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My daughter (now 14) has cancer. I want to talk about one of the most frustrating, painful, angering, parts of that experience. Not nausea, or hair loss, or even our health insurance. I'm talking, of course, about @MakeAWish, the worst charity I've ever dealt with.
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See the whole cancer story in my pinned tweet but essentially she was diagnosed in March 2021 with osteosarcoma. Multiple surgeries and chemo and now only has a tiny single tumor in her left lung. Not perfect but she's strong and living. Outlook is... Ok? Better than 50/50.
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When she was diagnosed and we were in that shock period, her oncologist, looking to deliver any sort of good news, said the team would make a referral to @MakeAWish and there was a good chance Makenna would qualify. It did give her hope. And something good to think about.
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After the doctor left the room, one of the nurses said (about the @MakeAWish comment), "Ugh, we really wish he wouldn't do that." That should have been my first inkling of trouble, but in my post-diagnosis fog it didn't occur to me. A sign of things to (not) come.
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Months went by during treatment. The first step in @makeawish process is a "wish box" - a shoebox thing for Makenna to put her wish ideas into. I remember jubilation at our house when this arrived. Along with it was a letter saying she was "medically qualified" for a wish.
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From stories we've heard, @makeawish can be opaque in terms of how "serious" someone's illness or situation needs to be to "qualify" for a wish. Nevertheless, in pediatric cancer world (the best family no one wants to be a part of), everyone qualifies. Score one for Big C.
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Fall 2021 Makenna's primary treatment ended, and she went into remission. Around December 2021, @makeawish folks reached out to collect Makenna's wish box and meet with us via Zoom to discuss her wishes.
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Jan 2022 we had the first Zoom meetings. The wish "granter" almost immediately said "no trips." COVID was still a thing and @makeawish wasn't doing trips.
Concerning for me - an organization which gave out thousands of trips a year hadn't figured out a COVID plan in 2 years?
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Concerning for me - an organization which gave out thousands of trips a year hadn't figured out a COVID plan in 2 years?
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Makenna's top 2 wishes were both trips.
#1 was to go to California or Canada (for @GAfamilyTV filming) on vacation and meet with @candacecbure & Jodie Sweetin of Full House/Fuller House fame.
#2 was Hawaii.
So she re-ordered her list, saying she didn't want to wait.
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#1 was to go to California or Canada (for @GAfamilyTV filming) on vacation and meet with @candacecbure & Jodie Sweetin of Full House/Fuller House fame.
#2 was Hawaii.
So she re-ordered her list, saying she didn't want to wait.
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On her revised list, she moved the trips down and put her new #1 at the top - a "she shed." She described it as a hangout where she could watch TV, have juice and snacks in a little fridge, chat with her friends, and escape the treatment life (and her brothers).
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Makenna shared specific details in these meetings with @MakeAWish folks. I remember them fondly. She clipped pictures and picked rugs.
I thought her ideas were terrific. She wants to be an interior designer when she grows up, so trust me - she had an eye for this stuff.
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I thought her ideas were terrific. She wants to be an interior designer when she grows up, so trust me - she had an eye for this stuff.
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@makeawish folks were similarly enthused. And in Feb 2022 they congratulated us - "Makenna has been chosen and we are going to make her dream "she shed" come true!"
We were grateful. But the minor foibles we saw before this point were nothing compared to what was to come.
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We were grateful. But the minor foibles we saw before this point were nothing compared to what was to come.
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March 2022, @MakeAWish contacts me to get pictures of my yard, details of where we want it placed, and challenges of the spot. Our yard is virtually flat and to bring the shed to this spot would be just a matter of driving across grass.
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Along with the pictures, I sent them specific details. This is just one of several emails where we've described Makenna's vision in writing
We believed they were taking this in and collecting these thoughts for the final delivery. We figured that would be Spring/Summer 2022
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We believed they were taking this in and collecting these thoughts for the final delivery. We figured that would be Spring/Summer 2022
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@makeawish folks told us they reached out to Town officials to clear permits, etc.
