27. May 2013 · Comments Off on Be a Hero fundraiser & GiveForward website · Categories: Fundraisers, Thoughts

Close-up of human hands clasped together in unity against white backdropThe Be a Hero fundraiser on May 19th was a fun time for all and a success in collecting donations to support our family financially during this difficult time.

We would like to thank with all our hearts the generosity of those who have donated, by attending or through the silent auction, to the Be a Hero fundraiser. Additionally, to the many who could not attend and made contributions to the GiveForward website before and after to support the fundraiser. And to the following people for their time and generous donations to the silent auction for the Be a Hero fundraiser: Loretta Loibl, Bob Loibl, Dana Tynan, Janet Winkelman, Patrice and Kevin McCabe, Patrick Lannon, Greg O’Neill, Matthew Harvatt, Megan Matteson, Vaughnda Johnson, Terry Opalek & Michael Frontier. These are people that very generously donated items as a special favor. Jeff Loibl has worked his tail off with Fundraising. He has been running the Give Forward site and organized the Be a Hero fundraiser. I can’t even begin to tell you the amount of time and effort he put into the fundraiser. But he has been sending out emails and Facebook messages daily to keep people informed and ask them to help us. There is no way on this earth to say what is a meager Thank You.

I would like to draw your attention to the list on the right hand side of the page, under “Our Angels.” We wanted to acknowledge everyone who has supported us and helped us. We are astounded as to how long the list has become. Again, Thank You is too small a phrase to explain how we feel.

We would also like to thank all of you for your support through prayers, positive vibes, and pixie dust that you are continuously sending my way. Your comments and love help me get through some very dark days. This journey is far from over… I am at day 80 of the 100 most critical days during a bone marrow transplant, with only a handful of complications (knock some wood).

I am blessed by your love and support! Thank you!

~ Mark and Terri

We will be closing the GiveForward website on May 31st. To all of our Angels (over 120 individuals and families!), we thank you with all our hearts. Your gifts have made a difference in our lives financially and emotionally. It is very difficult for us to ask for any help, that is how we were raised and have lived our lives. But with humility and good advice from some family members and friends, we decided with the generous leadership of Jeff Loibl to open the GiveForward website. The GiveForward website was a good way to provide a way for people who wanted to support our family through this crisis. Donations are an important and very generous way to contribute and support families.

Quoting Jeff, “With every dollar you help raise or donate, you are helping them cover:

• lost wages during his hospital and hopeful recovery
• 2+ months of food and temporary lodging in St Louis, which is uncovered by insurance
• [monthly] insurance premiums
• medical and prescription co-pays
• travel and fuel expenses between Columbia and St Louis

Every aspect of this debilitating illness is costly. Not only financially; but mentally and emotionally. They are not sure when Mark will be able to go back to work or how much medical attention he will require [now and in the future]… That’s why we’re asking for your help in raising $35,000. This is the estimated amount needed to cover their expenses […] as Mark embarks on his long road to recovery.”

 

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Its been a busy week for all. Donations, donations, donations! Be a Hero fundraiser on May 19 and the silent auction. A trip to St. Louis to see the Med team. And I’m walking two miles a day on the MKT trail. Let’s start with the positive and go from there. 🙂

Donations to Thank

Terri and I would like to publicly thank the following people for their generosity. Typically, we have been thanking people through Facebook, but not everyone has an account; likewise, we have some donations from some wonderful people but no email addresses. Thank you – “someone who thinks you are wonderful” (our hearts were touched by your chosen name as well), Stephan Lampasso, Jennifer Fogle, and The Diversey Family.

Be a Hero fundraiser silent auction on May 19th.

Here are some important details on the silent auction:

  • Just because you can’t be at the Be a Hero fundraiser doesn’t mean you can’t be a part of it!
  • You can be a silent bidder by contacting Jeff between 1-5 on Sunday. Just text him with the item you’re interested in and he’ll update you on the current bid. Then just let him know your bid amount!
  • It’s that easy. So check out the items on the fundraising page then give him a text at: 773-575-4786
  • (All bids must be closed/paid out by 5:30. Payments are processed through the GiveForward page.)

REVISED FINAL LIST for Silent Auction

(suggested retails are not the opening bid amounts, but they give you an idea of the value)

  1. Quilt: queen-size, Grandmother’s Garden, hand-made by Loretta Loibl: suggested retail $500

    Grandmother's Garden

    Grandmother’s Garden

  2. Quilt: queen-size, Ramblin’ Rose by Loretta Loibl: suggested retail $500

    Ramblin' Rose

    Ramblin’ Rose

  3. Occasional table: white oak, English Chestnut finish, 12 X 35 X 30″ H by Bob Loibl: suggested retail $250

    Occasional table

    Occasional table

  4. Plant stand: white oak, English Chestnut finish, 30″ H by Bob Loibl: suggested retail $75
  5. Plant stand: white oak, English Chestnut finish, 30″ H by Bob Loibl: suggested retail $75936803_10201003234940766_1574450200_n
  6. 19×21″ framed original print of Johnny Cash, from the photographer, Dana Tynan: suggested retail $600

