Light The Night....Yes again.....

Yes, I'm sorry, but I'm back with new LTN info. We're really getting some steam up now and I've sent a ton (107 to be exact) of e-mails out, but I know there are people who read the blog whose e-mails I do not have. So if this is a duplicate or triplicate for anyone, just ignore me.....no really...don't read any further....because I'm going to cut and paste the e-mail I just sent out. So read on if you haven't gotten an e-mail.............



Hi everyone,



I'm baa-ack. Seriously, just wanted to update you all on our walk. We now have a team with my niece Megan as the captain, and we're getting the ball rolling. I hope you will seriously consider joining us on Oct. 20th at Gwynedd Mercy College(registration 4:30pm, walk at 6:30p), as we walk to raise funds for the Leukemia/Lymphoma Society. We'd love to have a big crowd to honor Bob and Deb Teklits.



I know most of you know our history through the blog, but what you may not remember is how desperate we were last May when, after 2 courses of hi dose chemotherapy, Bob still had 90% leukemia cells in his bone marrow. There were no proven treatments to offer him so he joined a clinical trial and 2 months later he was in remission. The stem cell transplant he received this past May was, not so long ago, an experimental treatment. Now it is the one proven cure for this disease. Wouldn't it be wonderful if other drugs and therapies could be found? Especially for our dear friend Debbie who is currently out of remission, and in a clinical trial herself.

You can help us make this happen. New discoveries and great strides are being made every day, but like everything else it takes big bucks. If you are unable to walk with us, please consider making a donation to this most worthy cause. Not only could you save a life, but it can be the life of someone you know. A little melodramatic?? Maybe, but that doesn't make it any less true.



I'm going to enclose our team website address...we're called Team MazzTek....since we're walking in honor of Bob Mazzola and Deb Teklits. On our team page you can register to join us in the walk. Or just click on any team members' name to make a donation. It's very simple, you just need a credit card. Any amount you can manage is great...every penny adds up and we will appreciate any penny you can spare. But what I'm picturing is a huge team MazzTek walking with our lighted balloons on a crisp October evening. Bob and Deb both want to join us if they're up to it, albeit most likely in wheelchairs. But Megan who walked last year said it is a truly touching and stirring event, and they want to be part of it.



Please feel free to pass this e-mail on to anybody you may think is interested, who knows Bob &/or Deb and would like to know about it. Thank you in advance for any help you can give. And a million thanks as always for all the love, support and encouragement you've shown us thus far on this truly incredible journey.


Love, Mo

P.S. I'll try not to bug you too much, but you'll probably hear from me again as we get closer to the date. And thanks to all who've donated already.



http://teams.lightthenight.org/TeamMazzTek



http://www.active.com/donate/ltnPhilad/2089_momazzola



P.P.S If anyone isn't familiar with Bob or Debs last 2 years of living with AML, and are interested, I'm including their blog sites.



http://drbobsadventure.blogspot.com/



http://debbiesjourney2recovery.blogspot.com/



One last P.S. Debbies daughter Jessie is walking in Washington D.C and I want to include her fundraising page....She has pictures and everything (she's a tekkie). But some of you may want to donate to her page. Wherever you want, it will all go to the same place, and we are so grateful for anything you can do.



http://teams.lightthenight.org/teamteklits


So that's it. Please join us and help make this years Light The Night walk a big success.

Love, Mo

HUP visit

Good visit today,if it was not for the tpk. constructionwe would have been home in 3 hrs. the news was also good. the counts are rising-they are almost in the normal range. my appointments have been reduced to every other week. and most important i can now eat in certain types of resturants. no fast food, nofrsh fruit or veggies. i hope that i get some strength so that i can do more. there is no rhyme or reason to it; some days i shake with the slightest activity or fall asleep everytime i sit in the chair, other days i feel pretty good-i can read with out nodding off. Mo wants me to join in the"light the night", but i think i will need a wheel chair. ?anyone have a spare wheel chair? thank you for your prayers, bob

HUP visit

HUP was a mess yesterday. charlie's luck did not hold, we were there for 3 hours. but, the news was good; the counts are climbing, the host vs. graft reaction is under controll,and the cmv infection is gone. overall they are pleased with the results. as i see it, my main problem now is the high dose steroids. the steroids make me hyper and fatigued at the same time. they can not reduce them any faster,so i will have to put up with these side effects for awhile. seeing the other patients in the waiting rooms at HUP reminds me how fortunate i am. thank you for your prayers. bob

