10 Months Ago~Colorado Springs Cancer Photographer

10 months ago today our world was rocked.  Like, seriously rocked.  Like, changed forever.  Like, faith had to take over completely so that we wouldn't go crazy... or cry myself to death. We got that call.... you know.... THAT call.  The one you never want to get.  The one you hope will start with, "Good news!  It's really nothing at all!"  Or even, "It's pneumonia.  I'm sorry."  Not the one that starts with, "I've been trying to come up with a plan for Carter before I called you."  And not one that continues, "Get him out of bed and take him to the hospital.  He needs blood.  Lots of it.  And platelets... lots of them."

BUT.... we have made it this far!  We have made it to Maintenance, which, honestly has been harder than we thought it would be.  It's been an adjustment... the whole adventure has been.  And while I would trade all the silver linings and a future Make-a-Wish trip for a normal, healthy little 6 year old who can run around with his friends, that's not our lot.

Our lot right now is this.  Cancer.  And that's okay.  There are still days for me that are hard.  But there are a lot of days that are wonderful.  Where cancer is just a part of our lives and we don't give it a second thought.

There are things that I never thought I would hear my 6 year old son say... "Hey Mom.  Since my counts are good can I go play at Dylan's?"...  "What?!?  My liver counts are that high?  Oh man!"...  "I know, Mom.  Don't.  Touch.  Anything."  (Every time we take him anywhere I say that to him.)...  "Mom, when I turn 9 and my cancer is gone can we go to Chuck E. Cheese's?"...  "No, Addilyn, you won't get cancer, too.  I promise."...  "It's ok, Mom.  I don't mind playing alone at recess.  I played with my friends until they started running.  Then I got tired and couldn't keep up."  (That one is especially hard for me.)... "My name is Carter and I have A.L.L. Leukemia."  (Correctly it's just A.L.L. as the last "L" stands for Leukemia... I think it's so cute when he says that, though.)

I am sure to thank the Lord each and every day for his doctors and that they are saving his life.  I also thank the Lord for him reacting well to the medications-- meaning the cancer IS going away... although the side affects are less than ideal.  I thank the Lord for allowing us the opportunity to save him; giving us that chance and not just taking him from us.  I thank the Lord for the friends and family that have taken such good care of us, who have prayed for us, cooked for us, listened to us, called us, texted us, emailed us, sent us sweet cards or gifts for the kids.  We have SO much to be grateful for.  And I hope I never act otherwise!!!

Ever since Carter was diagnosed and his hair started falling out I have been growing out my hair.  Those of you who know me know that my hair is long.  Always has been.  Always will be until I'm too old to pull it off.  While I love my son, I'm not about to shave my head.  (Vain?  Perhaps.)  But I wanted it to get long enough to be able to chop it off and donate it.  I don't color it a whole lot so I'm a good candidate.  (Don't worry, we pulled up the hair that has been colored and only donated the bottom portion.)  It's really easy to donate your hair.  Just chop off 10 inches (that's the hardest part, FOR SURE!), fill out a form, and stick it in the mail.  Anyways, my sister lopped it off for me and actually made it look cute.  It doesn't look as cute when I do it... in fact it's kind of like I have a big poof ball on my head but that's ok.  At least I don't have cancer, right? :)  Plus, it's a super cute little pony.  :)

I thought it would be funny to take a family picture like this.  Usually Carter has to be the one wearing the mask... but not this time!  Everyone else had to wear one and he got to be mask-less.  (More of my family pictures to come.)

Regrowth and Maintenance~ Colorado Springs Children Photographer

In two and a half years we will have a cancer-free son! He started maintenance this past month.  We have an official "cure" day. May 16, 2014.  A meer month before he turns 9.  I can't wait for that day.  SERIOUS celebrating will be going' on up in her'! I know it's a long, long, LONG ways away still but at least there's a date.  We're so proud of Carter for being so strong, brave, and positive throughout all of this.  We could not have been blessed with a more perfect son.  By Christmas he'll have a short little buzz cut! It's already looking great. When you rub his hair (which is as soft as a newborn's) you can feel little spikes of new hairs coming up.  I can't tell if he looks like a cancer patient anymore because to me he has a TON of hair.  But then, I think if I saw him like this 9 months ago would I have been horrified?

He was diagnosed with Leukemia 9 months ago today and now he's into his final cycle of chemo. What to expect for the next 2 1/2 years is this:

--> 5 days of steroids a month (3 pills in the morning and two pills at night). They cause insomnia for about a week. Sucks.

--> 1 prevacid each morning (helps with stomach acid which is caused all of the other meds)

--> Mercaptopurine nightly (a type of chemotherapy in pill form taken at least two hours after dinner with only water... I have to set my alarm every night. So annoying. Because it's chemo you can't touch it with your fingers... yet I willingly have my son swallow it. Weekends he has two pills at night. This one makes him kind of sick. I don't like it.)

--> Methotrexate (another oral chemo-- again, can't touch it) every Monday (with a few exceptions). 6 1/2 pills at night.

--> Each chemo visit will consist of Vincristine through his port.

--> Each chemo visit will also consist of an hour long dose of Pentamidine (an antibiotic to preventpneumonia... which could kill him).

--> Every three months he has a spinal tap where they give him Methotrexate into his spine and test the spinal fluids for cancer.  (These are the Mondays where he won't take his Methotrexate at home.)  We are very excited that he will be getting them so less often.

There is a chance that some of these will be switched up a bit if he doesn't react well to them.  For example, the Mercaptipurine caused serious elevated liver counts last time he took it.  He had to take it for a month last time and by the end of the month one of his liver counts was 875 and in a normal person it's 25.  Left that high for too long there will be permanent liver damage.  If he does that again this time around they will have to change it up with another drug.  The one that they would use would probably be one that causes serious hair loss and nausea.  (Although last time he took it he didn't get real sick... but went VERY VERY bald.)  Only time will tell though.  Just because he reacted a certain way last time he took a specific drug doesn't mean that he'll react that same way this time around.  (Annoying, right?)

