Mommarazzi

Praises and Pictures.

2012-02-01T21:28:00.006-06:00

A few praises from the past two plus weeks...

Jackson's scans came back CLEAR! He has had one full year of clear scans which is HUGE. Thank you for all the prayers and good thoughts!

Also, the dermatologist called and told us that the second shave of his foot was successful...they got every bit of the mole.

And.......these sweet things made their appearance.

Landry and Lyla, born 1/21/12, twelve minutes apart.

{Last minute belly shot. 37 weeks.}

{Last picture as a family of four.}

{♥}

{Brayden was more interested in his train at first but he loves his babies.}

{Jackson on the other hand has been in love with his baby brother and sister from the start.}

{It's gonna be crazy at our house...but so worth it.}

Go to www.marieq.com/blog to see a couple of shots from our newborn pictures today!

I didn't mean to fall off the face of the Earth.

2012-01-02T14:15:00.004-06:00

It may have had something to do with raising/chasing two and growing/preparing for two :)

Either way, I'm back and hopefully I can continue to keep up with this blog. I love to have it as a way to look back at what my babies were doing and saying at certain points in their lives, and it's also a wonderful way to keep people updated on Jackson.

Speaking of, his scans are this Wednesday the 4th. If these are clear, that will mark one year of clear scans which is a HUGE milestone in his remission! Please pray with us that there is zero evidence of cancer in his sweet body.

When I last blogged, we were still waiting for the 2nd pathology results from the mole removed from his foot. We didn't get word until the middle of October, which was an excruciating wait, and the 2nd pathologist felt like it was NOT cancerous. We were incredibly relieved but our dermatologist felt that we couldn't be too careful considering his history. She recommended that we have more tissue removed from his foot to ensure that it was all gone (the original biopsy of his foot indicated that some was left behind). We had the additional tissue removed this past Friday and we should hear back from the dermatologist in the next few days. This has left us in a bit of a limbo with his foot, but ultimately we feel like that it's not as serious of a situation as originally thought.

2011 was an amazing year for us...not without some hiccups for sure, but overall it was one for the record books.

Jackson completed his treatment plan in January and had clear scans ALL YEAR. So thankful!

We enjoyed getting back to normal in the Spring and spent lots of time outdoors and visiting family and friends. We did a lot of fun outings to make up for our months of lockdown!

In May we went on our biggest outing...Jackson's Make-A-Wish trip!! Still need to blog about that. We had some major issues with our digital picture storage...hopefully all the kinks have been figured out and my husband will stop lecturing me on the subject ;)

In June, just a couple of days after getting back from our trip, we found out we were expecting. And a couple of weeks later, we went to my first appointment and were SHOCKED to find out there were TWO babies in there!! The next few weeks were spent on the couch for me...thankfully I wasn't sick too long because I was miserable!

In August Ryan turned the big 3-0 and in September the boys turned 2 and 4! September also brought some scary news about Jackson's foot...and we found out that the babies were a He and a She! We also celebrated the boys birthdays and had our Heroes for Children 5k on the same day (another thing I need to blog about!).

The fall was mostly spent preparing for the babies...we had our house on the market during the spring, but took it off once we knew we were growing by two. We just didn't want to rush a sale, possibly lose money because the market wasn't so great and then settle on a house we weren't in love with because we had a deadline. So we have purged, cleaned, repaired, etc for a few months and we are almost ready!

We had a great holiday season with Thanksgiving and Christmas--so nice to not be locked down during the holidays!

12 things I hope to accomplish in 2012:

1. SURVIVE! Adding two babies to the mix will be mostly exciting, but there are sure to be crazy, stressful days!

2. Grow spiritually, pray as a family more and get more involved at church.

3. Learn how to use my Christmas gift--an embroidery machine!

4. Spend quality time with each child, each day. Also--have "Jackson and Brayden" days occasionally so they don't feel overshadowed.

5. Take the boys to my Grandpa's farm as much as possible. And the park--makes them SO happy.

6. Actually run in the Heroes for Children 5k this September.

7. Organize my pictures (digitally and the ones already printed) and print pictures occasionally and start Project Life.

8. Stay up-to-date with my blog and go back and blog important events.

9. Keep up with the organization and purged spaces that we worked so hard to achieve!

10.Spend time with friends--without kids--at least once a month. Same goes for time with my husband!

11.Be a better Christian, wife, mother, daughter and friend.

12.Continue to teach Jackson and Brayden the importance of giving back, through our hospital and as other opportunities present themselves.

Hopefully I can look back and feel good about my progress throughout the year! All bets are off if the twins are colicky though!!

Happy New Year!

It's the little things.

2011-09-29T20:57:00.004-05:00

Today was not an easy day.

A crabby (but still cute) two year old and a hormonal Momma don't mix well. Add in the waiting and it's a mess.

And did I mention the hormones?? They're doubled, you know.

At least that's my excuse.

So by the time soccer practice rolled around this evening, Momma was tired.

We dropped the cute crab off with my mom and then headed out. Turned up the music and sang Jack's favorite Incubus song.

A little fresh air and watching my lil guy run around happily was all Momma needed.

Instant mood booster.

{Ready to go!}

{Check out that form!}

{A flower for Momma mid-practice. Not gonna lie, this made my night.}

{I will never, ever get tired of that crazy hair and those gorgeous lashes.}

{Goin' for the goal!}

{Worn out.}

{This is as good as it gets with these two!}

{Love my sweaty, dirty, red-faced soccer player.}

On the way home, I was telling Jackson how proud I was that he tried hard and just enjoyed himself. He said "I'm proud of myself, too." :)

When I told him I loved my flower and thanked him, he told me "That's because I love you, Mommy."

Like I said, instant mood booster.

Who can be grouchy after that? The little things can erase all the ugly from the day so easily.

And thankfully, the cute crab had a good time with Gram and PaPaw and was happy as could be when we got him.

Love my boys so much.

Even when they make me crazy.

No news.

2011-09-28T19:36:00.005-05:00

Today we went for our surgical consult as recommended by our dermatologist following the pathology reports that rocked our world last week.

Basically, once we got there it was clear that our surgeon (who we love and we can tell loves Jack) had not received the pathology as planned so he didn't really have a good idea of what we are dealing with.

Once the report got into his hands via fax and he had a quick look at it, he decided that he is going seek a second opinion from a pathologist that he uses and trusts before making a decision about surgery.

If it comes back as a melanoma, then he will perform surgery and that will most likely include a skin graft. If it comes back benign, he does not think we would do surgery at this time (our dermatologist originally told us that we could expect surgery no matter what), but rather wait and see if anything else develops.

Overall, we don't know anything now that we didn't know before the appointment and it did slightly feel like a waste of time, but our surgeon does feel optimistic that the original pathologist just doesn't have a lot of experience with children's moles and their characteristics and may have mis-read it.

This obviously would be great news and we are more hopeful after hearing him say that.

But...at this point it's simply his opinion and not anything concrete or definite so we are still guarded.

Very, very guarded.

This second pathology opinion will take a few days so we are looking at next week for sure until we know anything.

So, we wait some more. Waiting kind of became a hobby this time last year when Jackson's original tumor made it's rounds across the country.

But, I know that God has a plan and somehow this season of waiting, uncertainty and pure fear has a place in it.

Jackson keeps me stocked up in hugs, kisses and foot massages while Brayden makes me laugh constantly so I am not too bad off.

Jackson's scans are still set for Monday. Please pray for 100% clear scans!

Here are some pictures from today and the past few days.

{Waiting patiently for the doctor.}

{Jack got bored and decided to check the twins' 'heartbeeps'. I really dressed up for the appointment.}

{Speaking of the twins!}

{We stopped at Target after the appt to use a birthday giftcard that was burning a hole in Jack's pocket. Such happy boys! They love their Spiderman.}

{We also did this at Target. So much fun to go down the pink aisles! Still very foreign but I bet I'll get comfortable pretty quick.}

{Puzzles in bed the other night.}

{Making sandwiches. I promise they have pants!}

{Cuddlebugs.}

{Before MDO on Tuesday. Looking so big.}

Déjà vu.

2011-09-21T13:59:00.005-05:00

I need to be writing Jackson's birthday letter (11 days late), but instead I'm updating on his health.

Last spring, I noticed a spot on his foot. We kept an eye on it and eventually called the oncology office. They weren't too concerned, but recommended we visit our pediatrician if we felt the need.

We go see our pediatrician in July. He looked at the mole and said it looked normal to him, but to be on the safe side he suggested we make an appointment with our dermatologist.

We couldn't get in with our dermatologist until late August and when our appointment rolled around, she wasn't concerned. The mole was on the small side, 2mm, and looked completely normal. She said she would remove the mole if it would make me feel better but that she didn't think it was necessary.

I decided, selfishly, that I wanted it off for peace of mind.

We made the appointment for the mole removal for Sept 15th, right after my big gender ultrasound. The offices are right down the hall from each other, so once we got our sono pics (of a boy AND a girl!) we made our way to her office and prepared for the process.

We were not worried--we had numbed the area with the same cream we had always used for his port accesses, and I recently had a mole removed without that cream and felt little discomfort so we thought the removal would be smooth.

NOT.

Poor Jackson almost came off of the table in pain. It broke my heart and I felt so awful. I questioned myself and my motives for getting the mole removed for the next couple of days.

***Pausing the story for a moment to say this: Mother's intuition is REAL. Listen to your gut. Don't waste time questioning yourself or worrying that nurses and doctors will think you are neurotic. A mother knows her child better than anyone and I swear it's only by God's grace that I noticed his tumor in May 2010 and paid attention to this teeny mole. I KNEW that mole was bad news. But when three separate medical professionals (that I admire and respect, not slamming them at all) did not show much concern (and rightly so--it did exhibit normal characteristics), I started questioning myself, even though my gut kept telling me to keep pushing. Bottom line, listen to your gut and don't look back or waste precious time worrying about what medical professionals think about your mental state. You are your child's best advocate and it's your job to ask questions, research and never stop pushing for answers. That is the best advice I could ever give someone who is starting down this path.***

When we left the office after the removal was over, we loaded up on candy to console Jackson and headed home.

We were not the slightest bit worried--no one else had been, so we truly expected a phone call saying all was clear.

Fast forward to yesterday afternoon.

About 3:30, the boys and I were sitting down with juiceboxes and snacks. I realized that I had not gotten that call, and I decided to check in to see if the pathology was back.

After about 8 minutes on hold, I was told that pathology was back but that I would have to be called back later.

Uhhhh. Cue freak out.

I went from not being nervous at all to being level 15 nervous.

A very long hour and a half later, the dermatologist herself called me back.

When she sighed before she started talking, I knew it wasn't good.

When she apologized and told me she'd never question me again about taking a mole off of Jackson, I knew it really wasn't good.

We talked for an hour last night and again this morning for half an hour.

The pathologists diagnosed the mole as a "severely atypical mole with indeterminate biologic position and behavior". Basically, an very abnormal mole that they can't say what it will or won't do. In their report, they say that they are "considering melanoma, but not favoring it" as a more definitive diagnosis.

The main pathologist said that the mole showed several cancerous characteristics, but also showed several signs that made it him believe that it was benign. This is where the Déjà vu kicked in--that is exactly what happened after Jackson's original biopsy in May 2010. They knew it was a tumor--but it took a few days to determine what kind of tumor. It had both benign and malignant tendencies.

Since this mole is so severely atypical, the pathologist recommended that it be treated as if it was in fact cancerous.

Right now, we have a surgical consult next Wednesday with the surgeon that we have previously used for Jackson's biopsy and port insertion/removal. Most likely, according to the dermatologist, he will remove more tissue on Jack's foot to make sure that all cells are normal. We won't know how much tissue that will be until we meet with him. The dermatologist mentioned last night that it is possible that he could need a skin graft if a large amount of tissue was removed. The foot just doesn't have a lot of extra to pull from.

Another concern is why. Did the chemo and radiation cause this (a huge side effect of treatment is secondary cancers)? Or is his little body just genetically pre-dispositioned to create atypical, cancerous cells?

I don't know which one to pray for.

So.

We kinda feel like we got pushed off the cruise ship to the bottom of the ocean. We were floating along happily, being normal and loving life...then bam. Here we are again, treading water and gasping for air.

We may be struggling, but our sweet boys know no difference between yesterday and today, so normal we must be.

We have a BIG day Saturday--the Heroes for Children 5k and the boys birthday party--and nothing will derail those plans! The boys are way too excited.

If you want to support The J Team in our endeavors to raise money to support families fighting childhood cancer, you can sign up HERE to be a virtual runner (enter in The J Team), or you can simply donate to The J Team HERE (click on 'Make a Gift'). All funds raised go directly to aide families just like ours.

In addition to this new development, Jackson's three month scans are on Monday, October 3rd.

Please pray that Jack's scans are clear and show no signs of cancer.
Please pray that the surgery can be scheduled soon.
Please pray that minimal tissue is needed.
Please pray that the tissue is normal and NOTHING is cancerous.
Please pray for complete and total, life-long healing.
Please pray that this is just a bump in the road and not our new road.

So incredibly thankful for all of the support, love and prayers.

On your 2nd birthday.

2011-09-04T17:24:00.003-05:00

Brayden,

You are my soul. We are alike in so many ways. From our eyes to our love of chocolate milk, you take after me and that makes me so happy. Before you, I didn't know a little boy could be like his Momma.

I worried alot that you would be overshadowed by Jackson's diagnosis. That you would get lost in the many doctor appointments and hospital stays.

That the fear of his future would hurt your present.

How silly I was. You will NOT let that happen. You demand to be seen, heard and loved on. I am so thankful for your spirited, hilarious, active personality.

You were just the distraction we all needed--Momma, Daddy and Jackson--during those really rough times. You are such an important part of our family and I hope you always know how loved you are and how precious you are to us.

You still aren't a good eater, but you love you some milk.

You are counting...forwards and backwards. Although we only get to a couple of numbers either way, it's insanely cute and you are very proud of yourself. You always proclaim "I counting!"

You are my little charming ball of mischief...you are always into something and you cheerfully say "saw-ee" when you get into trouble.

You want a kiss for every boo-boo and seem satisfied that it does actually make it better.

You love everything your big brother loves, but you still hold a special place in your lil heart for Buzz. Your favorite toy right now is the Toy Story 3 case. You try to sleep with it and it will keep you entertained for at least 20 minutes...just opening it and closing it, over and over.

You have the best silly face ever.

You love to watch "foofies", especially if it has Buzz in it. Or good dance music.

You are tall, skinny and so dark complected. My tall dark and handsome lil man.

You love to dance, really love to dance. Your moves are pretty sweet.

You have a huge vocabulary and it is increasing by the day, sometimes by the hour.

You have been desperate to go outside all summer. We had to stay in a lot this summer (105+ by noon, plus a sick Momma) but we will make up for it when it cools off.

You love to play monsters with Daddy and Jackson. You say "I 'cared! Body hide!" (Translation: I scared! Everybody hide!)

You love to say "MY Mommy!" or "MY Daddy!" just to irritate your big brother. And then you take it further...when he says "No, MY Mommy!" you always say "Nope!!".

You have the cutest little lisp.

