This leukemia stuff is a pain in the…

For the most part, Delaney is doing great. She’s happy, she is going to school, and she is feeling well enough to fight with her older sister (dad’s non-medical gauge of how well she is feeling). So with that said, nothing to worry about, right??? I don’t really know, but I certainly hope so.
Besides cold symptoms that she hasn’t been able to shake so they have been able to linger for about a month, she keeps having a weird foot pain. The “weird” part is that I have no idea whether it is related to all the drugs she is taking, or if it is related to her doing a silly Russian dance where she combines Baryshnikov with River Dance. The same with the cold… is it just a cold (that a lot of kids have right now), or is it something worse related to her leukemia. What I can’t seem to shake from the back of my mind is “Uh oh.. you are feeling safe again.” Every time we get comfortable with where she is in her treatment and how everything is going, we get thrown a curveball. The persistent fear is just all part of the cancer fun.
On a different note, Delaney asked us recently how long she has been in treatment. Next month will actually be one year, almost 15% of her young life. As much as she is over it, she knows she still has a long way to go. She has a very matter-of-fact approach and just takes it day by day (she just told me, “Dad, it is Sunday, I need to take my Septra AND 6MP). She doesn’t do the whole, “Woe is me” Eeyore thing. Quite the opposite, she finds the joy and fun in almost everything she does, and right now is just excited that her Broncos are going to the Super Bowl!
Thanks everyone!

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A Christmas poem

Twas the day before Christmas

and all through the house

not a Delaney was stirring

not even my spouse.

 

Instead of anxiously awaiting Santa

or playing with her sisters while building a fort

Delaney is back at the doctors

getting more chemo in her port.

 

Today also starts the next cycle of steroids

so lets get ready for the fun

tears, fits of anger, and eating

just about everything under the sun.

 

But as you all already know

Delaney is full of fight

So I’ll put this poem to bed 

by wishing you all a good night!

 

        Okay, I’ll let the lame poem rest.  I just wanted to give you a quick update on how Delaney is doing.  She is doing great!  She has been enjoying her Christmas break and feeling well.  She went into the clinic yesterday and her counts were down.  Unlike the prior stages, this is actually a good thing on this stage.  It means that today she can receive more chemo.  Receiving chemo on Christmas Eve may not sound like a good thing, but it is a lot better than the alternative of being too sick to NOT receive chemo.  

         I think the realization that we are hitting another cancer milestone (first Christmas) has taken its toll on my wife.  The reality is that Delaney has her good days and not so good days, but we still have a long way to go on her little (non) adventure.  However, we are looking forward to keeping our family Christmas traditions alive this season. After today’s treatment, our family will go to church and then come home and allow the kids to open one present each.  The next morning, we’ll wake up early find the coal Santa left for me, remind the kids again why we celebrate Christmas,they open their presents, and then I usually have to remind them about the kids in Africa every time they open a present from me (“What! You don’t like it??? Well the kids in Africa would love to play with kitty litter!”). Then we’ll prove once again how goofy our family is by heading to the movies dressed in our PJ’s.

        I know we sound like a broken record, but we can’t even tell you how much your words of encouragement mean to us.  I want to thank so many of you that reached out to my wife while she was having such a tough time these past couple of weeks just to let her know that you were thinking of her or praying for Delaney.  It is truly humbling when someone you haven’t even met tells you that they have been praying for your family. We wish you and yours a fantastic Christmas filled with love and laughter.

Here is a pic of our little mouse not stirring on the eve of Christmas Eve. Merry Christmas!

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Merry Christmas!

Greetings,

       As much as we would like to send each and everyone of you a Christmas card, we wouldn’t be able to even afford the postage.  However, because we are so grateful for you, we still wanted to share our annual Christmas letter with you:  

Merry Christmas,

       2013 has been quite the year for the old Stafford clan.  Sure we had all the usual: Delaney (7) is still playing soccer and even started playing hoops for the first time.  Ashley (10) also played soccer again and was even elected mayor for her 5th grade field trip to Young Ameritowne. Mackenzie (12), is still a dancing fool and enjoys participating in her middle school’s daily video news program.  Emily (19) dropped out of college, started experimenting with drugs, and is now somewhere in Borneo trying to find herself.  Okay, not really, but I just had to see if anyone actually reads these things.  Emily is still doing great in school, playing on her college volleyball team, and is getting ready to leave for a semester abroad in Leiden, the Netherlands right after the New Year.