I have mixed feelings about his hair coming back in.  Him being bald is a very visual reminder that he has cancer.  Now that his hair is coming back in I feel like people won't be as careful but he'll still be as sick... you know?  But, it's fun to watch his hair come back in.  It's pretty light.  I think it'll be a dirty blond.  Much lighter than before.  But there's still time for a curve ball with his hair color.

4 Ladies and a Dad~ Black Forest Family Photographer

Bryan is so lucky to have bought into a practice with two amazing partners.  This is one of his partners, his beautiful wife, and three adorable girls.  And his darling wife is one of the best teachers at our gym.  They were troopers traipsing through the dirt and trees for me.  We had a lot of fun.  This mama likes the more formal posed pictures, which, honestly, for me is a little bit harder.  Hopefully we got what she wanted.  They are a beautiful family so we were at a good starting point.  :) The highlight of the entire afternoon for me was when I was doing pictures of just the girls.  I had Dad standing behind me so that the girls would look at me and hopefully I could get some natural smiles.  They begged him to to the "screeching pig" (I think that's the name... if it's not, it should be changed to that).  And, boy, did he deliver!  I about jumped out of my skin!!!  It was hysterical.  One he should definitely start doing in the dental office just to see people's reactions.

The B Family- Colorado Springs Family Photographer

I seriously love this family with all my heart.  They are so darling and when I get the chance to photograph them I definitely earn my keep.  That being said, this time was SO different!  The kids were FABULOUS for me... actually, little Lacey wanted nothing to do with me but as long as Mom and Dad were near by, she was fine.  (But I do have some marvelous pictures of her so distraught you would have thought I was coming at her with the Scream mask on.)  The boys were champs.  They just moved down to the Springs from Denver and I couldn't be happier to have them near us.  They are some of our dearest friends who we also have the privilege of being stuck with for eternity!  Love you guys!

Again with the bear butt... :)

The G Family~ Aurora Family Photographer

I love those hard working soldiers we have.  And this Daddy is one of them.  He was home on leave so it was family picture time.  He was SOOOOO excited to have family pictures done (*she says with OVERWHELMING sarcasm...*).  Seriously, Dad's are always... ummm... how to say it nicely... not too into pictures.  :) But, at the end of the day, we got some cute ones and he loves his family so much that even though he was trying to be tough we got some pictures of the softer side.  Plus, the awesome mommy and I met up for dessert to look over all the pictures.  She is SO cool.  One of the greatest things about this business is meeting new people... and Rachel was no exception.

Day 29~ Colorado Springs Children Photographer

We are entering a rough patch.  There's no getting around it.  We are ready for it.  I just kinda want it here so it will be over, you know?  There are all kinds of drugs he has been getting the past month.  He has been getting Vincristine (side affects he's gotten from it: dry hands), Methotrexate through a his spine (HATE it when he gets spinals... just scares me... and he gets them all the time!) (side affects he's gotten: little bit of a sore back), Dexamethasone (side affects he's gotten from this: crazy hungry, weak muscles- specifically legs, chubby cheeks, slight insomnia, a little moody), Pegasperaginase, Doxorubicin (side affects he's gotten from this: very rosey cheeks), Pentamidine, and Melatonin (counteracts the insomnia). This week when he finished his steroids (the Dexamethasone) he got horrible pains and cramping in his arms, lower back, and especially his legs.  After a little private "Meet the Teacher", Carter and I headed to pick up the girls at Chealsea's.  On the way out of the school I could tell he was in pain but he wouldn't let me carry him.  By the time we got to Chelsea's he was in the back seat whimpering because his body hurt.  By the time we were on our way home (with Chelsea's daughter/Carter's best friend, Taeler) he was outright screaming in agonizing pain.  I have never heard him like that.  And for him to do it in front of Taeler... I knew it was bad.  We headed straight to the Oncology clinic for me to pick up a prescription for a narcotic... apparently you can't really call those in?  An HOUR later (takes 25 minutes to drive down to the clinic) I finally got him some meds and got in out of pain.  It was torture.  For Carter.  For me.  For Taeler.  (My girls didn't seem to mind it.  :)) When Chelsea came to get Taeler she got in the car and sobbed.  It was hard for her to watch Carter in pain.  She's such a little sweetheart and those two love each other dearly.  (What?... No.... Me?... Planning the wedding already?... Where on earth would you get that idea...? I have no idea what you're talking about...)  And as for me?  I cried the entire way to the Doctor's office, while I was talking to the Dr (who gave me a very sweet hug), and then 1/2 way home.  I really think the worst part about this "adventure" is watching him when he's in pain.  I HATE IT!  What parent doesn't?  Who likes to watch their kid have the stupid flu, let alone a REALLY bad flu that could kill them and last for nearly 3 and a half years?  Here we are, 4 days later and he's still kind of limping around from the cramping and still having to take Ibuprofen at least once a day.  One thing I really, honestly, do think about is that our Savior DOES know our pain.  He knows Carter's pain and my pain.  It DOES bring me comfort.  And hopefully it brings him comfort.

Coming up we have a whole new slew of medications.  (He was suppose to start all of this today but he SO miserably failed his counts yesterday that they are pushing it off until Tuesday, if not longer.)  Most of which I am NOT looking forward to.  AT.  ALL.  Nearly all of them cause vomiting, hair loss, nausea, all that fun stuff that you think of when you think of cancer treatment side affects.  The good news is that for the next little bit (at least the next month) there are no steroids, Vincristine, Doxorubicin, or Pegasperiginase.  The new meds he has are Cyclophosphamide, Thioguanine (or called 6TG), Cytarabine, and another spinal tap with intrathecal Methotrexate.  (I have honestly lost count with how many spinal taps this kid has had.)