    Original print of Johnny Cash

    Original print of Johnny Cash

  7. $100 gift certificate to Fleming’s Steak House
  8. $50 gift certificate to Pastoral Artisan Cheese & Wine
  9. 36 Edwin Jackson Autographed Baseball: retail $100
  10. 5, ½-lb boxes of Terry’s Toffees: 5 different flavors packaged in 5 different boxes: suggested retail $85
  11. Twin orchids planted in decorative pot: retail $140
  12. Ready-to-fish kit from “Addictive Fishing” on Fox Sun Sports: suggested retail $240
  13. Afghan: hand-knit throw: Knitted by Jean Kemp 36″ x 72″ suggested retail $150

    Afghan: hand-knit throw

    Afghan: hand-knit throw

  14. Quilted lap blanket by Janet Winkelmann: suggested retail $100
  15. Handmade wooden bi-plane; approx. 14″ long with 13″ wingspan: suggested retail $100

    Handmade wooden bi-plane

    Handmade wooden bi-plane

St Louis Update

There is a silver lining here that I am looking for, but have not found. So I’ll start with the positive once again and maybe I’ll find it while I’m writing this. My GVHD in the gut did not trouble me this week as we reduced the Prednizone by 10mg (or 1/4). So we are dropping it another 10mg this week. Once again, we’ll have to wait and see what happens, so please rap on that wood and send some more pixie dust, positive vibes, or prayers my way, if you can. 🙂

I mentioned that the Med team and my Doc would be adjusting meds to find the right combination for me… it takes time and perhaps this is just a part of the big picture, and I can’t see the forest through the trees. In the last 3 weeks my platelet count has dropped significantly. On 4/29 it was 79,000, last week it was 69,000 and today it was 54,000. So we are running a bunch of tests, some take up to two weeks. It could be one (or more) of six issues, some are just adjusting the meds or giving me a new one, some are not so good. I’ll know some more or perhaps the answer next week. I’ve dealt with this level of a platelet count before, so I know how to be careful. On top of this, both kidney and liver levels are going up again, so it was back to the treatment room for more IV fluids and I’m drinking a lot of liquids this week.

I guess I was not expecting complications like this and once I get my head wrapped around it I’ll see the forest once again. Silver lining where are you?! Perhaps Terri will find it…

~ Mark

Silver lining huh? Our family is together. Mark is getting healthier everyday. No, we do not know why his platelet count is dropping, but Stephanie the NP did say that it is not something to get stressed out about now. They are running a bunch of tests to rule problems out and then they try adjusting the meds. Kinda what they have been saying all along… play with all the meds until they find the right combinations. The hard part is that, it is one thing to KNOW this, it is another to actually go through it. You just kind of going into this hoping that everything will go textbook and be perfect, and then… hello reality!

Did I find the silver lining? I don’t know. I do know this. I believe with every fiber of my being that Mark is going to get better and healthier and it is just going to have to be one step at a time. 

~terri

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11. May 2013 · Comments Off on BE A HERO · Categories: Fundraisers, Information, News and Updates

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Hi! It’s Jeff with a note about the upcoming BE A HERO fundraiser.

The event is being held on —May 19— and many of you have already received an invite via Facebook Events with full details. The fundraiser is in Chicago. Not in Chicago? …or if you can’t make it, please consider a donation. ANY amount is helpful and appreciated!

As a reminder this fundraiser is to benefit my brother-in-law and sister’s family in his fight against MDS. Because of Mark’s bone marrow transplant last month, he’s been unable to work and still won’t be able to earn a paycheck for the next 6 months, or longer. And the medical bills will keep on piling up that entire time…and longer because he will likely be on (very expensive) anti-rejection drugs for the rest of his life. Presently, he has Acute Graft versus Host Disease, a frequent complication of bone marrow transplants.

A little background. A little over two months ago, Mark started his battle against MDS (Myelodysplastic Syndrome; Robin Roberts from GMA chronicled her own fight against the disease recently). He took chemo for about 8 days to kill off his existing bone marrow and immune system. Then he took an infusion of donor stem cells to repopulate his system.

The little buggers are grafting on, but he has developed Acute Graft versus Host Disease in his gut, a frequent complication of bone marrow transplants, and he is reliant upon antirejection drugs for the long-term now. All of this has happened in a very short time frame, but the healing process is much longer. As he undergoes additional biopsies over the coming months and they adjust his medications accordingly, we are hopeful that the donor cells will completely supplant any hiding host cells. The end result is a happy, mostly normal life for him with my sister, Terri, and being able to watch their two kids, Caitie and Kai, grow up.

It sounds simple, but it’s not. It’s a painful, exhausting process and he has to basically rebuild his entire immune system as well as the red blood cells and platelets from scratch now. To put it in perspective, he’s learning how to walk around the block again without passing out.