       Besides all the usual, for us 2013 will always be remembered as the year our daughter Delaney was diagnosed with cancer (specifically Acute Lymphoblastic Leukemia).  With what has felt like some sort of terrible curse has also brought us tremendous blessings and our family is so grateful for all of you that played a part in those.  We have met so many nice people.  We have had complete strangers show love to our family.  We have been the recipients of meals, gifts, cards, prayers, and so much more.  We had what felt like entire schools show us support and kindness.  We’ve had hair, been bald, and grew hair back again.  Delaney is doing great and her spunky self has inspired an entire “Cancer Can Kiss My Stache!” movement.  I know that for some of you this is the first time you are hearing about this so if you want to learn more about our journey with that specifically you can go to her blog (www.nomoreadventures.com) or to her Facebook page (www.facebook.com/cancercankissmystache).  If anything our trials have reminded us that God is good… all the time.  May HE bless you and yours as you prepare for the celebration of the birth of the Lord and Savior Jesus Christ.

 

Love,

Delaney, Ashley, Mackenzie, Emily, Stacey, and Tom Stafford.

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Your Santa smells like beef and cheese!

Q.  How do you know you are visiting with Santa’s helper and not the real Santa?

A.  When you are a girl and Santa thinks you are a boy.

 

       That’s how Delaney knew anyway.  Santa took a break from the North Pole and visited my workplace last night.  I tried to loudly announce to him, “these are my DAUGHTERS Delaney and Ashley.”  Unfortunately, he still loudly said something to Ashley about her brother.  In his defense, Delaney was in all of her tomboy glory complete with a blue shirt, her patented emergency bow tie, and her ball cap.   If it bugged her, Delaney didn’t show it as we went from the jolly fat man to enjoying hot cocoa and cookies with her very own old man that happens to be jolly and fat. 

        Delaney has been feeling great lately.  She isn’t currently having to take steroids so that is a big help.  We are all falling into our nightly chemo routine.  She has to keep a two hour window where she can’t eat within two hours before or after taking the medicine.  If we can get her to be finished eating by 6, we are usually fine.  Any later than that, and  we have to wake up an angry bear just to force pills down her throat.  Besides that though, she is back in school and feeling good these days.

       Last weekend we got to tour the new Children’s Hospital where Delaney will get to finish her treatment over the next year and a half.  We went up to the blood cancers floor and saw a couple of familiar faces as her doctor and his medical assistant were at the desk putting tattoos on the kids.  After giving Delaney a tattoo on her hand, the medical assistant wanted to personally give us the tour.  She got to see all the cool stuff the new facility will offer (she’ll have her next chemo in her port on Christmas Eve at the old place, and then will begin going to the new place after that), and then we headed off the floor.  Before we left, we got the highlight of our day and got to take a picture (below) inside a giant snow globe.  Unfortunately, Delaney is eventually going to have plenty of unpleasant memories at the new hospital, it was nice that her first trip there was such a nice one.

        We Ho, Ho, HOpe you are all having a great holiday season and taking time to remember the reason for the season!

   

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What a difference a week can make!

      I thought it was a one time thing, so I made a joke that (like almost all of my jokes) wasn’t funny.  Some kid at Delaney’s school made a comment asking why was she in the girl’s bathroom, wasn’t she a boy?  I told her if that happens again, she should just kick that girl in the nuts (and for the 1000th time, I lost any chance I had at winning the “Father of the Year” award).  Unfortunately, it did happen again… and again.  It wasn’t just kids in her grade, as some of the older kids started chiming in.  

     Delaney isn’t one to complain so we didn’t know that she no longer wanted to use the bathroom at her own school.   She would basically try to “hold it” while she was at school.  After she was unsuccessful, she went from not wanting to go to the bathroom at school, to not wanting to go to school period.  This is a kid that loves school so much that when she can’t go due to low cell counts, she is almost in tears.  Now, even though she was feeling fine, she was in tears about the thought of having to go school. As parents, this broke our hearts.

      Well Mama Bear went down to the school and put an end to that.  We are fortunate that Delaney goes to school that is very supportive of her needs (and us).  They came up with a solution that works for everyone.  She now is allowed to go up to the front office and use their bathroom whenever she needs to. That was over a week ago, and this past week Delaney was back to loving being able to be at school.