LIGHT THE NIGHT 2007

Dear friends and family,

I'm writing to let you all know that the annual walk for the Leukemia/Lymphoma Society is coming up in October. I am going to cut and paste an e-mail that my niece Megan sent out. Megan walked last year w/ friends in honor of Bob and Deb Teklits and she raised over $1,100. I'm going to walk this year and hope that Meg and I can encourage all our friends and family members to join us. If we could get as wonderful a turn-out as we had for the blood drive, what a great show of support it would be. So think about joining us. All are welcome, in fact, by October I'm hoping Bob could join in also. We'd have to put him in a motorized chair though as his knees would never last 2 miles. A goal to shoot for.........And if anyone is unable to walk and would like to donate, just visit Megs' LTN site and you can do it all online. Thank you for ALL the support you've shown us thus far. Bob has been feeling better and is much more his old self lately. And joy of joys, he's becoming interested in cooking again. He's also downloaded some things he's missed on his World of Warcraft game. Gosh, it all does my heart good. Thanks again. If anyone has any questions, just blog or e-mail us.....mobobmaz@msn.com. Below is Megs' letter.....


August 14, 2007

Dear Family and Friends,

I hope this email finds everyone in good health and spirits. I am writing early this year to maybe get the ball rolling and recruit some family and friends to walk this year and/or donate. Thanks to all of you, we successfully raised over $1,000 in 2006, and I have set a goal of $1,500 for 2007. Hopefully we can not only reach it, but exceed this total !!!

Here is alittle background for those of you who might be new to Light the Night. Light The Night is an annual Society event to raise funds for cures. It's the nation's night to pay tribute and bring hope to thousands of patients and their families. When I walked last year, it was literally the most heartwarming experience. Everyone... patients, families, friends- walk together, with lighted balloons, in the night... for one purpose- HOPE! Funds raised through Light The NIght Walk support the work of hundreds of the world's best and brightest researchers in their search for better therapies and cures for leukemia, lymphoma and myeloma. ANYONE can take part- children, adults, seniors... ALL ARE WELCOME!

The real reason I became involved in this is because two peole, who are very dear to everyone, were diagnosed with this disease. My Uncle Bob Mazzola and family friend Debbie Teklits have been fighting this with dignity for a very long time! They are two of the most caring individuals that I have ever met, and I am honored to be walking for them. Both family & friends have been walking with them through their journey, but LIGHT THE NIGHT is one BIG way that you can really become involved !!!

I will be walking at Gwyneed-Mercy College, on October 20, 2007. Walker's and families may begin coming at 4:30pm, and the walk kicks off at 6:30pm. There's a ton of food (really good, too... We hogged down dougnuts, gourmet coffee, toasted bagels, cookies, pizza...) and stuff for the kids, also.

If you are unable to donate/participate I urge you to contact your local RED CROSS. Patient's are in CONSTANT need of blood, platelet's, etc. This is crucial. There was a blood-drive held back in March, for Uncle Bob and Debbie, and there was a huge showing of support !!! ( www.givelife.org )

You can go to www.lightthenight.org and search for me... Megan Noon, or you can go directly to my donation page by clicking on http://www.active.com/donate/ltnPhilad/2089_MNooner .


Thank you for everyone's interest and support. Please keep those prayer's in full swing for Uncle Bob and Debbie, and come out and walk with us !!!




All my thanks,

Megan Noon



PS. If you would like to forward this email to any companies, or other friends and family... please do !!!

HUP visit

yesterday charlie macy drove me to HUP to see the dr. . charlie has good luck, we were in and out in just over 2 hrs. the news was good ; although i still have the same 4 "expected"complications from the transplant they are slightly improving. this week i will stop the antiviral drug and that will hopefully raise my blood counts [so i will not need platlet transfusions], and decrease my fatigue. in 2 to 3 weeks they will do a bone marrow to check the status of the transplant. that is the big test. my goal for the next 3 weeks is to keep current on the blog, answer my e-mail and start to do some cooking. thank you for your prayers. bob

The doldrums.