You started saying "I said puweaseeee!" when you ask for something and we don't move fast enough.

You have a signature dance move...we call it "The Shiggle". You do it and say "I shigglin!".

You love to buckle yourself into your high chair...you get so excited. You throw your hands in the air and say "I did it!".

We love you so much lil man! You bring us so much joy, happiness and laughter.

Happy 2nd Birthday!

Love you lotsa lotsa much,
Mommy

Flashback Friday: Thomas 2010

2011-09-02T09:29:00.001-05:00

In early March 2010 we had our first little family of four getaway. Thomas the Tank Engine was making an appearance about an hour away so we decided to make a weekend of it.

I'm so glad we did because that ended up being our only getaway type adventure until a year later...we had plans for similar things during the upcoming summer but of course that didn't work out!

We fit a lot in during our short stay and it was such a blast. It really was a nearly perfect trip. One of those times where everyone was just happy. I'm sure there were toddler meltdowns and what not, but it's been long enough ago that I've forgotten ;)

{On the shuttle to get to Thomas!}

{So, so excited!}

{Giving the conductor our tickets.}

{Enjoying the scenery during the train ride.}

{Thomas!}

{So much to see!}

{Happy to pose with the trains.}

{An accidental black and white, but precious just the same.}

{On the shuttle back to the car--best smile of the day!!}

{Proof Brayden and I were there.}

{Quick stop for lunch.}

{Then naps.}

{Two little monkeys jumping on the bed.}

{We walked around our hotel--The Gaylord Texan--for awhile.}

{There was lots to see including some really cool trains.}

{We ate at RainForest Cafe. Jack was not a fan of the noises...or the frog.}

{And then swimming! It was Brayden's first time in a pool.}

{So happy!!}

{Up next...night time wrestling.}

{And tricks only Daddy does!}

{Learning to love it like big brother.}

{Some late night dessert!}

{And some snuggles before bed...look at that sweet belly!}

A wonderfully rainy, happy, full day. So grateful for those sweet memories!

A year ago.

2011-08-31T17:19:00.002-05:00

Jackson's big surgery was a year ago today. In some ways it has flown by, but it other ways it seems like a lifetime has passed.

The actual surgery was a huge success. I will never forget the pure gratitude I felt towards God and those three surgeons.

We went into surgery thinking that was our last step. There was a small chance of a few radiation treatments, but it wasn't talked about much and the overall feeling was that all would be well after surgery.

And we were READY. We were ready for our pre-cancer life back, ready to not be isolated, ready to get back to normal.

But then that initial pathology report came back a couple of days later. The tumor was angrier than earlier thought, a higher-grade than guessed pre-surgery.

I will never forget our beloved Dr. W bursting through our hospital door during naptime, already mid-conversation about the findings. When I think about that moment, something another cancer parent said comes to mind..."Everything was fine. Until that split second that it wasn't."

Dr. W is probably the smartest person I have ever met and he does not beat around the bush. That conversation wasn't fun...we were tired, upset, terrified and truly surprised.

We thought it was over.

And we were thrown back into the chemo game, only this time it was much more intense. The 'few' radiation treatments turned into 20.

But, as hard as it all was, we've been lucky. Today I look at him and see a healthy little boy with a head full of (unruly) hair.

I am so thankful to be on this side of surgery, chemo, radiation. I feel like it's harder emotionally now than it was then. The adrenaline has worn off I guess.

Thankfully, Jackson is blissfully unaware of any silly anniversary and is as happy, wild, loving and inquisitive as ever.

{The night before surgery. Momma needed to pack for a week+ in the hospital, bathe babies and generally clean up. So of course making matching shirts was at the top of the must-do list.}

{Ready.}

{Waiting, waiting, more waiting.}

{Uncle Wes keeping Brayden company.}

{Sleeping off anesthesia with Batman.}

{Daddy trying to get our sweet, tired, over-it guy to smile.}

First day.

2011-08-30T21:01:00.005-05:00

Today was the boys' first day of Mother's Day Out. They were so excited!

Jackson went to MDO for two years, one of those years it was a necessity because I was still working. Since I stopped working right before Brayden was born, the second year of MDO was a nice time to bond one-on-one with Brayden and a really good opportunity for social development for Jack.

We missed the last part of Jack's second year when he got sick and of course neither of the boys went last year while Jack was undergoing treatment.

We're starting back slowly, only one day a week. I'm a little nervous because Jack got really sick when he first started MDO so I'm afraid Brayden will too. Little kids have lots of germs :) And of course I'm worried about Jack's immune system. Even though it's been six months since he stopped treatment, his counts have stayed fairly low. They've both been minimally exposed to other kids in the past year once we were allowed off of isolation--only Sunday school and small playdates.

They both had a great day! Neither one of them seemed to notice when we left them this morning and they were both smiling at pick up time.

Jackson has been singing "If You're Happy and You Know It", talking about the mouse book and asking if bees get nectar from flowers...so I would say he had a day full of fun and learning!

Brayden's teacher commented on how energetic he was ;) He is definitely an on-the-go guy. Every time I ask him if he had a good day at school, he just smiles so I think it was a happy day for him.

I'm so glad they had fun, but I'm also glad that they were pretty happy to see me at pick up time :)

We met Brady for first-day ice cream. They had a blast and by the time we were leaving, I'm sure everyone in the place was happy!! They are rowdy when they're together.

{Early morning bath.}

{Ready to go!}

{So excited!!}

{Such a big boy!!}

{Out the door with new Superhero backpacks.}

{Only green--mint choc chip--ice cream will do for Jackson!!}

{Just let us eat our ice cream Momma!!}

We love our Mother's Day Out program...the teachers are wonderful and we're just overall really happy with how everything runs. We are looking forward to a great "school" year!!

Interview.

2011-08-23T14:32:00.000-05:00

Today I sat Jackson down and asked him some questions. He is at such a fun age...he is forming his own opinions, likes and dislikes. I really enjoy just listening to him talk and I want to remember how his mind works at this age.

I tried to put down exactly what he said. I may have bribed him with M&M's. Also, each time he said "Ninja Turtles", he sang the song. He currently sings that song approximately 876 times a day ;)

What is your name? Jackson Rex Spiderman from Waxahachie. Can I have candy now?

How old are you? Free! (3 for just 2 1/2 more weeks!)

What is your favorite color? Orange. And red. Blue. Well, that's Daddy's favorite. And yellow. Gring.

Who is your best friend? Jadon. Austin. Cole. Brayden. Ellie. Can I have candy now?

What is your favorite animal? A goose. (????)

What do you want to be when you grow-up? Batman! Spiderman! Or a Fireman.

What is your favorite Movie? Spiderman. Lightning (Cars). And Ninja Turtles.

What is your favorite book? Spiderman. Llama Llama Mad at Momma. Where The Wild Things Are. Can I have candy now?

What makes you happy? Playing with my Ninja Turtles. Watching my Ninja Turtle movie.

What makes you sad? Brayden does. Because he's a tooter. (Hahahaaa!!)

What is your favorite food to eat? Cheese and meat and crackers. And milk.

What is your favorite song to sing? Spiderman. The girl song, it's called the girlfriend one. (I have no clue!)

What's your favorite toy? My Ninja Turtles. Captain America.

What games do you like to play? My new game. The fishies one.

What do you want to be for Halloween? Batman! (Seriously shocked that he didn't say a Ninja Turtle!)

What's your favorite tv show? Caillou. (This is a new obsession!)

What do you like to do? Make crafts with Mommy.

Where's your favorite place to go in the car? The park.

I love my crazy, sweet, energetic, Superhero-obsessed lil man. He is changing every single day and I know one day I will miss these sweet times so very much.

So thankful to be his Momma.

I don't want to forget {part three}

2011-08-17T12:57:00.005-05:00

Part one {here}.
Part two {here}.

{Jackson edition}

How, at almost 4 years old, you still clutch onto me in your sleep when I try and lay you down.

How you tell Brayden he needs to "talk right like you" but then you ask to watch "Conan the Librarian".

How you ask to touch my belly and tell the babies you love them no less than five times a day.

How you conquered staying dry at naptime and nighttime before the dreaded number two (happy to say all is now conquered!).

How you were SO excited when Daddy gave you his old Ninja Turtles...they are one of your most prized possessions.

How you are very concerned about the babies kicking Momma..."Babies, don't kick my Momma! That's ug-we!(ugly)".

How you are so excited about your new big boy bed, along with your Green Lantern sheets and SpiderMan blanket.

How you still talk about our trip to "see where Mickey Mouse lives" often.

How you are SO excited to start school (Mother's Day Out) back up after missing last year.

How you love, love, love your brother.

How you rock the rainboots-and-undies look.

How you have hair again...long enough for Mommy to run her fingers through.

{Brayden edition}

How you say "O-tape" instead of "Okay".

How you show off your silly face.

How you dance your little heart out, then shyly look over your shoulder to see if we're watching.

How you say "Love you too!" so enthusiastically when I say 'I love you'...it started out as "Too, Mommy, too!"

How you love to touch my face when you drink your milk (what you called "nu" for ahwile).

How you smile.

How you say "Hold hands?" and reach for your brother's hand.

How you love Buzz Lightyear.

How you say "Me too!" when you see someone eating/drinking/doing something you want a part of.

How you require a monkey leash backpack anytime we are in a public place.

How you say "No be 2!" when I ask you how old you will be next month...we are both in denial that you are that old.

How you are your brother's shadow...but you still manage to make your own mark.

Hibernation.

2011-08-15T16:05:00.002-05:00

I feel like I've been hibernating for the last 6 weeks! The first few weeks after finding out we have 2 babes on the way were rough. I held the couch down, my house was neglected and the boys were restless. Thankfully, the last couple of weeks have been much better.

Not much has been going on but I'm going to get caught up real quick, list style!

*We go back Thursday to check on these sweet babies. Can't wait to see how they've grown since last time.

*Brayden will be 2 soon and just six days later, Jackson will be 4! Crazy.

*For those that knew our house was on the market, we took it off. The market stinks and it is way too stressful to being doing right now. So we've been spending lots of time organizing, improving and utilizing every last inch of our house! We'll try again once the babies are here.

*Jack's next set of scans are October 3. They are doing a longer, more detailed MRI this time. They decided to not do the PET scan (he hasn't had one since January and was due for one this time) in order to limit his radiation exposure. They felt like it wasn't necessary since he has had completely clear scans since January. I have mixed feelings--glad to keep him from the radiation exposure (out of the scans Jackson gets, the PET has the most radiation) but nervous about missing any rogue cancerous cells that could be anywhere in his body. The PET gives a picture of his whole body and even though the oncologists think his type of cancer would reoccur first locally (where it was before), cancer doesn't play by the rules so that full-body picture does give me a little peace.

*It's time again! The Heroes for Children 5k is Saturday, September 24th. The J Team will be there and we hope you will join us!!
Here is the link to register for the 5k as a member of The J Team: http://hfc.convio.net/site/TR/HFC5KampFunRun/General?fr_id=1040&pg=entry
Click on 'Join a Team' on the top left and search for The J Team.
If you would like to support The J Team but cannot participate in the 5k, here is the link to donate: http://hfc.convio.net/site/TR/SampleTR/General?fr_id=1040&pg=pfind
Click 'Search for a Team', enter The J Team. Once you get to The J Team's page, click on 'Make a Gift' on the right hand side.
Every dollar raised--through donations or registration for the 5k--goes to families in Texas battling childhood cancer. Heroes for Children is an outstanding organization started by two mothers who lost their daughters to cancer. They not only provide financial assistance, but social assistance as well. It's nice to be able to meet other families who understand.
If you are planning on participating in the 5k, we are wearing our J Team shirts from last year. If you would like to order one, please leave a comment here or on Facebook and I will be in contact with you. This is an awesome event that we are SO looking forward to. I will be huge and I will probably be very emotional and hormonal--fair warning ;) We appreciate your support so much!!!

Back soon with more updates and pictures!

Fun, fun and more fun.

2011-06-28T12:52:00.007-05:00

Since my last update, we have been pretty busy!

We decided it was time for the boys to have some pets...

{Hi tishies!!}

We spent some time with family...

{My sweet grandparents whose birthdays are a week apart.}

Jackson showed off his high beam skills...

{Always a good time!}

We were a lil lazy...

{We may or may not have taken Daddy lunch like this one day.}

We went on the BEST vacation ever! More pics to come...

{Ready to go!!}

{Where Mickey Mouse lives!!}

We had swim lessons for the first time ever...

{Jackson swimmin' like a fish!}

{He had so much fun and did SO awesome!}

We started Tball! This has been an adventure...

{So handsome!!}

{There was a lot of this goin' on.}

{Lots of fun!}

We went to a very special Beads of Courage event, Celebration of Courage...

{Jackson's picture during the slideshow.}

{The kids were asked beforehand to choose their "dream bead". Jackson loves his Spiderman dream bead!!}

We got some pretty BIG news once we were home from our once-in-a-lifetime trip. I just couldn't knock the after-vacation blues and extra tiredness, so I took a pregnancy test and it practically screamed POSITIVE at me!

{Already rockin' a lil bump...let's blame it on the third pregnancy and flowy dress/belt combo. Or...}

{The fact that it's TWINS!}{He looks scared but he's excited! And maybe a lil scared ha!}

We were SHOCKED. Very, very shocked. I think we still are. Even though I had had random thoughts about twins once I knew I was pregnant, I brushed it off as nothing. Before he started the sonogram, my doctor said "Well, let's see how many babies there are!" We all kind of laughed and then BAM! Two babies ;)

It is still early so we would appreciate your prayers for a healthy pregnancy and 2 very healthy babies! We feel very blessed. Sometimes a little overwhelmed, but mostly really, really excited! I have been pretty sick so we are hoping that passes ASAP.

Jackson's three month scans are Friday. Please pray that they show ZERO signs of cancer! We would love it if you would join us in wearing green for Jackson again!

The first weekend.

2011-05-21T11:38:00.008-05:00

Today marks one year since Jackson's diagnosis.

Instead of a long, emotional post about the past year I'm going to share pictures from that first weekend in the hospital (most of which I don't think I have shared before).

It was a tough weekend.

Filled with confusion, shock, lots of late night Googling and hope that someone would walk in and say "WHOOPS! Wrong kid. Y'all can go home now!"

It was hard.

And we had many more times like that over the past year, some even harder than that first weekend.

But a year later....I can hold my baby, listen to his soft breathing as he sleeps, watch him run jump and play, help him learn his letters and answer his constant questions.

And I know we are blessed.

Last night we participated in our local Relay for Life. It was a little overwhelming but I am so glad we did it. Watching Jackson march around wearing a shirt and sash that said "SURVIVOR" is a moment that will forever be burned into my mind.

So...here we are.

A year later.

God is good.

{Playing with PhotoBooth while waiting one of his first scans. One of those 'laugh to keep from crying' moments.}

{Headed down for his port insertion surgery.}

{I loved running my fingers through his hair. Won't be long till I can again!}

Always be joyful. Never stop praying. Be thankful in all circumstances, for this is God's will for you who belong to Christ Jesus.
1 Thess. 5:16-18

The Land.

