Follow Up for Lily

Just a few days after posting the last blog, Erin Dove posted the following. Makes you stop and think how we take so much for granted.

Hard to breathe

By Erin Dove — 18 hours ago

Many of you have heard the news already, but we would like to share with our entire caringbridge family. We will need all your love, support, help, and prayers. 

We are overwhelmed, heartbroken, saddened and angered by the news we received this weekend. Our sweet, selfless Bailey has been diagnosed with leukemia. 

Lily's journey brought tears of fear and the unknown. Now we are crying tears of anger, "why", and the known. 

Tomorrow (Monday) we will learn more about exactly what type of leukemia she has. And a general idea of how to treat. Exact treatment protocols won't be known until after the induction phase of treatment based on how the leukemia cells respond to the first month. It's a big day tomorrow with a lumbar puncture, bone marrow aspiration, and placement of a picc line. 

We welcome your comments, texts, emails, and prayers. Please know that we may not respond in a timely manner or at all, as we are focused on the well being of our entire family. Again we will try to keep our kids lives as normal as possible, so please continue to reach out to them and us. 

We will continue to update as we know more. 

FIGHT LIKE GIRLS

Erin

Strength, Anger and More Anger

STRENGTH, ANGER AND MORE ANGER

03/09/2015 0 Comment by School-Pak

      Back in July of 2013, I wrote about Lily Dove, a little girl who played on our Jackson Area Rookie Girls Baseball team. Lily had been diagnosed with Leukemia the month before. I've followed her journey through a wonderful website, CaringBridge.org. 

As someone who has not had to deal with having a child fighting cancer, I found reading her story made me realize what's important in life. Lily has become my hero as has her entire family, mom (Erin), dad (Ryan), older sister (Maddie) and twin (Bailey).

While not really a story that you would find on a company's website, the twists and turns the family have gone through deserves sharing. I'm posting two of the latest stories that Erin has put online. I hope that it gives pause. There are many families like the Doves who are fighting what seem insurmountable problems. Feel free to reach out to them and show them your support.

The first post deals with how Erin is handling Lily's fight. The second post is impossible to believe. 

Strength

By Erin Dove — Feb 19, 2015 2:26pm

Lily's continued strength: 

Lily's treatment and procedure went according to plan on Friday.  Again, she chose not to receive anesthesia and remained awake for her lumbar puncture and intrathecal methotrexate (chemo).  She also received vincristine (chemo) in her port.  In addition, she started on her five day steroid pulse.  We were all nervous on Friday, amongst 
many other feelings, even to the point of it being noticeable to our team at Children's.   

After all this, Lily returned to school Friday afternoon. From Saturday through yesterday (Wednesday), Lily remained at home just taking it easy.  She just wasn't herself - extra tired, but difficulty sleeping, a diminishing of her awesome-Lily personality, and just general feeling not herself.  In addition, she experienced leg soreness intermittently during that time.  This morning, she seemed exponentially better and is at school today. 

------------------------------------------------------------ 

Reflection on myself - Strong changes: 

Honesty.  I have heard from many that they appreciate my honesty in these posts.  Thank you.  This one is no different, though this is kind of a blunt, selfish post.  Honesty - the good, the bad, the real.  And I'm not apologizing for my feelings, my reactions - to what is happening to Lily, to our lives, to countless other kids and their families. 

Most of us don't like change and I guess I'd include myself in that group.  I've always been a planner and mostly in control.  But all that changed on June 21, 2013.  I had NO control.  As a mom, I couldn't make things better for Lily.  I am supposed to make things better. 

Everything changed.  Our family changed.  Our lives changed.  Our marriage changed.  I changed. 

Several months after the day our lives changed, someone told me that I had changed (and this was not meant as a compliment).  In defense and denial, I listed the reasons that wasn't true, in an attempt to salvage a friendship that essentially began dissolving on June 21, 2013. 

