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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blood-tests-diagnose-depressionI now have a routine (YEAH!!!) and am adding to it little by little. Recovery is a full time job, it takes work and a lot of effort, if I want to be on the path to wellness. AND THAT IS MY PATH. What is happening now is just a big pothole in the road that we have to navigate around. I could end this post here, but I think you want to know what is going on and this is also for other transplant patients.

We made the trip out to St. Louis yesterday and things have not improved. The Med team was able to rule out 3 of the 6 possible reasons for the drop in my platelet count. All the lab tests came back negative or were what was expected of a bone marrow transplant patient at Day 75. Clearly dropping the dosage level of the Prednizone is having an impact on them and they knew it would drop some (in fact all my counts are lower this week) but not this much. My platelet count is now at 39,000. So they decided to bring up (10mg) the dosage of Prednizone to 30 mg/day. The hope is that this will prevent further decline of my platelet count, until additional tests come back. And all of this is much more complex than I am sharing, because I’m still trying to understand it.

Next week we go back to check in. We have to go to St Louis twice though. On Tuesday we will see where my platelet level is. That will determine if I need a transfusion. They also are setting up for me to get infused with a “growth” drug (IGG) to spur the platelets to get active and grow more. This infusion takes 4 hours and getting platelets takes another 3 hours. So we have to go back on Thursday to do these. They can’t do them together, so it is going to be a really long day. Unless, of course, things significantly improve with the Prednizone. We decided to wait until next week with the IGG so we can determine what drug is doing what to my platelet count. Being the scientific sort, I pushed for that option, because, how else would we actually know what did what.

But there is an underlying problem that needs to be discovered. The Prednizone by itself is not causing my platelets to drop this much. What we have left is that one of the drugs is impacting my platelet counts, there has been a change in the amount of donor cells, or there is not enough stem cells that transform into platelets to propagate.

Let’s start with the positive or easiest solutions. 1). The IGG works its magic and it overcomes the underlying problem; 2). I’m taking an antibiotic to control or prevent a specific fungus from growing. This drug sometimes can decrease platelet counts. So all we have to do is switch it with another drug that does the job. We are not doing it this week because of the remaining test that has yet to come in. The remaining test has to do with the donor stem cell line.

Not so positive, but something the Med team can begin to do… So next week we will know whether the donor stem cell line is still at 100%. If it is not, my MDS has come out of hiding and is beginning to grow. But the positive is that is just part of that plan, that they have to play with the meds to allow the donor cells to kill my MDS cells off, or knock them back and keep them under control. They have to be very careful about this, because in doing so, I’m going to get GVHD in the gut worse than it is and it could affect many other organs. I trust my Doc to get that balance right, if that is the problem.

Not so positive, and hopefully not a problem. This requires an early bone marrow biopsy to determine. YEA! It is possible that when I got my transfusion I did not get enough of the stem cells that turn into platelets. I know that makes little sense, because it is a single stem cell line that produces all of your different blood types. And I’m not sure I understand this correctly, but when they “harvest” them from the donor many already have a predisposition to turn into a specific type of blood cell. When they harvested the stem cells from my donor, we really did not get as many as they had hoped for. So it is possible that I just did not get enough donor stem cells to complete the job. We would have to ask the donor to donate another time. I believe in my donor and she is there for me to save my life. So to my angel, and I wish I could tell you this personally, thank you with all my heart for giving me life.

~ Mark

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

It’s been a mostly good week (with ups and downs). Despite that it makes common sense for there to be ups and downs, it is good to hear from the medical team that is perfectly normal and to expect it for another month or longer. Yes, we traveled to St Louis today. It was also Terri and my anniversary. Kai turned 10 years old yesterday (my second real trip out of the house). I got out of the house to visit some friends at work the day before, a stop over on our way to see my local oncologist. I won’t count doc visits or going to the store a trip out. But lets back up…

This post and the last one are more personal than helpful (sorry transplantees). After we got home and had the kids to ourselves, it was pure joy. The weekend went by too fast, partly because I had a bad day on one of them, but even then there was lots of hugs, touches, being close. I’m a physical person when you come right down to it and contact is essential. It makes me feel whole. Even when I feel like crap.