2011-05-01T22:47:00.000-05:00

{There was t-ball.}

{There was bouncing.}

{Lots of bouncing.}

{There was a visit from the Easter Bunny.}

{There was a sunglasses thief.}

{There was silly string.}

{There was dirt.}

{There was swinging.}

{Lots of swinging.}

{There was lots of ridin' around.}

{There was first-time fishing.}

{And there was a first-catch fish.}

{There were first-fish kisses. It's a tradition...?}

{There was a very large amount of juice boxes consumed.}

{There was a really cute bunny.}

{There was a great fire for hot dogs.}

{There was a canoe ride-another first.}

{There was relaxing.}

{Lots of relaxing.}

{There was night bouncing.}

{There was smores by the fire.}

{There was a silly boy.}

{There was lots of laughing.}

{There was some late night tailgate guitar playing.}

{There was family.}

One year.

2011-04-30T07:39:00.004-05:00

This time a year ago, it was a normal Friday.

Playing at home, visiting Ryan at work, running errands, meeting my mom at Target to browse.

Then home for dinner, baths, more playing and bed.

Normal, right?

Except all I remember is giving Jackson a bath and then laying him down for his after-bath and seeing this...thing.

A lump. A protrusion.

Something that did not belong in my child's body.

Thankfully a friend was already on her way over, so I was able to show someone immediately (literally--minutes after finding it) to see if I was over-reacting.

I'm so glad that she didn't say "I wouldn't worry about it".

Because inside I was already worrying, wondering, praying.

I just knew in that moment that it was something. I had this very visceral reaction to seeing it...I felt nauseous every time I looked at it. Dramatic, yes. But true.

I needed to see and hear someone else's concern. It made me feel justified...that I wasn't freaking out over nothing.

Not that I have done that, ever. (Ha.)

Ryan saw it later that night and agreed we needed to see a doctor asap.

So to Saturday clinic we went early the next morning.

I'm so thankful that God made that lump so obvious to me.

I'm so thankful I followed my instincts instead of telling myself that it was nothing.

I'm so thankful that we had a very sweet doctor that morning that was very proactive and got the ball rolling.

I'm so thankful that a year later I can still hold my child, hear him laugh and listen to him breathe.

It could have all been so very different and I'm very aware of just how blessed we are.

In some ways, this date is more meaningful to me than his diagnosis date. April 30 was the day it all changed, the day that I stopped worrying about the everyday things and started worrying about what was growing in my baby.

The signs that cancer lived here are still evident.

In his fresh, fuzzy duckling head that a year ago was full of thick, unruly hair.

In his scarred body that a year ago was untouched by surgeon's blades.

In his mind that a year ago never worried about having to go back to the hospital.

In my stomach that a year ago didn't drop if he said "Mommy my leg hurts".

No, it's not over.

But.

We still live and breathe. And we are so happy, so thankful.

Today, the boys will bounce in a bouncy house to their heart's content and hunt eggs at a family gathering.

This event was planned today not to commemorate this day that will always be significant to our little family of four, but just as a coincidence.

It's fitting though.

A year ago, I couldn't have imagined all my sweet boy would have to endure and how long the road would be.

And today...I get to watch him just be a kid.

AMAZING.

It's not over.

2011-04-27T20:55:00.002-05:00

Since Jackson has had a couple of sets of clear scans, I get asked alot "When is the party?" or "When can we celebrate?".

Let me be clear: we feel VERY happy and blessed and thankful and elated that Jackson has had not only one set, but two sets of clear scans.

However, we are not yet at the party stage.

Why?

Well, because it's not over.

When will it be over?

Never.

When he is old enough to miss soccer games or Algebra class for his scans instead of his pre-school gymnastics class, it won't be over.

When he is old enough to drive himself to his scan appointments, it won't be over.

When he has to come home from college for scans, it won't be over.

When his wife gets the call before me about the results, it won't be over.

Get the picture?

Just because cancer is gone NOW, doesn't mean it always will be.

That is the very harsh reality of the disease.

So.

While I would LOVE to plan a party, we just aren't there yet. Maybe as time goes by and we (hopefully, prayerfully) get more clear scans we will feel more in a party mood. But at this point, we are still very aware that things could take a drastic turn in July, or October or January.

We have to be constantly vigilant about Jackson's health. Some of the chemo he received will not have a negative effect on his body for 10 or 15 years. To quote our doctor "Right now we worry about the disease and it coming back. In a few years we starting worrying about what we have done to keep it away."

Jack may not have a tumor anymore, but he has a scar from his groin to his knee.

He may not have a port anymore, but he has three scars from insertion and removal, along with permanent needle marks from numerous port accesses.

We may not go to the hospital every week for chemo anymore, but we go every ninety days for multiple scans...and if they see a single bad cell, our lives are upside down again.

For us, and so many other families fighting childhood cancer, it's just never over. I know some people can't understand that, they can't understand why we "can't move on".

And that's ok. Because you know what?

They may not have experienced what we have, or hurt as deeply as we have...so I can guarantee that they haven't loved and lived as fully as we have either.

We remain happy and thankful for every minute of every day. Even the days that aren't full of unicorns and sunshine. Those are good days too. Because they aren't promised to us.

I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.
Romans 8:18

Happy day.

2011-04-25T09:01:00.000-05:00

Tomorrow.

2011-04-19T15:23:00.000-05:00

Last Friday, we met with Dr. R...the same doctor that we met with under very different conditions last May. He did Jack's biopsy on May 17th and he is the one that delivered the news to Ryan on May 21st. He also put Jack's port in on May 24th.

So, last Friday he said we can get that port out anytime!

Tomorrow it is.

Tomorrow always seemed really far away.

When Jack first got his port, we were under the impression that he would have it for years. YEARS.

And, I guess if things had gone differently, he would have.

Tomorrow will be a good day, a happy day. A surgery, yes. But most definitely, a joy filled day.

{Before our appointment Friday, we started our day with some art time.}

{Don't let that coloring book fool you...the counter was his canvas.}

{Jack showing off his soon-to-be-gone port while we waited our turn.}

{The boys have gotten really good at waiting over the last year.}

{They even made up a jumping game...Brayden loves to do whatever Jackson does!}

{A celebratory lunch...at what age do they start taking normal pictures?!?}

We would love your prayers tomorrow!! Check in time is at 6:00, surgery is at 7:30. Alarm is set for 4:30...ack!

The Wishing Place.

2011-04-18T20:21:00.004-05:00

Last Tuesday, we got to go to a very special place.....The Wishing Place! It is so nice to load up in the car and get on the highway with fun destinations instead of the hospital! We were so excited. Jackson knew we were going somewhere fun. He also thought that we were actually getting on a plane right then...but thankfully he took it well when we told him we'd have to wait awhile.

The facility was beautiful, with breathtaking pictures of children enjoying their individualized wishes. Sometimes it is startling to be in these kinds of situations...where pictures of bald, sick children are normal. Not startling because of the pictures...but because we fit in. Even so, it was such an awesome experience. I truly hope Jackson is able to remember these fun times.

{Headed inside with Mrs. Billie, the Director.}

{Once he saw all of the people waiting, he got super shy. I love this picture because you can see his smile of excitement. I think he had just realized that this was all for him.}

{Everyone cheered and clapped as they went through. One of those have-to-hold-back-your-tears moments.}

{We saw this as we walked in.}

{Headed into The Wishing Tower. A super cool, very I Dream of Jeannie (a fav when I was little!) room. Mrs. Billie asked Jackson what his favorite color was and she turned the lights that color. Any guesses?}

{Green! Or...gring!}

{He wasn't sure at first and it took him a bit to warm up. I think it was all a little overwhelming!}

{We watched a video on a HUGE tv about Make-a-Wish. The video talked about how Jackson could wish to be anything, to go anywhere, to have anything he desired! He didn't really get it...but it was still so very special.}

{Jackson was telling Mrs. Billie all of his favorites...and that his wish is to go see where Mickey Mouse lives!!!!}

{On our way out, Jack got to pick a prize from the magic doors!}

{A SpiderMan puzzle! Right up his alley. And he is holding 2 of the 9(!) cars that they gave the boys.}

{On the way home, we saw a few airplanes. Jack kept asking when we get to go on an airplane and see Mickey Mouse!}

We are SO EXCITED!!! Some many families have shared their stories and experiences from their Make-a-Wish trips and every last one is just beyond amazing! We feel so blessed....for so many reasons. The people at Make-a-Wish were wonderfully kind and I am so thankful for the time they took to make this a special day for our little family.

a 3 month lease on life {also known as good news}.

2011-04-11T15:09:00.007-05:00

Our day started at 1:50am when our power went off from the massive storms and tornado warnings we were having. The boys slept through it all thankfully, but we were up, alternating between checking the weather websites (and Facebook because that's where you get the real news) and trying to keep the house cool. No A/C in Texas anytime after March = not fun.

So during all of this my phone just dies. Totally flakes on me. White screen. I was upset because I knew people were expecting texts from me with updates and I was expecting texts from people wearing their green for Jack!

The storms finally settled down enough for us to feel comfortable going back to sleep around 2:45. My alarm was set for 4:15. Needless to say, not much sleep was had.

So we get out of bed and started to get ready. By candlelight and flashlight. I can't count how many seconds I wasted flipping light switches in my sleep-deprived state.

We got ready, then got the boys loaded up and headed for Dallas. Thankfully the worst of the storms had passed at this point so we had an uneventful trip.

We got up to the pediatric area and got all checked in and registered. Jackson was a rockstar during his port access. HIS LAST ONE EVER!!! His nurses were so impressed that he didn't cry or complain.

Then we were taken down to the MRI area. We had to do anesthesia differently this time (gas mask instead of "milk from a sleepy cow" through his port). It usually goes so well when they do it through his port, but we have to hold him down when they do the gas mask. It is AWFUL. I feel like I am suffocating my baby. The whole time he just looked me in the eyes and screamed for me to hold him. Since we are getting his port out, I guess this will be the new normal for scans :(

During his MRI, time actually passed pretty quickly. We were finally able to eat and then we took turns entertaining Brayden.

They brought Jack out about 8:40 and we headed up to recovery. He was asleep for a good little while in recovery. He snuggled on my chest the whole time and I kept thinking that I was so thankful he wouldn't remember me holding him down earlier!

We spent WAY longer than normal in recovery due to an issue with some medication that goes into his port to protect him from getting infections. Someone had accidentally scanned it (and not given it), but we were told that they had not given it (and we knew that he HAD to have it) so it was just a big mix-up and we had to wait that out. Kind of frustrating, but it's reassuring that our nurses care enough to make sure everything is as it should be.

At this point we only had about an hour until our clinic appointment, where we were hoping to have results from the scans. Since my phone was still dead (I could hear all the text and Facebook alerts and it was driving me crazy that I couldn't see them!) we headed just a few miles away from the hospital to see if they could fix it. A productive way to pass the time. Thankfully it's under warranty and a new one will be here tomorrow.

We made it back to the hospital right in time for our clinic appointment. The appointments after scans are always so anxiety-filled. Each minute that passed felt like an hour. Finally, Dr. W walked in...and when he didn't say anything right away, I think I stopped breathing. When he did start talking, all I heard was that he didn't have results yet. Since it had only been four hours since the scan started, we weren't surprised. That would be a really quick turn around. We have just been spoiled and we have never left after scans without results before today. It was tough leaving feeling so unresolved.

Fast forward a couple of hours.

Dr. W leaves a message--"no evidence of disease".

Those four words made all the little, piddly things that went wrong with our day just melt away. Those four words are the only ones that matter. God continually teaches me about perspective. So many little things can go wrong, they can pile up and up and it's discouraging. Frustrating. But really...I always feel so much calmer and more in control when I ignore those little things. When Jack was first diagnosed, I felt instant perspective. All of a sudden, I knew what was important to me and what wasn't worth the time, energy or emotion. So maybe God just thought I needed a reminder? Or maybe He was just trying to distract me from worrying over the scans? Who knows...I just know that those four words--"no evidence of disease"--served as my reminder. That's what's important. Not sleep, or my phone, or a wasted half-hour.

We are so thankful. SO thankful. It hits me a little bit more every minute that passes and I am even more thankful.

When we got the clear scans in January, we were very thankful. So many families never get a set of clear scans. But we also knew that the April scans would probably be more indicative of how his body would handle this disease. At the January scans, he had just had his last chemo three weeks prior. Now it's been three months since that last treatment. Definitely the longest stretch where we have done nothing to keep cancer at bay. So...since we haven't done anything in three months and there is still no evidence of disease, we feel much more secure with today's clear scans. And with each set of clear scans...the chances of recurrence get smaller.

I don't want to sound naive...we know cancer is an unpredictable beast. A horrible, irrational, pointless killer. We know that all of the statistics and probabilities that are out there don't mean things will really go that way. We were told at the beginning that either he will get better or he won't. Right now, and we hope always, he is better.

And we are thankful.

So, we'll be doing this again in July. He will get all three scans then: PET, MRI and CT. I feel like handling it will be a little easier then, but who knows. Until then we are going to LIVE as much as we can. Our little 3 month leases on life in between scans may not be ideal, but it is reality for us and so many other families. It can all change with just one cell, one spot, one bad scan. All we can do right now is take each day and live it to the fullest! My goal is to have even more fun than we did between January and April...and we had ALOT of fun!

About 20 minutes after we got the message about scans, we got more good news! We have an appointment tomorrow with the Make-a-Wish Foundation of North Texas to have Jack's wish granted! We are so excited and it's likely that I will be a big bucket of tears just seeing him talk about what he wants. Who knows if I will be able to hold it together once we get to actually go.

And even more good news...we have a consultation Friday to get Jack's port out!! We really thought he would have his port for YEARS, but the doctors really want it out. Since it is a foreign body, they believe it is a risk to leave it in when it's not necessary. We feel confident taking it out now that we have two sets of clear scans under out belts! That is one surgery I will be THRILLED for!

I have absolutely loved seeing all of the pictures of people in their green ("gring"!)...I can't wait to show Jack how many people wore his favorite color for him. You can email pictures to lindsayjmarkert@hotmail.com and I should have my new phone sometime tomorrow ;)

Thank you SO much for all of your prayers and love! We appreciate it so incredibly much.

{Early morning.}

{He was a little upset and he wanted me to keep my hand "right der".}

{Headed down to the MRI area.}

{Snuggling in recovery.}

{Brayden discovered the blue slushies while we were in recovery and he loved them!}

{I asked for a smile.}

{♥}

Resisting all fear.

2011-04-10T19:11:00.002-05:00

Tomorrow is scan day.

We have to be at the hospital at 6:00am and Jackson's MRI (the only test he is getting this time) is at 7:00. It should last an hour or so and then he will go to recovery for awhile. Our clinic appointment is at 11:00 and hopefully we will have results then.

Last week I was a wreck. Every time I thought about Monday, April 11th, I would have to catch my breath and try to coax my heart back into beating normally. But the past day or so I have calmed down and I'm ready.

I know he is cancer free and will continue to be. Tomorrow is just a formality ;)

This morning my devotional talking about "coming to God in faith and resisting all fear". Very fitting. That's what I'm doing--or, that's what I'm trying to do.