The Cytarabine he will be receiving through his port four days in a row, then a break, and then 4 days in a row.  We will head into the clinic for him to get accessed (meaning they access his port with a needle through which they can give him meds).  They will leave him accessed, then send us home with 3 days worth of Cytarabine.  We will give it to him at home through his port in an IV bag.  Then we will head back into the clinic (or hospital if it's over the weekend) for them to de-access him.  Bryan said he will just do it from home and I know I'm just wimpy but I prefer the nurse or doctor just do it.

The Thioguanine comes in pill form.  He will get it nightly for two weeks.  He gets two pills a night on the week nights and one pill on Saturdays and Sundays.  He was taking the "fraternal twin" of this a few months ago.  It wasn't my fave.  Because it's chemotherapy, we cannot touch the pills.  We have to dump them into a little pill holder thingy.  (That's the technical term .  :))  You know those things you get when you buy liquid meds for your kids?... those little measuring things.  Anyways, then Carter has to put them right in his mouth and take them with water.  It has to be water... nothing else.  It has to be at least two hours after he last ate.  And he can't eat for another two hours.  So, right before bed (sometimes we had to wake him up with the previous med like this) he takes this.  With the 6MP (the last med similar to this he took- the fraternal twin) when he had to take the double dose (for that one it was on the weekends) they made him sick.  He would only puke once in the morning and then he would feel much better. But that drug also did NOT agree with his liver.  He liver counts were THROUGH THE ROOF!  So, this Thioguanine should be interesting.  I'm hoping that last time it was just the combination of the meds he was taking and not just the 6MP causing the liver freak outs.

So, along we go... this is the part I have been dreading for a while and I'm glad it's here.  He's such a tough little guy that so rarely complains and I KNOW he can handle this.  What would life be without a little puking, anyways?  :)

Addi Girl~ Breckenridge Children Photographer

This child.... honestly, she couldn't be more perfect... couldn't be more adorable... couldn't be more sensitive...  Sometimes my Mommy-guilt sets in.  She is the middle child and I do my best to not let her have "middle child syndrome".  But, right now, honestly, it's hard.  With Carter going through everything he's going through and with Preslee being such a little spit-fire right now (and potty training), I worry constantly if I am being a good enough mommy to this little sweet heart. She is IMPOSSIBLE to stay mad at.  I dare you to try it.  You won't be able to.  Her heart breaks into a million little pieces when she knows she's done something wrong or made you upset in any way.  She sobs very sincere tears and just wants to hug you when she knows your upset with her.  Every ounce of frustration or anger instantly melts.

She is also our little snuggle bug.  Always has been.  Ever since they handed her to me the moment she was born, she has loved cuddling (every mother's dream).  She will constantly come to us (sometimes if she wakes up to pee or something at 2am...) and sweetly ask, "Can I snuggle wis you?" in her cute little voice.

We could not be more in love with this little girl.  I just wish I could freeze her like this so she doesn't turn into a mouthy teenager.  She also says she wants to stay little forever because she doesn't want to "be a mommy and have to get a I.B."  (IV... when you have a baby you have to get one.)  I know there is a reason the dear Lord gave her to us... not sure what that reason is, but I'm not going to question it.  I could spend every last moment of my life with her.  She is my little angel.

Preslee Pie~ Breckenridge Children Photographer

Last week we were lucky enough to head up to the mountains for a week off.  It was nothing short of amazing!  One of the silver linings of our situation is having wonderful people wanting to do wonderful things for us.  A group called Domus Pacis Family Respite GAVE us a week in Breckenridge with all kinds of amenities provided for our family.  (I'm sure they're accepting donations... :))  We partied hard... cancer style.  :)  We did every outdoor activity we could find, road the gondola up the mountain FOUR times.  The kids could NOT get enough of it.  It was truly wonderful.  It is also a photographer's dream come true!  I went and did mini shoots with each kid, in a different location, on a different day.  I also did some pictures of my parents together (they came which was so awesome), and pictures of a beautiful warrior fighting her own nine year battle.  Pictures to come on all that. Our baby turned two while we were there.  She's been two in spirit for quite some time.  :)  She's our little pistol.  Our TRUE red-head.  She's got spunk, fight, and a touch of an attitude.  She knows what she wants and she WILL get it, dang it!  We couldn't love her more!

Best Video EVER! ~Colorado Springs Videography

I so wish I could take any credit at all for this... but I can't.  Kelli France, of France Photography make this killer video for me with the help of her super talented videographer because she loves me so very much.  :)  (I bought her dinner and fro yo... does that make up for it?)  I have told her no less than 100 times that it means the world to me.  It's so priceless!!!  She and Jess (videographer extrodinaire) will never know how much this means to me.  It's seriously perfect.  They could not have nailed this any better!!  Thank you Kelli and Jess!  You talent is through the roof!!  

Carter's Cancer ~ France Photography from Kelli France on Vimeo.

Happy (Late) 4th of July!~ Pikes Peak Photographer

One nice thing about having a child with cancer is that we spend time with just our little family most of the time.  It really is kinda cool... we are seeing really pretty things all over the area.  On the 4th, my cute hubby's parents came up so we went out exploring.  We came upon some beautiful scenery and some pretty nice light.  Not wanting to miss a photo op I tried to snag a few pictures of each of my little ones.

Mine~ Colorado Springs Children Photographer

A few weeks ago I went out with a super awesome photographer friend of mine, Kelli France.  (Took the MOST amazing photography business class from her... WELL worth it!!)  We took millions of pictures of Carter and she took a million more of Carter and me.  We also brought along her videographer which was great because now those two super cool girls are making a video montage of Carter and me together.  I am SOOOO excited to see it.  I'm rarely on the other side of the camera so when she offered to do this for me, I was more than happy and beyond grateful for the chance to have her use her talent on us.

Patient, Patient Family~ Colorado Springs Family Photographer

This beautiful family is one that has been featured on my old blog a time or two.  This is Bryan's sister and her family.  They are pretty much awesome.  I love hanging out with her and her kids, clearly, are adorable.  Too bad they live so far away... we don't get to see them much.  We decided to brave the rain and the cold to take some pictures.  The kids did pretty darn well considering the weather.  I was bummed that the sun never came out to play but, hey, you can't have everything.  :) She has been beyond patient with me.  We took these pictures about 4 days before Carter was diagnosed with cancer so she patiently waited while my world was turned up-side-down.  And I am very grateful for that.  But, since I am taking her twin sister's family pictures in a few weeks I figured I should probably get on the ball a little bit. :)

Thanks for the great afternoon, guys!  And thanks even more for being so patient.  Love you!!

