Tag Archives: Children’s Organ Transplant Association

Why do we fundraise through COTA?

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Online fundraising is pretty common these days. It is very easy to set up a campaign. And we, as you know, are very tech minded and internet savvy. So why, in the era of FirstGiving and GoFundMe, Kickstarter and more did we decide to have our fundraising go through the Children’s Organ Transplant Association?

The answer is that this non-profit offers more than just an online place to collect donations. Here are a few reasons why we love COTA.

1. They are a non-profit. COTA is a 501(3)(c) charity. That means that donations are tax-deductible for the giver.

2. Donations can be matched.  They can work with many company’s donation matching programs. If you give, it’s possible your employer will also give. COTA also matched donations themselves.

3. They help fundraise. They act as mentors in fundraising efforts. So our local volunteers have had help in planning and executing events. They have helped publish press releases. They provided the means to do cell phone and printer cartridge recycling. (Yes, we still accept those.) And miracle makers we don’t even know have put together events benefiting our family.

4. They provide other support, too. I can’t tell you how many phone calls I have had with COTA staff. They listen when we need someone to talk to. And since transplant? I can’t call the without them trying to find one more way that they can offer help.

5. They keep donations safe. One of the drawbacks of fundraising is that large sums of money suddenly hitting your bank account can count against you in terms of taxes and other benefits. Fundraising through COTA makes it so we only deposit the money into our own accounts as we need it. Also, there is some security in knowing that there isn’t a risk of a company going bankrupt and disappearing with the donations.

6. The money is earmarked for transplant. This helps us a lot in our budgeting. Anything related to transplant, be it pre-transplant medical expenses, current and future medical bills, lodging, food, transportation, etc. is all covered. 100% of the funds raised are used for transplant expenses. The dollar figure you see on Patrick’s fundraising page is how much has been raised on his behalf and how much he can claim.

7. The donations help other families, too. Now, make no mistake. Money raised in Patrick’s behalf isn’t going to be spent in other ways. This is something people ask a lot. “Wouldn’t it be better to just give you the cash so we know it went to you?” We can claim the full amount donated as we need it. However, we also like knowing that if, by some unexpected chance, Patrick didn’t need all of the money raised for his own transplant expenses, that they would go to another child. We consider these donations sacred funds and wouldn’t dream of using them in another way.

Today is Giving Tuesday. A chance to take a break from the commercialism of Black Friday and Cyber Monday and give back to the community. We know that a lot of people want to offer help and that we are far away and there isn’t a lot that can be done. But helping us raise funds for Patrick’s transplant-related expenses is something that you can do. We’ve raised a little more than 30% of our goal.

This venture is definitely not a cheap one. Prescription co-pays alone are about $200 a month. That’s not including the costs of living out of the hospital or flying Brian back and forth. And this is going to be a lifetime venture. So every little bit helps.

To make a donation, just go to http://cota.donorpages.com/PatientOnlineDonation/COTAforPatrickH/ and click on the “Donate Now” link. If you’re not tech savvy like us, donations can be mailed. Just go to http://cota.org/userfiles/CheckDonationForm.pdf to download a donation form and get instructions.

So why did the blog change?

 

Thought I'd spice up this post with pictures from our visit to Dream Night at Hogle Zoo, courtesy of HopeKids. Patrick asked me to get out my camera in the seal-viewing area and struck this pose.

Thought I’d spice up this post with pictures from our visit to Dream Night at Hogle Zoo, courtesy of HopeKids. Patrick asked me to get out my camera in the seal-viewing area and struck this pose.

Thank you so much for your patience with the transition over to the new blog page. I see that some of you have already made it along with e-mail subscriptions and all. I added a new subscription for anyone who had been subscribed to cotaforpatrickh.com. You should have gotten an e-mail from WordPress prompting you to confirm. If you got it right, then you got a notification of this post in your e-mail.