It took me several months after this conversation to realize that I had indeed changed.  Who would I be if I hadn't!?  Emotionless.  Soul-less.  Hopeless.  Compassion-less.  Inhuman.  Some other word that I can add "-less" to and make a new word.  :-)  I can only think of a couple things in the world that would be worse than hearing the words "Your child has cancer".  (And I don't even want to think about those things longer than it takes me to type this sentence.) 

So, mostly I am glad that I changed.  I have learned so much.  About so many things, including myself.  If I had to describe in one word how I have changed, I would say "stronger".  (I don't mean physically because exercise has certainly gone by the wayside.)  :-)  I feel stronger feelings.  Most of this is good.  I care stronger.  I love stronger.  I empathize stronger.  I have stronger faith.  I have more appreciation.  I have a greater perspective. 

Some of these stronger feelings are not good.  I know it and I'm trying to manage them.  I cry more.  I worry more.  I'm mad more.  I'm angry more.  Some of this anger is good because it's put towards helping raise awareness, making changes. 

Other anger is not good.  During the period in September that Lily experienced partial hair loss, I overheard a conversation at work with a young woman complaining about her bad hair day.  It disgusted me.  Still does.  I literally felt like slapping her and telling her that at least she had hair.  Social media and daily conversation is riddled with people complaining about their child's sore throat or ear infection.  Makes me mad.  If that's the worst thing that happens to your child, count your blessings!  I know it's all relative.  A good friend recently told me that these small problems don't seem that way to many others because they haven't had that "big bad" thing happen to them yet.  I know.  I used to be that person.  I need to chill, yet still enjoy my greater perspective.  Should I pray for those people, that they never have that "big bad" thing happen to them?  But is that fair to them because they may never be able to enjoy this greater perspective? 

Today I'm feeling mad.  Mad that Lily was/is being treated with poison again.  The poison that will save her life.  The poison that has so many side effects (short term and life long) that Ryan and I couldn't even look at them.  What choice did/do we have?  We are saving our daughter's life.   

On Friday, chemo was again put directly into put into Lily's back.  This is the 16th time it's been put into her spinal fluid.  And that's just one of the many types of chemo that she has/is receiving.  I think I can be angry sometimes. 

I guess for me, the first step is that I recognize this "stronger" anger, worry, and "madness".  Next to manage it.  Not apologizing for it though.  My tears - I've mostly learned to manage these.  At least to the point of them mostly flowing when I'm alone.  (Well, I broke this "rule" on Saturday.  Oops.  I'm a long way from perfect.)  My car rides to work have proved to be a great time and place to allow the tears to flow. 

Thank you to everyone that just read this and listened to me totally vent.  I promise my next post will be way less heavy.  Thank you to those that have embraced my "change".  The new "stronger feeling" me.  Thank you to those that have said the right things, or said anything.  Comforting simple words. 

Please read this short article.  It can be used for a variety of situations; sickness, divorce, death, job loss.  At one point in your life, you will probably be at the center of the circle referenced in the article.  Comfort in, dump out.  This is important.  Receiving a dump-in does not feel good. 
"How not to say the wrong thing" 
http://www.latimes.com/opinion/op-ed/la-oe-0407-silk-ring-theory-20130407-story.html 

I could have written this article.  It's true in every aspect that I have experienced.  I hope that no one reading this will need it for another family, but 1 out of 300 kids are affected, so it may be worth saving. 
"Childhood Cancer diagnosis - five ways you can help a friend" 
http://www.childrenwithcancer.org.uk/Blog/five-ways-you-can-help 

I hope that you never have to use this either, but just in case here are: 
"15 Dos and Don'ts for Helping a Friend With a Sick Child in the Hospital" 
http://www.huffingtonpost.com/dr-karin-l-smithson/conscious-relationships_b_4350876.html 

"It is good to have an end to journey towards, but it is the journey that matters, in the end."-- Ursula Le Guin, American writer 

FIGHT LIKE A GIRL 
Erin 

2001: A year of ups and down

2001 started out very well for us. We had increased the number of schools and our sales were up by over 30%! Our employees were the best we had up to that time, our accuracy had increased and everyone was happy.