A few Updates~ Colorado Springs Children Photographer

****I wrote this nearly three weeks ago... Just as I was adding pictures and links my internet pooped out and I so frustrated I walked away until now... major slacker.  :)****

Carter's, overall, doing awesome.  He "passed" Consolidation (the second cycle of chemotherapy) on Monday and started Interim Maintanence 1, which *should* be two months long.  "Should" means that as long as he passes his counts every 10 days he will receive two different types of chemo: Vincristine and Methotrexate.  I was so excited to receive the good news that his counts were high enough to start IM.  After he received both of these meds on Monday, the doctor called with some blood test results.  Before he gets the meds they check his blood along other things.

One of the "other things" is checking how his liver is holding up.  They don't get those results until the end of the day.  The past month his liver counts have been kinda high... like 7 times what they normally are.  That is kind of expected with the chemotherapy he has been taking at home every night (Mercaptipurine). But, even still, 7 times is high for that.  Normally one of his liver counts (there are two types of ways they test it) should be 25.  Last week at chemo it was 172.  High, right?  This week, BEFORE they pumped him full of meds, it was 873!!!!  (***Update: As of May 26th it was down to 555.)  When the doctor called she said had she known his liver counts before he got his chemo there is NO WAY she would have given them to him.  This will NOT cause permanent liver damage, but it will push his chemo back (my guess) at least 10 days... which means 10 more days he'll have to wait until he starts school.

Dr. Reaves (who I'm pretty sure walks on water) also told us to expect Carter to fail his blood counts at least once, if not more often... now I'm wondering if not only are we going to have to make sure he passes his blood counts, but will we also have to watch his liver counts.  I mean, don't we need our livers to be functioning?

And the worst part (to me) is that the med he was taking this last month which was causing the aggravated liver is one he will have to start taking again in a few months and take until his treatment is DONE! That means at LEAST 2 years!!!!!  BUMMER!  It makes his tummy a little upset.  It makes him throw up some times.  Because it's chemotherapy, we canNOT touch it. It can make us very sick if we do. We have to dump the pill into a medicine cup and Carter has to eat it out of there.  He also has to take it two hours after he east dinner so if we have a late dinner we have to wake him up to take it.  It's so annoying.  And, apparently, it tastes gross.  (Haven't tried it.)

Dr Cook, his other oncologist (also a water-walker), said to not plan on Carter going back to school until JANUARY..... His comment was met with complete silence from me (me, speechless?... odd, right?).  I literally just stared at him.  I thought (I think it was more hope than anything) he would be going back in the fall with the other kids.  Nope.  The worst part of chemo is coming up in about 3 months.  There's a 5 week period that is super rough on the kids.  That will fall in the beginning of the school year... IF Carter passes his counts continuously between now and then.  The more his chemo is pushed back, the more the hard part of chemo is pushed back... and the later he goes back to school.  Dr. Reaves (who is the less conservative of the two doctors) said Carter may be able to go back a little earlier if he's doing well.  I think the absolute earliest will be October.  And that's if things go smoothly... Suck nugget.

Although his liver is in poor condition right now, his spirits are as high as ever.  He's THRILLED he only has to go to chemo every 10 days instead of every week.  He's looking forward to his birthday next month and I'm finally backing off of the whole "you can't touch a single person" thing.  He's getting healthy enough, and familiar enough with what he needs to do to stay clean, that we are talking about having a friend over every now and then.  We frequently talk of what he wants to do for Make-A-Wish.  We talk about how he'll get his port out when he's nine and then he'll be all cured.  As always, his attitude amazes me.  He brags about how he's had more surgeries than I have.

At the end of each cycle of chemo we celebrate with a cake.  We write the name of the cycle on the cake and we put a candle on it (I think the bakery people think I'm nuts for writing things like "Consolodation" on a cake!).  The candle number represents which cycle he has just completed.   I'm SO proud of him and how far he's come.  I'm so proud of him for not being angry about this whole thing (who knows if and when that day will come).  I know he's going to turn out to be an amazing man... just like his daddy!

These are from a month ago when he finished Induction, his first cycle of Chemo (which lasted a month). You can see the chubs in his cheeks from the steroids.

Like Father, Like Son~ Colorado Springs Family Photographer

Carter is definitely his father's son.  He's very logical just like Bryan is.  For example: Bryan thought that Carter may have Leukemia a few days before he was diagnosed based on a few different things.  When I asked him why he didn't tell me he thought it could be cancer he shrugged his shoulders and said, "You're a mom.  You would have freaked out and I thought it was a long shot.  I'm not medically trained to diagnose something like that anyways.  And you had an appointment for a few days later.  What would have been the point of telling you?"  Hmmm.  Typical Bryan.  Me?  I would have screamed from the rooftops, "My son is tired and has two very small red dots on his neck!!  IT MUST BE CANCER!"  :)  Wouldn't have been too productive. Carter is like Bryan like that.  He's quite logical.  When he was explained the process and road that lie ahead of him he shrugged his little 5 year old shoulders and said, "Well, it doesn't sound fun but if this is what needs to happen to make my blood healthy then I guess that's ok."  Seriously?  You're FIVE!  Shouldn't you, oh I don't know, freak out that the next three years of your life will be filled with shots, puking, hair loss, and tons of other yuckies you won't enjoy instead of chasing girls around the playground, playing sports, and digging tunnels in the snow?  So weird to me, this thing they call logical thinking.  I'm just FAR too girl to be that rational.

Bryan and Carter are both thinkers as well.  You can just tell, looking at them, that the wheels are turning.  They are processing something that has been said to decide whether or not they believe it.

