Monday, January 5, 2015

Eli had his mid-cycle chemo on Friday and is doing pretty good. He has a runny nose, and then all the normal chemo stuff and he seems to just be kind of low-energy. He and Caleb are part of a little Boy Scouts alternative club, and he really didn’t want to go to the meeting tonight. It’s hard to know if that is normal Eli unsocial or normal Eli don’t feel good. Either way, he was content to stay home tonight and go with me to take the girls to basketball practice. Over the holidays, we were gifted tickets to the Space and Rocket Center in Huntsville. It’s expensive to go, so we have never gone as a family even though it is in our “backyard.” I’m from here, and I’ve
only been twice as a tourist: once in fourth grade on a field trip, and once with Hg on an overnight girl scout trip. When I was a news
reporter in Huntsville, I did a couple of little feature stories about different things they were doing, and then one time it thought it might close, so I had been on campus for those stories. Other than that, I’ve just passed that rocket millions of times. For the kids, Hg had been on a school trip, and the overnight girl scout trip, but the others had not been. So, they were excited and we had a lot of fun.

We have been enjoying pinball, and I think my middle fingers and the top of my hands are sore from pounding the buttons. Vic remains top scorer, but time spent on it is in his favor. It’s fun to hear it rev up every now and then when someone (Vic) has walked into the room to play a round(s). We actually had a family interested in looking at the house this past weekend. Thankfully, we had a little New Year’s Day party planned to show off the pinball machine and to kind of kick off 2015, so we
 had been working toward that all week and the house was in pretty good shape. We start back to school this week, so I’m hoping to get back to normal and do less of what others want me to do and more of what needs to be done. Please, remember the families of Alaina, a 17-month-old girl, and Phoenix, a 14-year-old girl, both lost to cancer this past week. The new year is going to be empty for them. Prayers of thanksgiving for us, please.

Unrelated to the above, I just thought I’d share this: A friend sent me a link about Locks of Love from a blog not a news source. I couldn’t get it to pull up, so I don't know what it is about, but she
was asking that St. Jude help spread the word about Locks of Love - whatever that word was, but from the context it seemed to be
Eli under one of the Saturn V
rockets displayed at the center.
unflattering. As with most things, the burden of knowledge is with the individual. Resources are readily available for anyone, whether they be a donor or a consumer wishing to make the most informed decision they can about how, with whom and on what they spend effort (be it money, time or hair). Those resources can be cross-referenced for reliability, referrals can be contacted, feedback is out there for those wishing to make their best effort at making an informed decision about pretty much anything. However, sometimes, you just have to be glad someone is trying to do good. Our preacher talked about this yesterday. In John 12, Mary uses an expensive perfume on Jesus’ feet and Judas has a little come-apart with the excuse that it could have been sold to help the poor, which is true, but as a side note John explains the motivation of his heart. Jesus told Judas to leave her alone, she meant it for good. So, sometimes, you just can’t judge the
 need or worry about how your effort was used exactly. Make your best effort to know what you are doing, because I think that is the responsibility of a good steward, then just pray that your effort helps someone.

As far as St. Jude’s responsibility concerning other organizations, I don't think it can out other orgs. We have not been in need of a wig, but when it came time for Eli getting a "wish," St. Jude did point us to an organization for that, but it was up to us to look into it and follow-through with it, and if we wanted to use a different organization we could. In fact, we were contacted by another one, but the unspoken un-pointing to
other wish organizations made me leery of any but the one suggested. And there are many, some more reputable than others, so it was my personal judgement from St. Jude suggesting one instead another. I’m sure in an extreme case, if St. Jude knew there was blatant misrepresentation, it would just steer its patients another direction, But for the general public we all need to be aware, and the media should be more careful to report objective news and be less lazy to do it’s own research instead of relying on marketing.