Don't forget to wear green (or "gring" as he says) tomorrow for Jackson! It doesn't matter what you wear that's green...just say a prayer every time you lay eyes on the green item. Pray for an easy port access. Pray for no complications from anesthesia. Pray for calmness for Jackson. Pray for an anxiety-free day for Ryan and I. Pray for a cancer-free future for our baby.

We would love pictures of you in your green! You can email them to lindsayjmarkert@hotmail.com.

Your love, support and prayers are SO very appreciated. I can't put into words how much it means to have so many people behind our sweet boy, rooting him on and praying for his health, his future, his life.

Makin' up for lost time.

2011-04-04T23:08:00.002-05:00

Well, we have definitely been living.

Since we were pretty much locked down from May-January, we were anxious to make up for lost time once Jack's immune system had a little bit of time to recover. As a result, the past couple of months have been full.

Full of friends and family.

Full of fun.

Full of laughs and memories.

Full of life.

And--to be completely real--full of tears. Tears from fear of the future and the unknown, tears from anxiety about "re-entry" into normal life, and tears from a few good ol' fashioned toddler/pre-schooler meltdowns.

At the strangest times (eating pizza at Chuck E. Cheese, pushing my cart full of babies in Target, driving to the zoo, watching Jack watch Buzz & Woody ice skate), I will feel an overwhelming thankfulness and appreciation for the very moment we are experiencing. And I feel like such a nerd for choking up in such a normal place....but it's almost like we have been given this alternate view of life, and the fact that we have the ability to actually be at such a normal place elicits such a deep feeling of gratitude. Thankful, grateful, appreciative...all are an understatement really. It's more like falling-on-my-knees-before-God-with-thanksgiving type of feeling.

All parents fear losing their child. But when you know the culprit, the thing that is actually trying to take your baby away from you...the stakes are raised. You feel fear more deeply...but you also feel gratitude more deeply.

Each day brings its own new experiences and emotions and slowly we are feeling as though we belong again in this normal world. My heart is so full after spending so many happy days with my (3) amazing boys.

Jack's next scan (only an MRI this time) is Monday, April 11th at 7:00am. In a lot of ways, we are more nervous for this scan than we were for the January scans. When we did the January scans, he had just finished treatment. At this point he has been without treatment for exactly three months. The longest stretch of time since diagnosis. My throat closes up and it's hard to breathe when I think about that.

Jack's favorite color is green (which he pronounces "gring") so we are asking that everyone wear green on the day of his scan (Monday, April 11th). Whatever you have that's green--a Praying for Jackson bracelet, a J Team shirt, scrubs, socks, nail polish, hair accessory--when you lay eyes on that item, please say a prayer that Jackson will be and continue to be cancer-free.

So...here is what we have been up to. Get ready for picture overload! (You can click on the pictures to make them larger.)

{Lots of swinging & sliding lately.}

{Cousin love.}

{The boys are very into reading these days and Momma loves it.}

{When we returned to church, both boys got a lil sick from the exposure. Jack's was quick and over in about six hours, but poor Brayden was sick for days.}

{Dominoes, Catchphrase and good food!}

{Lots of playdates with good friends.}

{We did Superhero Schooltime.}

{We watched Jackson's eyelashes grow back.}

{We did a potty dance and got a new car for getting business done.}

{We had a really, really long oncology appointment.}

{We have enjoyed eating at restaurants again...the boys were extra silly and lovey at this one.}

{Lots of outdoor time.}

{Jackson loves to get the bugs!}

{Late on Saturday March 19th, after a really fun day of playing at the park, dinner, shopping and seeing the SuperMoon (which Jack insisted was a planet) Jack started running a fever of 102.3. Since he still has his port, we had to go into the hospital. We got there about 11:30pm and stayed until Monday morning.}

{We saw the fish, the trains and we went outside...where Brayden tried to escape.}

{We had the hallways to ourselves Sunday night!}

{Jackson loves his gymnastics class!}

{We went to the zoo. Twice!}

{We went to Houston to visit some of Ryan's family and we stopped at the Children's Museum...so much fun!}

{They were passed out five minutes after getting in the car!}

{We went on a walk and fed the ducks at Uncle Larry's & Aunt Debbie's in Houston.}

{On our last day in Houston, we went to Chuck E Cheese. It was so much fun and Jackson still talks about the games!}

{Dr. Jackson to the rescue!}

{Since Jack's counts were really low when we left the hospital, we had an appt to check on them last Tuesday. We celebrated his high counts with cupcakes!}

{The boys love hanging out in Daddy's studio.}

Please pray that Jackson's scans next Monday show NO evidence of cancer! Don't forget to wear green (and pray when you lay eyes on that green!) that day for Jack if you can. We appreciate your prayers, support and love so incredibly much!

Live.

2011-02-18T14:08:00.007-06:00

Things are getting more normal around here by the day. I've started working some at my mom's flower shop (Valentine's Day=no longer a holiday for me!), we've had a few playdates, the boys and I have made a few grocery store runs (getting used to the daily dose of germs again) and Jack will start a gymnastics class soon. We are planning to return to church this weekend too--I'm so excited, but a little nervous for the boys. It will be the first time in a LONG time for them to be around more than one other child.

It's wonderful to be normal again.

To be busy again.

To be able to just run into the store with the boys again.

But....it's still scary.

And uncomfortable at times.

I find myself getting anxious in certain situations.

And I have to push myself sometimes. To squash the little voice in my head that says "wouldn't it be nice to stay in this little hole you were forced into?"

At first the isolation was hard. REALLY hard. But then we got used to it, and it became comfortable. The germs were outside and we were inside. Easy.

We were conditioned to be cautious of everything, everyone, every situation.

So. It's scary to get back out there.

I have a word for this year.

Live.

This year, I want to just LIVE.

I want to take my boys to the park. I want to go on girl trips. I want to go to spin class and Zumba. I want to go on dates with my husband. I want to appreciate every minute, every day, every week. I want to speak, act, love and live with purpose.

I don't want to be scared.

All along, people would comment on "how well I was handling it all".

Well. I wasn't.

I am a mother. I am a planner. A do-er. A note taker. A question asker. So I put on all of those hats and just handled the task at hand. Chemo-check. Surgery-check. Chemo again-check. Radiation-check.

I became very good at avoiding any and all emotion. Crying meant accepting. Realizing. Connecting what was going on with what I knew our life to be.

So I just didn't cry. Maybe 5 times since he was diagnosed have I cried.

Now, here in the present, with one set of clean scans underneath Jack's belt....I am accepting. And realizing what has happened and what that means for the future. And connecting our "old" life with our "new" life.

Sometimes I look at his still bald head and I'm momentarily shocked. This is Jackson? My Jackson? What happened to the chubby, curly headed two and a half year old that I had? It's almost as if now that my brain carried me through all of the stuff that I needed to be able to focus on and pay attention to....now it's saying ACCEPT. REALIZE. CONNECT.

Also?

It's saying LIVE.

{A constant reminder.}

We skipped naptime today.

2011-02-04T14:11:00.005-06:00

This afternoon, while the biggest and the littlest were napping, Jack and I bundled up and went outside for some snow fun.

We were the only people out on our little cul-de-sac and we had an absolute blast.

I love making memories with my babies.

We colored the snow green.

We had snowballs in hand, ready to go.

We walked alot.

We made snow angels.

Pretty good for a first-timer.

We threw snowballs.

Lots and lots of snowballs.

We found our {bundled up} shadows.

Naptime is overrated anyway.

We came inside and Jack watched SuperWhy and had a banana, a juicebox and some Smarties. Oh to have the life of a three year old!

A very sweet, precious, hilarious little boy is 17 months today.

But he is too busy to look at his Momma.

eight months to the day.

2011-01-25T18:03:00.006-06:00

May 24, 2010 we drove our little family of four home from the hospital. It was a sunny Monday afternoon, the start to a new week.

We were headed home to begin our new lives, to find our new normal.

We were scared.

Confused.
Sad.
Uncertain.
Mad.
Tired.
Emotional.

We were overwhelmed.

We had just spent three sleepless nights at Medical City.

Crying, consoling, waiting, praying, holding, hugging, talking, meeting, questioning, Googling.

During that first stay, Jack had five tests, his port insertion surgery and his first chemo treatment.

Whirlwind.

Cut to yesterday, exactly eight months later.

We drove our little family of four home from the hospital, with an exhausted little boy who endured three scans over three hours.

And the results?

AWESOME.

Clean scans! No evidence of tumor or metastasis. The doctor even said REMISSION.

We are so thankful for yesterday. God is good. Although, God would have still been good had we gotten not-so-good scan results, but we are so, so thankful for those good results.

Although this is HUGE, Jackson's journey is not over by any means. We are out of the treatment phase and we have moved onto the scanning phase. His next scans are in April, then July, then October. After that I think the plan is to scan twice a year.

The April scans will be pretty scary (really, they will all be scary, even 20 years from now) because that will be the first set of scans with a significant amount of time since stopping treatment. In April, we will be 90+ days out from treatment. Jack's last treatment was only 20 days ago. I think the April scans will be more indicative of what his body will do from here. I hope and pray that the April scans will say the exact same thing as the ones from yesterday.

With Jackson's type of cancer, the two main concerns are local recurrence and pulmonary recurrence. Statistics show that the first two years are the most risky as far as recurrence goes. After that, we worry less about recurrence and more about the long term effects of the treatments he received.

Here in a couple of weeks once his counts fully recover (they are still fairly low:700), we will begin the process of trying to be normal again. I look at it like re-entry into civilian life...kind of like soldiers that have been at war. There will be some stress and anxiety. We have been so conditioned to be cautious, to be over protective. It will be hard to revert back. We'll have to adjust and go slowly. I'm already nervous thinking about the germs at the grocery store! Although I can't wait to be normal like that again, it will be tough at times. Jackson hasn't been around other people regularly for eight months (except for hospital peeps), so it will be hard on him too. But, as always, he will bounce back fast I'm sure!

We have all been changed by this. I'm pretty sure that the change in us will continue to evolve. We are certain to come across situations or conversations or emotions that we would have reacted to differently eight months ago before Jackson was diagnosed. I don't think you can go through something like this and not be changed though.

Thank you, thank you, thank you for all of your prayers!! Please keep them coming! Specifically, please start praying now for his April scans, please pray for us as we adjust, please pray for his immune system to come back strong.

Also?

Could you please pray for this little guy? Here is his Momma's blog and here is his Facebook page. He is going through some pretty tough stuff, but he and his parents are so strong! He is incredibly precious and his little eyes just kill me.

We are so appreciative of your prayers, support and love. We are so thankful.

{Early morning, sleepy boy.}
After I took this picture Ryan said "You know, if our kids ever get famous they will wonder why people aren't taking their picture more. They'll think, my mom took more pictures when I was just sitting around." Whatever! Still snappin away!

{We'd already been there an hour.}

{Watching movies to pass the time in a very small, secluded room while the radioactive solution did its thing. It took about 45 minutes, then he was sedated for his PET. Ryan had to go in the waiting room with Brayden so that he would not be exposed to the radiation.}

{This is blurry, but it was when we were en route to the MRI. His PET and CT were done in a different part of the hospital. I stayed back as we were moving because I didn't want to see his eyes, which were taped shut.}

{We passed the time by coloring.}

{And napping.}

{Jack drinking apple juice and watching cartoons in recovery. He woke up a little wobbly and a little bossy but was happy in no time!}

{Happy, handsome boy! Eating in pj's, in public, at noon = awesome.}

{His daddy recently taught him how to give thumbs up.}

{Just heard "The scans are good!" Promptly stole Dr. G's stethoscope.}

{Thumbs up for good scans!}

{Dr. G is the one who sat us down that first day so it is very appropriate that he gave us the good scan news. Also, he gave Jack a little Hot Wheel that very first day and he did the same thing yesterday. I like little coincidences like that.}

{Jack asked for a monster for his special prize...? This is what Ryan found. We call him WolfMonster.}

{Happy, tired, relieved.}

This is one of my favorite verses. Inevitably, I will be anxious or nervous about the scans to come or Jackson's future, but this verse is a good reminder to think only of good things.

Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.
Philippians 4:8

I don't want to forget {part two}

2011-01-19T14:53:00.005-06:00

It's been awhile. I've got a lot I want to post about, so things will be pretty random around here for a little bit while I get caught up.

The major news is that Jackson is finished with chemo! DONE. I am so amazed by him and all that he has endured over the past eight months. Beyond amazed.

Jackson's first scans since surgery in August are next Monday, the 24th. The PET is at 8:00, the MRI is at 9:00 and the CT of his chest is at 10:00. He should be out of recovery by 11:30 and we have a clinic appointment at 1:00 and hopefully we will hear all of the results by then. We have to be at the hospital by 6:00, so that means leaving by 5:15, which means getting up by...insanely early!

It is sure to be a long day full of nerves and tears. Thankfully, he only has to be sedated once for all of the tests. Please pray that his port access and his sedation go smoothly. Please pray for everyone that will have their hands on him. Please start praying NOW that Jackson's sweet little body is 1000% cancer free! We covet your prayers and we appreciate them so, so much.

So, not much has been going on, but I will be trying to get some things posted here in the next few days. Some are late (Christmas), some are ancient (Halloween...whoops) and some are random but for now I have another "I don't want to forget" list. About six months ago I posted a list of things the boys were doing or saying that I just wanted to remember forever, and reading back over that list I can't believe so much time has passed! These babies are growing too, too fast.

I don't want to forget...

{Jackson edition}

How you have a really impressive memory at this age. You get it from your Momma.

How you are getting really good at recognizing locations {the french fry house aka Whataburger, Daddy's work, Gram's shop}.

How wrestling with Daddy is STILL your favorite activity. You always find energy for that even when I'm certain you had none left.

How good of a driver you are already! The first time you got in your truck, you just took off. Makes me proud and nervous at the same time.

How you don't do anything without including your brother. If you have on airplane pajamas, well then of course baby Brayden also needs to have airplane pajamas on! You don't ask for Momma to get you milk, you say "Can we have milk?" If for some reason Brayden is not with us, you constantly question where he is.

How you like to talk about how God made us. Also, how he made your new truck.

How you have a need to repetitively identify everyone's gender {"Mommy, did you know that you're a grill (girl)? And I'm a boy. And Daddy's a boy. And Brayden's a boy."}.

How you are incredibly grammatically correct for a three year old.

How you have a crush on the Dallas Cowboys Cheerleaders ever since meeting two of them.

How much you LOVE to snuggle and still want to be "comfy and cozy".

How you love playing "Chasing Mice". It's a game you made up and named yourself where Momma and Daddy chase the little mice named Jackson and Brayden.

{Brayden edition}

How you say "beee" for please, "mo" for more {while furiously signing it at the same time}, "go" for here you go and "hol me" for hold me {Jackson would say "hold you" at this age}.

How you will get something you are not supposed to have, but then ever so kindly put it back.

How you say Choo-choo for Thomas, Matman for Batman, Melmo for Elmo and Buh for Buzz.

How you will hand us something broken and say "sis it" for fix it, just like your brother did at this age.

How you say "Cheeeese!" the second you see Momma's camera

How much you love to take a bath and brush your teeth. You cry if you hear bath water running and it isn't for you. You throw a fit if I don't brush your teeth for an hour.