They are also both very into sciencey stuff.  Carter thinks weather is cool... so does Bryan.  They both think the human body is cool.  Once, about a year ago, they had a conversation about white blood cells at the dinner table.  Carter could not have been over 4 at the time.  Seriously?  White blood cells?  So odd.

When people started shaving their heads Carter quickly turned to his hero, Daddy, to see if he was going to join in the fun.  Bryan LOVES having a shaved head.  But, he looks young (he IS young).  He has people constantly asking him how old he is.  (As he's shoving a huge needle into their mouths...)  So, he was a little hesitant.  He sells treatments all day long to his patients.  They need to trust him.  He doesn't have any wrinkles.  No facial hair.  Not a lick of gray hair.  He thought if he shaved his head he would look too yound making it a little more difficult for patients to take him seriously.  And, afterall, the livelihood of our family depends on him raking in the big bucks.  :)

After much deliberation, he decided, "Who cares if people don't take me seriously for a few weeks.  I'll let me facial hair grow a little to compensate.  Shaving my head to support my little man will be something he will remember forever."  Could not agree more.  I was feeling that way inside but tried hard not to voice my opinion because I didn't want to make him feel bad.  (It didn't affect his work at all, by the way... probably becaue he looks so stinking HOT with a shaved head!)  I must admit, while he was on the fence about it, I think there was one thing that pushed him over the edge.  Ben, Bryan's super amazing younger brother, played the "I'll do it if you do it" card.  Worked like a charm.  When I told Bryan that Ben was on board if Bryan went for it, he got this look in his eyes... you know, the look an older brother gets when he sees a wonderful opportunity to tease a younger sibling?  Now that they're all grown up, Ben is the one and only sibling that doesn't end up on the receiving end of Bryan's taunting.  But, I faulter from my point.

The shaving if the heads is just one more thing that Bryan and Carter have in common right now... although Bryan's is already on it's way back (he's got TONS of hair) while Carter's is just getting thinner and thinner.  I love this picture of the two of them.

Changes~ Colorado Springs Children Photographer

Our lives have changed a lot in the last 6 weeks.  A lot.  As to be expected I suppose.  We are living day by day, sometimes hour by hour.  I wanted to make a list of these changes so that in 10 years when I look back and read about this, I will remember everything.  I don't know if cancer is like pregnancy in the sense that the more time that passes the less you remember how miserable it is.  :)  Here are the changes that come to mind: 1.  We are SOOOOO much more sanitary than we use to be.  We are living the way we all know we are suppose to be.  You know: not sharing cups or spoons, washing our hands like crazy people, using sanitizer after anyone sneezes, washing sheets and pillow cases about twice as often... things like that.  (Am I totally ratting myself out here?  I promise I'm a clean person!)

2.  We never go anywhere.  Never.  Ever.  Carter leaves the house to go to chemotherapy.  We quit piano-prep classes.  We quit basketball.  We quit school.  There is only one friend at this point that Carter is allowed to play with.  They adore each other and our middle kids (both girls) are best friends as well so it works out well.  They see each other about once a week as long as everyone is healthy.  But at the same time, this friend is a girl and I know occasionally he misses boy time.  Legos and shooting.  Things like that.  Poor kid.

3.  No vacations.  We cancelled our trip to San Diego (we were suppose to leave a few days after he was diagnosed.)  We cancelled our trip to Arizona.  We don't know when we will be traveling at all.  Even when he gets the go ahead to travel, will we fly?  I don't know if he'll be ok on a plane with all that recycled air.  Sick.

4.  I'm the nagging mom.  I have to ask other people before they cross the threshold of our home if they have so much as a stuffy nose.  I feel SO ridiculously stupid but there comes a point where you just don't care anymore.  It's not worth your kid getting sick and ending up in the hospital because someone wants to bring a snotty kid over to say hi.  (Even though it's their way of showing support.)

5.  We go to the hospital if Carter has a temperature higher than 101.5.  No questions asked.  They start him on antibiotics before they even have blood cultures back.  This happened on Wednesday night.  Cultures came back clean but he had two doses of rocephin anyways.  This also resulted in two extra trips to the oncology clinic which took us to a grand total of four days last week spent in some sort of medical facility.  Awesome.  We talked to Carter about maybe getting sick during the day next time so I'm not sitting on that uncomfortable chair in the ER until 1am.  He told me that this is when the doctors told him to get sick and that he couldn't help it.  :)  Goof.  One good thing about him having cancer is that we didn't even have to sit down in the waiting room.  We went right up to the counter, told the girl that he's immune comprimised and she opened the door into the back.  We went right to his private room and hung out there.  MUCH better than a normal ER trip.

6.  He knows things he just shouldn't as a 5 year old.  He knows what blood pressure is.  He knows about his reflexes (They check them every time we go to chemo).  He knows to cover the toilet after chemotherapy because his chemo pee will splash onto the toilet and make other people sick.  (We're still working on getting him to actually flush the toilet.)  He knows about white blood cells, what they should do, and that his are sick.  He knows about cancer, specifically leukemia.  He knows his hair is gone right now but it will come back.  However, he does NOT know that cancer can be fatal.  We feel no need to tell him that.

7.  We have more hats than any hat store around.  He loves his hats.  He wears them like shirts.  Changes them every day.  It's pretty cute.

8.  I have turned into a completely reclusive person.  You know that saying, "If you can't say anything nice..."  Well, I've changed it.  If I can't say anything positive, I don't say anything at all.  I try my darnest to be positive and upbeat.  Normally I do fairly well.  But not always.  As I've mentioned before, sometimes I just want to feel sorry for myself and my family.  I just want to whine and not get dressed in the morning.  Sometimes I just want to say, "I don't care about your stupid problems!!! I am completely self-centered right now and I ONLY care about my family so SAVE IT!"  (To date I don't think I've ever acted on that instinct... but be forewarned.  :)) (I should add that I don't feel that way towards close friends... it's just people on FB that I'm not really even friends with anymore, you know?)   BUT, normally, I'm good.  Normally I'm a happy mother to two very healthy boisterous little girls and one on-his-way-to-getting-healthy little tired boy.  And I wouldn't trade it for anything in the world.

