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!!!

wpid-20150417_115335.jpg

 

 

 

 

Advertisements

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:

20150220_081920

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!!!

Back to school… bring on the 2nd grade!

      As Summer is winding down, it makes me wonder where the time has gone and it also makes me realize that I haven’t posted a Delaney update in a while.  She has had quite the Summer.  Last Summer she was too sick to go anywhere or do anything.  So when me and her sisters were going to spend a week at the beach with Grammy, Grandpa, and lots of cousins, Delaney got to stay at home with Mom because her ANC level was too low for travel.  Well this Summer, she has definitely made up for it.

       From her Make-A-Wish trip, to camping near the Great Sand Dunes, to getting to go Southern California for her cousins wedding  (where she got to show off her moves on the floor), to playing on a softball team for the very first time, or just hanging out with her buddies, she has been out going and doing.  Of course it hasn’t been all fun, but for the most part when she is feeling well enough (which fortunately is most of the time now), she has been out enjoying life.

        Of course, her treatments continue.  At her chemo visit a month ago, they decided to up her doses across the board.  There wasn’t anything wrong or not working, but as she grows her body needs more medicine.  You would think that by now we would be accustomed to this but for some reason this seemed to hit me in the pit of my stomach.  It was just the thought of more chemo in her port, more chemo in her spine, and the toughest part for Delaney, more steroids.  Her little body seemed to do okay with the increased chemo.  Her emotions from the steroids on the other hand…  

      Unfortunately, she just went back this past Friday for more more chemo and more steroids which means when she starts school tomorrow, she is right in the middle of a steroid cycle.  The big 2nd grade.  Delaney was in kindergarten when this whole (non) Adventure started and now she is about to delve into the school year where she officially becomes smarter than her old man.  The great news is that the light at the end of the tunnel is growing brighter because if all goes as planned, the end of the the school year is also the end of her treatment.  That’s right, in May of 2015, Delaney should be done with treatment and can officially say, “Cancer Can Kiss my Stache!”

Delaney (making a silly face) at the Cancer Can Kiss My Stache booth hosted by the Leukemia & Lymphoma Society.

wpid-20140802_123717.jpg

Something different

      Although it was eight months ago, I still remember it like it was yesterday.  We were going over all the future phases of treatment with the doctor, and she warned us that “the last one, the maintenance phase, is a misnomer.  It sounds like it gets a lot easier, but it is just… different.”  Well now that Delaney is 1.5 weeks into this phase that will last a little over 1.5 years, we know what she meant by different.

        It’s different in a good way in that assuming her counts stay good, Delaney will go from weekly treatments in the clinic to monthly treatments. Different in a not so good way in that she is having to take chemo orally between treatments.  Depending on the day, she has to take anywhere from 1 to more than 10 pills a day.  Even worse than the chemo, the dreaded steroids are back.  I’m sure it isn’t the same for everyone, but steroids really do a number on Delaney.  She has to take them the first five days of the month and we definitely know when she is on them.  Yes, she eats everything in sight (she jokingly woke up her Mommy last week by gnawing on her arm), but it is more than that.  She gets these weird pains in her joints and also gets very emotional.  She just doesn’t feel well when she is on them.  As much as she loves going to school, she stayed home all last week while taking steroids.

       By the time the weekend came around, she was back to her normal studly self.  She played hoops with her team on Saturday and on Sunday, basically turned into Rocky Balboa.  It was a beautiful Colorado day, so after church we headed up to Red Rocks Amphitheater where we met some friends for a family workout.   If you aren’t familiar with Red Rocks it has 69 rows of benches and exactly a gajillion steps.  We jogged the steps, sprinted the rows, hopped with one foot of steps, then the other, then with both feet,did jumping jacks, push-ups, sit-ups, pull-ups, and then fell on our face… wait… that was just me.  Delaney on the other hand would not be stopped or even slowed down. 

      My friend had us do what he called the “Tough Mudder Trainer” where we started down at stage level and had to climb 20 stone walls to the top of the amphitheater. All the walls were taller than Delaney so I was worried about her falling backwards onto the concrete while trying to climb them.  My fatherly instinct kicked in and I helped her up the wall each time just to make sure we didn’t end up spending the rest of our afternoon in the ER.  She made it all the way to the top then ran all the way down the stairs to the bottom.  When we were about an hour into the workout, Delaney yelled, “I’m going to do the Tough Mudder one again.”  Before I could stop her or even catch her she climbed the first wall all by herself.  And I thought there was no stopping her before that!  Without any assistance from her old man, she tore up the 2nd wall, then the 3rd, then the the 4th, and so on.  At the 17th wall her sister came over and said, “Dad, we’ve got to go!”  At that point Delaney looked back at me and said, “Okay, you can help me with the rest of them.”  All of this from a little 7 year old girl that not even 24 hours earlier had to take 8 pills of chemo.  Simply amazing!  Now that is something different!

      Delaney ended the weekend by running an errand with her mom.  They went to the mall and were surprised to find that Santa was there.  Even more different than Santa at a mall, was Santa at a mall with no line.  So, Delaney went and had a little chat with Santa.  I don’t know exactly what she said, but I’m including a pic of a letter she wrote to him last night.  Sorry for the double post for those of you on her facebook page, but her letter said, “Dear Santa thank you for all the gifts that you’ve given me. How can I pay you back? From Delaney.”  Because I have been slacking on her blog updates, I’m not only including a pic of that but also a couple of pics from tonight (one with another of her lego masterpieces and the other proudly displaying a post bath mohawk— look at all that hair!!!).

 

20131111-201113.jpg

20131111-201130.jpg

20131111-201144.jpg