How you say "Mmmmmm" with a face dive when asked for a kiss

How you will chime in with "beee" when we are asking your brother how to ask nicely.

How you laugh at and look at your brother. You save your best laugh for him and look at him with so.much.love. It makes my heart explode in to 14 million micro pieces.

How you are so mischievous! Today alone you stole a piece of candy off of the table then ate it, wrapper included and later broke a lamp, all with a smile.

How you "sing along" to Spiderman.

These two sweet, precious boys sure do keep me on my toes but I would not change a second of it. I love them more than I thought possible and I hope that they always know how much their Momma loves them.

Christmas Eve {in pictures}

2010-12-31T14:44:00.008-06:00

{We checked on this guy first thing. He needs a haircut!}

{We listened to this guy sing "Frosty the Snowman". Alot.}

{We ate our favorite breakfast.}

{Jack helped Mommy make Santa some yummy cookies.}

{The boys were surprisingly into the classic Christmas movies.}

{There was wrapping.}

{And napping.}

{Brayden supervised (best done in containment) while Mommy wrapped. Notice the big red suitcase that is always packed and ready for hospital trips.}

{Jack decorated his Snowman cookie while Elfie watched. But wouldn't eat it!}

{We made our first Gingerbread house.}

{Daddy and B had some music time.}

{We headed out for our annual pajama-and-hot-chocolate viewing of Christmas lights.}

{After we got back, the boys opened their special ornaments to represent 2010.}

{Brayden was more into the wrapping!}

{A Spiderman ornament to document Jackson's deep love for all things Spidey and a Taz ornament to remember how destructive Brayden is!}

{The boys also opened a Little People nativity set, which they love to play SuperHeroes with. At least they are interested in it!}

{We set out cookies for Santa...}{The blur of the boys is so telling of how anxious they were for some cookies!}

{And Jackson promptly stole one.}

{But at least he shared with his baby brother.}

{Jack wanted to make Santa a picture.}

{Daddy read The Night Before Christmas then we all tucked into bed and waited for Santa!}

Our day also included the usual stuff...dirty dishes, laundry and fussy kiddos...but who wants a picture of that? ;)

I love my babies.

2010-12-30T17:35:00.003-06:00

I will eventually post a detailed update (short version: final round of chemo has been delayed twice but we had a GREAT Christmas at home), but I wanted to post this before I forgot.

I have a song that I sing to the boys...one that I made up one night while holding Jackson when he was tiny. Originally it was solely for Jackson, but then Brayden came along and I just altered the words ;)

It's not a great song by any means, but it always calmed Jackson and now Brayden, so it's special to us.

I love my babies, my babies, my babies
They're so handsome and sweet
From their heads to their feet
They're the sweetest around
The best boys in town
I love them so much
They're the best in the bunch
I love my babies, my babies, my babies

I'm sure I will have recording artists lining up to work with me after this gets out! Haha.

Jackson sings it with me now and has ever since he could say the words. But the past few nights he has changed the words a little...

I love my mommy, my mommy, my mommy

That's as far as he gets and that's just fine.

I'm in tears by then anyway.

{Christmas morning, seeing what Santa left outside.}

Cowboys, Santa and Links

2010-12-15T11:40:00.004-06:00

We have really been enjoying our time at home! Lots of playing, crafting and movie watching.

We were admitted for Round 14 on Friday the 3rd and all went well. Jackson was sick a few times, but he handled it like a champ and we were released Monday the 6th.

Right before we left on Monday, we got to meet some of the Dallas Cowboys! Of course, the Dallas Cowboys Cheerleaders were there too...a certain little boy has been talkin about them ever since ;)

While we were in for Round 14 we also got to meet Santa! Jackson loved him this year and even spent some time trying to figure out if his beard is real or not. Brayden was not really feeling Santa. He was pretty angry at the whole situation until he got back to Momma!

{Pretty sure Brayden had no clue Santa was behind us!}

{Thank goodness Santa didn't mind!}

{Do you think drums and a truck will fit in your sleigh?}

{Maybe next year!}

Of course Jack told Santa what he wanted for Christmas...a truck (powerwheels) and drums. We shall see what Santa comes up with!

This is the first year that Jackson really has started to grasp Christmas and it is so much fun! Last year he was excited, but I don't think he really knew why. He loves talking about Santa (and has stayed consistent on what he wants Santa to bring on his sleigh!), looking at Christmas lights is our favorite activity right now (especially since we are still locked down...it's a perfect reason to get out of the house!), our Elf has provided lots of laughs and good behavior, we watch at least one Christmas movie a day, and last but not least, we are working on explaining the real reason of Christmas. We've read a few books about baby Jesus and the first Christmas and he is beginning to put some pieces together.

I just LOVE the holiday season and this year I feel especially blessed. All that we have gone through this year really exemplifies how blessed we are to have our family of four together and happy. I wouldn't trade my (three) boys for the world.

Our plan right now is to go in for a count check Monday the 20th and then head back to the hospital on the 24th to try and be admitted for Jackson's FINAL round of chemo! Please pray that we are able to do just that...we are ready ready ready to be done!

Here are a few links:

Jackson's Facebook page

Jackson was featured on Layla Grace today as a part of their 12 Days of Christmas!

So many people have been amazingly kind to us...in so many ways, so THANK YOU! We appreciate your kindness more than you will ever, ever know.

As always, we are beyond thankful for all of your prayers! Please keep them coming.

A very long update.

2010-12-02T16:40:00.001-06:00

We got released from the hospital the Monday before Thanksgiving. Jack's counts were still really low, but were headed up. We spend the next few days relaxing and trying to get settled after our impromptu week-long stay at the hospital.

On Thanksgiving we lounged around and watched movies. Ryan got all of the Christmas stuff down and brought in the Christmas tree. A very sweet family brought over a TON of food so we had a nice Thanksgiving meal. While we were sad to not be with our families, the point to all of this is to get Jack better so we can have MANY more Thanksgivings.

After eating, we bundled up the boys and drove over to Prairie Lights. A drive-through Christmas light experience is right up our alley. The boys LOVED it and we will continue going every year until they tell us to stop.

The rest of the weekend was pretty low-key. I snuck away for a couple of hours to do a little Black Friday shopping with a bestie and Jack "helped" me decorate the house for Christmas. Mainly he would decide he did not agree with where I placed something and he would pick it up and say "I'm gonna find a place to put this Mommy". Okay! I'm trying to indulge his creativeness and leaving things where he put them.

Sunday night we decided to head to the drive in movies to see Tangled. I was a little worried because a friend told me that it was a princess movie with lots of singing, but I knew it had knights (a Jackson fav) and the boys LOVE movies so off we went.

It was awesome...very cute and funny! Both of the boys just loved it and we all laughed the whole way through! It was a great family night. So thankful for fun activities that you can do in the car. Yesterday Jack asked me if he could "eat food with Daddy and watch Tangled in the car again"! So sweet...he definitely enjoyed himself!

Monday we had to head to Arlington for an eye appointment for Jack. His first appointment in 6 months that is NOT cancer related. He had eye surgery at 8 months so this was just the yearly check up. Everything looked great and he is seeing 20/20!

When we got home we changed the boys and set up our camera outside to take some family photos. Right before naptime. With 2 toddlers. It was a little crazy and Ryan's head was cut off in some of the pictures and Jack was holding a leaf in front of his face in others, but we got some good ones! Those boys are just my world (all three of them) and I love getting pictures of our family of four.

Tuesday was spent getting ready for our next trip to the hospital. We were due to check in yesterday for Round 14 of chemo. So on Tuesday I washed, packed, organized, cleaned, etc. Fun stuff! On Wednesday morning we were loaded and ready to for our 3 night, 4 day stay at Club Chemo (as the doctors say "Kind of like Club Med, but not").

We made it to the hospital and headed to our radiation follow up first. Dr. Munoz said his leg looked a little swollen and felt a little hard but that it should all go away within the next few weeks. He was really happy with how his leg looked overall.

After that appointment was over, we headed upstairs to clinic. We got called back pretty quick and did the normal routine. Jack is gaining weight and getting taller!! He is a little over 36lbs and is 39.5 inches tall! He grew a lot this summer (take that cancer!).

After height and weight, it was time for Jack to have his port accessed. It's still really hard for him...ever since surgery he just has such a hard time with it. This time was actually not as bad as some of the recent visits. We got it done with only me holding him down and Ryan trying to distract him. Sometimes we both have to hold him down.

Once he was accessed, Nurse Ginni got his blood and Jack actually got to carry it to the lab! It was pretty cool, but once we got in there he was pretty scared and asked to "get outta this room!!" I think the big machines reminded him of the radiation room.

Then we waited for his counts to come back. Jack's new friend Kadence had given him a watergun in the playroom so Ryan showed him how it works (in the sink only!).

So remember that when we left the hospital right before Thanksgiving his counts were up from 0 but still not good? They were 120 then, and 9 days later...they were only 500. A minimum of 700 is required for this type of chemo.

Bummer.

We are really ready to be done with chemo (who wouldn't be?) and while it's just a date, I would really like to start 2011 without chemo in our plans.

But God has a BETTER plan than me. And His timing is perfect.

So we headed home with an appointment for Friday to try again.

Thankfully the boys were both tired once we got home, so we were able to get them down for a good nap. After they woke up, we played outside for a bit then I loaded them up for a apple juice slushie from Sonic and to look at Christmas lights...Momma needed a little cheering up :)

Then today...today was a GOOD day. It started with a quick trip to Target with Brayden to get milk while the big boys slept in. Of course I left with more than milk (one day Target, one day I will leave your awesome store with only what I came in for) and then we headed home for lunch and naptime.

And then my phone rang.

It was a very sweet lady explaining that someone had nominated us for a Christmas Wish through our local Christian radio station. The morning host read the letter that my awesome friend Heather sent and of course I was in TEARS. I haven't cried in forever because I'm kind of afraid that I won't be able to stop if I start.

I was right. I couldn't stop. Three hours later and I'm still sniffling and shaking.

KLTY is so very generous and they are blessing us in amazing ways and they are enabling us to bless others (SO EXCITING!). We are beyond thankful!!! Words really do not do justice to the gratitude we feel.

I said thank you over and over while we were on the phone (in between sniffling) and the lady talking to us said that while they would love to take credit for everything, thanks were really owed to the people that donate to the Christmas Wish program. She said that it's God's way of showing us that we are not alone on this journey. I love that!

Although the gifts are AMAZING and I am so incredibly grateful...the best part of the whole experience was this...

After it was all over, I was told to expect a call from a guy named Jack to work out the details.

And then my phone rang.

It turns out that Jack also had cancer at age 3 (he is 23 now). He underwent 26 rounds of chemo and had several radiation treatments. I was crying as he described how he played sports and is getting married in a few months.

You have no idea how hearing that calmed my heart.

Lately, I have been especially worried about Jackson's future. I KNOW that he will beat cancer. I believe that. I have faith that God will bring him through this, whole and healed. But the truth of the matter is that the drugs and procedures that ensure that he will be a cancer survivor can cause other issues.

So it was so moving to cross paths with this grown-up Jack. An instant connection. Only people who have been through it can REALLY understand, and his story is the most similar in terms of age and treatment that we have come across.

I know I will have so many questions for Jack and his parents. I want to hear his story, every detail.

Can we talk about how amazing God is for a minute?

Childhood cancer is rare.
Childhood cancer that requires radiation is even more rare.
Both named Jack.
Both cancer patients at the age of 3.

The way that God orchestrated this connection...through Heather, through his job at KLTY...so that Ryan and I could feel hope for our Jackson's future....is beyond incredible.

We are so blessed. Cancer and all.

Just a quick update on what the boys are doing lately...

Jack is teeteeing in the potty! And staying dry overnight! Wooooohoooo!

Lately, Jack has been asking about God. It started with this question "Mommy, did Bob the Builder make us?" and that has led to more conversations. Precious, precious conversations. I love his three year old mind. We don't even watch Bob the Builder!

Brayden is such a mess...literally! He can wreck a room in seconds!

He is starting to talk..."no" "Melmo" (Elmo) "Bubba" "go-go" (there you go) and many more! Of course he has mastered Momma and Dada :)

We head back to the hospital tomorrow morning bright and early to try and be admitted again. Please pray that Jack's counts will be high enough to get this show on the road!

{Thanksgiving morning}

{Mean reindeer}

{Sweet reindeer}

{I have no clue}

{Best boys ever}

{Poor thing}

{Munching with Daddy at the movies}

{Chaos during family pics}

Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.
James 1:17

Round 13 and 2 surprises

2010-11-19T18:01:00.009-06:00

Jack finished up Round 13 of chemo on Saturday the 13th. He was in pretty good spirits the whole time and enjoyed lots of good movies, wagon rides, crafts with Mommy and drum-playing with Daddy.

{Jack got to visit with some therapy dogs the first night of chemo.}

{He kept telling this sweet dog "Don't you be lickin' me!" and "I like your twaws!" (claws).}

He did pretty well with the new drug until Friday night. He got pretty sick late that night and then again on the way home Saturday morning. That was really rough but thankfully he perked up almost instantly when we got home.

Last Thursday morning when the doctors came by they told us that they felt it would be best if we did two more rounds, instead of just one more. Boo.

{Enjoying being outside for a little bit.}

We were pretty surprised...just the day before we were told that we for sure only had one more round. But we trust our doctors. We know that they are very experienced and knowledgeable and if they think this extra round will keep cancer away FOREVER...bring it.

So the plan is that we will try to be admitted on Dec 1st for Round 14, leaving Dec 4th and then try to be admitted on Dec 22nd for Round 15, leaving Dec 25th.

Hopefully we can stick to that plan but it all depends on his counts. I would love to be DONE with chemo in 2010 and start 2011 without "chemo" written on my calendar.

Saturday night we had our Heroes for Children event at the Dallas Museum of Nature and Science. The boys had a blast.

Jack ran from dinosaur to dinosaur saying "Dinosaur, do you like me?" It was absolutely precious. Great family night.

{My boys.}

We had a pretty low key Sunday and Monday. We were looking forward to a week at home with no real plans other than me begging Ryan to get Christmas stuff down.

About 7:45 on Monday night I noticed that Jack felt warm. I took his temperature and it was 99.5.

By 8:15 it was 100.6 and I was waiting on the oncologist to call me back.

Fevers are a big deal and they don't allow us to give him tylenol or do anything else to try and break the fever.

Basically, his body is so stripped of the ability to fight anything off (chemo kills good cells along with the bad ones), so when he gets a fever--even a small one--it's his body calling for help.

Poor baby just laid in our bed while I ran around packing bags. He had been in a great mood all day but that fever just wiped him out so fast.

We made it to the hospital by 9:45 Monday night and we were attacked by three nurses.

This was our first visit due to a fever (I was going for a perfect record but 13 rounds of chemo with no fever visits is pretty good) so we had no idea what the procedures were.

We actually thought we'd get to leave after the doctors rounded on Tuesday morning. I said that to the nurse and she laughed at me. Good thing she's my favorite night nurse or I would've been upset.

It's really important to get fluids and antibiotics started asap so that is why they came at us full force.

