Update on Miranda


For those who do not follow Miranda on her site, but have been asking about her, here is an update.

First, a cute picture taken at the Macy’s breakfast for Make-A-Wish. Here is Miranda with Santa:


Full Page: http://www.flickr.com/photos/20449779@N06/4203735100/in/set-72157622918529097/

As you can see, other than the short hair, she looks like any other five year old girl. And since some mothers do cut their girls hair short, there is not much to show here.

She had her last scans the first week of December and she is still NED (No Evidence of Disease). The next scans are in April, if I remember correctly. We have moved out the schedule a bit, which is nice. one and half years down and three and a half to go. She is now at the point when most children relapse, so the tension will be going down after her April scans.

Here is one of all of the girls:

The Beamer Girls
Full Page: http://www.flickr.com/photos/20449779@N06/4203742546/in/set-72157622918529097/

Peace and Grace,
Greg

Twitter: @gbworld
Miranda’s site: http://www.caringbridge.org/visit/mirandabeamer

Joe Cook, Ironman


NOTE: This is the first of a few Ironman Louisville posts.

If you have never been to an Ironman event, it is quite an impressive (and possibly depressing) site. To get it in perspective, imagine the longest you have ever walked in a day and compound it with a swim and a bike ride. Here is how it stacks out.

  • Swim 2.4 miles (3.8 km)
  • Bike 112 miles (180 km)
  • Run 26.2 miles (42 km)

The impressive part is watching these guys (and gals) finish the race. The depressing part is watching them fall down after they finish or wobble around the half way mark of the marathon (run portion).

Most Ironman competitors run between 2 and 3 events a year, with a couple of half Ironmen in between. Then, there is Joe Cook.

Joe Cook

Our trip to Louisville was designed to be a celebration. Certainly for Eric, Tiffany’s brother, but even more so for Miranda, who had spent the last year fighting cancer. We found the bump on her back on August 23, 2007, the day we arrived for the 2007 Louisville Ironman. We complete chemo in April of this year, with one scare in early August with a small nodule in her lung (turned out to be benign).

There are many God moments in life, or strange coincidences for those of you not believing in God moments. Out of hundreds of rooms stretched across 14 floors, we end up next to Joe Cook. I will have to post the release I was drafting at some time, as it better conveys the moment, but that will have to wait.

In Lee Gruenfeld’s Ironman column, he calls Joe Cook an idiot. This is meant in a very friendly way, as the idiocy Joe is engaged in is running 6 Ironmen and 3 half Ironmen in 8 months. In all, this is 1054 total competitive miles of swimming, biking and running.

If Joe were merely running Ironman competitions to run Ironman competitions, I might agree with Lee that Joe is an idiot. But when one is an "idiot" with a purpose, he transcends to become a hero. After Joe began running, his neighbor’s daughter Ellie was diagnosed with ALL (Acute Lymphoblastic Leukemia). She became Joe’s purpose.

Joe Cook is now running for St. Jude’s children’s hospital as a St. Jude Hero. He has raised over $7650, but has a goal of raising $25,000. He is asking each person he meets to just donate 1 penny per mile ($10.54 total) to help fight childhood cancer. If you can spare $10.54, or more, click here to help him in his cause.

Peace and Grace,
Greg

Faith


I just finished a blog entry on Miranda’s site about faith. When I got through with it, I was amazed when re-reading the words. It was one of those "did I really say that" type of moments. So, I decided to share it here, as well.
 
