Dears friends (via Chris Perry Thursday 30-Jun-2011)

Dear friends,

It is with tremendous sorrow that I must tell you our hero has gained her wings. I imagine she will soar over all of us to make sure we are all ok. Niki left this world with grace & dignity passing quietly in her sleep and on her terms this morning. We could not have asked for her passing to be more graceful. The children and I will grieve together standing tall with chins up at Niki’s sprits side for now and forever. We do already & will forever miss her terribly.

Please know that Niki lived an incredible life. The life of 10 people really. She never feared life or death. She enjoyed every moment, she laughed, cried, & loved with all of her being. Mostly, Niki lived while she was with us. Niki loved to talk to strangers of all walks of life, just to get their perspective on whatever was important to them. She taught others to be better people and to give of themselves. She reminded all of us with her writing, poetry, her heart to smell the flowers, enjoy the setting sun or the rising moon. All of this before being diagnosed with brain cancer.

Once diagnosed, she changed the rules a bit. She networked, researched, shared, studied, and made friends and acquaintances. Niki dove into the bt world with the same zest & dedication she had for living itself. As she put it, “I am fighting for my life and the lives of others”. It paid off. She bought herself time, entered Dr. Okada’s vaccine trial and we know this gave her another year to fight, another year to enjoy life with her family & friends. None of this could she have done alone. Recently, she had a hand in saving my step-moms life as an inexperienced surgeon attempted to remove her tumor. Niki’s work directly lead to Al Musella’s, “guide for the newly diagnosed” being given to, and which helped my parents to realize that they in fact had time and the resources to get to a BT center. Niki was so proud of her BT buddies, fellow researchers, and warriors. She gained the respect of her peers only with the help of these same peers. To all of you, I would like to personally thank you all for the friendships, the research, the tears, the hugs and the love… THANK YOU!!! I would also as that you not give up, push the envelope, test the boundaries and continue towards the cure. It will come!

Please hold off on flowers and the like. Funeral services will be announced in the coming days.

Thank you all,

Chris, Devin and Zachary

Instructions for donating to the Perry family

After conferring with chris and niki, we have decided to recommend the following with respect to donations to the perry family.

• 1. Her first priority is to take the trip described in below message. if you want to help with that and are prepared to send money right away, you should either:
• send it to: paypal.com, choose the send money tab and identify the recipient as follows: emailchrisperry@gmail.com
• please note that chris has the word "email" in his email address.
• OR write a check payable to Christopher Perry and send it via snail mail to:
• Christopher Perry
• 1539 South 7th Street, Floor 2
• Philadelphia, PA 19147, PA 19147
• United States

2. For donations that you wish to make over a longer term, to pay for expenses a month or later from now, please send check payable to the MAF (Medical Assistance Foundation) Donation Processing Center at  1710 S. Main Street Fairfield, IA 52556  write "Niki Perry" in the memo on check

Note that it is very important to put "Niki Perry" in the memo field of checks that you mail to MAF.

In-home hospice, wishes for a small trip

The following was posted by the Perry family as a note on facebook on 6/10/11
After oceans of tears, long conversations with the kids, consultations with doctors, and much consideration, my dear wife Niki Perry has decided to go into (in-home) Hospice. This was not an easy decision for Niki because she knows how many survivors and warriors follow her care/progress for direction in their own treatment paths. She does not want to discourage others from treating and wants to remind everyone that each person / cancer/ treatment reacts differently for each person.


Papers were signed this am and we now have addition resources to care for Niki. We want to thank everyone for all of the prayers, well wishes, fundraising, research etc. and asked that nobody give up hope in their own battles. Please don't give up hope for Niki either. We are working to improve her health soon so she may exit hospice and return to treatment. Niki has always exceeded all expectations so never count her out.


Niki has one immediate wish. She wants to take the kids to the " Log Cabin Hotel & Zoo" in Donegal, PA near Pittsburgh. When we could afford it, this is where we stayed during Niki's visits for the vacine trial with Dr. Okada @UPMC. This place has great rooms, and a small but full zoo. Some may recall Niki's facebook profile picture was of her favorite Yak. He was so ugly you had to love him. Zach's last day of school is June 21st, so I hope to get her there directly after. Obviously, as many of you know, money is "THE" object around here so any help with this will be greatly appreciated.


One more thing, I am certain I am overlooking a few but I want to say that without the support groups, friends, family, our children (who have been remarkable through all of this), fundraisers, research partners, event managers, folks who sent money and or prepared meals, helped do laundry or simply provided an ear to shout, scream, cry into, or those that rented cars or loaned us theirs etc... your help, hugs, and obvious love for my wife and our family is immeasurable. We simply could not have gotten this far without each and every one of you and are truly grateful for every single thing you have done for us.


Feel free to contact me directly with any questions. We will still be holding the benefit, and will continue to raise funds (because truthfully we can not do this on the $700/mo income we now have to get by on) as we continue to care for my hero, my teacher, my confidant & best friend.