       We ended that week by going to a place that doesn’t care about if you have hair or not, in fact they are trying to put an end to hair loss due to blood related cancers.  It was the Leukemia and Lymphoma Society’s Team in Training kick off party and Delaney was chosen to be an honored hero for the team.  As it frequently happens on this cancer ride, I also got another big dose of perspective.  While I was feeling down about Delaney’s week, I saw that my friend Desiree was also at the kick off party.  She was there to support the leukemia and lymphoma society and besides her warm smile, she was also wearing a pin with the picture of her beautiful baby Melina who lost the battle to leukemia.  Desiree is not going to stop supporting until no more parents need to worry about losing their children to cancer.  Maybe our week wasn’t so bad afterall. 

        Anyway, it was great to be at another Team in Training event.  I was involved with Team in Training long before Delaney was even born (heck, my personal email starts with tomintraining for a reason).  In fact, I met one of my best friends to this day through TnT.  So it was fantastic to be there and to hear how much they have done and the progress they have made in the fight to end blood cancers.  I’m excited to be supporting my wife and a group of over 10 women who are forming Team in Training’s Cancer Can Kiss my Stache Team.  Together these women have a goal of raising over $16,000 for the Leukemia and Lymphoma Society and in April will be running a half marathon together.   I’m also excited that THEY are out running on this 28 degree day with snow still on the ground, while I am sitting in my warm cozy house offering my “support.”  Today’s support, unbeknownst to my wife, comes in the form of an ice bucket (Sorry but I’ve been waiting over 30 years to use that zinger from the Wonder Twins).  Actually, today I am showing my support by simply asking for your support.  This is only for those that can afford to offer it.  Please don’t feel bad if you can’t give at this time.  If you are in the situation where you can help with a donation to the leukemia and lymphoma society, remember that no donation is too small as every single dollar helps.  I think they will be giving Stacey a team page, but patience isn’t my strength and I really wanted to send this out while she is on her first group run.  So If you want to donate towards Stacey’s fundraising goal, here is her link (and THANK YOU!!!): http://pages.teamintraining.org/rm/pltrvrhm14/sstaffoj1t

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!!!).

 

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Weeeeeeee!!!!!!!

       So the roller coaster that is cancer rides on.  If I was in Mexico, I would say that Delaney is doing fantastico.  We are smack dab in the middle of one of her toughest months of treatment and she seems to be doing better than ever.  In fact, at her doctor’s appointment today, it hit us that this was the very first time in almost six months that we went a week without having to call the doctor about something or go in to the office unexpectedly.  Before we could go around the room giving high fives to everyone, the nurse came in with her lab results.

       Her supposedly all-important ANC was 2300!  Woohoo!  I’m not a genius, but I know it has to be at least 750 to receive treatment and 2300 was… like…. at least… more than 750.  Well I was busy doing the math on my fingers and toes, I was brought back to reality by the nurse practitioner saying, “so we are ordering her blood products for next week.”  Come again.  This made absolutely no sense. Delaney had been feeling great AND had a high ANC, why in the heck were we talking about a blood transfusion? Well apparently even though her ANC has been going up, her hemoglobin has been going down.  

        So there we were (including two of Delaney’s sisters) in her private room discussing what should have been a very somber subject, but for whatever reason we were laughing.  “So you’ll have to go to the main hospital’s 7th floor,”  the nurse practitioner was telling us when Delaney squealed, “Oooohhh… I love the 7th floor!”  I’m not sure how many kids are excited about the possibility of having to go to the Oncology (cancer) unit, but as I guess the mustache and bow tie will attest to, Delaney beats to her own drum.  Then after giving her the day’s chemo treatment, they reminded her that her Mom would be giving her the medicine at home over the next few days and encouraged Delaney to be nice to her. “Your just lucky you have such a great nurse for a Mommy,” the nurse reminded her.  At which point Delaney’s straight faced comedian sister Ashley, who had her face buried in technology and hadn’t made a peep the entire visit said, “You have no proof of that.”  While we were all cracking up, the nurse corrected Ashley and informed her that she had seen her mom in action more than once.  

       Anyway, that is our update and here is what our schedule over the next week looks like:

Friday- Sunday: Delaney’s port remains accessed so her mommy can give her chemo at home.

Monday: School starts and Delaney starts the first grade.

Tuesday: We go back in to have her lab counts checked and an exam.

Wednesday or Friday: Depending on the Tuesday’s lab results, we either go to the main hospital for Delaney to have a blood transfusion on one of these days.  They already warned us that even if her counts say that it isn’t necessary on Wednesday, it almost certainly will be on Friday.

As they say at the happiest place on earth, “Please keep your hands and feet in the ride at all times… permenecer sentados por favor!”