I watched Larry King tonight to see Stephen Curtis Chapman talking about the death of his daughter Maria Sue (one of three adopted daughters) and the faith the family has in God. It was a great experience, although I found myself shedding more than one or two tears.
One of the most poignant moments for me was their description of asking God why and wanting to see why. The word that came back, over and over, was SEE. They later found a picture Maria had colored in. It is of a flower with six pedals (the Chapman’s have six children: Emily, Caleb, Will, Shaohannah, Stevey Joy and Maria). The center of the flower was colored in (in yellow) and only one pedal was colored in (in blue). At the bottom was the word SEE.
Life sends us bumps and it is far too easy to pitch away faith in God. But only if you never really had it in the first place. Faith is like skin. It cannot be tossed away like a cheap suit. It can be injured, burned and scarred, but true faith becomes a part of you.
One of the reasons faith is so easily shaken for some is they have the wrong view of God. When we think of God as the orchestrator of our lives, painting each moment, it is quite easy to blame him for not making a more beautiful song for us to listen to. If we see him as the painter, we wonder where our masterpiece is.
But this is not God. He does not sit and micromanage every moment of our lives. If He did, we would not have any choices to make, no matter how it might appear to us, as we would have absolutely no control. And if He did, we would have no right to be angry, because we would not be a person. We would merely be players in some play. When our movie was over, it would just be over. Where is the hope in that?
No, instead, He create us to be His children. He poured out His love for us and gave us the freedom to love or hate Him back. He realized this meant He had to let us go and live our lives without constant interference, as His interference would rob us of our ability to choose. But, He did not leave us completely alone. He gave us others to join us on our journey. This is why it is imperative that each and every one of us listen for the still small voice and reach out in service to others.
Tragedies are bound to happen. And, they hurt. But we are not the only ones hurting. God hurts to see us in such pain, but He realizes that all He can do is give us loving glimpses of His grace and mercy so we can SEE. That is the beauty. All we have to do is open our eyes and SEE.
Now this might sound like we are alone, but it is really not like that. God has a purpose for each of us to play a part in this drama. We have the freedom to ignore that purpose, the dark side of our free will. But, He sends someone else to fill the void when we fail to reach for our destiny. And He gives us as many chances as we need to get it right.
Through our journey, I have seen many small guideposts God has set before me to show me the way. I have also seen milestones showing I have reached the spot I was supposed to reach. And I am sure there are plenty of both types of markers I have missed. If only I had opened my eyes enough to SEE.
 
For the back story, Maria Sue Chapman (age 5) was accidentally run over by her brother Will (17) in her own driveway. She was rushed by ambulance to a helicopter that took her to Vanderbilt Children’s Hospital where she was pronounced dead on arrival. The funeral took place one day before her oldest brother Caleb was to graduate from high school. She was scheduled to be the flower girl at her sister Emily’s wedding, but ended up being buried in the dress instead. The Chapmans have adopted three children over the past few years and have a charity established called Shaohannah’s Hope (their first adopted daughter) to aid people in foreign adoptions.
 
Peace and Grace,
Greg
 

Lies, Damned Lies and Statistics???


I just recently got finished reading a post from AJs Dad (AJ Piniewski, who passed away from childhood cancer earlier this year). In it he compares the way cancer is funded (sheer numbers) versus how it should be funded (by person years lost). Here are his findings:

Cancer

Median Age at Diagnosis

Person Years Life Lost

New Cases 2007

New Cases 2007

5 Year Survival Rate

Person Years Life Lost

ACS Funding (millions)

ACS Funding (%)

Funding $ per PYLL

Prostate

68

9

186,320

19.2%

99%

16,769

$15.0

11.3%

$896

Breast

61

16

184,450

19.0%

90%

295,120

$29.6

22.3%

$100

Melanoma

61

16

62,480

6.4%

92%

79,974

$5.2

3.9%

$65

Leukemia

67

10

44,270

4.6%

51%

216,923

$13.8

10.4%

$64

Colo-Rectal

71

7

148,810

15.4%

66%

354,168

$17.3

13.0%

$49

Ovarian

63

14

21,650

2.2%

45%

166,705

$7.8

5.9%

$47

Pancreatic

72

5

37,680

3.9%

5%

178,980

$6.8

5.1%

$38

Lymphoma

64

13

74,340

7.7%

65%

338,247

$11.2

8.5%

$33

Brain

55

22

21,810

2.3%

34%

316,681

$7.8

5.9%

$25

Childhood

10

67

12,500

1.3%

80%

168,000

$4.1

3.1%

$24

Lung

70

7

215,020

22.2%

16%

1,264,318

$14.2

10.7%

$11

 

As much as I like this spreadsheet, raw numbers rarely tell the full extent of the story. So, I took it farther. Here is the short version of my findings, using the NIH monies, not the ACS (American Cancer Society). Cancer will be funded in 2009 to the tune of $5,654,000,000 ($5.6 billion). Of this, childhood cancer gets bumped up to $30 million per year. If you know of others, let me know, as I want accurate figures.

