I may as well start at the beginning

     Hello and thanks for dropping by.  Some of you know a little already and some of you already know a lot.  Well scratch that, we don’t even know a lot yet but anyway I figure if I start at the beginning, we can all be at the same page.  My name is Tom, my wife is Stacey, and our daughter is Delaney.  Delaney has 3 sisters and is quite possibly THE sweetest person in the entire universe.  And according to people a lot smarter than me, Delaney also has leukemia.

      Last Thursday Delaney mentioned that her ear was hurting.  I figured that it was probably an ear infection so I better make her an appointment to see the doctor.  However, Delaney being the avid reader that she is, did not want to miss her special day of kindergarten where she got to read to the class so I held off on making the appointment that morning.  By that afternoon, she was in tears because her ear hurt so bad so I made her an appointment for the next morning.  She took some medicine for the pain and eventually drifted off to sleep. 

       At about 9:30, she woke up crying and my wife went into console her.  She carried her into our bedroom and said, “look at her face.”  Extending to her cheeks about an inch from the bottom of her ear was really swollen.  Long story short (okay shorter anyway), Stacey called the advice line and was told that she should take our daughter into the Emergency Room right away so she did.

       So even though my wife just worked a 12 hour shift at her own nursing job, and that she was going to get things ready for another daughter’s birthday the following day, she put on her Mom cape and headed to the E.R. Delaney, really just wanted for cuddle with her Mommy and Daddy and for the pain to go away, but she did not want to go to doctor’s office at that time of night.  “Come on” my wife told her, “it’ll be an adventure.”

     At the ER, they took some labs, looked at the swelling on her face which they thought was an infected parietal gland and then analyzed the results of the lab-work they just took.  Whatever they saw sufficiently spooked them to the point where they said, “Uhhh… we need  her moved to a different ER!”  They notified my wife that Delaney had to be transported via ambulance to Children’s Hospital in Aurora, CO.  Delaney said, “Ambulance???”  Stacey said, “It’ll be an adventure.”  Her adventure ended the next morning after she threw up some sort of disgusting medicine.   The doctors at Children’s said that it was probably an infected lymph node, prescribed some antibiotics, and sent us on our merry way. 

      What will sure to be a recurring theme here, and also happens to be a real blessing, is that my wife is a darn good nurse.  She actually was an oncology (cancer) nurse for over ten years before moving on to hospice.  She knows her stuff.  So when the doctor said we were free to go, Stacey started politely pressing about the “no restriction” part of the release (Delaney was busy doing a silly dance while singing, “Free at Last, free at last, thank God Almighty, I’m free at last.”).  Apparently, Stacey knew that at her place, a patient with that low of a white blood cell count would have some restrictions. ” But”, the doctor pointed out while politely semi-brushing her off, “you work with old folks who are already sick, and Delaney is young and healthy.” 

    My wife being the natural Florence Nightingale she is, imposed her own restrictions.  I took Delaney’s sisters to the Wildlife Museum and then on a real treasure hunt (Geo-caching– go on… call me a nerd and get it over with).  Delaney did not participate in the day’s fun so she could take it easy.   On Sunday Delaney was feeling so good she kicked my butt all the way through an Insanity workout, “Come on Dad, lift your knees higher, Dig Deeper!!!”  She didn’t only pull drill sergeant rank on me, she did the entire workout with me.  I point that out to because to illustrate the energy levels she had and still has as of right now.  She doesn’t feel sick… she just wants to go home and get back to school.

      Monday (yesterday) was a day just chalk full of adventures, including some that we’ll never forget.  Stacey took Delaney to what we thought was a routine follow-up appointment in the morning.   She was then notified that the first doctor from Friday night called over to say, “hey, get this kid’s blood drawn right away because we are hoping what we think we saw, was a mistake.”  So they took more blood from Delaney and then Stacey was able to take her home while we waited to hear something.   The first something was a call stating we needed to get Delaney to an Ear, Nose, and Throat doctor to check out her lymph node/ parietal gland.  So we trekked across town to be told by a very nice E.N.T. doc, “I really don’t know what this swelling is, but it doesn’t really matter because it isn’t even related to the irregular lab, and that may be your real problem.”