9.  I rarely (RARELY) answer my phone anymore.  I just like people to leave messages.  I was getting so overwhelmed with trying to keep everyone informed that I asked Bryan to handle his family and I handle mine.  That has helped a little bit, but there are still friends.  These friends are awesome, wonderful, old friends that are calling out of sincere concern.  That's why I have this blog.  So that they can check up on Carter, I have a journal, and it saves my sanity a bit.  (For the record, I'm about a million times better with texting.)

These changes are just part of our every day life now.  It's starting to get "normal".  I am so grateful for our new normal.  I'm so glad he's responding to the medicine he's getting.  I'm grateful for the power of prayer.  I know there is a Father in Heaven who loves my sweet little family dearly and while we don't understand every decision made, He sees the big picture.  And even in the finite picture we see, it's a good one.  This will end.  We only have three years and two weeks left!  Woot woot!!  :)  (Barring nothing nuts happens and his counts stay okay.)  I feel so sad for those people that don't believe in a higher being.  Someone that sent us here to be tested.  Someone who loves us unconditionally.  Those people are missing out big time because change happens.  Weather you're ready for it or not.  It comes.  Sometimes you see it coming (in the form of a tummy- and butt- getting bigger by the day) and sometimes you don't.  But all change has it's silver linings.  Sometimes you just have to check under every rock and all the nooks and crannies to find that silver lining but it's there.

Visitors, Visitors, and More Visitors~ Colorado Springs Family Photographer

Bryan and I have THE most amazing families in the universe.  The night Carter was diagnosed I called my parents.  (What?... no.... I TOTALLY didn't cry like a baby through the ENTIRE conversation... there was no hyperventalating, no snot, no crying-so-hard-I-could-barely-see-the-road going on....  Not me.  I don't do that. :))  They were on the first flight out the next morning and were at the hospital by early afternoon.  They were coming out to help with the girls but since the girls were contently playing at Chelsea's they came to the hospital.   (Mom, pat yourself on the back for holding it together and not crying... I knew she had spent the entire previous night in tears.)  Carter was thrilled to see them.  They spent a week with us.  It was so refreshing on my few hours away from the hospital to come home and see their smiling faces.  We all know, there's nothing in the world quite like Mom.  And my mom and dad are two of my very best friends in the world.  They are AWE.  SOME.  Seriously so cool.  (But that is a post for another time.)  They were able to spend a lot of time at the hospital with Carter and my mom was up to her usual antics while she was there.  Making stuffed animals dance in order to get Carter to laugh.  Recording the doctor on her iPhone so she could send it to my family.  Giving the Doctor the hundreds of papers she had printed off from Wikipedia in case the doctor needed to learn a thing or two.  (Seriously?  Wikipedia?  People can go in and edit that just for kicks!!)  So funny.  And my dad ended up extending his trip so he could spend more time with us.  Who needs to work and make money anyways?!

While my parents were here partying with us, Bryan's sweet mother was waiting with baited breath for her chance to come up.  She had been up visiting and had gone home a mere 24 hours before Carter was diagnosed.  (Although she was very much on my side with getting him into the doctor.  She was quite clearly the concerns I had with his energy level.)  She had her plane ticket about .08 seconds after we told her when we wanted her to come.  She once again dropped everything (she has her mother living in an attached apartment whom she cares for, her super cool husband, one daughter in high school, and two daughters off track in college all at home still).  I absolutely LOVE my in-laws.  You hear such horror stories about "mother-in-laws" and I am happy to say that I have none such stories.  She is very respectful of us and our privacy.  She loves me like I'm her own. (how could you NOT?!?)  She ADORES my children.... literally, I think she would raise them for me if I asked.  And, most of all, she raised the most wonderful man in the entire world.  Bryan is amazing and it's in great part to how he was raised.  We loved having her come visit and can't wait for her to come back.

After Maureen left Bryan's youngest sister, a junior in high school came out for the weekend.  Naomi, or Auntimoni as the kiddies call her, was so great to have out here.  She was the one here when Carter finally got to come home from the hospital.  When we walked in the door there was a HUGE banner that she and Addilyn had made hanging on the wall welcoming home Carter.  There was also a chocolate cake in the oven to have for dessert.  SO thoughtful!!

Naomi had to get back for school, but have no fear, Noelle came to the rescue.  She came and visited for a week.  The kids had a blast with her.  Even though Carter's energy level was st rock bottom, she would be sure to include him whenever he was up for playing.  They were constantly building forts, playing, and doing all kinds of things that fun aunts do.  She was really good about stepping up and getting things done when I needed a break.  I never had to tell her what I needed.  She just seemed to know.

Next was Nellie's turn.  I'm pretty sure I need to replace Nellie's jeans after her visit.  They played so much "Doggy" that I'm sure she has a few holes in the knees of her pants.  She was the one here when Carter's hair started falling out.  She was very sweet and sympathetic with the whole thing.

All three of these girls were so great about helping out.  They cleaned, changed bums, put kids in bed, cooked, babysat, let me nap... you name it, they did it.  And Dru and Maureen foot the bill for all of their plane tickets.  They didn't bat an eye lash when it came to getting the girls up here to help us out.  (And we all know how cheap plane tickets are when you are buying them only a week in advance.)

Once Bryan's family was done with their rounds up here it was Aunt Kelly's turn.  Kelly is my super duper sister.  She's older than me so sometimes she doubles as a mom.  :)  She came up for a few days while her sweetie of a husband watched the Ladies.  (Have I mentioned how much I love her girls?!?)    My kids ADORE her and were N.O.T. happy to see her go.  She was here when Carter had his second port surgery.  By this point Preslee was pretty much over everyone in the world who wasn't Bryan or me, but she loved Kelly.