Monday – Have yet to find a routine cuz stuff came up, but I am really looking forward to a routine. Monday was busy. The morning was good because I am one of the things I am putting in my routine is to help get the kids up and off to school. Before this journey I left the house before them and was trying to get my own shit together in the morning. I like this much better. Then we saw friends at work and it also gave Terri a chance to get some work done, as I chatted it up. It was a purely social affair and it was really good to see them. Then off to my Doc. He is a good guy and got me through seven years of anxiety, gave me great advice, and is someone who gives it to you straight but with a gentleness that is comforting. Evenings are a blur, mostly because I am wiped out. One of the reasons I need a routine is to build my endurance.

Tuesday – Kai turns 10 (and its Day 60). Two great reasons to celebrate. We had been watching the whole Avengers series starting with the Incredible Hulk over the weekend. We finally got to Iron Man 2 Tuesday morning just in time to go to the theater to see #3. Kai had a great time, and hid in Terri’s shoulder when things got too intense. That kind and amount of violence would not have bothered me as a kid, but Kai is a healthier person and is more sensitive to that sort of thing. And THAT is a wonderful thing. Too much of a good thing had me resting the rest of the day, but I rallied to help cook dinner, take pictures for presents and cake. and help him sort through his new legos so he could build his creation. Mind you not what the directions said to do. Kai started following them, but then started making it his own. Makes a father proud!

Kai's 10 B-Day

Kai’s 10 B-Day

Wednesday – Kids off to school and out the door we went to make an 11am appointment in St Louis. NP Steph was great, because I had a lot of questions. So… I can now drive on my own, if I can do it. Freedom! And people of Columbia I won’t drive if I’m wiped out, so that leaves me the mornings for a while. She gave me a new med to take to sleep. Getting 5 hours a night for three weeks was getting to be a drag. Prednizone… I need it, but the side effects really suck. Not only does it keep me awake, but also makes it harder for my muscles to “engage”. On the plus side they are reducing the amount each day. The GVHD in my gut has stabilized, now it is time to see if it has learned to play nice. Throw the pixie dust and rap on the wood! There was a lot more discussed, and I don’t want to fill up this post with a list of minor issues. When I’m up to it, I plan to create a new page and discuss the past three months from a transplant perspective for those who want and need to know what it is really like (or was for me).

And now its time to enjoy my 14th anniversary with my Love. We’ll have to see what happens, and with that I bid you adieu.

(PS from Terri – I am liking this tagging on at the end. 🙂

Mark forgot to mention that he was also freed from having wear a mask anytime he leaves the house. Use some common sense, and wear it if necessary, i.e. tight quarters with lots of people, being around people that are sick… but in general, no mask! Yay! Fresh air! And I can remove chauffeur from my list of duties, unless needed of course. No mask, drive a car, I think Mark is going to like this freedom thing! 

also am trying to figure out this routine thing. I have to have a routine to help keep me sane. So far I have the first half hour of the day mapped out. Roll out of bed, drink coffee, read news on iPad. Tomorrow I am going to attempt to add, go to office and get work done! I miss actually going into work and sitting at my desk, and have actual interaction with my co-workers.

It was fun playing hookey for part of the day yesterday with Kai and Mark, and trying to make Kai’s birthday special.

Mixed in with today’s doctor’s visit was remembering that it is our anniversary and quietly enjoying that. OMG you guys, I have been married for 14 years! And all of you who have been married longer and are rolling your eyes can just let me have this moment, because 14 years is a frickin’ long time. Those years have just flown by. It sure feels like it was just last weekend that we were standing under the lighthouse, on that cliff laughing at the dive bombing pelicans and “Dangerous Condition” signs while swore forever to each other.