Anyway, I’ve been asked a few times a question that I want to clarify. Some people are wondering if the switch means that we are no longer fundraising with COTA.

The answer is, OF COURSE we are still working with COTA. They have been a wonderful support to us. We’ve raised $21,921.81 so far which is AMAZING! And they have still been an amazing resource for us. I can’t even put into words how kind and concerned they are every time I talk to them.

So why the change?

A couple of weeks ago, a COTA representative called me because the website domain was up for renewal. It has been 4 years since we started fundraising. Can you believe that? 4 YEARS!

4 years ago, COTA asked me to move our blog onto their web platform and servers so that they could help us make sure that our online fundraising presence followed all of the rules and regulations required by the 501(c)3 status. 4 years ago, we had a committee planning monthly fundraising events. We were new and required a lot of supervision.

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But now, well, we’ve been at this for some time. We’re a little more seasoned. We don’t need someone to screen all the posts to make sure we got the verbiage for fundraising right. Our campaign has gotten smaller and a little less busy.

And so, we can follow a little bit more lenient set of rules. My personal blog no longer is required to be hosted on their servers.

If you remember, back in the day when I had time for personal hobbies, I was dabbling quite a bit in graphic and web design. I have been itching for years to get control of my own blog design back. To get features like tagging and categories and an automatic Facebook and Twitter feed. (And a smoother CMS to work with so that posting blogs would feel like less of a chore and I’d do it more often.) I am thrilled to have the option to post pictures and quick blog entries from an app in my phone. I think I’ll do a better job sharing with you more often. And, as icing on the cake, I could save COTA the cost of maintaining my domain and hosting so that that annual fee could go to helping another family with their transplant expenses.

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So, long story short, I jumped at the chance. I’ve been backing up this blog for the past couple of years, but I decided to take advantage of having to sit up half the night waiting to give antibiotic doses and get the rest of the blog moved. Pulled it off in just a matter of days.

And here we are.

We have not given up on COTA and they have not given up on us. You can still make donations through the links on the top right-hand side of the page. We are still collecting used cell phones and ink and toner cartridges and other assorted electronic devices. And we are still open to putting together big fundraising events, if you have any great ideas. In fact, I’m thinking maybe it’s time for a new batch of “Got Guts?” shirts, since we’ve got a new domain. (That project may take me days, or weeks, or months.. but it’s in my little head.)

And I am SO VERY excited to be able to continue to share the story of our journey with you at this, our new blogging home.

If you haven’t subscribed already, there’s a box in the sidebar on the right.

Or you can follow the twitter feed at https://twitter.com/HoopesPatrick

Or the facebook page at https://www.facebook.com/PatricksGotGuts

Thanks to all who helped with Produce for Patrick

Last Saturday, friends, neighbors and family put together a produce stand in Patrick’s behalf.

I just wanted to take a moment to thank all those who helped to make this event a HUGE success. Over $500 was raised in that day as generous people came to buy the fruits and veggies that had been donated. There was an amazing outpouring of generosity from loved ones and strangers alike in donations from 25 cents for a cup of lemonade to far more than the value of the fruits and veggies taken home.

Thanks to Tifanie who had this idea and spent countless hours talking to neighbors and picking fruits and veggies to make this stand a reality. Thanks to Kari, Amber, Jill, and others who gave time to help in gathering the donated harvest. Thanks especially to those who offered the surplus from their gardens and fruit trees.

Thanks to my friends and family who helped in the planning, setup, and manning of the stand, especially to Mom and Jill who’ve put so much work into pulling together our COTA campaign.

Thanks to Chris and Bella and the other kids who helped with the lemonade stand and tenaciously tried to sell a cup to anyone and everyone who arrived at the stand.

And finally thanks to those people who came out of their way to buy from our stand and to strangers who saw it driving by and stopped. We wondered going into this if anyone would stop and buy fruit from a stand that was only there for a day. We were overwhelmed by the response.