My kids are so lucky.  They have the world's best aunts.  And 1/2 of them were able to come visit during that first month.  When one family member left, the kids were heartbroken.  But their hearts quickly healed as another fun family member swooped in to play with them and keep their minds off of the fact that Mommy and Daddy weren't quite themselves and that Carter was going through all kinds of stuff that wasn't normal.  We will be eternally grateful to everyone who came and helped out during this time.  We are also grateful for those who WANTED to come help but because of their own families and schooling were not able to be here in person.  We know their hearts were with us the entire time.

This post would not be complete without mentioning Chelsea.  She has been my go to throughout this past month.  She takes my girls when I have to take Carter to the doctor and Bryan's working.   She dropped her plans for a girls night out at 8:00 at night when Carter was diagnosed.  She rushed right over (Bryan hadn't even told her what was wrong when he called her) and stayed with my girls until Bryan got home around 1:00am.  (Not entirely true... Nash needed to eat so Josh stepped in and stayed the remainder of the time.)  She also took them the entire next day.  It was easily over 12 hours.  And then she let me cry on her shoulder when I can to get them that night.  She has seriously been my angel.  I could not have made it through the last month without her here.  She NEVER makes me feel bad about leaving the girls with her (I promise I try not to take advantage of her... I've only gone shopping twice when I told her I was really going to the doctor. ;))  I love her so very much!!!

While it was wonderful to have a lot of family rotating through, it was also nice to have our little apartment back to ourselves (and to finally get Carter off of the blow-up mattress in our room and back into his own room).  The night Kelly left (she was our last visitor) Carter said to me, "Mom, I really liked having everyone come visit but I'm excited to just have our little family together again."  Made mama happy.  :)  We've been doing well on our own.  I've had to call on Chels a little more but I figure once I wear my welcome out with her I'll move onto Katie and Kim... forewarned, ladies!!!  :)

The Shaving of the Head~ Colorado Springs Children Photographer

Carter's hair was falling out for about 5 days before we finally convinced him to shave it.  We wanted to wait until he was ready.  It was his last thread of being a "normal" kid and we wanted to respect that.  His hair was EVERYWHERE (woot woot, Dashboard!)!!  I told people it was like having an Alaskan husky in the middle of an Arizona summer.  It was crazy.  It was on his clothes, his pillow, the couch, the floor, the table, the counter, the toilet, on Bryan, me, Addilyn, and Preslee.  Honestly, everywhere.

When he finally decided to shave it, I don't think Bryan or I were quite prepared for just how "cancer patient" he would look.  Carter has always had a TON of hair.  Nice thick mousy-brown-with-a-touch-of-strawberry hair.  The oncologist told us that more than likely it would not fall out for a bit longer.  But, as they tell us ALL the time, "Every child is different".  He does still have some peach fuzz for sure.  But you look at him and think, "Oh, that poor little boy has cancer!"  He has received tons of awesome hats from friends all over the country.  He has also received so much support.  Now, not everyone can shave their heads.  People need to keep their jobs and Bry and I are the very first to understand that.  We in no way expected anyone to shave their heads.  But we love that he received support from those who felt shaving their heads was an option.

 

Now, I'm not gunna lie. This was hard for me. I had to excuse myself for a few minutes to have a good cry. I mean, try to envision your 5 year old bald. Going through this. It sucks. But he's so darn brave, it's hard to stay sad for long.  Plus, you can't live your life in complete tears.   Every few days I'll just go lock myself in the bathroom and have a good, long cry.  But then I pull myself together, thank the dear Lord for all the blessings I have in my life, and move on with my day.  I think crying is good for everyone.  I really do.  I know it helps me.  And usually it's something small that sets me off.  Something that wouldn't normally even phase me.

All in all, everything ended up good.  He refused to touch it when we were done shaving it.  But, once he saw it in the mirror, he thought it was hysterical that there was green still on his scalp.  I'm so glad he found the humor in all of it. That is something that we are really trying to instill in Carter.  That there is ALWAYS silver lining.  Always.  Sometimes you have to look super hard. But it's there.  Now he really likes it and doesn't want his hair to grow back until after Halloween because he wants to be Yoda for Halloween and he doesn't have any hair. :)  Love that kid!!

'Roids~ Colorado Springs Cancer Photographer

One of the less awesome things about Carter having eight gazillion rounds of chemo are the steroids.  They are lame to the O.  That's right.  Lame-o!  They make him SOOOO hungry.  And I mean STARVING!  This is what he eats on an average day: 6:30am: Wakes up to pee and BEGS us for a snack.  About 7:00 we finally give in and he has a cheese stick or a banana.

7:30am: Breakfast: 2 packs of instant oatmeal, a heafy bowl of cottage cheese, a big bowl of some kind of cereal, 2 glasses of milk.  (He use to eat 2 things of oatmeal and 1/2 a glass of milk)

By 8:15 he's asking when snack time is... not kidding.

10:00: Snack: He'll have some fishies or a cheese stick and then beg for more.  We tell him if he wants more he can have some cucumbers or carrots.  1/2 the time he will; 1.2 the time he won't.  (He use to only eat a snack about 1/2 the time.)

10:20: "When's it going to be lunch time?  I'm STARVING!"  Really?  Wow.

12:00: Lunch:  an entire turkey sandwich, a cheese stick, 1/4 of an apple, some cucumber slices, a gogurt, and some crackers.  (He use to have 1/2 a turkey sandwich and a gogurt.)

12:30 "You know what sounds SOOOOO good, Mom?  A CHEESE STICK!!"  No.

12:45:  "When's snack time?  This medicine makes me SOOOO hungry!"

3:00: Snack: a banana or some other healthy snack.

4:30:  BEGGING for more food.  ("I don't think I can wait for dinner!")

5:30: Dinner.  He eats almost as much as me.  Goes back for seconds if I don't give him enough.  Makes sure before he leaves the dinner table that he'll be able to have a snack before he brushes his teeth for the night.

7:30: Heading for bed:  "Dad, I'm seriously SOOOO hungry.  Can I PLEASE have something to eat?  I'll brush my teeth again!  PUUUU-LEASSEEE!?!?"