hello: sorry i haven't blogged, but i have been very fatigued and mentally stressed battling all these so called expected complications. to enumerate: the high dose steroids caused muscle wasting, weight loss,diabetes and the shakes; a viral infection{ CMV]led to increase in blood sugar and the use of an anti-viral agent which mo gives me i.v. twice a day, this anti-viral drug has its own side effects-fatigue, low blood counts that require platlet transfusions twice a week. in the last 5 weeks i lost 6 lbs. despite eating 5 meals a day not including snacks. today HUP called and added another 10 days of the antiviral drug, good grief.
now for good news: the bone marrow graft was checked and it was 93% of the marrow; the host vs. grft reaction is under controll and we have been able to reduce the steroids and the insulin; my ability to concentrate has improved. this week i left the house 4 days in a row; sun. at my brother bill's, mon. at HUP, tues.hennings market, wed. another market.
my new goal is to get into the kitchen and try to do some cooking.
i thank you for your prayers and good wishes. iwant to thank my former partners charlie macy for driving me down to HUP[x2],and leeand yvonne arano for tolerating me and encouraging me at our wed. games night. i promise i will blog sooner. bob

Day 71 Update

Dear friends and family,

Well, I have been sitting here for 50 minutes typing my heart out, hit the publish button and was directed back to the sign-in page, and when I got back to the posts all that was there was the title of my update, so forgive this short post.

We've had 2 very busy weeks between trips to HUP and CMMC for check-ups, drugs, labs and platelets. But things should be slowing down a bit now. Bob had his last enbrel shot this week so we're back to weekly check-ups at HUP. Bobs' CMV titer dropped from 1700 to 500, which is good, but he remains on the IV anti-viral med until the level is zero. We hope this is soon, b/c everyone feels that is the main cause of the drop in platelets, which he's needed transfusions of 2x/week. Bobs' blood sugars have been normal the last 3 mornings, prolly from the decrease in prednisone(he's down to 90 mg. daily) and the decrease in the viral infection, so he's dropping the insulin dose every night which is also good. Especially since he's losing weight again(8 pounds in the last 2 weeks), which is thought to be from the high catabolic state caused by the steroids. In the vanished blog I described what he's been eating, but now you'll just have to take my word that he's eating everything that's not nailed down. But the best news we've received came this week. Bob had an engraftment test done which was a blood study, and it showed 93% donor cells and 7% recipient, which means that the donor cells are engrafting properly, and is great, great news. It came at a great time too, b/c Bob and I were both getting a little depressed and discouraged. Bob's still fatigued and the past few days he's been bothered by tremors, due to a drop in his Magnesium level. That's caused by the cyclosporin, and his Mg. supplement is being adjusted accordingly. His hgb is remaining up at 13.0, but his white count has dropped to 2.8, though not unexpectedly from all the drugs he's been on. So we are still being diligent w/ the neutropenic precautions.
Bob is too tired to do much more than read or watch TV. In fact he bought an MP3 player and our buddy Joe T. downloaded a mess of books for him and got him all set up, so now he can just plug in his earphones and he's set......doesn't even have to hold the book. So many thanks to Joe for that. I also have other thank-yous while we're on the subject. Charlie Macy, our friend and Bobs' LMG partner took Bob to Penn twice, which was a huge break for me, and I can't thank him enough. And many thanks to our cousin Candy for the wonderful ricotta cheesecake and sister Santa for the breathtakingly beautiful flowers.....I enjoyed both the whole week. I also want to thank my niece Meg for the fabulous lasagne she made for us last Sunday(baked at our house). My Mother always made a mean lasagne but I told Meg she is now the official lasagne cook, and my Mom can rest on her laurels. I have also been remiss in not thanking George and Aniko for your offers of Anikos' wonderful cooking. Hopefully we will be taking you up on that soon. And to all the faithful bloggers, we do appreciate your keeping in touch. Mussie and MDF, thanks for inquiring about LTN. If anyone is interested my niece Megan is organizing another walk this year for the Leukemia/Lymphoma Society, in honor of Bob and our friend Deb, which will take place in October(way too far ahead for me to wrap my brain around yet, but i would love to do it this year). The website address is under the comments of the last blog.
Finally, MDF, wha's sup w/ your boy Barry? I've been trying to stay up to see him hit the big one, but he's not coming through. I hope it's soon so the "Barry watch" can end...............

Well, this wasn't a short post after all, and I can't believe it's nearly 2pm!!!! Again a big, big thanks for your continued support. And please forgive the long absences. Enjoy the rest of the weekend.

All our love,
Bob and Mo