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

Enough!

Enough! That’s how my good friend from college had to feel when yet another family member of a loved one was diagnosed with cancer. Actually, knowing Kris, her exact words were probably,“Dammit!” What can I say, she has a potty mouth and she isn’t afraid to express what is on her heart. However, she didn’t stop at putting a bar of soap in her mouth, instead she got busy and decided she was going to do something about it.
Not too long after that I got a phone call. “I want to start a team to raise money and awareness for childhood cancer and I need a team name, what do you think of ‘Delaney kicks cancer’s butt’?” (except I already told you she has a potty mouth… so it obviously wasn’t “butt”). “Hmmm…” I thought to myself, “I’d like to be able to tell Delaney what you are doing in her honor… maybe we could work on a more kid friendly name.” And that was the night we came up Delaney’s very own, “Cancer can kiss my stache!”
Now that Kris had a cool team name, she started recruiting friends to join Team in Training with her to raise money and awareness for the Leukemia & Lymphoma Society. Fast forward to today, Kris and her friends have raised almost $5,000!!!! In fact, at the time of this writing, they are just $150 shy of that aggressive goal Besides raising money, they started running… a LOT. While most of you are reading this on Sunday morning, they are running 13.1 miles! What better way to cheer them on from afar by clicking on their team link and donating a few bucks to help put them over $5,000 before they even finish this morning’s final run (here is the link for those of you that might be able to help: http://pages.teamintraining.org/sf/nikesf13/delaney#Welcome-to-our-Teams-Homepage). Regardless of whether or not they hit their “stretch goal” or not, they have already raised over $4800… and it all started with someone getting fed up with cancer and deciding to do something about it. To Kris and your teammates that are running right now, on behalf of Delaney and all of these little warriors fighting cancer, we thank you.
Speaking of enough, Delaney has had enough of the interim maintenance phase. She had her last chemo treatment in this phase on Friday. She of course, handled it like the little stud that she is and did great. It had her feeling a little under the weather Friday night, but by Saturday she was feeling well enough to play in not one, but two soccer games. On November 1st she will start the maintenance phase which she will be on until May 2015. As one of the doctor’s told us early in the process, the “maintenance phase” is almost a misnomer because it sounds like things are going to get easier. Although she won’t have to go to the doctor’s office as often, she will still have lumbar punctures, oral chemo, chemo in her port, and steroids to deal with. Just thinking of her still having to deal with all of this the next two times we do resolutions makes me want to say enough!
She has almost had enough, of soccer. Okay, not really, she still loves it but is getting very excited to start basketball. This past week she got her jersey (which she loves the fact that it is a tank top and allows her to show off her guns) and a new basketball. Before you know it, she’ll be ready to try out for the Harlem Globetrotters.
Delaney has also had enough of being bald. It was actually very sweet, her twelve year old sister came home from the mall with a hair stimulating product that she had bought for Delaney. You’ve never seen a kid so excited to take a shower! I don’t know if it really works, but Delaney’s hair is definitely coming back. What is more exciting is that she is slowly getting more comfortable with it. Saturday she got all crazy and put gel in her hair. She doesn’t have much, but the little bit of stubble she has was up in spikes. The only thing that was more spunky than her hair was her fighter’s attitude, as she has definitely had enough and more than ever wants to tell cancer that it can kiss her stache!

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About time you update us!