I’m hoping that some of the people who were there will share their experiences here on this blog. It was definitely a day to be remembered.

This little stand gave us hope and got us excited for what the days ahead. I can’t wait to see what other little miracles are in store.

Children’s Organ Transplant Association

I wanted to take a minute to tell you about a group called theChildren’s Organ Transplant Association. This is a charitable organization devoted to making organ transplant available to children, regardless of financial circumstances.

The estimated price tag on a small bowel transplant is approximately $1 million. We are fortunate to have very good insurance and to be pretty solid financially right now. Nevertheless, every doctor’s visit, every trip to the E.R., and every new medication comes with a co-pay. And while we have an out-of-pocket maximum, it doesn’t apply to co-pays. Right now, that’s expensive, but manageable. After transplant, we are looking at doctors visits several times a week and about 50 medications at a time.

Besides the medical bills, an out-of-state transplant center brings its own expenses. We pay for transportation and hotels every time we go for an outpatient checkup. When transplant comes, we’ll need to book a flight at the very last minute, meaning steep airfare or, even more pricey, a charter flight to get to Seattle in the required 6-8 hours. Then we’re looking at splitting our income across 2 states for about 6 months as I stay with Patrick during his recovery while Brian works here at home.

If I think too much about it, the logistics of this make my head spin.

We’re doing all we can to save while times are good right now. Unfortunately, the more we put ourselves on solid ground, the more “needs-based” programs we are disqualified for.

Enter the Children’s Organ Transplant Association. COTA, as they call themselves, is a 501(c)3 charitable organization. Their purpose is to facilitate fundraising for children needing organ transplants. Funds raised are donated to COTA in Patrick’s behalf.. meaning they are set aside to help cover Patrick’s transplant related expenses.

These funds can help cover any of the costs I mentioned above. They cover anything related to the need for transplant (meaning all the medical stuff we’re doing now both in Salt Lake and in Seattle as well as, for example, medical expenses when he’s an adult that result from being transplanted.)

We have set up a fundraising campaign in Patrick’s name with COTA. It’s being organized by some of my family members and is staffed by family and friends. 100% of what is raised will go to COTA to cover transplant-related expenses. Donations are tax-deductible and some companies will match donations. On top of that, COTA has it’s own matching and incentive programs. COTA estimates we need to raise $70,000. Funds Patrick doesn’t use, for whatever reason will benefit other children.

I’m asked all the time what more people can do to help us. Well, this campaign could use help. It’s all run by volunteers, so if you have some time or ideas, then you can be of help to us. A training/planning meeting is planned for September 1st.

Transplant Pre-evaluation: Day 3

Tuesday morning found us back at Seattle Children’s again bright and early. Our day started in ultrasound. They wanted images of his digestive system and the central-line eligible veins in his neck. With so much to image, we had 3 hours scheduled with ultrasound.

Keeping a 6 month old still for 3 hours while goop is being rubbed around on his abdomen and neck is quite the feat. We went through every toy that I’d brought along… rattles, books, rings. In the end, the only way to keep his head still for images of his neck was to let him watch my cell phone’s media player. It was interesting to watch them map the flow of blood through his veins and to see his broviac line. Patrick was a big fan of the black and white images on the screen.

In the end, the ultrasound took 3 and a half hours, not 3, and we had to run to make our next appointment with the department social worker.

Because the transplant process can turn your life completely upside down, part of the workup is a meeting with the social worker. She asked a lot of questions about us to make sure that we were up for the task. We talked about our coping mechanisms, our family, friends and other support systems. She told us about programs in place that could help us like the Ronald McDonald house (as a place to stay during Patrick’s recovery), Angel Flight (for transportation to and from many doctor’s appointments in Seattle, and the Children’s Organ Transplant Association(a.k.a. COTA, a charitable organization that will create an account to save and fundraise for transplant in). The social worker will be our go-to person for a lot of the logistics of planning and paying for the transplant, which will be invaluable, as this is not easy or inexpensive by any means.