        A few hours later we got the call that immediately put our priorities in proper perspective: “You need to call on any and all support systems you have because we believe Delaney probably has leukemia and you need to get her back to the ER right away where she will be admitted.”  You could have taken a large hammer to our skulls and it probably would have been less of a blow to us at that point.  Our 12 year old saw us and immediately knew something was wrong.  We had her pack a bag, quickly packed our own bags, and headed back to Children’s Hospital.  Delaney knew something was up and after already having been seen by two different doctors that day, did NOT want to go on one more adventure.  

At this point I am just going to admit to barely being able to keep my eyes open.  I am sure there are typos, misspelled words, better designs, etc., that I can improve on at some point when I am more awake. I’ll update this to keep everyone posted.  IF YOU WANT TO RECEIVE THESE UPDATES: There should be some sort of area that allows you to “follow” by entering your email address in that area.  If you choose to do that, when there is an update posted, it will be emailed to you right away.    THANK YOU FOR YOUR PRAYERS FOR DELANEY!!!!!Image

 

      

 

Adversity… and a final post

So yesterday I got an email notifying me that this blog is about to expire.  Although it makes me sad, I also realize that it is probably time.  Delaney is doing fantastic!  She goes back once a month to have her labs checked and every time so far she has received a glowing review.  Besides that, she is doing well in school, still loving her legos, and is excited that her Denver Broncos made it to the Super Bowl!

On a different note, her sister Ashley created a project for school (click on link below).  The theme was adversity, and she chose to do it on her little sister Delaney.  I thought it made for a good final send off and we really can’t thank everyone for all the love and support we have received these past three years.

Adversity

Because we are just so DARN close!

I’m going to be honest, I HATE asking people for money.  Even when it is for a great cause like the Leukemia & Lymphoma Society (LLS) it’s still uncomfortable, awkward, and unfortunately…necessary.  We have been blessed to have our daughter Delaney go from battling cancer, to being a cancer SURVIVOR.  We can now be done with cancer awareness and fundraising, right? Wrong.  You might not know it, but LLS is exactly like the mob: every time I think I get out, they pull me back in!

Actually, the real reason we can’t be done is because we aren’t finished.  We are so, so darn close…but we still need your help.  If you don’t believe we are close to finding the cure, let me give you some numbers to think about.  If you don’t mind, I’ll use the type of cancer Delaney had (Acute Lymphoblastic Leukemia) as an example.

—Only 65 years ago, it was declared 100% FATAL.  So every single person that was diagnosed with it, died from it.  Almost all of them died within three months.  So if Delaney happened to be born 65 years ago, she would never have made it to her 7th birthday.

—By 1964, the medical community began to make a little progress, and achieved a 3% survival rate.  At that point, I wouldn’t have said that they were so darn close.

—Today, thanks largely in part to research and funding provided by charities like the Leukemia & Lymphoma Society and to people like you who have donated to them, there is over a 90% survival rate.  That is what I mean by being so close, but not finished yet.   I’m asking you to help finish it!  Not only the last bit for just the type of cancer Delaney had, but to help eradicate ALL blood cancers.   We can do this in our lifetime.  I don’t know if it’ll be from your dollar, my dollar, or some other generous person’s dollar that provides the funding that finds the cure, but it is definitely an exciting time with all the progress that is being made in this fight.

So let me introduce you to a wonderful family.  In late 2003, Mike and Desiree Wachter had a beautiful baby girl named Melina.  When she was only three months old, Melina was diagnosed with Acute Lymphoblastic Leukemia (the exact same type Delaney had).  Seven months later, Melina lost her battle to cancer and passed away on September 7th, 2004.  Can you imagine losing a child before ever even getting to hear them tell you that they love you?  No, actually don’t imagine that.  Better yet, imagine the day when no other parents have to lose a child to cancer.