Am I babbling? I feel like I am starting to babble, so maybe I should shut up now.

One more thing to share… unfortunately this blog has started to get seriously spammed. And not in a PG kind of way either. We used to get one or two spam comments and they were easy to delete. Today we got 15. And like I said… they weren’t PG, I am not sure they were even R-rated. I don’t want to see it and we don’t want to subject you guys to it either. So, we have had to add comment moderation on the blog. All that means is that we have to “approve” comments before they will appear on a post. I hope this doesn’t deter anyone from posting comments because we really love reading them!

Okay, back to evening routine – time to get the kids to bed, and time for Mark and me to enjoy our evening and our anniversary 😉

Copy_of_home_sweet_home.2451702For those keeping track by days: Days 53 – 54.

So on Monday the Doc gave me permission to go home to Columbia (I should say we, since this journey is Terri’s as much as mine). She remembers all the things that I can’t or won’t during my hospital stay and 5 weeks slowly recovering. We have/had been staying at a great place called Almost Home, run by a lady named Toni. She was great! And when you stay at a place for over two months you tend to bring or collect stuff. We couldn’t just pack up the car in an hour on Monday and take off.

Tuesday – Terri and I (my part was mainly to watch and shuffle things around) organized and tidied up the place. Terri did almost all of it. I can’t clean, lift much (not over a gallon of milk in weight) or basically do anything substantial. That does not sit well with my male ego, but there it is. I have to accept my limitations for now. And fighting Acute GVHD in my gut takes its toll.

Anyway, Terri gets almost everything packed up and ready to go, but we can’t leave yet. Terri’s exhausted and I think Bob and Loretta are finalizing things at our house. Plus, we wanted to make sure the new meds were really doing there thing. To go Home and have to come right back to the hospital would screw everyone’s mind up. The kids still do not know, partly because what if I have to go into the hospital. But mainly we wanted to surprise them. Two months away from each other was really hard. Especially for them. I could see it in their eyes and demeanor when we Skyped.

Wednesday – Terri packs up the car, as I pack the frozen food. Double checked we hadn’t left anything behind. Got in the car and didn’t look back. As for me, I do not want to remember much of that time, it is temporary and unimportant. What is important is that I’m alive and recovering and on my way to wellness. That is my path in this journey through hell. Now I want to remember the events of the coming months, and look forward to it with some excitement. I’m sure there will be ups and downs, but now I can really heal. I have my family!

We pull into our driveway around 2pm, just enough time to unpack, rest and be ready for the kids to arrive. We even moved the car up the street so as to not give away the surprise. The bus drops them off around 4pm. Caitie came in first, and just stared at me in disbelief. She ran to me and we held each other for a long time as Kai joined in. Talk about an emotional moment, not one you can easily describe. At least I don’t want to. Loretta took a picture of Caitie running to me, but it is blurred, so not really a moment you can capture on film. Just as well… it is burned into my memory for life.

But the day goes on and the kids have things to do. Both did some of their homework next to me, while I laid in bed. I was wiped out, needed some rest, but to have them near me was pure joy. Then we ate and the kids and I played Minecraft for a couple of hours. I kinda hogged them to myself. Not sure how Terri felt about that, and I am sorry she was not with us. But there it is… I needed them and they needed me. We were a family again.

~ Mark

PS. from Terri – We are home. We are with our children. I AM HOME! I get to hug and kiss my kiddos. It was like a real live game of tetris trying to fit all the boxes, luggage, and bags into the car, but I did it! We left the key on the desk of the duplex, closed the door behind us, and were out of there! I do remember every single day we were in St. Louis and I am now ready to move on with our lives. I realize things will not go back to exactly the way they were before we left. But will be working together as a family to figure out how life is going to be now and work through this process of helping Mark recover.

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