The problem was, they spoke to the wrong Town. Not our Town. A different one, in a different County.
This isn't huge, it's happened to us before, but it was the first big thing I had to fix.
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The problem was, they spoke to the wrong Town. Not our Town. A different one, in a different County.
This isn't huge, it's happened to us before, but it was the first big thing I had to fix.
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I got them connected with our Town officials and was copied on a conversation about permits.
Then almost two months went by. @MakeAWish employee asked me if I'd heard from the Town. I was confused... I forwarded them the email **they already received** resolving the issue.
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Then almost two months went by. @MakeAWish employee asked me if I'd heard from the Town. I was confused... I forwarded them the email **they already received** resolving the issue.
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May 2022. About 6 months into the wish process and 3 months since they promised my daughter her she shed.
The shed builders call us to ask about colors and stuff. We had already given this to @makeawish but we relayed the info once again. Make-A-Wish hadn't told them??
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The shed builders call us to ask about colors and stuff. We had already given this to @makeawish but we relayed the info once again. Make-A-Wish hadn't told them??
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June 2022. Shed builders call us - hooray! They are done building the structure. Now @makeawish needs to find someone to prep the site and do the details/inside, says shed builders.
I ask Make-A-Wish for details on her shed. They defer. This would become their pattern.
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I ask Make-A-Wish for details on her shed. They defer. This would become their pattern.
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Then, @makeawish goes silent. Months go by. No one has told me any details of the shed or when to expect installation. No one has told me if I need to run electrical or if they will.
I inquire but no one responds. My daughter keeps asking. She has (and beats) a relapse.
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I inquire but no one responds. My daughter keeps asking. She has (and beats) a relapse.
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Aug 2022, @makeawish tells me someone will be contacting me about placing the shed and "leveling" the ground. No one does. I write back 3 weeks later, they again say someone will be contacting me, weeks go by again, no one does. This is their pattern.
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The shed makers contact me a few times asking me if I had heard anything from @makeawish. They are also out of the loop.
In October 2022 @makeawish once again promises a call from someone. It never comes. I beg them to just help me find some gravel and I will do it myself.
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In October 2022 @makeawish once again promises a call from someone. It never comes. I beg them to just help me find some gravel and I will do it myself.
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Nov 2022 - a strange truck pulls in my driveway. It is the owner of the shed building company. He literally says he did not know if we were still alive. He hasn't heard from @MakeAWish in months and the shed is on their lot collecting dust.
Awkward for me, to say the least
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Awkward for me, to say the least
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Finally, in late Nov 2022, @MakeAWish tells me they are going to wait until Spring. Apparently they can't dump gravel in winter.
A very mild winter goes by, with plenty of chances to do just that.
We hear nothing from Make-A-Wish. We are a year into the process.
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A very mild winter goes by, with plenty of chances to do just that.
We hear nothing from Make-A-Wish. We are a year into the process.
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March 2023 goes by with no word. Then April. We are well into Spring weather.
No one contacts us. Instead, I email the regional director of @makeawish. I share my concerns that this is taking ridiculously long for a shed, and that the details have not been shared with me.
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No one contacts us. Instead, I email the regional director of @makeawish. I share my concerns that this is taking ridiculously long for a shed, and that the details have not been shared with me.
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Aside from the fact that **I** had to chase them down, I get a little positivity from the response. The director assures me this is a serious issue and they will get to me within the week.
The week goes by. No response. I get an email from his VP two weeks later.
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The week goes by. No response. I get an email from his VP two weeks later.
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Here is my very long email to the director.
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Here is his response.
Nothing detailed. Nothing addressing my concerns.
Just this. And an assurance they would follow up within the week.
They did not.
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Nothing detailed. Nothing addressing my concerns.
Just this. And an assurance they would follow up within the week.
They did not.
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Three weeks later (May 19 2023) I get an email from his VP, telling me the shed builders are "2-3 weeks out" from installation.
This is news to me. They are doing it now? Not another company? And what about all my other questions I asked the director??
