A quick update

I don't know if anyone still reads this blog, but I'm still going keep it updated!  
Last week was super busy for us.  On Tuesday, I had the opportunity to be on the channel 3 news to promote the Curesearch walk.  Let's just say I was a "little" nervous.  
Thursday was Briley's procedure day.  And then Friday was Relay for Life.  Alicia & I got on stage and told the Briley story. 
Here are a few things we are looking forward to in the months to come:  Briley will be attending a camp for Cooks cancer kids in July.  The camp will be somewhere south of Ft. Worth.  She will only be gone for a day.  The older kids stay for a week.  I know that she will have a blast!
Hopefully sometime this fall, we will go on Briley's wish trip to Disney World.  There's not a day that goes by that she doesn't talk about it!
And, from what I can figure, she will be done with treatments March 30th, 2013.  That's only 11 months from now!!!  Only 3 more Lumbar Punctures!!  It's easy to get excited, trust me, we are!  At the same time, we pray that she does not relapse.  It is nerve racking after each count check & each LP waiting for results.  No news is good news each time!  We'll keep moving forward & looking forward to nothing but good news in the future!  
Briley started Tball practice this week.  Her dance classes are going great!  And she will start kindergarten in August!  Outside of missing school once/month for a trip to Cooks (and probably a another day after LP's), she will be doing normal things!  And with a head full of hair!!!!!

New Clinic, good results!

We traveled to Fort Worth Wednesday night, met up with a buddy, and ate at Joe T. Garcia's.  Very nice atmosphere on the patio.  We actually got to the clinic on time Thursday morning (that never happens)!  We checked in and was quickly called back.  Briley's port was accessed and count checks done.  ANC - 1300, Hemoglobin - 10.7, Platelets - 110,000.  Her counts are still stable and that is great news!   She then got the vincristine chemo through her port.  After that, we had a little time before her LP.  So Ms. Amy, Briley's favorite Child Life Specialist, played with Briley basically the entire time that we were there.  She gave us a tour of the infusion room.  It was awesome!  It is BIG!  The patients have their own recliners and tv's during infusion.  There is also a separate room just for arts & crafts!  It is super nice!  If all goes according to plan, Briley will not have the chance to play in that room.  If she is in that room, that means something didn't go right.  But it's really nice and I'm excited for the other patients that are able to enjoy it.
Then it was spinal tap time.  The new sedation worked good, although it did hurt her some when the needle was stuck in her back.  She had versed before hand, so she doesn't remember a thing.  It was cool that we were able to be with her the entire time.  Alicia and Ms. Amy played the iPad with Briley during the procedure.  I sat in the chair and watched.  Just watching her go through this reminded me how serious her diagnoses is.  When things are going good, we sometimes get to relaxed and passive.  It hurt me watching the vials of spinal fluid taken out and replaced with chemo.  I want to trade places with her.   I reminded myself that she is not out of the woods yet and that she still has a long ways to go.  I am always reminded of Tatum.  We met her at her very last spinal tap.  Later that day, her parents were told that there were leukemia cells present in her spinal fluid.  She had relapsed.
I thank God for being with us and watching over Briley.  We have been extremely blessed to have things going as well as they have.  And we pray that treatment will continue on it's current path without relapse.
The LP went great and Briley felt great.  This was the best that she's ever felt after a procedure.  Normally, she would be nauseated and wouldn't eat for a couple of days.  We would grab fast food and get home as fast as we could before she got sick.  But this time she was hungry and happy!  It must have been because of the new sedation.  Briley wanted CiCi's pizza on the way home.  So that's what she got!
She slept most of the way home and she didn't feel good after she woke up.  She has to keep the big bandage on her back for 24 hours.  Bryson started rough housing with Briley after we got home.  So we showed him Briley's bandage and told him not to be rough.  He listened and wouldn't even touch her after that!  Then he wanted a bandage like her.........  That boy....
We appreciate everyone's support and would love to have continued prayers for Briley.  Thanks!
  