Desiree has the opportunity to have a research portfolio grant named after her Angel Baby Melina if her team can raise $100,000.  It is a lofty goal, which is why we need your help.  Stacey and I have joined her team and are committing to raise $1800 each as participants in Team in Training program.  We’ll be running the Denver Rock and Roll half marathon in October.  If you are financially able to help us with a donation, Tom’s personal site is:

http://pages.teamintraining.org/rm/denver15/tstafford

and Stacey’s is (if you can only donate to one, please feel free to donate to mine.  Just kidding, donate to Stacey’s):

http://pages.teamintraining.org/rm/denver15/sstafford

On a personal note, for those of you that know us, you know we aren’t getting any younger.  I told Stacey it is now or never for her to break the 2 hour mark on a half marathon.  I agreed to do this race with her if she agreed to give it her all to accomplish this goal.   She is going to be training her butt off to make this happen and I know she can do it, but please feel free to give her some encouragement over the next 4.5 months.   So hopefully on October 18th, 2015 Stacey will run 13.1 miles in less than two hours, and more importantly $100,000 will be raised and the newest research portfolio will be granted in Melina’s honor.   Thank you!!!

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Classroom Celebration (of Courage)

Don’t worry, I’m not going to keep you updated on Delaney for the rest of her life.  However, last week there a celebration that was too darn cool to not share.  We got invited to her school where they were going to celebrate her being done with her treatment.  We decided to keep it a secret from Delaney and by the time we arrived they had all four 2nd grade classes out in their quad.  We immediately noticed two things: 1. A giant sign that read, “Congratulations Delaney”  (and of course “I heart Mustaches”) and 2. about 80 little munchkins that had used sharpies to stache themselves.
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Her 2nd grade teacher let the kids know that Delaney has been on quite the journey the past three years, and that a lot of them have been on that journey with her since kindergarten.  She pointed out to the students that they all got to learn about courage this year because one of the students displayed it all year long.  “Who was that student, class?” she asked, “DELANEY!!!” they all yelled. And then, with all the kids sitting on the carpet, she read them all a book titled, “Courage.”
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When she was done, Delaney’s kindergarten teacher came up and spoke to the kids.  She told them just like she had taught them reading, writing, and their math, Delaney had taught them perseverance, inspiration, and courage. Then Delaney’s first grade teacher came up and read her a card that had both her and Delaney’s mom tearing up.
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Then they asked us if we wanted to say anything.  We thanked the kids for always being there for Delaney and for being such good friends to her.  I let them know that throughout their lives they would have opportunities to stand up for people that couldn’t stand up for themselves and that their parents, teachers, and all of us would be proud if they continued to do what is right.

Then everyone marched outside where each classroom had helium filled biodegradable orange balloons.  As the balloons flew up into the sky it represented Delaney’s cancer flying away.  Then, my favorite part of the whole day happened.  Without any prompting, the kids broke into an impromptu chant of, “Let’s go Delaney, let’s go!”

Such amazing, courageous kids at an incredible school with loving teachers and staff that have been so good to Delaney and our family.  Blessed indeed.
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Full circle and… DONE!

PORT REMOVAL DAY… YAYYYY! It was a different campus of Children’s Hospital, but I can vividly remember the day she got her port placed in her. Two things stick out in my memory: a woman in the waiting room who could tell what we were there for coming up to me while Delaney was in surgery to let me know that her son was getting his port removed and that we would make it. I was congratulating her on her son and she kept stressing, “No, WE made it!” and pointed at herself and her husband. She then warned me that the stress that comes with our daughter’s diagnosis can wreak havoc on a marriage if you let it. Well today, I am glad to tell you that WE also made it!
The other thing that stands out about that day is that it was basically the day “Cancer can kiss my stache!” was born. Going into surgery to get her port placed they spent a good deal of time making sure she wouldn’t be too scared. When they were all done calming her already calm nerves they asked, “Okay Delaney, do you have any questions?” “Yes,” she said, “when I wake up, can I have a mustache?”
Any guesses what she requested today?
Here is the today’s version and the original:
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Or pre-op now and then:

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As for Delaney, she was up to her silly antics. After they advised her she could breathe through her mouth if the gas from the gas mask smells bad, she asked, “where do I breathe out of if my dad’s jokes are bad?” Love that little goofball!
She is now out of surgery and doing great. Her medical nerd… I mean nurse mother on the other hand is sad because they wouldn’t let her keep the port as memento.
I know I have said it a million times but I could say it a million more, THANK YOU for all the love, prayers, and support for our precious Delaney and our family over the past couple of years.
While looking for the original stache pic, I came across these past pics that I thought I would share again here. I figure nobody that reads this blog will mind a walk down Delaney’s memory lane.

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Conversations, emotions, and winding it all down

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“It seems like just yesterday, when you called us to see if we could take Mackenzie for you.”  I was having a conversation with a good friend last night and he was referencing the day that my wife and I will never forget.  It was when we first got that call instructing us to immediately head to the Children’s Hospital where they where awaiting our arrival in the emergency room.  They continued by informing us that they thought our youngest daughter Delaney had leukemia.  As our hearts sunk, we needed to find someone to take care of our other kids.  We had no idea how long we would be in the hospital with Delaney, we just knew we needed to be with her.   It seems like just yesterday, but it was actually about 800 “yesterdays” ago.

******

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After over two years of treatment, this past Friday was Delaney’s very last IV chemo.  WOOHOO!!!  My wife brought a card to say thank and a cake as we were ready to partayyy.  Even as we were pulling up to the hospital, we got the call to schedule the surgery to remove the port from her chest.  It is official, Delaney is definitely winding down her (non) adventures with cancer.

Before we went to her appointment, I called my wife to check in on her.  “I’m an emotional mess!” she admitted.  We are beyond thrilled for her to be done.  But, I guess if we are honest, we are also nervous and even a little fearful. For the past two years, she has had an entire medical team watching out for her.  What if something happens to her after Tuesday?  When and what do we need to worry about after this?  I have no idea, but I can’t help but be reminded that “Do not fear” appears 365 times in the Bible… one for every day of the year.

*****

“Do you know our kids have prayed for Delaney every single night for the past two years?”   I heard this again last night.  We’ve heard different forms of this, my son or daughter, my mom, our family, or I have prayed for your daughter….  We appreciate every single prayer said for her and for us.  I hope someday Delaney will understand how many people she had praying for her.  So many of them, we have never even met and probably never will this side of Heaven.   Thank you.  By the way, at that same function (and by “function” I mean watch the fight and play some poker party) a guy was wearing a “Cancer Can Kiss my Stache!” shirt.  I don’t know if he even knows who Delaney is or her story, but I love it.  Same for all those folks that have been wearing a rubber bracelet with the same message for the past two years, thank you.  I know I’ve said it before, but we can’t even begin to thank so, SO many people for their kindness shown to our daughter and to us.

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*****

At Friday’s appointment, we met with her doctor and he filled us in what it would look like from here.  One of the things he wanted to make us aware of is how long it will take her immune system to fully recover.  It sounds like we can expect about six months for her immune system to be back to 100%.  She will continue to take one of her antibiotic pills for the next three months to help with that.  On that note, he wanted to see if there was anything that could be done about her persistent cough so he ordered a CT scan of her sinuses. That was one more affirmation that she is almost done as we get to wait a week for the results of the scan.

Anyway, some folks have asked what happens from here.   Along with getting her last IV chemo on Friday, she  also started her last five days of oral chemo and steroids.  On May 5th, mere hours away, she’ll get to take her very last oral chemo and finish her steroids (I’ve got to be honest, we are not going to miss the steroids one bit)!  After that, she’ll go back in once a month to see her doctor and to get labs drawn.  After 12 months of that, assuming all is still good, she’ll go to every other month.  Then every three months, and so on.  Eventually she’ll only have to go once a year, and that will pretty much be for life.  Within the next couple of years, we will go to something called the Hope Clinic where they will further educate us on, and watch for, the long term side effects of her treatment.