Here’s my two cents about Locks of Love, but I have no experience with it, and I have not contacted anyone for information. If you or your children have donated to Locks of Love, I think that’s great!
We finally got to have Christmas with Betts. We had been sick
and didn't want to risk taking anything viral to the facility.
 The effort was for good, so nothing but good can come from it. So, I want to make sure that is understood, first. Locks of Love says on it's website that it is for financially disadvantaged children under 18 who will have permanent medical hair loss (I have read from other agencies and articles that very little goes to pediatric cancer patients because it is more for children with a hair-loss medical condition. The founder suffered from this condition as a kid, as did her own daughter, so that is why it targets that condition. Many cancer patients hair loss is somewhat temporary, although it does come back very thin and even only in patches sometimes, so maybe the org does not consider that “permanent”
We are a "1-2-3 everybody GO!" kind of gift openers. We like the
craziness and the mess of the paper flying, the kids yelling
in excitement at what they got. It's fun.
or “loss” enough. I’m not sure the reason for drawing that line beyond that helping cancer kids was not the original targeted population). The org has synthetic hair for short-term hair loss due to treatment (so your donation is not likely going to a cancer patient), and for children under the age of six (I assume because they are too rambunctious and a human-hair wig is too expensive to waste on rambunctious). It charges for the wigs (synthetic or human) unless a family can prove extreme financial distress, which is what I think people don't know. The website says that the wigs are "free, based on a sliding scale." Which is weird - it's either free or not free, what is it that is "sliding" on a “scale”? And one site said
The kids made us a New Year's cake.
that families are asked to “compensate” or “donate” according to their financial ability in order to receive a human-hair wig. The reality is that the patients' families are put through a lot of red tape and paperwork and require extreme proof of financial need (that is not realistic in this country). The application is likely denied due to financial status or due to the cause of hair loss, then a wig is offered at a price. By then the child is so ready and emotionally in need of it (whether it is permanent hair loss or just for 6 months), the family reaches beyond its already stretched pockets to pay for it. I'm sure Locks gives some for free to a few kids to be able to say it, but from what I’ve read it is not likely the org is as
 charitable with it’s human-hair wigs as people are with their hair. The org gets an okay rating from charity watchdog orgs as to the way it uses its funds, but hair can't be measured in dollar amount. The org has extreme requirements to donate hair, and says that if they deem the hair to be unfit for a wig, it will be sold for money for expenses of the org. Sadly, I read there is more hair deemed “unit” than “fit,” so most probably gets sold for money going to the org. How convenient that the org decides what can be sold and what is used and then decides if the wig is free. On top of that the IRS (a mess itself) can’t determine how much money the company actually brings in because worth of hair is unknown - so is
 it even really a NON-profit. Where I get my hair cut does not use Locks of Love when people come in to donate hair. My hairdresser said the reasons they do not use Locks is that it has a lot of hoops for them to jump through and that the wigs are not free to patients, so they use Pantene's Beautiful Lengths. It’s easy for the salon to participate in Beautiful Lengths, and all wigs are free to adult women cancer patients - so no kids, bummer, but still a good cause and it says clearly who your donation will benefit. Wigs For Kids is another one that is used (not the same as Wigs 4 Kids), and it is free to all cancer kids, but it does sell hair that can’t be used and the length requirement is longer. But, at least all the wigs are free, and they are human hair, and it is for cancer kids. That’s not to knock the Locks
Melissa tried really hard to reach Vic's score.
 founder mom’s work in growing a national company that creates wigs for kids with Alopecia. But if she is wanting to charge families - even people who can afford it realistically - it should be a for-profit company, then she could still donate wigs to needy children - the same as Pantene is doing. Most companies have a charity effort. But, a commercial company can’t get free advertising and news coverage, so a profitable non-profit is easier to grow. Anyway, if you are wanting to donate hair to cancer kids, check out Wigs For Kids, and there could be others - do your research, and just ask. Nestle Tollhouse had this big advertisement and drive going during September for Childhood Cancer month, and it said that it
The kids were all so excited to have friends
over. Being at the townhouse, we didn't have
room for any extra bodies. This is Caleb with
his homecoming buddy and classmate Rachel.
was to “raise money for childhood cancer.” So, first, I picked up the cardboard cut-out and looked for the fine print, and it was useless. Then, I asked the girl behind the counter, where exactly was the money going, and what part of childhood cancer was benefiting: research, medicine, supplies, a hospital, cancer families? She, of course, was less help than the cardboard. She finally found something that had an organization’s name on it, and I was going to look it up, but forgot. Anyway, my whole point, is always do good and be smart about it when you can.

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