So we were excited when our son announced he was getting married. In Poland. What a trip that was.

We initially stayed in the old Jewish ghetto part of Krakow. He had arranged tours of the castle, sites where Schindler’s List were filmed, and then a tour of the area near Krakow.

It was very moving going to Auschwitz, walking under that iconic gate and seeing the grounds. It’s really pretty impossible to explain. We then toured the Wieliczka Salt Mine and ended up in Zakopane in the mountains. It was an unforgettable tour.

After the wedding (two days with seven meals for the reception), Terri and I decided to take a side trip to Prague as we felt we should take advantage of being in Europe.

One of the most romantic cities in the world, Prague was wonderful. We arrived on Monday and then, on Tuesday, the trip took an incredible turn. Tuesday was September 11, 2001. We were so far from home and worried about returning.

We eventually got home safely but our world took a horrendous turn in December. That’s when Terri’s doctor walked into the room and announced, “You have cancer, but it’s the good kind”. Like there’s a good kind of cancer.

Christmas took on a different look as Terri faced surgery in January. Tears and depression were the focus, knowing how important family was and not knowing what the future would bring.

Terri had a mastectomy in January and has been cancer free since then. It’s been 12 years and counting. While we face the challenges of running a business, we cherish each and every day.

Front windows and an office

When we broke through the wall in our warehouse location we ended up with windows and an actual front door.

We bought some desks and got ready to roll. And we had our first big idea. We would start an online store.

This was in 1998, well before other companies. But, what should we sell? School-Paks were still so new and a lot of people weren’t buying things online as such. After a trip to the store, we decided that Jansport backpacks would be a good fit.

So we called the Jansport rep in and got set up as an account. She helped us pick out a simple selection of backpacks. We got all of the jpgs, all the descriptions all the pricing, set everything up online and sat back, waiting for the sales to roll in.

The sales rep was pretty excited about our attempts as there were so few companies selling Jansport online.

Our first sale came in for a black Super Break backpack. Which we didn’t have. So we began running around to stores looking for one. We finally found it in South Milwaukee at a Kohls store, purchased at retail and sold it for a loss since we were selling at retail and never factored in our gas and time buying it. But we established the fact that customers would buy things online.

We then approached Mead to see if we could get their items online. They showed no interest in working with us. So we ended up with just Jansport at that time.

By 2000, we had a great presence online and were stunned when we received an email from a reporter at the Wall Street Journal.  He had found our site, and some others including Office Depot, and had placed an order for supplies and a backpack. We had sent them out the next day and so impressed him that we were named “Best Overall Value” in a news story. Next we found that MSNBC ran a story about it. We were getting recognized. Finally, we were mentioned on Rosie O’Donnell’s show.

Things were starting to ramp up and all we saw was the road ahead of us. We forgot to check for potholes. And they were there.

Lori

Wow! The summer is finally over, all the packs have been sent and all the summer help is now busy studying. So it's time to catch up on some blogging. And there's a lot to talk about.

This first one, a difficult one to write, is about Lori Wozniak, our office manager who passed away earlier this month.

Lori started working for us in spring of 2001. Her background had been working for an Arts and Crafts store so she had a very strong mental databank on school supplies.

It didn't take long and she was able to take on more and more tasks. She quickly became adept at preparing quotes for schools and working on a personal, albeit over the telephone, basis with many of our coordinators.

2003 became a rough year for School-Pak and we had to release her. She quickly found a job with a medical supplier. As things turned around, we contacted her about coming back and she readily agreed.

Her ability to retain information and set up procedures, spreadsheets, documents, etc., began to show results as we continued to grow. Even though we told her not to, she would take work home with her every night.