*****

Tonight, my wife was brushing Delaney’s hair and they were being silly together.  Delaney even allowed her to pull her hair back in a ponytail, and she observed that her hair was now almost as long as when she was first diagnosed.  “Don’t cry mommy,” Delaney told her.

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*****

As for Delaney, she is doing amazing even during this steroid week.  She followed up Friday’s chemo by playing in her soccer game Saturday and Sunday.  As excited as we are for her to take her very last chemo on Tuesday and get her port out on Thursday, she is probably even more excited to perform a hip hop routine with one of her best friends in her school’s talent show on Wednesday.  After all, she is just a (very cool) kid!

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So, so close, but…

So last week we got the reminder that it isn’t over until the fat doctor sings.  Okay, Delaney’s doctor isn’t fat, but we were reminded to not take the finish line for granted.  On Tuesday we noticed her lips were getting white around the edges.  This isn’t uncommon as thanks to all of the steroids they have to take, thrush is pretty common in cancer kids.  Although it was painful for Delaney, we weren’t terribly concerned.  By Wednesday, her entire bottom lip was one giant painful blister.  We were concerned because this could be indicative of low counts.  Our fears were confirmed when we took her into clinic and they confirmed that her counts were barely above 500 (in comparison, ours are usually at about 2500).  That meant she was very susceptible to catching anything that might be going around.  It also meant that unless her counts improved, her very last chemo might have to be delayed.

Back to that not so fat doctor, we are very grateful for him and for his approach on treatment.  He wants his patients to live as normal of lives as possible.  He sometimes ignores the “book” and strict protocol that says when Delaney’s counts are low, a fever of even 100 degrees gets her admitted into the hospital because when her counts are so low, she can go south quickly.  Instead he goes by how she is feeling and believes that sometimes it is better for the patient to rest at home in their own bed, than to be stuck in the hospital.

We were grateful for this when Friday morning we had to take her in with a fever of over 102.  Her counts were still low and they thought she possibly now had pneumonia.  After giving her IV fluids, antibiotics and observing her for a while, they sent her home.  By that afternoon, we got the news that she also had the flu.  That night, her fever was 103.5 and I started wondering if she wouldn’t be better off at the hospital.  After over two years of battling, she was literally less than three weeks from being done, but apparently she wasn’t in the clear yet.  While she rested, we prayed.

The next day, she was a back to her silly self. When she jumped up on the couch and started singing, “I’ve got flunesia” while shaking her little bum, we just laughted and knew she would be okay. Two and a half weeks and counting baby!!!

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10 lessons I learned from cancer

I should probably start by stating that I do not have cancer now, nor have I ever had cancer.  So I am probably not qualified to even write this.  However, please note that I am not being so presumptuous to call this, “What YOU should learn from cancer.”  I have no idea what your experiences are with cancer (or any other major illness), so I am definitely not trying to make light of them or offend anyone.

Exactly two years ago today, my youngest daughter Delaney was diagnosed with cancer (leukemia to be specific).  That day (February 25th, 2013), was easily one of the worst days of my life.  However, during the past two years of her treatment, I have made some observations and learned some things that I think are worth of sharing:

1. People are kind- That is an understatement.  I really have no way to say it without being an understatement.  My wife and I have been overwhelmed and literally brought to tears by the simple kindness of people.  Friends, family, old folks, young ones, people we barely know, and even people we’ll never meet have shown our family kindness time and time again.  This one may seem obvious but I think it is worth pointing out because tonight, or any night, when you turn on the news they will let you know that there are many people that aren’t very nice.  That may be true, but there are a lot more people out there that are truly kind.

2. Prayer works- Either you believe it or you don’t, I know I’m not going to convince anyone here but I can only share from our own personal experience.  I don’t say this because of a specific treatment went well or a certain procedure worked out.  But there have been several times when we have amid the cancer storms, and have felt completely at peace.  Times when we’ve had plenty of reason to get discouraged, but only felt hope.  My belief is that it comes only from HIM who gives hope.