11:00ish: Usually wakes up to pee and informs us that he is literally starving to death.  Seriously?  He's got to be kidding, right?  Nope.  All he wants is.... that's right: a cheese stick!  We send him back to bed and assure him that breakfast will come quickly.

He's gained 6 pounds.  (The next part of chemo kills the appetite so it will all go away.)

Aside form the food aspect (I feel like I have a teenage son!) he has SERIOUS muscle weakening.  It sucks.  Bad.  He struggles (and I mean STRUGGLES) getting up and down.  It breaks my heart.  When he gets up off the ground he has to walk his hands up his legs to get completely up.  He trips a lot.  Stairs are near impossible.  I hate watching it.  He's literally deteriorating.  This is not a super common side affect and thank heavens when he's done with this round of the steroids (it's over TODAY!!) they'll be much less often for the rest of the chemo.

These steroids make you retain water.  And crave salt (for him it's cheese).  Bad combo.  But, it's totally killed his sweet tooth.  Hopefully that sticks.  :)

He pees ALL the time.  ALL.  THE.  TIME.

Most kids on these steroids are seriously cranky.  They are little Jeckyl/Hyde type personalities.  The doctor warned us that we would nearly despise our little sweetie by the time Induction (the first section of chemo) ended.  Carter is a little more touchy but we have been very lucky to not see this.  He definitely wants to spend more time alone rather than playing with Addilyn but he's not mean, which is what we were ready for.

"I have Remission!!"~ Colorado Springs Children Photographer

So many great things have happened since Friday afternoon... starting with us coming home from the hospital!!  YEAH!!!  I was so very excited about being together as a family.  The girls were beyond thrilled when Carter walked through the door. (Although they were not beyond thrilled that he went straight in to take a nap.)  Addi hugged him at least three times (lifting her foot each time) and Pres climbed onto the couch and patted him on the head saying "caca" over and over.  (I know... funny that she calls him that, huh?) The warm and fuzzy feeling didn't last long, though.  When we got into our room so he could lay down on the blow up bed which he will be calling home for the next few weeks while we have family here helping out, I took off his jacket only to find... BLOOD!  That's right, folks, blood coming from the end of his newly installed PICC line.  SERIOUSLY!?!?  I immediately called the doctor and left a message.  Then I called the hospital and talked to his nurse who told me to call the at- home nursing agency.  I called them and the nurse told me that I would have to flush it (run saline through it) to make sure it didn't clot.  She would be more than happy to do it but she has a cold.  No one with so much as the sniffles is allowed within 100 yards of Carter so it was up to me.  They rushed some saline and heparin over to me and while I was on the phone with the nurse I flushed it.  As I started to do this blood started coming out from where the PICC line connects to the connector thingy that I connect meds to (pretty sure that's the scientific name for it).  Awesome.  The nurse on the phone told me to try unscrewing it and putting it back on.  Maybe it was just not screwed on correctly (you know when you are trying t put the lid back on the peanut butter and it's just not going...?).  Thank heavens that was the problem.  If that hadn't fixed it, back to the hospital we would have trotted.  *sigh*

But, since then, it's been smooth sailing.  Chemo on Monday was a cinch.  Meds since then have been fine (as long as I don't overthink that the PICC line in which we are shoving meds goes straight to his heart).  And Carter?  Well, he is a CHAMP!  Man alive, that kid has been more of a trooper than I EVER thought he would be.  No complaining from him.  None.  I'm so very proud of him.

This is what a typical day looks like for him concerning meds:  (not using actual names of the medicines because that's just too much info for a blog.)

7:00am -->  Anti bacteria med through the PICC line

8:00am--> Steroid, weekend drug (on the weekends of course), and anti-nausia med. (all oral)

1:30pm --> Anti-fungal drug through the PICC line.

3:00pm--> Anti bacterial med through the PICC line.

7:00pm--> Steroid and weekend drug. (Both oral)

11:00pm--> Anti bacterial med through the PICC line.

The drugs will slow down soon.  After induction he doesn't have the steroid as much (I will have an entire post about the steroid because it's kinda funny) and in a week or so he'll be off the antifungal and antibateria ones.  But I'm sure he'll work some other drugs into the mix at some point.  :)

This morning we got a call from Carter's oncologist.  She said she couldn't wait until Monday (our next chemo appointment) to tell us some exciting news.  Carter's cancer is all but GONE!  He is technially in remission!!!  All this really means is that the prognosis is even BETTER than before!!!  He still has the three years of chemotherapy, he'll still lose his hair, he'll still puke his guts out, he's still got a SUPER crappy immune system... BUT HE'LL BE OK!!!!  I seriously would have kissed her if the concersation had been in person!  We are beyond thrilled and Carter called all four of his grandparents to tell them, "I have remission!!!"  I am excited to talk more to Dr Reeves about this when we see her in a few days and while I know the battle is far from over, I feel much more at ease with things.  God is good and the first thing we did when we got off the phone was kneel in prayer and thank him prefusely.  (Ok, actually we went and celebrated with milkshakes and THEN prayed.

Family~ Colorado Springs Children Photographer

We really try to have the girls come in and see Carter at the hospital... problem is that Preslee is a walking tornado (love her dearly) and Addilyn's interest isn't held for longer than 5 minutes.  The entire visit (which on average last for 10-15 minutes) is spent following Pres around and stopping her from messing with the IV tower or stopping her from yanking things off the counter, or telling Addilyn that she needs to play the game on the iPad by herself or telling her to leave Carter's brand new things alone.... it's exhausting.

BUT... we feel it's important for them (especially Addi) to see Carter here in order to better understand that he is really really sick.  She keeps saying "When Carter comes home he's going to be all better!"  Nope.  Not the case.  Three years is a long time to a three year old... in fact it's a lifetime.  Carter also kind of shuts down when too many people are here at one time.  I think it's mostly Preslee because she's SO all over the place.  Often times he'll lay down and pull his blanket over his head.  Poor thing.