Spinal tap & chemo on Thursday

Well, it's about that time again. The 3 month spinal tap, port chemo, & steroids will happen on Thursday. I just made hotel reservations at the Holiday Inn Express for tomorrow night. We have to be at the clinic 7:15 Thursday morning.

Since the clinic has moved to it's new location, this will be the first time that Briley's spinal tap will be done at the clinic and not at the SPA. She will not be sedated with propofol as in the past, but she will now get versed/fentanyl. This has Alicia on edge more so than me. Alicia doesn't like change, especially if it was working great before. I don't blame her, but I think everything will go just fine, if not better. Briley will be able to eat and drink that morning before. She was not able to do so before the clinic move. Also, we should get out of there so much faster. No more having to walk across campus to the SPA, having to registry over there, wait for paperwork, and recovery time.

She will also start the 5 days of steroids. Joy (sarcasm)! I wonder what she will start craving this time? She will also get the vincristine through her port. If you had a chance to see her play, you may have noticed that she does not run like other kids. It's more of a fast shuffle of feet. This is due from the vincristine. It affects the feeling in her feet and legs. The sensation should not last more than a few days, but the mental effect from it last much longer. She took some nasty falls when she first started that particular chemo, so now she is basically scared to run without shuffling her feet. I hope this improves with time. She will start playing T-ball soon and I know she will do great, maybe just a little slower running around the bases.

Thursday will be a big change for us. Please keep Briley in your prayers that all will go well without long lasting side-effects. Thanks!

Why Curesearch?

Why Curesearch? I think that is a fair question for most. Most people have never heard of Curesearch. We had no idea about it until Briley was diagnosed. We were like most, we donated money and a bounce house every year to the Relay for Life teams and felt good about doing so. We also donated money to a breast cancer group that would call the house every so often looking for money. We felt good about doing that also.

After Briley was diagnosed, we are determined to do more to donate and raise money towards cancer research. That's when I heard of Curesearch, but I played it off at first since it would be easy and fun to put together a Relay team for the American Cancer Society and work with friends and family to raise money for research.

Then I heard a statistic, only .04% of my hard earned donations to the American Cancer Society would go towards pediatric cancer research. I was shocked, but I had to verify this statistic. It was right. I also looked into the breast cancer group that we were sending money to and found out that only 24% of the money we donated went towards it's intended purpose that they advertised. I was fuming.

Now, I research every organization out there before I donate. Most people would be shocked if they knew where their money is going with certain organization.

I have come to realize that the American Cancer Society (ACS) is not a primary funder of pedi cancer. And that's fine. I've read many stories of other families of cancer kids raising a ton of money for the ACS and only so little goes back to kid cancer research. It's kinda like donation money to the Susan G. Komen foundation for prostrate cancer funding. It's not going to happen.

I guess my purpose of this article is to raise awareness of where your money is going. There are many organizations out there that will direct your money to the specific type of research or program where you want your money spent. If you want to give your money to breast cancer research, then Susan G. Komen should be looked at. Also, there are many other good breast cancer foundations out there that also need the funding and may better suit your interest. And there are many that may only donate 10% of what you give and pocket the rest. Just a little research on your part goes a long ways. Let's not give to only the foundations that we are familiar with because they have the money to advertise.

I recently learned of The "V" Foundation. They fund all types of cancer research. Most importantly, 100% goes directly to research. That's big.

In comparison, the ACS only donates 16% to research. But, the ACS does offer many programs on education and financial aide for traveling expenses to and from treatment. However, a little more than a quarter of the ACS expenses are spent on salaries and overhead. This means, if I raise $100 dollars for the ACS, about $28 of that will be spent to pay salary and overhead. $15 to research. $.04 (4 cents) to pedi cancer. The rest goes to programs & education. I don't dispute that there should be same salaries paid and some overhead, but for me, that is to much money going towards things other than research. If you are ok with that, then that's ok with me.