I have divided my numbers into different groups:

1.       Overall Funding by % total diagnosis – How the funding should break down based on the numbers with this type of cancer, as a percentage of all cases.

2.       Overall funding by % total death (based on 5 year mortality) – How the funding should break down based on the numbers who died (5 year survivability) with this type of cancer, as a percentage of all deaths.

3.       Funding per person – raw number of $3,934.09 per patient as the standard. This is dividing number of dollars total by the number of cases.

4.       Funding per death – raw number of $9,995.58 per death as the standard. This is found by dividing the number of dollars total by the number of deaths.

5.       Funding per PYLL (Person Years Life Lost) – raw number is $1297.10 as the standard. This is found by dividing the number of dollars by the number of years lost. PYLL is found by taking the median diagnosis age and substracting it from the median death age in the US (rounded to 76). This is then multiplied by the number of deaths to get the PYLL. Overall the median age for all cancers yields a PYLL of 4,358,967.

I then took the raw numbers and the over and under funding and turned them into percentages, using the formula ((funding/expected funding)-1)). This is not a perfect calculation, but it works for a raw picture of what we are looking at.

Of the NIH funding, the percentage of the $5.654 trillion breaks down as follows:

1.       Brain – $183 million (3.24% of funding), 1.52% of cases and 2.31% of deaths

2.       Breast – $703 million (12.453% of funding), 12.84% of cases and 7.24% of deaths.

3.       Cervical – $96 million (1.7% of funding), .77% of cases and .68% of deaths

4.       Colo-Rectal – $282 million (4.99% of funding), 10.35% of cases and 8.83% of deaths

5.       Liver – $90 million (1.59% of funding), 1.49% of cases and 3.25% of deaths

6.       Lung – $249 million (4.4% of funding), 14.96% of cases, 28.61% of deaths

7.       Lymphoma – $158 million (2.79% of funding), 5.17% of cases, 3.63% of deaths

8.       Ovarian – $103 million (1.82% of funding), 1.51% of cases, 2.74% of deaths

9.       Prostate – $344 million (6.08% of funding), 13.03% of cases, 5.07% of deaths

10.   Uterine – $22 million (.39% of funding), 2.79% of cases, 1.32% of deaths

11.   Childhood – $30 million (.53% of funding), .87% of cases and .44$ of deaths

Of course, these are just the raw numbers. Since children have an average age, at diagnosis, of 10, their PYLL (Person Years Life Lost) is high (66 years per person who dies).

Findings on Childhood Cancer:

1.       Overall Funding by % total diagnosis – Childhood cancer is underfunded by about $19.18 million with the new level under the Pryce Conquer Childhood Cancer Act.  This means it is underfunded by 39%.

2.       Overall funding by % total death (based on 5 year mortality) – Childhood cancer is overfunded by $5.01 million or 20%.

3.       Funding per person – Childhood cancer is underfunded by $1,534.09 per patient. As expected, this is 39% underfunding.

4.       Funding per death – Childhood cancer is overfunded by $2,004.42, which is 20%.

5.       Funding per PYLL (Person Years Life Lost) – When we go to PYLL, childhood cancer is funded at $181.82 per year lost or, to put it in underfunding amount, underfunded by $1,115.28 per year lost. This is an 86% underfunding.

Other findings

Because of its survivability, prostate cancer is currently the most overfunded cancer by PYLL. It is overfunded by 1006%. Ouch! By deaths, it is overfunded 20% and underfunded by 53% in raw numbers of patients.

Breast cancer is underfunded by 3% when you look at sheer numbers, but it is overfunded by 72% when one looks at either deaths or PYLL. Brain cancer is overfunded by 113% in raw numbers, 40% in deaths, but underfunded by 53% when one looks at PYLL. This is due to the younger median age for brain cancer patients, combined with a low five year survivability (34%).

Colo-Rectal cancer, Lymphoma and Uterine cancer are underfunded no matter how you slice up the numbers. In raw numbers (CR: -52%/LYM: -46%/UT: -86%), raw deaths (CR: -44%/LYM: -23%/UT: -71%), and PYLL (CR: -52%/LYM: -46%/UT: -86%).