I reply yet again.
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This is news to me. They are doing it now? Not another company? And what about all my other questions I asked the director??
I reply yet again.
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Note that I **specifically** say in my email that I am bothered by their inability to answer direct questions, and their foisting me off on other people instead of answering me.
Their response, of course, is to ignore my direct questions and foist me off on someone else.
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Their response, of course, is to ignore my direct questions and foist me off on someone else.
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I have been the only one dealing with @makeawish since March 2022.
Yet now, Make-A-Wish calls my **wife** to, yet again, "get details" of Makenna's wish from her and from Makenna. They give the same details again. They also ask for dates we will be away. Hold on to that bit
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Yet now, Make-A-Wish calls my **wife** to, yet again, "get details" of Makenna's wish from her and from Makenna. They give the same details again. They also ask for dates we will be away. Hold on to that bit
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@MakeAWish Note this person is someone different yet again from the others we've been working with.
This person copies my wife on an email back to the people in the office we've been working with, containing all Makenna's details and that we will be away for 2 weeks starting 7/5/23
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This person copies my wife on an email back to the people in the office we've been working with, containing all Makenna's details and that we will be away for 2 weeks starting 7/5/23
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@MakeAWish We hear nothing from @makeawish.
We shortened our trip, but 7/9 we left to drive from our home to @WaltDisneyWorld. We were towing our RV to stay at Fort Wilderness.
A brief aside on this trip...
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We shortened our trip, but 7/9 we left to drive from our home to @WaltDisneyWorld. We were towing our RV to stay at Fort Wilderness.
A brief aside on this trip...
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@MakeAWish @WaltDisneyWorld We are alright financially. But between expenses of cancer, my older son going to college, and the potential of Makenna needing to enroll in a trial in faraway Philadelphia, we are stretched extremely thin.
But Makenna is on her 3rd relapse now.
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But Makenna is on her 3rd relapse now.
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@MakeAWish @WaltDisneyWorld We took this vacation because we don't know if we will ever be able to take a vacation as a family of 5 again. Yes, I mean what you think I mean.
That's how special this vacation was, and how much we needed it to be peaceful and stress free.
Somehow we made it 1250 miles.
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That's how special this vacation was, and how much we needed it to be peaceful and stress free.
Somehow we made it 1250 miles.
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@MakeAWish @WaltDisneyWorld July 12. Our 2nd day in Disney. I get an email from @MakeAWish saying shed people are going to install "this weekend."
I reply within an hour saying we are in Disney until 7/18. They reply asking if "a family member" can be there. Our family lives 300 miles away, I reply.
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I reply within an hour saying we are in Disney until 7/18. They reply asking if "a family member" can be there. Our family lives 300 miles away, I reply.
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@MakeAWish @WaltDisneyWorld The next day (Thursday 7/13) @MakeAWish responds asking "if we need to reschedule." I reply and say I wasn't aware we had "scheduled" in the first place and that, given the delays and misunderstandings already, I don't want it done without me there.
Radio silence.
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Radio silence.
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@MakeAWish @WaltDisneyWorld Oh! I almost forgot. Leading up to our Disney trip, Makenna had been receiving packages in the mail.
A small battery operated lamp. A single bean bag chair.
Some kind of shelf and nesting tables that needed to be assembled.
It appeared to be items for the shed.
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A small battery operated lamp. A single bean bag chair.
Some kind of shelf and nesting tables that needed to be assembled.
It appeared to be items for the shed.
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@MakeAWish @WaltDisneyWorld But no word on what these things were. They just showed up. No word on who was to assemble them.
I brought all this up in my 7/13 email to @MakeAWish. You'll never guess what their response was.
No, of course you will... They ignored my questions.
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I brought all this up in my 7/13 email to @MakeAWish. You'll never guess what their response was.
No, of course you will... They ignored my questions.