Within 15 minutes of being there his port was accessed (not fun for anyone, especially since he didn't feel well and had fallen asleep in the car), his vitals were taken, the nurses got several vials of blood to send for various tests, a broad spectrum antibiotic was started and a chest xray was scheduled.

His temperature reached 101.7 but was under control within two hours. The chest xray machine was wheeled up to our (really, really tiny) room at about 11:15pm. It was quick and painless.

We all settled in for a short night of rest.

Tuesday morning was eventful.

The chest xray showed something on his lungs. I did not start breathing again until the nurse explained that it was fairly normal for that to happen when kids were in for fevers and that it didn't look cancer related.

A child with cancer + hearing "something on the lungs" = PANIC.

{The boys playing catch.}

So, since his xray showed "something" (best explanation is that he had a small cold or other respiratory issue) a nose swab was done. Not fun at all for a three year old!

We also started a mineral oil/grape juice cocktail to help with some tummy issues.

Also not fun.

{Pretty much sums up how Jack felt about all that.}

Another broad spectrum antibiotic was started.

We were put on strict isolation while we waited for the results of the nose swab and other cultures. That meant no visitors for Jack's sake, and none of us could leave for the sake of the other kids on the floor.

Tuesday night we were also moved to a bigger room which has been nice.

{Craft time!}

Wednesday the nose swab came back negative, which meant they couldn't really explain the fever or the chest xray. Another test is being run right now with results expected next Wednesday.

His hemoglobin was low and getting lower on Wednesday so he had to get a blood transfusion.

Thursday we were taken off of isolation, which meant we could leave the room. Jack still can't leave the room or have visitors because his counts (ANC) are just too low. The doctor's words were "I don't want to put him out in the world just yet."

{Monkey boy Brayden.}

His counts, other than his hemoglobin which shot up after the transfusion, have been dropping all week.

So, now we are just sitting and waiting for his counts to increase. And eating. Pretty sure I will need a diet plan when we get home.

All in all, it hasn't been bad. We are having lots and lots of uninterrupted family time and some really good laughs. God blessed me with a hilarious husband. The boys have been so good and so funny. I love watching them together.

{All snuggled up for stories.}

And like always, I'm reminded that our situation could always be worse, our plate could always be more full, that we have alot to be thankful for in a tough situation. Five nights (and counting) is a long time to be in the hospital, but not compared to some of the families up here.

So thankful we don't have animals at home to worry about.
So thankful I don't have a job to be at.
So thankful Ryan has a job that cares about his family.
So thankful we don't have school age children.
So thankful that Jack is in good spirits.
So thankful for chocolate thunder cake. (Don't be jealous.)

We are still fighting.

Some families are not.

SO THANKFUL.

Please pray his counts go up soon so we can have some time at home before Round 14.

Also, please pray that all of the cancer cells get knocked out and stay AWAY from my baby.

Give thanks in all circumstances; for this is God’s will for you in Christ Jesus.
1 Thessalonians 5:18

Coming to you from Room 614D

2010-11-10T16:34:00.003-06:00

So sorry for the lack of updates.

Some days writing is easy and some days it isn't. It forces me to think about our situation. And I don't wanna. But since we are in the hospital anyway...kinda hard to avoid it.

Everything has been going pretty smoothly. No sickness from Round 12 back in October. We were able to sneak in a trip to the Zoo the day after we were discharged! His counts weren't great, but not toooo low, so we just avoided people at all costs. The nurses didn't freak when I told them what we were planning so I figured we were okay. I think they know us well enough at this point to know I had the hand sanitizer out every 5 minutes. I had been really, really wanting to take the boys since we spent the summer on lockdown and it was SO nice to be out and have a normal family day. The boys had a great time and I am so glad we were able to pull it off.

Totally loving not driving to Dallas every day for radiation!! Those 20 days will not leave my memory anytime soon. I am so thankful that is behind us. Extreme situations make you look at things differently and the whole process really made me appreciate our normal days...even if the normal is a new one.

I had a conversation with our radiation nurse that truly depressed me. One day when we were waiting for Jack to wake up from sedation, we started talking about how often they have children in the clinic for radiation. Childhood cancer is very rare and not all children with cancer require radiation (although when it comes down to it, I'm thankful we did it. Studies show that radiation after tumor resection equals less of a chance of recurrence.) and not all children that do require radiation require sedation--if they are old enough to understand that they need to be still, they don't have to be sedated. So, when she and I were talking, she was explaining the rarity of it all. Something about knowing that not many people were going through what we were going through at that same time was just defeating. And made my heart heavy. Not sure why. I would wonder as we drove into Dallas each day if anyone else was doing the same thing we were...and the answer is probably not. Oh well. Just gotta take it for what it's worth and move on.

His leg is healing well from radiation. It got bad for a few days towards the end. He was in a lot of pain when I bathed him or put cream on his leg. We got some new cream from clinic last week (stuff they use for burn victims) and it has helped a ton. He still experiences bone pain from time to time and that can be heartbreaking because he gets so distraught.

We checked in this morning for Round 13. Jack has been having a rough time with his port accesses lately, but thankfully this morning it wasn't too bad. A Push Pop and Spiderman made it all easier to handle.

He gained a little bit of weight which is awesome. His counts BARELY made the cut for chemo. It's crazy how compromised his immune system is and how long it takes for his counts to recover. He even got a shot after chemo last time to help his counts go back up...and we still just barely made the required number. They are typically at their peak right after chemo, and then they plummet. Lately it is just taking so much longer for them to recover.

We are so thankful he has not been sick throughout this process. We cherish our time at home and we are so glad that he has not had to be admitted inbetween rounds for a fever or infection.

This is our second-to-last round of chemo. He will be getting a new drug today and next time.

I am nervous about the new one.

It's the only drug (out of the five different ones he has had) that the doctors talked about really in depth. They don't always go into a ton of details, especially about side effects, because really? Do we want to know? Will it change our decision to continue with treatment? No.

So, they typically give the main points, hand over some literature and that's it. Of course they answer any and all questions that we have, always.

I could be looking into this too much, but the fact that they took the time to really explain the side effects of this one just makes me a little queasy.

But since the nickname for this drug is "Red Devil" (from Google, not the Doctors) (Yes I know I shouldn't be Googling) I think not.

However, I will focus on the good that the drug can and will do. I will pray that it is hard on the bad cells and gentle on the good ones. And that's really all I can do.

Right now, he is getting fluids and we are waiting on the chemo to arrive from the pharmacy. Pre-meds are at 4:30 and the first drug should be up and running by 5:00 and will be done by 8:00. The second drug--the new one--will go up at 8:00 and run until 6:00am.

We will repeat the same routine tomorrow night and Friday night. Hopefully we will be discharged Saturday morning. We were invited to a really cool event at the Dallas Museum of Nature and Science that is Saturday night. It is an event for cancer families put on by Heroes for Children. Jack is SO pumped! I found him a really cute dino shirt to wear (and one for Brayden of course). I'm so very thankful that it fell right after chemo before his counts drop to the 100's again!

My sweet blog friend Michelle's daughter got a clear scan this week (praise God!) and she mentioned in her post about how many times her sweet baby has had to be sedated (once is too much!!) and it got me trying to count all the times Jack has been sedated. Thirty. 3-0. Maybe more. I got tired of counting scans.

Ezra went to Heaven this past weekend. Please, please say a prayer for his family. I imagine that their hearts are hurting so very badly right now, and will always.

Gosh I hate cancer.

20 days.

2010-10-25T16:12:00.002-05:00

20 days of telling Jackson no when he asks for milk after waking up.

14 days (6 of the 20 we were inpatient) of driving to Dallas on empty stomachs.

20 days of walking through those doors and being hit by the hospital smell.

20 days of sitting on the flowered couches and watching cartoons.

20 days of walking him down the long hallway.

20 days of carrying him into the treatment room.

20 days of holding him while the anesthesiologist does his thing.

20 days of feeling his body give in to the medicine.

20 days of laying him down on the table and walking away.

20 days of looking back one last time.

20 days of waiting.

20 days of looking up anxiously every time the door opens, hoping it's over already.

20 days of rushing to the back when it is.

20 days of hearing the pulse ox machine beeping down the hallway.

20 days of sitting in Room 6 while he wakes up.

20 days of listening to his deep sleep sigh.

20 days of Nurse Wendy checking vitals and pushing pressure points.

20 days of seeing him wake up slightly grouchy and irritated.

20 days of a very strong little boy ripping off the pulse ox and bp cuff.

20 days of chugging apple juice.

10 days of Blues Clues stickers. Then he got bored with that.

20 days of radiation. On my 3 year old. How did this happen?

About Day 6 he stopped crying and freaking out when we walked into the treatment room. Happy that it was easier on him but sad that he was so used to something so awful.

He started losing his hair again on Day 11. I will never forget seeing his hair on that white pillow.

He asked me to put him on his bed (the treatment table) on Day 14. I cried in the hallway.

I am thankful for modern medicine.

I am thankful for sweet nurses, efficient techs and knowledgeable doctors.

I am thankful for Chick-fil-A on the way home.

I am thankful for a husband whose job allows him to be there.

I am thankful for DVD players in the car.

I am thankful for a God that carried us through this.

I AM THANKFUL THAT THIS IS OVER.

My kid is way stronger than I will ever be.

He is amazing and awesome and outstanding and wonderful and I LOVE HIM SO MUCH.

Thank you for praying.

For where two or three come together in my name, there am I with them.
Matthew 18:20

Playing catch-up

2010-10-11T15:15:00.010-05:00

The past couple of weeks have been tiring to say the least. Between daily trips to Dallas for radiation, a sick baby and Ryan working a TON---we are all beat.

We got home from Round 11 of chemo on Thursday the 30th and we go back to be admitted for Round 12 next Monday. Jackson has been doing really well with this chemo so far. He only got sick once in the hospital and he hasn't been sick since we got home. His energy is great and his appetite has actually increased!

Last Wednesday we went to clinic after radiation. His counts were 130. So very close to zero. We kind of expected that but it was still surprising...his counts haven't been that low since June. So we are locked down...excluding radiation of course. We are very lucky that Jack hasn't gotten sick, considering the number of people that have to have their hands on him every day.

Wednesday evening, I put the boys in our wagon and took them on a ride on our street. It lasted about eight and a half minutes. I looked down and Jack had two huge mosquito bites on his face and they were lookin fierce already. We ended up going back to clinic Friday morning after radiation because his cheek was so very swollen. The doctors were concerned since his counts were so low, but thankfully they did not admit us and we were able to treat it at home.

Ryan thinks the mosquito probably died right away because of the chemo. HA!

Our weekend was very low-key. The house does start to close in on us after awhile, especially when it's just me and the boys, so we made up some errands that would get us out of the house but not out of the car :) It helps break up the day.

Today was Day 10 of radiation...we are now halfway done!! Jackson is doing so well. He does have breakdowns, and accessing his port on Mondays has become rough (ever since his hospital stay he has a hard time letting anyone get close), but overall he handles it AMAZINGLY well.

Sometimes when I talk (or write) about Jackson's story, I pretend it's not mine to tell. I am somehow able to convince myself that--in that moment--I'm just talking about someone I know.

Not someone from my own body.

Not someone I would trade places with in a nanosecond.

Not someone who holds onto me so tight when I have to let him go.

Everyday we walk our little boy back to a big room, filled with strange machines and strange people. And we have to let him go and leave him there. All alone.

This is not normal.

But it's a weird thing, how you can do something so not normal over and over again and it becomes your new normal. Routine. Maybe even a little easier.

But hard as hell at the same time.

People stare at us when we are waiting for him to be called back for his radiation, trying to figure out our situation.

And then they look at us with sorrow in their eyes when they put the pieces together.

I AM TIRED OF THAT.

Please, please, please. Do not be sorry for us.

We are fighting for our sweet Jackson.

There are so many people whose fight is over. Ours is not! We are happy, elated, overjoyed to still be fighting.

I hope to fight his fight the rest of my life.

This is hard, and it is getting harder. During the summer, we really thought we would be done with all of this by now. Being locked down is essential to Jackson staying well, and I would do it for years on end if we had to. It still stinks. I want to take the boys to a pumpkin patch or trick-or-treating. A life changing situation makes you appreciate things more, makes you want to take advantage of every rainy day. It's frustrating to say the least to feel that way but not be able to actually do anything.

But I know, I just KNOW, this season of our lives will pass. I will have to go back and read this blog to remember how it felt to be so trapped, so isolated.

I can't wait for the day that I can re-introduce the boys the outside world. I have a mental list of things I can't wait to do with my little family of four.

This has been my mantra lately...

I will not complain.
I will not have a heavy heart.
I will fight.

Granted, sometimes I do complain (ask Ryan) or have a heavy heart. But I always, ALWAYS, fight.

We are trying so hard to not let our fight affect our marriage. We are strong and united, but it's still tough on us as a couple.

The two of us are the only ones that really, really know everything. That hear every word that the doctors say, see our baby at his weakest most vulnerable moments. That share the same concerns and fears.

I am so very thankful to have such a wonderful, caring, kind husband. He is truly invaluable to me. The boys think he hung the moon and then put the stars in the sky. I truly could not do any of this without him right beside me. He works tirelessly, driving back and forth from work and the hospital when we are admitted for chemo, never complaining. He will act completely crazy just to make Jack laugh when he doesn't want to.

I love him for all of that and so much more.

Here are some pictures from the past couple of weeks.

{Favorite picture from the boys' birthday party!}

{Before church the day before being admitted for chemo. We were so happy we got to go! And Jack did put on some pants.}

{Talkin' to Daddy while he was at work.}

{All of the books and toys we collected at the boys' birthday party to donate to the pediatric floor.}

{Waiting for radiation.}

{A boy and his Buzz!}

{Snuggles with Daddy.}

{Music time at the hospital.}

{Leaving the hospital after completing Round 11.}

{Music time at home.}

{Brayden is my mischievous child.}

{The next baseball great!}

{Brayden has places to go and things to hammer!}

{Jack feeding his Chemo Duck in between radiation and our clinic visit.}

Please cover Jack in prayers every morning at 9:10 as he receives his radiation treatment. We will be admitted Monday morning after radiation for Round 12 of chemo. We appreciate all of your love, support and prayers so very much!

Jackson's story

2010-09-30T08:14:00.002-05:00

Today my good friend over at My Pixie Dreams is featuring Jackson's story in honor of Childhood Cancer Awareness Month! I am so honored that she is spreading Jack's story...her daughter's story helped us in the beginning and I hope Jack's will help others.

Click on over, read Jack's story and spend some time reading up on her sweet daughter Monkey's fight as well!

The J Team

2010-09-28T13:08:00.006-05:00

Saturday was a beautiful day! Rainy and overcast, but still beautiful to us.

So many people came out to walk (some ran!) at the Heroes for Children 5k for The J Team and show their support for Jackson. We cannot say thank you enough to everyone who braved the rain!

As the race got started, one of the founders of Heroes for Children said "What's a little rain? Their are kids in the hospital getting a little bit of chemo." Such a moving statement. It really puts everything into perspective!