Lung cancer also gets the shaft, but this is probably due to a stigma attached to lung cancer, as most lung cancer patients either are, or have been, heavy smokers. Since there is a huge stigma against smoking, this is probably where the bias is. Lung cancer is underfunded by (num: -71%/deaths: -85%/PYLL: -82%).

Cervical cancer is overfunded in raw numbers (120%) and raw deaths (148%), but underfunded in PYLL (-16%). Liver cancer, which has a low survivability (10.8%) is overfunded by 7% in raw numbers, but underfunded by 52% (raw deaths) or 67% (PYLL).  Ovarian Cancer is overfunded by 21% in raw numbers, but underfunded by 34% in number of deaths and 49% in PYLL.

Summary

AJs dad illustrated how childhood cancer is funded more from the number of deaths than any other metric. Looking at PYLL (Person Years Life Lost), we see childhood cancer (-86% of the funding expected using PYLL) as the second most underfunded cancer (Uterine is number 1 at -91%). It is also underfunded by 39% when one looks at raw numbers.

The picture gets a bit worse, when one considers that

The numbers here are likely skewed, as childhood cancer funding numbers are not easily found. It is known that drug companies do not research childhood cancer, as it is not profitable. They will research the use of adult drugs on children, once the drug is profitable, but the majority of childhood cancer research comes from either the National Institute for Health (NIH) or charitable organizations (last year the American Cancer Society put about $4 million into childhood cancer, for example).

If anyone wants the spreadsheet, you can download it here. I am certainly not trying to hide anything, but I do not want to take the time to de-Microsoft the overbearing XHTML from Excel, so I am not posting the table here.

Peace and Grace,
Greg

Update on Miranda


Some things in life just suck. Does not matter how you slice a sh*t sandwich, it is still sh*t. Other things don’t suck as much. We have a situation that sucks, but I am not sure if it really sucks or just sort of sucks. And doctors wonder why so many parents go to complementary or alternative medicine.
 
As many of you know, my daughter Miranda has been fighting cancer since some time last year (diagnosed with Ewing’s Sarcoma on September 1, 2007). In early September, they removed some nodules from her lungs (or at least we thought they removed all of them). Apparently, they did not remove one of them. During the treatment, it did not shrink, which led them to believe that the nodule was not tumorous, as the main tumor reacted fine. On her CT scan yesterday (my birthday), the nodule has grown from 2mm to 4mm. Her oncologist did not call until late, as he and the radiologist pulled out all of the film and examined the history of CT scans she has had. That is how they noticed that the spot had not grown or shrunk over the entire time of treatment.
 
Dr. Ho, her oncologist, has told me it is not a major cause of concern, but all of the things I read suggest it is more likely bad news than good. I am, once again, learning more about cancer than I ever intended. The questions to ask are:
  1. Is the nodule calcified. Not a firm indicate it is benign, but a good sign
  2. Is the nodule smooth edged or not? Smooth is generally better.
  3. If it was your daughter, would you wait a month to find out if it grew?

We are now in the position of decided whether to operate or wait until the next scan. The fact the other nodule was not cancerous is good news. The fact this one is growing is not. If it is benign, you don’t want to make your daughter go through an operation. If it is not, you want to know as quickly as possible, to avoid further metastasis. At 4mm, it is very small (a bee bee, if you will), so it is not that dangerous, but cancer is a tricky fellow and we really know so little about it.

Doctors generally give you odds, when they are being honest. They know that x out of 100 patients make it five years without incident. But, for each child it is not a percentage. It is either 0% (the child dies) or 100% (the child lives). The question I have to ask is whether the odds are better with surgery (some risk) or with waiting (some risk).

It is my sincere hope we are just a bit too paranoid and everything is going according to schedule.

BTW, there is some hope on the horizon. President Bush signed the Conquer Childhood Cancer Act, which pumps $150 million into childhood cancer research. And, there is a targeted drug for Ewings … unfortunately, it will not be used in humans for years to come.

Peace and Grace,
Greg

Caring Bridge Site


Tiffany has set up a Caring Bridge site. It is not filled in yet, but we will get to it shortly. It is located at:
 

Friday morning


We have now confirmed that the mass is cancerous. We are now figuring out staging to determine prognosis. No matter what, she will have six months or more of treatments, including chemotherapy. It is not the hand I would have like to have been dealt, but it is the one I must play with. I will write more when I have more news.