3. So does laughter- I know chemotherapy, dexamethasone, methotrexate, 6 mercaptopurine, vincristine, septra, and a ton of other drugs I can’t pronounce or spell are all good medicines, but laughter probably is better than any of them.  No, it doesn’t cure cancer or heal the body, but it nourishes the soul.  I know we are a crazy family.  We have fun.  In some of our toughest times, we’ve ended up laughing the most.  I know that I have chronicled some of them in this blog here (and here), but there have been far too many others to capture them all.

4. Attitude and outlook matter (A LOT)- One of the most important lessons we learned, we were fortunate to learn early.  We’ve met many other “cancer parents” in the past two years and whenever I am asked for my input, I always try to convey this lesson because I just think it is so important.   Think about your own kids for a minute.  When something completely foreign happens to them, what do they do?  If they are like most kids, they look at their parents to see how they react.  Really early on my wife and I agreed that if one of us were going to get emotional, we would just step out of the room to regroup before entering the room again.  We always just “knew” our daughter was going to beat cancer, so she always KNEW she would beat it!

5. It’s okay to cry- I remember trying to go back to work after she was newly diagnosed and just losing it.  I was in a cubicle at the time and would intentionally wear a jacket with a hood so I could try to cover my face when needed.  I think depression to a certain extent is almost natural when faced with these circumstances.  I think as parents more than anything we want to protect our kids and hope they have a long, happy life.  When something happens to them that we can’t protect them from, we feel we’ve failed.

6. Whether you agree with their advice or not, people mean well- We’ve been offered a whole heck of a lot of alternative remedies that will “cure” cancer.  Besides all the cures, we’ve also heard all the conspiracies about how (usually Western) medicine doesn’t want to find a cure for cancer because it is a billion dollar industry.  I won’t mention the various cures and conspiracies here as my goal isn’t to poke fun at any of the people offering them, but eventually we realized that the people mean well.  We appreciate all the tips, but we’ll stick with the folks that spent all those years in medical school.

7. Half the crap that we think matters, really is just crap- Before our daughter ever had cancer, my wife lost one of her very best friends to cancer.  I still remember something she said about how cancer put everything into an immediate perspective for her and how she couldn’t care less about who some celebrity was dating or whatever the latest gossip is.  This doesn’t only extend to the worthless celebrity stuff, but it is a good reminder to really love our loved ones while we have them.  Sure kids will still need to be disciplined and you’ll still get upset with those you love, but at the end of the day make sure they know you love them.

8. Those lemons you’ve been handed can be used to make lemonade- By no stretch of imagination am I an expert on cancer, but I don’t need to be (and neither do you).  If somebody else can be encouraged by our story, fantastic.  If we can help a charity raise money and awareness that could help eventually eradicate cancer, even better.  Our daughter Delaney is a fantastic example of this.  She is honored to be the Denver Chapter of  The Leukemia and Lymphoma Society’s Girl of the Year, but she is also doing her part even closer to home.  Just last week she was teaching her classmates about leukemia at her school’s science fair.  Here is a picture of her with her award winning presentation:

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9. The higher the stress, the more grace that needs to be extended- One of the saddest things I’ve learned in the past two years is how high the divorce rate is for couples affected by cancer and other serious illnesses.  As the stress builds arguments tend to increase.  When it feels like you are in the middle of the pressure cooker, it isn’t the time to argue who is right and wrong.  It is the time to extend extra grace.  Even when you feel the other person doesn’t deserve it, do it anyway. If it isn’t something you can’t work out by yourself, don’t be too proud to seek outside help.  A divorce added to lives that have already been turned upside down, is the very last thing that is needed. Speaking of grace, it usually isn’t cancer, but I’ve learned that everyone is going through something.   More often than not, you don’t know what that person that seems so angry, withdrawn, sad, or “different” is going through.  Just extend grace.

10. People are kind- I know I already stated this, but it is worth repeating.  Thank you all from the bottom of our hearts.  We honestly can’t express how much we appreciate all of the kindness that has been extended to our family over the past years so I guess I’ll just leave you with a simple, THANK YOU!!!