A very dear friend put on her Facebook status that morning "Headed out to run the Heroes for Children 5k in the midst of rain, thunder and lightening. But ya know what? This storm ain't keeping me from running for these families who are living through the storm daily. Thankfully my GOD is the calm in all storms! GO J TEAM!!!!" (That made me cry when I read it Saturday and again just now. Thanks EW!)

What she said is so true. God is the calm in our storms. We are in the midst of a freaking scary storm. So scary that sometimes I can't breathe. But I find peace in God's word and His promise.

Sometimes this journey is lonely. Life goes on, whether we are in the hospital or on lockdown at home. We have missed birthday parties, playdates, fun times at the pool, and we will likely miss part of the holidays with our families. So it was amazing to be a part of something huge on Saturday. Not only did we feel so loved and supported on our journey, but we also helped raise money for other families as well. The J Team was 63 members strong and registration alone for 63 people is over $1200. We raised an additional $1775 for a total of almost $3000 that will go towards aiding families battling childhood cancer! I believe all of the teams combined raised over $54,000...talk about being a part of something huge! The J Team was also the 5th largest team...out of 40 teams! So awesome!!! We will be back next year too!

Hearing the crowd chant Jackson's name after we were given the award for being the 5th largest team was a moment I will never, ever forget. The look on his face is etched into my brain. Truly a top 5 moment.

{Over 700 balloons were released, each balloon representing a family aided by HFC.}

{First family 5k...a new tradition!}

{Highlight of Jack's day!}

{Families battling childhood cancer wore red HFC bandannas.}

{♥}

{So proud that we were the 5th largest team our first year!}

{The J Team! This is not even everyone! Some people had already left and some were not able to make it. Thank you all SO much for supporting Jackson!}

Beloved, let us love one another, for love is from God, and whoever loves has been born of God and knows God
1 John 4:7

3 years and 10 days

2010-09-20T15:52:00.007-05:00

Happy 3rd Birthday Jackson Rex!!

I cannot believe you are 3! I remember your first hours like it was yesterday. The day you arrived changed me forever--you made me a Mommy. I am SO thankful that God chose me to be yours. I really don't have words to describe how awesome you are. Brave is an understatement...you are my hero. You are the smartest, funniest, silliest, all-around best kid ever! Every day you get more sweet and compassionate. You constantly kiss your brother...you love him fiercely! I can't wait to watch you two grow up together. You tell him all the time that he is your best friend and I hope it stays that way.

I love you to the moon and back a hundred million times,
Mommy

Jack's birthday was the Friday after we got home from the hospital. A local Toys R Us was having a grand opening and we knew Plex from Yo Gabba Gabba was making an appearance so we decided to make a day of it!

{Oh how I love these boys!}

{Making a stop in the restroom before leaving...he wore big boy undies ALL DAY!}

{Donuts for the birthday boy!}

{The 'toy story'}

{Sweet birthday boy!}

{Plex!}

{Brother loves Plex too!}

{Wow Wow Wubbzy!}

{Being silly at lunch.}

{B is daydreaming...}

{J goes in for a kiss...he is always kissin his baby brother!}

{And he scares the pants off B! Priceless!}

{1:13pm birthday kiss!}

{Wiped out!}

{Cake for both boys' birthdays!}

{Presents!}

Sons are a heritage from the LORD, children a reward from him.
Psalm 127:3

Update on Jack and The J-Team

2010-09-20T13:22:00.003-05:00

Last Thursday and Friday were full of doctor's visits. This was our first time back to the hospital since his stay after surgery and it was evident. He was NOT happy!

At clinic, his weight was great! I was really happy to see that he is still at 35 lbs! He was on liquid nutrition in the hospital and it took him a while to get back to any sort of normal with eating, so I was a little worried that he had dropped a little weight.

Dr. G gave us the results from Boston.

"High-grade spindle-cell sarcoma, unclassified".

So, basically, the guys at Harvard think the first diagnosis (Hemangiopericytoma, also known as HPC) is off. HPC is typically low-grade. They found their preliminary diagnosis, infantile fibrosarcoma, was also off.

They don't know what it is. Hmmmm.

Umm, helloooo, Harvard?!? *Knock, knock* Thought you were the best??

Next up on the tumor tour: Oklahoma City. There it will be viewed and examined by a pediatric pathologist with hopes that more light can be shed. We should be hearing results from OKC within a few days.

After that, it may make a stop in Salt Lake City.

This is getting ridiculous, honestly. Is a world tour next?

I know that we have some of the best people in the country working on Jack's case and I really am thankful for that...I just wish we could have an answer. We thought we were past this part.

But, whatever. It is what it is. We are going ahead with treatment.

Monday, September 27th, we will check into the hospital for our first round of in-patient chemo. He will also start radiation.

The idea is that we know basically what we are dealing with, so they have formulated a plan to treat any remaining cells (of which there are hopefully NONE) and lower the chance that anything could come back.

The results from OKC (and SLC if it goes there) will determine how many rounds of chemo. If they agree it's high-grade, chemo till Christmas. If they say it's low-grade, we could be done by Halloween.

The chemo is a completely different kind than before. We will be in-patient for three days every three weeks. It's two drugs...one can't be given in conjunction with radiation so we have to hold off on that one. That particular drug is also known to be hard on the heart. Yet another thing to be concerned with...the side effects of what we authorized the doctors to give him.

Radiation is daily...and he will be sedated every day.

Moving on.

From the plastic surgeon we heard that he is healing wonderfully. He instructed us to push his activity level this week because it is likely that radiation will set him back. This week, and this week only, he is allowed to run in the house :)

The orthopedic surgeon said basically the same thing. We were given some great tips on how to help his scar lie more flat.

At physical therapy, Jack did awesome! He excelled at all of the tasks. He does favor his right leg, but that is to be expected. The therapist gave us some great ideas. We will probably go back once a week for awhile just to ensure that he is back to 100% and counter-effect the radiation.

Sometimes the road just seems to be getting longer and bumpier.

It is hard to stay positive-positive-positive all the time, although we really try.

I'm beyond thankful for a God who understands my heart and whose grace is new every morning. I can rest in His plan and that is comforting when nothing else is.

**************************************************************************************

The J-Team

One thing that is certainly lifting our spirits is seeing just how many people support Jackson!

The J-Team has almost 60 members and I know of several more people that still need to register! We are the 5th largest team...out of FORTY! We are also the 3rd highest fundraising team! SO AWESOME! Especially since this is our first year.

Some info for those doing the Heroes for Children 5k with us on Saturday.

*If you need to pay for and pick up (or make arrangements to get) your shirt, call: 972 937 3111. There are extras so even if you didn't order one back in August you can still get one! They aren't race-specific, just a shirt to show your love and support for Jack!

*I am planning on going to Luke's Locker and picking up the packets on Thursday or Friday. PLEASE let me know if you don't want me to get yours.

*We will be getting to the race early to establish a meeting place. Look for us in the neon green J-Team shirts! There will be some sort of banner or sign to help you find us (we are from the country so it may be a shirt on a really long stick).

*We will have the J-Team shirts for those of you that could not get yours prior to the race and we will also have the packets (the packets consist of a race number and the t-shirt that comes from the sponsors of the race).

I think that is it! PLEASE let me know, via comment facebook or text, if you have any other questions about Saturday! We are SO EXCITED!

Again, THANK YOU THANK YOU THANK YOU for showing your support for Jackson! Your support truly means the world to us.

Of the people racing with us, some are family-some are close friends-some are people we haven't talked to in YEARS-some are people we have never ever met. It is AMAZING to see and feel that kind of love. I can't wait to show Jackson all the shirts with his name on them :)

I just hope he is in a good mood...after all he has been socially sheltered all summer! ;)

{If you can't race with us, you can still show your support! You can donate HERE, or you can register for the walk HERE! Either way, your dollars go DIRECTLY to aide Texas families battling childhood cancer!}

But those who wait on the LORD shall renew their strength; They shall mount up with wings like eagles, They shall run and not be weary, They shall walk and not faint.
Isaiah 40:31

Busy busy busy

2010-09-15T20:26:00.000-05:00

We have been home a little over a week and we are just now getting settled back in.

We have been busy getting unpacked and organized, busy giving medicine every.six.hours and busy being just a little lazy.

And busy eating all the yummy food people have brought by. People are so kind :)

Tomorrow we have our clinic appointment to check Jackson's counts. We should hear the final results from the pathologists in Boston. Please say a prayer for good news!

Friday we have a follow-up with the plastic surgeon, physical therapy and a follow-up with the orthopedic surgeon. Jack is walking better every day, but he will definitely benefit from physical therapy. He is not quite up to running yet.

Next week we have an appointment with the radiation doctor to talk about our plan. Jackson will have a "planning" scan to see how much radiation he will get each time and how many weeks radiation will last.

Today we took Brayden to the doctor for his one-year well visit. He is in the 92% for height and the 26% for weight! Tall and skinny :)

I am still planning on posting about Jackson's birthday! Just have to sort through all the pictures.

Don't forget, September is Childhood Cancer Awareness Month. Two things you can do to show your support for those fighting childhood cancer:

'Like' Petals and Stems on Facebook. Petals and Stems will donate $.50 to Heroes for Children for every new like in September!

Donate HERE! The J-Team has met our goal, but you can still donate! Every single dollar goes directly to helping families in Texas who are battling childhood cancer.

As always, thank you so much for your love, support and prayers!!

And so we know and rely on the love God has for us. God is love. Whoever lives in love lives in God, and God in him.
1 John 4:16

Home has never been sweeter.

2010-09-09T15:04:00.004-05:00

A five and a half hour, three surgeon surgery.

Eight days in the hospital.

Numerous medications and procedures.

At least twelve different nurses.

So many bandage changes.

One meeting with a doctor that I wish didn't happen.

More tears and cries than I want to remember.

Six days of liquid nutrition.

Five physical therapy sessions.

Four loads of laundry (you can't even escape it in the hospital).

Countless viewings of the Super Hero Squad.

Several servings of hospital onion rings and chocolate cake...comfort food much?

So much kindness that I can't quantify.

After all of that and MUCH more, WE ARE HOME!!!

Leaving the hospital...

{Jackson was keeping an eye on the nurses, making sure they weren't coming for him!}

We are still getting settled in and tomorrow we will be celebrating Jackson's birthday!

Next week, we have several doctor appointments and we will start out-patient physical therapy...but hopefully he will not require too many sessions. He has been taking steps on his own today! So exciting! Momma is VERY proud.

We have preliminary results back from the pathologist at Harvard, but they are still running tests so we will not know our "new" diagnosis for a few days. The oncologists have given us a tentative plan for chemo and radiation, but it will be finalized after the results are certain.

We did not expect to be getting ready for another bump in the road after surgery and we are trying to not worry about what lies ahead. We serve an awesome God. I know that He will carry us through.

Thank you SO much for all of your prayers, support and love!!!

Who of you by worrying can add a single hour to his life?
Matthew 6:27 {Thanks DWO for the great talk the other day!}

Give thanks to the LORD, call on his name; make known among the nations what he has done.
1 Chronicles 16:8

Happy 1st Birthday, Brayden!!

2010-09-04T23:51:00.007-05:00

Brayden,

I am so blessed to be your Mommy. You light up my days with your smiles and snuggles. Daddy can't get enough of you and Jackson...well, he just adores you. I feel so lucky that God chose me for you because you are an amazing little guy. You are funny, clever, strong-willed and sweet. I can't wait to watch you grow! But can you slow down a little bit?

I love you to the moon and back a hundred million times,
Mommy

Since we are still in the hospital, we celebrated the best we could given our situation. Of course it wasn't optimal, but our little family was together to celebrate and that is all we need!

We had donuts for breakfast and later left Gram to sit with Jack at the hospital (who thankfully slept most of the time we were gone) while we took the birthday boy to eat and to Toys R Us. He had a cupcake once we got back to our room. I know he won't remember at all, but I knew I would regret it if we didn't make an effort to make his birthday a little special.

{Birthday breakfast!}

{Reflecting on the past year.}

{Dinner with the Birthday Boy!}

{Such a ham.}

{Mommy this is embarrassing.}

{Reading a classic!}

{Peeking from his almost outgrown carseat.}

{Snuggles with brother.}

{Right after the 6:48pm birthday kiss.}

{Yum!}

{Love.}

Another update

2010-09-02T21:57:00.002-05:00

I posted earlier today about the surgery. You can scroll down or find it here if you missed it.

Not too long after I posted that update, one of our oncologists came by with results from pathology.

When Jackson's biopsy was done in May, only a small portion of the tumor was examined. Now, with it all out, they can check out the whole thing.

Over the past few days the pathologists have been working on it. Our oncologists and surgeons have been checking with the pathologists often because they were all anxious to know more about Jackson's tumor.

The original diagnosis in May was Hemangiopericytoma. A very rare cancer, only 12 cases in 35 years have been reported to St. Jude's.

Basically, they are now not sure that it is Hemangiopericytoma, but they aren't sure what it is.

So, it is being sent to Boston. A pathologist associated with Harvard, Boston Children's and the Dana-Farber Cancer Institue will be working on Jackson's case.

At this point, all they can really tell us is that it looks more aggressive than originally thought.

Some good news is that right now the margins of healthy tissue look good. That means that the surgeon was able to get some healthy tissue along with the tumor, lessening the chance that any cancerous cells were left behind.

To be certain that it is all gone, more chemo and radiation are most likely in our future.

The oncologists feel really good about the fact that we went ahead with the surgery...and we do too. I really don't know how to process this, because it sounds bad...but it's out of his body.

So right now we wait to see what comes back from Boston. And hope and pray and believe that everything will be okay.

In nothing be anxious, but in everything, by prayer and petition with thanksgiving, let your requests be made known to God.
Philippians 4:6

Surgery and September

2010-09-02T14:20:00.000-05:00

This little guy with the sweet shades?

He is my hero.

Tuesday was a long, tiring, emotional day. Honestly, though, I expected it to be so much more difficult than it was.

Monday night I was able to sleep a little so I woke up refreshed and CALM. I did not expect to feel calm and I was so thankful! The song "Our God is an Awesome God" was on repeat in my head while I got ready. I prayed and felt at peace that God was in control. I was a little sad that we should have been getting Jackson ready for his first day of Mother's Day Out instead of extensive surgery, but I got over it. After all, we had much bigger plans for the day--getting rid of that tumor!

After we were ready and the car was packed, we woke up the boys. Once Jackson was in his carseat, he grabbed his sunglasses and they pretty much stayed on until surgery :) He also told us that it was "smooky" outside (his word for spooky).

We dropped Brayden off and got on the road. Once we got to the hospital, we had to wait a bit, then we headed to pre-op. We spent a good deal of time there, signing consents and having last minute meetings with surgeons. There were several children getting prepped for surgery so it was pretty busy place. Once everything was in order, Jackson was given goofy juice to calm him and they took him away.

{A blanket he was given to keep during pre-op.}

They took him back to the OR at 7:37 am. We got periodic calls in the waiting room and once the surgeons were done they came out and talked with us. We got a call about 12:10 saying that they were finishing up. The anesthesiologist came to take us to him in recovery at 1:05.

