Scott S. Craun Foundation: The Rroller-Coaster of life just bounced.

Our Mission:

The Scott S. Craun Foundation is a non-profit charity created by Scott Craun (1975-2011), a registered nurse in Honolulu, Hawaii. Before Scott passed away from Multiple Myeloma, he took the initial steps to establish a fund that could perpetually aid island-bound cancer patients. Multiple Myeloma is a rare blood cell cancer. Scott's know-how as a health care provider AND a cancer patient lent his mission a laser focus on a specific population. Relatively, there are not many myeloma patients in Hawaii (less than 400). The nearest support groups are in California. This charity will make an important difference in the quality of some of these lives. Like Scott, these patients were told, "You have an 'incurable cancer.' Eventually, you will have to take a break from your work. And the most specialized treatment centers are 2500 miles away."

Scott's wish is to provide Hawaii's myeloma patients (or one family member/care-giver) with round-trip airfare to the Continental US for any oncologist-recommended treatment not available in Hawaii. Stem cell transplant, for example, can be a key to prolonging life--sometimes by years--as it was for Scott. Twice Scott experienced the hardships of this relocation for transplant. Scott had many of us to help him through this burden and he was eternally grateful; many other patients are not nearly as networked. Scott became acutely aware of their immediate need. He left behind documents outlining a non-profit based on incremental goals and longevity as priorities over huge sums of money. Ultimate success means for us to be still providing at least one annual flight on the day Hawaii is capable of all specialized myeloma patient technology. Or, even better: on the day MM is no longer deemed "incurable."

To turn Scott's efforts into reality, we will need your help. One annual donation per person--of any amount--is welcomed, along with your suggestions, fundraising ideas, and maybe a few volunteer hours at our events. All who donate will receive a personal message from our foundation updating you on our balance, expenses, number of donors, upcoming fundraisers, and goals. The specific language in our tax exempt 501(c)3 will be transparent to all. We report to every single donor as if they were an investor, beacause they are. The way we give to patients will be on a very personal basis, and we'll share those stories here. Thank you, stay tuned, and thanks to Scott for pointing us in the right direction! We're going to take what he started . . . and keep it going for as long as there is a demand.

Scott S. Craun Foundation. Domestic Nonprofit Corporation, State of Hawaii File No. 235294 D2.

Make out checks to: / send mail to:
Scott S. Craun Foundation
2700 S. King Street
Unit 11564
Honolulu, HI 96828
ph. (808) 772-0408

CraunFoundation@gmail.com

Tuesday, November 15, 2011

The Rroller-Coaster of life just bounced.

Well if you spend time on facebook and happened to look at my page over the past weekend you will see that my friend Jon posted on my wall. The first post mentioned not having internet access, which I now have, and the second dealt with my worsening back pain which landed me in the ER and then admitted to the Medical Surgical Unit of Kaiser. My order for pain management was a Morphine PCA aka "My Buddy" where ever I go he goes. a patient controlled analgesic device in which I can receive up to 11 mg of Morphine per hour.

In my last post I mentioned the discomfort of my back and the hopes that it was swelling. However the pain had been on a rapid increase over the past couple of weeks and continued to worsen. Even with doubling my pain medication for a week and then increasing this medication a week later the pain in my back was worse while the medication easily masked the pain and discomfort that I have in all my other "hot spots" (sternum, ribs, lower extremity joints). Lets just say (other then my back) I was feeling no pain.

side note: a couple months back I asked to have x-rays done on my back because I felt something was wrong ( I thought a lesion had fallen and I had a spinal fracture for sure). Since radiation was not really an option due to the suppression of my bone marrow the Oncologist convinced me that it was not important enough to x-ray at this time. At that time the pain medication was still strong enough to bring the pain down to a comfortable level of 3 out of 10.

Back to my admission and current situation. So even with tripling my pain medication my back pain continued to get worse, and my oncologist suggested I go to the ER for pain management since the clinics (oncology included would be closed on Friday as well as the weekends. Upon visiting the ER I was given 6 or more shots of Dilaudid and or Morphine with mild relief. I was Admitted to the Med/Surg Unit and given a CT of the Thoracic Spine or T-Spine. Abnormalities were noted but without comparing the Scan with my previous scan the Internist who admitted me was not able to give me a clear picture of what might be causing my pain. I was finally able have my MRI done on Monday Nov 14th. Throughout my spine the radiologist was able to view multiple bone involvements within the bones and bony prominences, However new to the equation was not the cyst I thought and hoped it may be (do to the abundance of cyst that I have had over the past few months) but it was a mass which I hoped it would not be so. Hence I never included it in the previous email. Not wanting anyone to think of the word mass.

Well it is a mass and I have debated on telling every or anyone for a little while longer what the DX: was but procrastinating the truth has never help in cleansing the air and energy around me and my disease. I am supposed to meet with my Oncologist Tomorrow, I am sure it will be an interesting bedside appointment. I talked it over with Kerri for a couple hours after receiving the DX: (since she made the MNF hospital BBQ / APEC Traffic Challenge) and was here for the Dr's cheery news.

At this time I do not know where it leave anything: My Current Chemo (being given, frequency, dose???)

The Tx of the Mass: Which will include Radiation (which will then have a secondary effect on my chemo)

Other Test that may be run to look for tumors in other locations in which my pain has recently (but not to this extent) increased.

When some of the above is figured out.... I will let you know the dealy yo.

The Last Bit Of Cheery News is the numbness and lets say slight weakness the Mass has caused in my lower extremities. I will let you know all about it in my next blog post.