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@MakeAWish @WaltDisneyWorld Friday, 7/14. We head to WDW Hollywood Studios. Suddenly, there is an email from @MakeAWish and my phone is BLOWING UP. They "need" me to call them. I say the hell with this. I need to enjoy my vacation. I told them 7/18 I'll be back. It can wait.
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@MakeAWish @WaltDisneyWorld They call my wife. Because, dear readers, you know my wife is a nice person, she picks up. I hear her telling people I'm here. It's the shed builders. It's Friday (@MakeAWish said "this weekend") and they are en route to our house to dig up the ground and place the she shed.
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@MakeAWish @WaltDisneyWorld Literally as we are walking on the Twilight Zone Tower of Terror, a favorite I hoped to share with my kids, I am on the spot with the shed builders
You see, @MakeAWish, of course, had not given them any heads up there was any problem with the install day. Until that morning
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You see, @MakeAWish, of course, had not given them any heads up there was any problem with the install day. Until that morning
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@MakeAWish @WaltDisneyWorld I am sick that this will be done without me there, but I don't really have much choice, I figure. The shed builders are a small business trapped with this shitshow just like me. I say "whatever". I tell my wife she'll be coming home to a shed.
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@MakeAWish @WaltDisneyWorld AFTER this, I get a text from @MakeAWish saying they "don't think we can stop" the shed builders from doing the work and "on the upswing Makenna will have a nice surprise when she comes home." The incredible tone-deafness is something to behold with these people.
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@MakeAWish @WaltDisneyWorld Sure enough, we come home and it's there.
Roughly in the right place (thanks to the owner coming out previously) but piles of dirt all around where I didn't want it.
And the inside of the shed is.... Barren. Literally nothing. Bare wood and splinters and a wasp nest.
Roughly in the right place (thanks to the owner coming out previously) but piles of dirt all around where I didn't want it.
And the inside of the shed is.... Barren. Literally nothing. Bare wood and splinters and a wasp nest.
@MakeAWish @WaltDisneyWorld Wife & 2 younger kids flew home Monday. My older son and I went on a 28-hour-straight drive all through the night to pull our RV home by Tuesday 7/18.
We are exhausted. I don't want to think about the shed, but there it is. It looks cute from the outside. But it's unusable
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We are exhausted. I don't want to think about the shed, but there it is. It looks cute from the outside. But it's unusable
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@MakeAWish @WaltDisneyWorld Two days later, I get this.
When I tell you that I admire the sheer freaking audacity of @MakeAWish, I am being sincere. If everyone had this level of absolute balls-to-the-wall audacity to ask this after the ridiculous mess I went through, we'd be living among the stars.
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When I tell you that I admire the sheer freaking audacity of @MakeAWish, I am being sincere. If everyone had this level of absolute balls-to-the-wall audacity to ask this after the ridiculous mess I went through, we'd be living among the stars.
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@MakeAWish @WaltDisneyWorld Needless to say, I wrote yet another long email detailing the process and everything we went through. I made it clear this was NOT Makenna's vision, it was NOT usable for what she wished for, and it was essentially just a monument to their ineptitude.
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@MakeAWish @WaltDisneyWorld Part of my email. I think I was holding back, really. After 2 years of screw ups, only to deliver something my daughter did not want, failing to keep their promise to her, I was measured in response.
(My wife convinced me to say "face" instead of "dick")
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(My wife convinced me to say "face" instead of "dick")
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@MakeAWish @WaltDisneyWorld And that brings us to now.
They replied. They want to speak to me like some kind of customer satisfaction survey.
They replied. They want to speak to me like some kind of customer satisfaction survey.
@MakeAWish @WaltDisneyWorld I don't know what I want.
First and foremost, I want no more kids to have to suffer as mine did. I beg you to find some charity doing good work to end childhood cancer and donate your last dollar to them.
Second, I want my daughter to be healthy.
But after that?
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First and foremost, I want no more kids to have to suffer as mine did. I beg you to find some charity doing good work to end childhood cancer and donate your last dollar to them.
Second, I want my daughter to be healthy.
But after that?