So I’ll be the first to admit it, I’ve been slacking in the updates category. Worst. Blogger. EVER. Anyhoo, instead of having you read a few different posts, I’ll save you the pain and combine the updates here.
Delaney has been doing great. About six weeks into the school year, she still has only missed two days of school and both of them were treatment days. She had another incident at school where some girls were asking her why she was in the girls bathroom. She handled it in a very mature manner. I handled it as a loving, Christian father and told her that if those girls tease her again she needs to just kick them in the nuts.
It’s not just kids that still mistake her for a boy. We were at the farmer’s market last weekend and an elderly lady was commenting on the fake tattoo she just had placed near her bicep. What does he have on his arm?” she asked. “SHE just got one of those temporary tattoos on HER arm,” I told her in my subtle way. “Oh what tattoo did he get?” Betty White asked again. “SHE got some sort of cheesy dragon on HER arm!” I yelled to her. “I just thought he wanted to show off his muscles” she giggled to herself. “Lady, if you refer to my daughter as a boy again, they are going to have to fit you for new dentures!” I warned her sternly. And that is how I ended up with a black eye last weekend.
Delaney’s treatment continues to go well. In fact, she had more chemo just yesterday. She was a little nauseous last night, but the medicine helped with that. I think I may have explained that this phase includes an increased dosage of chemo with each treatment. Our little stud seems unphased so far… I’m guessing it’s because of his muscles. 🙂
We actually had something very exciting happen last week. However, before I share what happened last week, let me flashback seven months. It happened the first week we were in the hospital after Delaney’s initial diagnosis. After about the 4th day, her sisters were allowed to come visit her in the hospital. One of the Childlife specialists gave them a tour of the cancer floor and held a kids only Q&A session. When I went to check on them, she was explaining how Delaney now qualified for the Make A Wish foundation. She must have noticed my eyes get as big as my head and my “I am about to faint” look on my face because she stopped in her tracks and immediately said, “Wait, wait, wait…. Just so you know, they changed their policy and it no longer is just for a terminal diagnosis.” As soon as my heart started beating again it became humorous as her sister Ashley was VERY concerned that Delaney would “waste her wish” on chicken nuggets!
Fast forward to last week when two very nice women representing Make A Wish came to visit us. The wife and I tried to keep quiet and not influence her wish. Delaney alternated between her silly self and her “I don’t want any special attention” self. After about two hours of giggling and probably very heavily influenced by hearing how much fun one of her best friends had on a Disney cruise, she officially wished to go on a Disney Cruise. Actually in her little goofball style, she wished to take a limo on a Disney cruise that would allow her to wear a tuxedo.
We haven’t heard from the official wish fairies yet, but we aren’t waiting on anyone to have fun. This weekend while Delaney’s mom got to have a much needed girl’s weekend with dear friends she grew up with, we cashed in on the very generous offer of the manager from the local Embassy Suites to stay with them for a night. With that said, thank you Bridgette and goodnight all… We have a yummy complimentary breakfast to wake up for!
Here is a pic of Delaney reminding you that September is Childhood Cancer Awareness Month.

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First day of school

It started at about 2 in the morning. The wife was wide awake with worry. Is Delaney ready to go back to school? What if her counts are too low and we just don’t know it? Should we have made some sort of check-list for her teacher? What about the school nurse? She only knows four kids in her class, maybe we should have the child life folks come out from the hospital again to help educate the other kids. Basically, she was squeezing at least a week’s worth of panic into the few hours before the first day of school began. She had been listening to the staff at Delaney’s doctors office and just didn’t think Delaney would be feeling well enough to actually attend school on the first day. In her mind, she was unprepared.

Sure enough, the kids woke up and everyone was feeling great. The house had that “first day of school” feeling when everyone is still excited about learning (or at least seeing their friends). Everyone humored Mom by allowing her to take plenty of pics. As for the whole wig question, Delaney decided to go Au naturale with just a ball cap covering her bald noggin.

When we got to school, cool little Delaney just had one rule: don’t embarrass me. At the risk of getting one of her knuckle sandwiches, we couldn’t resist being those parents that at least checked in on their little one. Sure enough, she found her classroom, hung up her mustached Hello Kitty backpack, and found her seat just fine. I didn’t know who I was more proud of: Delaney or her Mom who seemed to be holding it together so well. I then looked at her Mom and realized she wasn’t holding anything together. She wasn’t getting emotional because she was sad though. Unlike every other year where we just take it for granted that our kids would be healthy enough to go to school, she was just crying out of gratitude that her baby, in middle of what should be one of the toughest months of treatment, was feeling well enough to go to school. Luckily for her, she was outside of Delaney’s classroom (and scope of vision) when she lost it or Delaney might have had to give her a knuckle sandwich.

Here is a pic of Delaney all decked out for her first day of school.

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