We are doing Curesearch because we know that the money that we raised is going where we want it to. 94% of the monies will be used for patient education and for research. To break it down even further, something like 85% will go straight to research. And trust me, patient education is a good thing also. This is big! I can promise you that we wouldn't be involved in doing the walk if the percentage of funds going towards research wasn't so high!

We all want a cure for cancer, both in the adult and kid world. That would be awesome! However, the reality is, we really want better treatments with less side effects. These cancer kids get so much chemo that it is likely that they will developed late effects from the chemo later in life. Only one new drug has been developed in the past 26 years for pediatric cancer. Overall, only 3% of the funding in the US goes towards pediatric cancer research. There is not a market for pharmaceutical companies to spend much time developing new pedi cancer drugs.

This is why it is important to continue to fight for the kids and families affected by cancer. Please know that I'm not advocating taking money away from any other research, but I feel that it can be distributed better.

I will be on the TV3 news at noon next Tuesday, the 17th, talking about the Curesearch walk. We are also give the luminary speech at the Relay for Life walk next friday. Does that surprise you? Let me tell you, the relay committee knows how we feel about the ACS and we were still asked. Let's just say that I was very humbled. The speech is not about raising money for ACS or Curesearch or for whoever, it's about Briley and how this community came together for our little girl. I really can't think of a better stage to tell Briley's story than in front of Seymour folk that will come together for one night for one common cause. I can most certainly set aside my differences for that little bit and share our story with the town that fell in love with our daughter. And I hope that some of the folks will decided to join our team for the Curesearch walk in September.

The Curesearch website is www.curesearchwalk.org

If you donate to any organization and would like to check out how your money is spent, go to www.charitynavigator.org

www.charitywarch.org

Before making that next donation, go to these site. Especially if they call you on the phone and ask for money. Don't feel pressured to give. Ask for information through the mail. That will give you time to check them out.

We has a disable veteran group from florida call us wanting money. I nearly did, but asked them to send me info through the mail. A few days later, I got the donation form in the mail. Got online and looked them up. What do you know, they were red flagged! It was a scam! Like I said, know where your money is going!

Cancer has been terrible in my family the past couple of 2-3 years and I know first hand the effects it has on our family. I would like to start up a cancer support group in Seymour. We could do things as provide meals, travel, money, and such. We can also donate a portion to independent cancer researchers. But can this happen? Can we raise money for our local people and do away with raising money for other organizations that does what it pleases with the money. A lot of good could be done for local people that need the help. We know this first hand when everyone came together for us. Is it possible?

Counts are great!

Yes, I know, it's been a while since the last post. Things have been busy between maw maw's passing and Alicia, Byson, and I have been sick with the stomach bug. We are all better now! How Briley didn't get the bug, I don't know.

Briley and I made the trek to Cooks last week while Alicia stayed in bed sick. We had to cancel her appointment a couple of weeks ago because it was scheduled on Mawmaw's funeral day. We rescheduled for last week and that gave us an opportunity to check out the brand new clinic! Outside of not being able to figure out how to navigate the new parking garage, the clinic was super nice! There is lots & lots of room! We'll get to see more of it on the 19th when we go down there for Briley's spinal tap and IV chemo treatments.

Briley's spinal tap will be a little different this time. As for different, it will be done in the clinic so that we won't have to go down to the SPA anymore. She will not be put to sleep in the clinic. They will sedate her with either nitrous oxide or versed/fentanyl. This has Alicia worried silly that Briley will be aware of her surroundings and hurt during the procedure. I'm not worried about it at all, especially with the versed & fentanyl. It's the same stuff we use on the ambulance and I know how it works.

The Curesearch walk planning is coming along nicely. We are looking for team members, other teams, sponsors, & volunteers. I know it's still months away, but we are really excited to be a part of this. I will make another post soon about the importance of raising money that will directly benefit pedi cancer research.