While our day started at 8:30, she was here many times at 7:00 in the morning. "That's when it's quiet and I can get more done." It wasn't unusual for coordinators and customers to get email replies from her at 3 in the morning. She was more than dedicated.

She was a dedicated Packers fan and finally was able to attend a game at Lambeau this past year. She was pretty much pumped when football met reality as Donald Driver appeared on Dancing With The Stars.

She will be difficult to replace. Her work ethic is going to be hard to match. We're trying hard to cover her assignments.

Rest, Lori.

Realizing What's Important

Running a business can be difficult. We have to be concerned with all those things that make us go. Do we have enough product? Do we have enough workers? What will it cost to ship to a school? Can we lower prices? What do the customers want?

And then we get that shock to the system that makes us step back and see real life.

The past two years we’ve sponsored, as School-Pak, a rookie girl’s baseball team. And they are definitely rookies. Some have played T-Ball in the past but most have no baseball experience. The girls range from 1^st Graders to 3^rd Graders and come from various schools.

This year we were stunned when one of the girls was diagnosed with leukemia. Her treatment, including chemo-therapy, has been aggressive and signs point to a good prognosis. Honestly, this is the first child that we’ve known that is facing leukemia and it’s difficult to think of her without tearing up.

We’ve attended most of the games but really, we’re sponsors not family or friends so it’s hard to convey our thoughts to the family.

Our newest shock was to learn of the accidental death of one of our student-customers during a 4^th of July celebration. The difficulty of dealing with a tragic loss of a child is something unimaginable yet it happens every day.

As grandparents of four healthy grandchildren, 1 girl and 3 boys, we sometimes forget how lucky we’ve been. They were all at our house for the 4^th and they were fun to watch at the local parade and fireworks.

Our hearts and thoughts go out to these two families and those that we don’t know that face difficult life events.

Early Years In The Warehouse

1998 was a big year for School-Pak.

Having outgrown Corpus Christi’s library, we were in need of some warehouse space. What a shock to find out how much that space would cost.

Years earlier I had worked for and with Bill Kesselman (from part 2 of the School-Pak story). As a well connected Milwaukee businessman, he provided us with a list of his friends to see who could help us out.

That brought us to Max Gendelman. Max, I believe, was the founder of National Hardware and, after selling the company, had a lot of warehouse space available. My meeting with Max went well, with him basically saying, “If Bill sent you over, we can make something happen.”

Our first area was a 40 by 40 foot warehouse space. We moved our computers (we now had 2!), our production shelves and all of our stock into the space. A small corner of the room became our lunch area.

We were so excited to have finally “grown up”. And then, our first business crisis occurred.

A phone call from the our rep at a school planner company called and asked when we had opened up a location in Arizona.

Apparently, some one was using a mis-spelled version of schoolpak.com for their website.

We made a number of inquiries and found a company named Innovative Learning Products (ILP) located in Phoenix. We made contact with the owner, Ray Lopez. Ray suggested we meet to see how we could “work together”.

We flew out to meet with him and were not “sold” on his ideas. His hope was to flood the boxes, inside and out, with advertising from different companies. Schools at that time were very much against providing advertising to their students so we walked away. Ray eventually sold his company to Innisbrook and went to work for them.

Innisbrook continued to use the name as they expanded into the kit business. Customers and potential schools that went searching for us ended up with Innisbrook. Repeated attempts to get them to stop were ignored. We spent close to $9,000 in legal fees and were finally advised that, even if we spent $90,000 fighting them, they could simply stop using the address and we wouldn’t be able to recover any damages. The big guys would win. Except…

We registered a domain with "Innisbrook.com" spelled as "Inisbrook.com". We started getting their email requests. It took less than a month for them to contact us and exchange domains. Unfortunately they continue to use “Back-To-School Packs” for their kits. That still causes confusion in the marketplace but we’ve learned to live with it.

So here we were, back in Milwaukee, making packs and growing. But we needed even more space. So two years later, we broke into the next room and actually ended up with some office space.

We had made it. We thought.