Because we were running late, the appointment with the social worker was divided in two to give us the chance to meet with the surgeon, Dr. Reyes. Dr. Reyes is an expert in intestinal transplant. He’s originally from Brazil but you’d never guess it from talking to him. He explained to us a little bit about how the transplant works. He also explained the difference between an isolated intestine transplant (intestines only) and a liver-intestine transplant. The first would be done if Patrick’s liver were still in good condition. The chances of rejections are a bit higher, but if the bowel were to be rejected, they could remove it and wait for another donor. The latter would be done if his liver is in bad condition. The liver, pancreas, and intestine would all be transplanted at once, still connected to each other. The liver helps to protect the other organs from rejection – but if it is rejected, then the chances of finding another donor before the situation becomes fatal are pretty slim.

We were surprised when he asked us if Patrick’s small and large intestines had been connected. We had been previously told this wasn’t possible because the small intestine was oversized and the large intestine was pencil-thin from lack of use. But Dr. Reyes thinks it would be very beneficial to connect these. Patrick has a good portion of colon left that could help absorb water so that fluid loss would be less of a concern for Patrick and we could perhaps feed him more. This wouldn’t eliminate the need for transplant, but would reduce some problems in the time we’re waiting.

After wrapping up with the social worker, we ran over to neurodevelopmental. There a developmental specialist met with us. She took a quick history while we fed and changed Patrick, then she did her evaluation. This was probably his favorite appointment. Basically, she played with him to see what he knew how to do. The funniest was when she was testing his verbal repetition. She’d say “Aaaa…. Now your turn” and he’d respond by blowing raspberries back, since he’d just learned to repeat that sound and was quite proud of his new skill. In the end, her analysis was that he lacks some muscle tone, but that he is developmentally right on target for his “adjusted age”… meaning you subtract 3 weeks from his age because he was born 3 weeks early and he’s just where a 5 month old would be.

Our last appointment of the day was with Dr. Horslen the gastroenterologist. Dr. Horslen is one of the best known gastrointerologist in the world of short gut syndrome. He is from England and just transferred to Seattle from the very established program in Omaha, NE. He is oozing with British-ness. Patrick was finally napping by the time we got to that appointment so he slept while we repeated Patrick’s medical history again. Then Dr. Horslen examined him and he woke up and gave him a big grin. Dr. Horslen labeled him a charmer from the start.

Dr. Horslen told us that he and Dr. Jackson (our GI in Utah) have known each other since Dr. Horslen first arrived in the U.S. and said he respects him very much. He is very willing for the 2 of them to work together as a team. He did go on and tell us what changes he’d make if he were treating Patrick in Washington. 1) He said he’d reconnect Patrick’s intestines. (Which made us happy to hear… we’re excited about this possibility.) He explained that not only would Patrick have less water loss this way, but that the stoma can start to bleed uncontrollably as the liver fails… something that there’s no real reason to put Patrick or us though. 2) He suggested that we follow some of the suggested changes in diet and TPN. 3) He said he’d replace Patrick’s lipids with Omegaven (a topic I’ll have to cover in another post). They’re doing a study at his hospital and he’s allowed to distribute it in the state of Washington. 4) He’d do a contrast study of Patrick’s intestines… (Also to be explained later)… basically, take some images to see what’s there.

Then he threw in a 4 that we’d been expecting since the social worker ran into us at dinner and accidentally let it slip… He needed to see Patrick’s bloodwork right away to know what else needed to be done… And since Patrick was VERY anemic… He’d admit him to the hospital that same night so he could have a transfusion after the blood was drawn. They had a room ready for us to be admitted that night.

Now, in the interest of keeping this blog readable, for it’s length… and just for the fun of the suspense… I’m going to leave you in that cliffhanger until I find time to write again.