That’s where he and his family need you. The fundraiser lets you be their hero by showing what a hero is. And if you can’t make it, please consider a donation here in lieu of attendance. Every dollar counts, both emotionally and financially, so ANY amount is appreciated.

WHEN: Sunday, May 19th, 1-6pm (family hour from 1-2pm; adult time starts at 2:30)

WHERE: Nolan Studios, 1770 W Berteau Avenue #205

ADMISSION: $40; your donation at the site below will count as your ticket. (Credit cards accepted).
http://www.giveforward.com/fundraiser/dgz1/supportingthegagnons

SILENT AUCTION:
• Handmade queen-size quilt crafted by mother, Loretta
• Custom-made entry/occasional table along with a plant stand straight from my father’s woodshop
• $50 gift certificate from Pastoral
• Gift from Circuit Mom Productions
• High-end fishing equipment
• And more!

50/50 RAFFLE

ART AUCTION

OPEN BAR AND FOOD PROVIDED

MUSIC by DJ Billy Brown

QUESTIONS: Jeff, 773-575-4786

DONATIONS
http://www.giveforward.com/fundraiser/dgz1/supportingthegagnons

GRAFT VERSUS HOST DISEASE EXPLAINED
http://www.medicalistes.org/gvhd/docs/what_is_gvhd.html

MDS EXPLAINED
http://marrow.org/Patient/Disease_and_Treatment/About_Your_Disease/MDS/Myelodysplastic_Syndromes_%28MDS%29.aspx

BECOME A BONE MARROW DONOR
http://marrow.org/Home.aspx

Monday/Tuesday

Good news on the almost home front. Blood counts look outstanding! Let’s recap, shall we?

Mark                                “Normal”

White Blood Cells     7.0 (up 2.6 from Friday)           3.8 – 9.8
Hemoglobin              10.9 (up 0.7)                          13.8 – 17.2
Hemocrit                   31.7 (up 2.9)                          40.7 – 50.3
Platelets                   74 (up 20)                                140 – 440
Neutrophil                 6.0 (up 2.6)                              1.8 – 6.6

tumblr_lzxziiuM9X1r3ec6wo1_500The way they measure neutrophil count for out-patient is a little different than when he was in the hospital. We were looking for that magic 1500 number. Obviously the ones I am reporting look much different. Never fear though, they have not dropped thousands. For example, 6.0 is really 6,000. As you can tell, some of these have moved in the normal range and some are still sluggish. But not considered a problem, as the recovery from this takes a good long time. But our donor stem cells seem to like their new home and are doing their job. Keep it going stemmies!

We are keeping a close eye on Mark’s skin for any rashes. So far (knocking on ALL the wood), there haven’t been any major signs of Graft vs Host Disease. Mark does have a rash on his face, but the Doc didn’t say, “That’s it!” Which is amazing as 90% of patients get some form of it. It usually takes place in the liver, the gut, or the skin. Blood tests aren’t showing any liver issues, GI tract seems to be doing okay (other than the nausea that all the meds are causing), so that leaves the skin. Those of you know Mark personally, know his fair Irish skin. So we are trying to look between the freckles and under the pink for any signs of rash. We think we maybe see something, but then it goes away. So crossing fingers, that he is one of the lucky 10%. Of course, our nurse practitioner said GvHD could show up at any time for the rest of your life. What a buzz kill!

We were happy to actually talk to his doctor on Monday and get his take on everything, and start grilling him on when we can go home. Mark also had a list of issues that he needed answering. Stephanie, the nurse practitioner, said they never let any one leave before 60 days.  But doctor says, well…. maybe we can let you go a little early. Next set of labs and doctor visit is on Monday the 22nd and the 29th, and if all goes well… who knows? We’ll be home for Kai’s birthday, and that is a BIG motivator.

Of course, we really weren’t expecting to get out of here before 60 days, so now my mom and dad are scrambling to make sure the house is ready for Mark to come home. Allergen free, carpets cleaned, that kind of stuff. But it is big, pain-in-the-neck stuff. I don’t think I have really expressed the gratitude I feel for all my family is doing. My mom and dad have pretty much put their lives on hold to move into our house and take care of our children. It is not easy. It’s fun to try to remember how to parent youngish children (she says with much sarcasm). And, of course, everything that Jeff has been doing with coordinating fundraisers and stuff. He set up the Give Forward thingy (which is the widget to the right), but also is organizing a serious event in Chicago. The generosity of people, from my family to people I have never met, amazes me. And I will never be able to say thank you enough.

Okay, I am babbling and getting a little teary. Besides, I think Mark had something he wants to say…

with much aloha
~terri

I am really glad we saw my Doc. I got my questions answered, and we are back on track. I’m on only the meds I really need. Back on the Tac and we need to monitor my kidneys closely. We bought a bunch of gatorade so I can help flush the toxins out of there.

~ Mark