strong and that fighting spirit is what will get him through this.

– Elise x

https://www.gofundme.com/euxhg4n5