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@MakeAWish @WaltDisneyWorld I really want Makenna to see her vision come to reality. She put such thought & feeling into her wish and @MakeAWish just ignored it to get *something* done and cross us off.
I want those moments back I wasted on the first real vacation I've taken since she was diagnosed.
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I want those moments back I wasted on the first real vacation I've taken since she was diagnosed.
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@MakeAWish @WaltDisneyWorld Yes, I know, I got something for free. But did I? If someone promises you a trip to Disney World when you have a life-threatening illness, and 2 years later they take you to a booth in the mall selling knock-off Mickey Mouse shirts and wash their hands of you, are you happy?
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@MakeAWish @WaltDisneyWorld I don't want to seem ungrateful, but what (in @MakeAWish) do I have to be grateful for? If they'd done nothing, fine. But they promised something and then did less than nothing.
There are so many other charities that GET IT. That know what cancer families are going through.
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There are so many other charities that GET IT. That know what cancer families are going through.
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@MakeAWish @WaltDisneyWorld @curekidscancer_ there from Day 1 offering support right in the hospital.
@13thirtyCancer the coolest group ever for teens & young adults with cancer.
@AnnasWish makes Christmas magic for cancer families.
@WillieBeeCares the "little charity that could," always popping up to help.
@13thirtyCancer the coolest group ever for teens & young adults with cancer.
@AnnasWish makes Christmas magic for cancer families.
@WillieBeeCares the "little charity that could," always popping up to help.
@MakeAWish @WaltDisneyWorld @curekidscancer_ @13thirtyCancer @AnnasWish @WillieBeeCares None of these organizations would DREAM of putting a cancer family through what @MakeAWish did to us. Because they GET IT.
They know the last thing I need as a cancer dad is another goddamn house project to plan and pay for. The last thing my daughter needs is a letdown.
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They know the last thing I need as a cancer dad is another goddamn house project to plan and pay for. The last thing my daughter needs is a letdown.
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@MakeAWish @WaltDisneyWorld @curekidscancer_ @13thirtyCancer @AnnasWish @WillieBeeCares Good charities like those don't miss details. They don't miss deadlines. They don't miss communication.
They just help people. Maybe that's a lesson for all of us - don't promise to help someone. Just help them.
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They just help people. Maybe that's a lesson for all of us - don't promise to help someone. Just help them.
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@MakeAWish @WaltDisneyWorld @curekidscancer_ @13thirtyCancer @AnnasWish @WillieBeeCares I'll finish the she shed and it will be perfect for my daughter. I don't know how or when or with what money but I will. I just can't get all the time back, especially my soured vacation
I'll add it to the project list along with son's car, college, my car, house stuff, etc
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I'll add it to the project list along with son's car, college, my car, house stuff, etc
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@MakeAWish @WaltDisneyWorld @curekidscancer_ @13thirtyCancer @AnnasWish @WillieBeeCares In the meantime here's a palate cleanser.
Mickey Mouse came through lunch. He saw me holding Makenna's button saying "celebrating cancer survivor." Mickey (the person inside) was genuinely taken aback, and gave Makenna the longest, tightest, hug I've ever seen from a character.
Mickey Mouse came through lunch. He saw me holding Makenna's button saying "celebrating cancer survivor." Mickey (the person inside) was genuinely taken aback, and gave Makenna the longest, tightest, hug I've ever seen from a character.
@MakeAWish @WaltDisneyWorld @curekidscancer_ @13thirtyCancer @AnnasWish @WillieBeeCares Ok one more. The whole family getting ready to head out of Magic Kingdom (and home the next day).
Fin/
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Many people are asking about donations. That wasn't my point in posting but childhood cancer is slowly breaking down my will to not ask for help
Be warned, at Makenna's discretion anything you send may be forwarded to charities she feels have helped her.
https://t.co/VViYnpk8Pfvenmo.com/u/DanielKuhn
Be warned, at Makenna's discretion anything you send may be forwarded to charities she feels have helped her.
https://t.co/VViYnpk8Pfvenmo.com/u/DanielKuhn
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