Great Thanks to everyone,
Niki, Chris, Devin, & Zach

Niki's treatment is on hold. She is a bit stronger and taking some physical therapy I believe. The Perry's have been able to acquire two wheel chairs, one for the van and one for their 2nd floor apartment.Niki is spending time listening to music, benefiting greatly from family and all of the love and well wishes pouring forth on her facebook page and via other avenues. Their needs are essentially unchanged, but progress has been made on many fronts.

• They need the chair/stair/ lift so that she can get into and out of the apartment. This may be provided by an agency for no charge, but we still don't have a final word on this. She can't go anywhere until this need is resolved.
• Should she return to treatment, she will be able to resume the transport that she arranged prior to the grand mal seizure that hospitalized her. However, she will have to have the stair/chair/lift so that she can get out of her apartment to the transport and back up to her apartment after the treatment.
• She will still require a way to get about in general, aside from treatment transports. For that, they are preparing the van with a wheelchair and lift. The wheel chair is being fitted for her specific needs and the lift is still to be obtained. For obvious reasons, her mobility is critical and is their highest priority. As it stands, she is still trapped in the apartment.
• She needs a bath seat. If anyone has ever needed this item, you KNOW what a godsend it is.
• Niki needs a caregiver so that Chris can return to work. Chris is pursuing ways to meet this need, but there is no certain progress yet. Until there is some routine way for Chris to earn money, the bills continue to stack up.

www.cashmerebark.com/MAFdev/index.htm

Please support Niki Perry and family ...

If there is *anyone* in this world who exemplifies passion, energy, faith, and pure determination... it is Niki Perry. Amazing individual, warrior of Brain Tumor battle on all fronts. Fighting her own battle 5+ years now, un-relentless in seeking out new Trials, educating others and giving selflessly. 

One could *not* count on multiple hands & toes the number of lives she has touched.  We do know she has inspired survivors, care takers and by-standers to a point of frenzy, knowing that if not in this lifetime, then our children's life, there WILL BE a better treatment knowledge base for Brain Tumor patients.

Eventually, not soon enough, a CURE to end this horrific cancer will come forth...

Please connect to Niki on Facebook if you want to witness the zest for life, and join her in the march to tackle Brain Cancer!

Recent notes from Niki & Chris Perry .....

24-May-2011: Philadelphia Warrior Angel needs assistance. Niki Perry has fought brain cancer for over 5 years, lost homes, income, use of arm, legs. She has been a leader to the Brain tumor community, sifting knowledge, finding treatments, searching out study groups for us all. 


Recently having multiple seizures, last one cost her speech, ability to walk, one arm doesn't function. Trying to get to proton beam therapy for brain tumor treatment, but needs help. Immediate needs:

1. wheelchair lift for van
2. electric wheelchair
3. assistance with utilities, rent, groceries. 

Husband Chris had to stop working to become full time caregiver.  Join Niki's Army-she needs one to help her through this crisis. 


If anyone has these items, and could let them go free, or really inexpensively it would so be appreciated. Any assistance, help welcome. 

22-May-2011: ... I'm stuck on the second floor of my apartment, unable to read email or anything on that PC screen without seizing,  on 5-May I was able to begin  `Proton Radiation` treatments. I can't do that without an electric, chair lift which costs approximately 2500 to 3500 U.S. Dollars, installed. I can't write like I used to, but I'm still fighting to get my capabilities back to where they have been so recently. My capabilities have been slipping away for years and years, but I have always been able to write, creatively, then to report on BT research and trials, and always to share my love and support and help. 

A week and a half ago, I suffered a 3 plus hour grand mal seizure that interrupted my daily proton radiation treatments that I had finally started 7 days prior. These treatments seemed to bring on increasingly more frequent and severe seizures, though I had been seizing a lot just prior to their start. On Friday the 13th my husband found me on the tile floor of our bathroom fully engulfed in a grand mal seizure. I was hospitalized and stabilized -- a bit -- and now I am at home with my family that suffers from viruses, shock, and unrelenting stress. 

Unfortunately, like so many Americans, I find myself to be falling through the holes in the safety net. We are late on rent, my husband had to quit working so he can care for me, our utilities are about to be cut off, I can't manage a standard wheel chair in my apartment, because I don't have use of my hands, and I can't walk up and down stairs at all. We need to install a chair lift on the 18 stairs to our apartment, a wheel chair lift in our van, and we need an electric wheel chair for my use -- I can't wheel or steer a manual wheel chair.  

We are good people who just want to LIVE. We always do whatever we can for anyone we can help. If we can be stabilized again, I can resume what I do, which is to love my friends with all my heart, search and search for brain tumor treatments, inform, amuse, tickle and astound all my friends and family.

Please help!

Your tax-free contribution can be made to Medical Assistance Foundation

... 2006 a warrior starts battle into unchartered waters...

This excerpt from August 2006... post made by Niki in her Blog.  

So on the plane home I  suddenly realized he was talking about me having brain surgery, with likely extreme consequences, inside the next few months.  Major left turn of my own brain.  He had asked if I had a Neurosurgeon on Maui.  over my dead…well, you know, literally.I’ll end up back at Stanford.

Yet another composition of trials, tribulation, friends, love and passion from Niki... http://nikiperry.wordpress.com/2010/06/26/for-rick-close-and-mack-the-quack/