{This is the screen in the waiting room that shows the status of the surgery. He is the one with a band-aid. The band-aid signifies that surgery is winding down. It was exactly 5 hours from the time he entered the waiting room till the time his band-aid showed up.}

The waiting was not nearly as bad as I thought and feared it would be. Thanks to a sweet friend and some family, we had lots of conversation to keep us occupied! Brayden was a pretty cute distraction too :)

The basics of the surgery...Dr. G was able to get all of the tumor out along with some (hopefully) marginal tissue. He did not have to take any pelvic bone. His bladder was also unaffected by the surgery (although the tumor had pushed it, it was not stuck to it). For the most part, his nerves were not affected. Possibly some nerve endings were damaged, but Dr. G was not concerned. He did lose some muscle tissue, but that was very expected. There was an issue with his femoral vein, which is the main vein in that part of the body. A portion of it was very attached to the tumor. Dr. G called in a vascular surgeon to assist with detaching the vein. He did lose a part of the vein, but since the tumor has been there for awhile and was so big, his blood has most likely found collateral ways to flow. Also, if he has to have radiation, it is probable that the vein will deteriorate due to fibrosis anyway. The plastic surgeon, Dr. H, said it was great that the vein was saved right now, but it may not matter in the long run.

As for the plastic surgery portion of the surgery, Dr. H was able to use the best option (Praise GOD!), the gracilis muscle. We are so thankful they did not have to cut up his tummy. I hope to be able to sit down with Dr. H when he is not rushed for time to get a better, more clear understanding of exactly what he did. He has given us an overview a couple of times, but I don't speak doctor so I still can't really picture it all. I want to be able to explain to Jack what went on when he is older! From what I understand right now, the gracilis muscle was rotated up to replace the muscle he lost when the tumor was resected. Dr. H said his pelvic floor was completely gone. He also did some work to protect the spermatic cord. As far as the mesh he used to help prevent hernias in the future, he used the stratus which is pig skin.

Jackson's incision is a T shape. Horizontal where the tumor was, vertical down his leg right to his knee.

Right now, he is just in bed. No moving, no standing, no walking. He gets rotated every 2 hours or so. He really doesn't want to use his left arm very much for some reason. He has not wanted to eat, so Wednesday afternoon he was put on a nutrition IV. He will drink milk a little, and he is doing well with water and apple juice. Wednesday he also had his first blood transfusion. His hemoglobin was low and the oncologist is hoping that the blood will help his body to have the energy to recover faster. Tuesday night/Wednesday morning he had a fever of 101.5. That is the highest it has been all summer. The doctors and nurses felt the fever was from surgery, just his body reacting to all it was put through. During the day Wednesday, he did run a fever off and on, but it was not as high. There was a little concern since he received blood, but now his temperature is normal. He has drains and a foley that they empty every few hours. The first day or so he was on morphine for pain every 2 hours and it seemed to give him bad dreams. They eventually decided to switch to a fentanyl drip, so he is getting it continually plus we can push a button to give him a little more if necessary.

The last we heard, Dr. G would evaluate him on Monday to decide when we would leave. They really, really want him to be still and they feel that being on bed rest here is the best place to accomplish that. Dr. H said he could undo all that was done, and we do NOT want that. Dr. G, Dr. H and two of the oncologists have been by every day to check on him and monitor his incision (it is not fun for anyone when they look at it).

After the tumor was removed, it was sent to pathology. We should hear something soon hopefully. We are anxious to know details of what they find. Hopefully they will say that the tumor was completely DEAD!! That would mean that chemo was a huge success.

We hope and pray that Jackson's sweet little body is now cancer free, but we won't know for certain until we have more scans. I feel confident that God will take care of him!

We are SO thankful that surgery went so well (and that the time passed fairly quickly). Of course, this surgery was a huge deal to us, but after surgery a few nurses and doctors have commented on how big the surgery was, how extensive, how tough of a case. It still makes my stomach drop to think of them saying that. I am just glad they didn't say that before surgery (they may have said it and God just closed my ears to it!). I am SO glad that God makes doctors and nurses so very smart. It is amazing what they do.

The weeks ahead will be tough, but to have the actual surgery behind us is such a relief. There are many, many things that we are thankful for during this time...our doctors, nurses, hospital, family, friends, kindness of many and prayers of more. Yes, we'll be here a week if not more, but we are thankful it's not a month. He can't walk for about 10 days, but I'll take that over 100 days!

Jackson is such a brave boy! Nurses have commented on how well he is doing and how impressed they are when he doesn't fuss about things and the doctors have said how proud they are of him!

On another note, it is September! September is my favorite month of the year. It is the month Ryan and I got married, Brayden's birthday is the 4th and Jackson's is the 10th, plus it starts to feel like fall and football season is here! However, this year I have another reason to love September.

September is Childhood Cancer Awareness Month. We will be celebrating by participating in the Heroes for Children 5k later this month. Heroes for Children is a wonderful organization that does so many things for children with cancer, in addition to assisting families financially.

One way that Jackson has benefited from Heroes for Children is the Beads of Courage program. Heroes for Children sponsors this awesome program! You can learn more about it HERE.

{Jackson's Beads of Courage so far. He earns more every day!}

Want to celebrate this month with us? You can donate HERE. Every dollar counts and will go DIRECTLY to aide families in Texas battling childhood cancer!

Always be joyful. Never stop praying. Be thankful in all circumstances, for this is God's will for you who belong to Christ Jesus.
1 Thessalonians 5:16-18

Tomorrow

2010-08-30T21:59:00.005-05:00

Tomorrow is surgery day. We have to be there at 6:00am, surgery should start by 7:30 and last between 5 and 7 hours. I posted more about the surgery here.

Specific prayer requests:

*Please pray for wisdom, confidence, and thoroughness for the surgeons.
*Please pray that Jackson's little body tolerates all it is being put through.
*Please pray that the plastic surgeon is able to use the gracilis muscle (the more expendable muscle of the options).
*Please pray that Jackson recovers quickly and fully.
*Please pray that ALL of the cancer is removed and that nothing is left behind.
*Please pray for calmness, strength, patience and peace for Ryan and I.

We appreciate prayers so much. Thank you for continually lifting our sweet boy up.

The past few days we have tried to stay busy and have fun! We did have to go to the hospital to get registered and have a count check (just barely above 1000--still not near as high as we expected, but ok for surgery) but it was a pretty uneventful visit.

Jackson also had another playdate with Jadon. They have so much fun together!! We also played at home alot, spent some time with some special cousins, visited the park a couple of times, went back to gymnastics today and got some cool new Buzz Lightyear shoes yesterday :)

{Best buds}

{A very short-lived tea party at the hospital}

{Doctoring up the horsey}

{Swinging!}

{Jackson loves gymnastics!}

{Sweet brothers}

Be joyful in hope, patient in affliction, faithful in prayer.
Romans 12:12

{wordless wednesday}

2010-08-25T17:54:00.007-05:00

{Our day at The Gymnastic Zone}

Update

2010-08-22T09:54:00.003-05:00

Surgery is NOT tomorrow as originally planned. Last Monday when we called to finalize everything, we were told the surgery date had been changed. After a couple of days of back-and-forth phone calls with doctors, we were given the 31st as the final date. The change of date was because there is a plastic surgeon involved and it was difficult to coordinate the orthopedic surgeon's schedule with the plastic surgeon's schedule.

The 31st is over a week past the original date, and by the 31st he will have been without chemo for almost 5 weeks. So, we weren't very happy with the change, but the oncologists are so confident in these two surgeons and really want to make sure they are the ones doing the surgery.

Last week, we just hung around the house. It is too hot to do much else! We were able to have a couple of playdates, which was nice. Jackson LOVED seeing his friends that he had not seen all summer.

{Swimming with Austin}

{Baby brother enjoying the water}

{Riding cars with Jadon}

Friday we headed to the hospital for a count check, a meeting with the plastic surgeon and to pre-register.

We got to clinic and had a pretty quick visit. He weighed almost 36 pounds! I was so excited but not really surprised because he has felt SO heavy lately.

Our hopes were that Jack's counts would be high enough for us to go to church today. His counts had not been checked for 10 days (the longest stretch this summer--it was nice to not drive to Dallas for a full 10 days!) and at the last check they were 600. That is still pretty low, especially compared to normal healthy people.

We really thought that his counts would start climbing pretty rapidly since he has not had chemo since July 26th.

Wrong.

On Friday they were 900.

I was honestly hoping for twice that. I really thought that the combination of no chemo and time would surely mean that we would see a big jump. Anything under 1000 is neutropenic--meaning it would be risky to get him around large groups where we can't really control who is around him. Playing with one friend is a little safer in that I can ask the mom if anyone has been sick. Can't really do that at the church nursery!

The risk is so much higher right now, because we don't want him to get sick before surgery. If he got sick, it would be delayed even longer and that is the LAST thing we want.

Along with wanting to keep him well, we also want to make sure he has some fun before he spends a week in the hospital. So Saturday we went to an awesome children's museum in Waco. Even though we had to take extra precautions like washing hands every 20 minutes and avoiding certain things, he had such a good time! Besides a few trips to the store, a couple of restaurants and a few trips to friends' pools (all with lots of sanitizing!) the museum was really our only real family outing this summer. It was so awesome to let him explore and have fun. We did get the occasional funny look since he still has a bald little head, but oh well :)

When we were at the hospital Friday, we also met with the plastic surgeon. When we first learned that the surgery would require a plastic surgeon, we were told it was because Jack would be losing tissue and would need a mesh put in to keep him from having hernias. We were told to expect an hour for that portion of the surgery. The thought of having something foreign in his body wasn't thrilling, but we knew it was for a very good reason and the process of putting it in seemed fairly easy and straight forward.

So, when we met with him we were not really expecting anything different from that.

Wrong again.

When will I learn that cancer related issues are never easy and straight forward?

In talking with the plastic surgeon, we learned that he will be taking muscle from another part of Jackson's body to replace muscle he will lose during resection of the tumor. This is NOT something we were aware of and we were both pretty stunned to hear him describe the process.

One option is the gracilis muscle. This muscle is in the thigh and is the most expendable muscle in that part of the leg. Meaning he would probably not miss it. The doctor said that he would only need it if he was a high-performing athlete. Of course I think he will go on to win gold medals, so I think he needs it :)

The other option is the rectus muscle in the abdomen. This muscle is used alot in breast reconstruction surgery. It is NOT as expendable as the gracilis, but the doctor did seem to think his other muscles in that area would compensate. If this is the muscle he has to take, it would require a completely separate incision up his tummy.

Another thing that the doctor told us is that the mesh he will be putting in to prevent hernias will not be synthetic, but will be actual skin. Cadaver skin or pig skin. I understand that this is something that is safe and happens everyday, but it is just hard to get my mind around it. Eventually, the foreign skin would be completely absorbed by his body as his body heals and repairs itself.

He also told us that his part of the surgery would take three hours. THREE HOURS. Add that to the minimum of two hours to take out the tumor and we are looking at a five to seven hour surgery. I have no clue how we will make it through those hours.

Add all that to finding out he will come home with drains and have to have limited activity for six weeks. Neither of these things will be very easy with an almost three year old.

So, we had kind of a rough day Friday. But we know that God has a plan. And even though I almost threw up quite a few times and cried more, I know that getting through Friday puts us one step closer to getting the cancer out of his body.

I wish they'd let us shoot, stomp or somehow destroy that tumor once it's out, but they are anxious to get their hands on it since it is so rare. Not sure how I feel about that.

We go back this Friday for another count check, to pre-register (this past Friday they weren't ready for us) and for Jack to have a pre-surgery physical. We have officially been to the hospital at least once a week all summer. I'm so thankful he is young enough to not know what he is missing.

Friday did have a few bright spots. We have been so blessed through the kindness of family, friends and strangers. We are so appreciative! There are really no words to express how much it means to us.

An anxious heart weighs a man down, but a kind word cheers him up.
Proverbs 12:25

PET scan and a postive change

2010-08-11T19:44:00.005-05:00

Yesterday was a LONG day. Twelve hours from leaving home to getting home.

We started our day at 4:00am to try and convince Jackson to eat something before his cutoff from solid food at 5:00am. After falling asleep holding his bowl, he was able to stay awake long enough to get some food in his tummy.

A few hours later, we dropped off the baby with my mom and got on the road.

Only to encounter the WORST traffic we have seen all summer. The highways were at a standstill in every direction. So frustrating but we tried to stay positive because we knew we had a long day ahead.

{Traffic}

We finally got to the hospital and got into the children's building. We had to wait awhile before even getting checked in and we had to wait more after. They were a little busier than usual.

{Reading while waiting}

{When it was time to leave, Jack said "Thanks for the ride firetruck!"}

Finally, a tech from radiology came to get us and a nurse from the pediatric floor came with us so she could access his port (we learned this week not all medical professionals are comfortable accessing ports so we were glad she was with us). It was such a weird situation--the tech took us to the tiniest, barest room right outside the testing room. Even the pediatric nurse thought it was kind of an odd set up.

Jackson was pretty upset at this point. I think he was getting pretty hungry and he knew we were not in our regular hospital environment.

After the rough start, the radiology tech finally got the radioactive dye going. Jack had to sit still for 45 minutes (ha) because the dye travels to the areas of most activity. We sat together and watched a movie so the time went pretty fast.

After the dye ran its course, it was time for sedation. The anesthesiologist went a different route this time (since his port was already accessed) and gave him "milk from a sleepy cow" through his port. It was a much calmer experience than having the masked sedation.

Ryan and I left after Jackson fell asleep. We were only away from him for about 30 minutes, much less time than we thought we would be.

Next, we headed to recovery where he slept (and snored) for a bit. While we were waiting to be released, a Child-Life Specialist from the Oncology floor came over and got Jackson started on the Beads of Courage program. It is such a cool program and I'm really excited about it. I'll post more about that later.

{Amy explaining Beads of Courage}

{Listening}

{Choosing beads}

We were released and at that point, we still had an hour before our clinic appointment. We killed about 30 minutes getting ice cream :)

{Yummy green ice cream}

We got to the clinic 30 minutes early and they called us back right away. That caught me off guard! I was prepared to wait and think and pray in that 30 minutes...I needed it. So I was pretty shaky when we headed back. I'm pretty sure I was babbling to the nurse about something insignificant.

Jackson did the normal stuff--weight and bp--before we moved on to the examination room. We waited for several minutes and in that several minutes Ryan said "Calm down Momma" about 10 times. :)

{He always asks so sweetly!}

The doctor finally came in and it was the doctor who gave us the original diagnosis (we never know who we are going to see until they walk in). We actually had not had this doctor since June. It ended up being a really good thing because he was able to compare the tumor at the beginning to now.

He sat down and got right to it, which I was very thankful for.

No growth.

No spreading.

PRAISE GOD!

I was so fearful of growth and spreading and so incredibly thankful that they were able to say definitively that it had not done either of those things.

{Happy}

{Relieved}

So that was the good news.

The other news (not bad news, just not good news) is that the chemo did not do much. The MRI from May and the MRI from last week do not show any noticeable difference. However, the PET scan shows the tumor to be somewhat speckled, which could mean that part of the tumor is dying or dead. And in that case, then the chemo was beneficial. Along with that, when the doctor examined Jackson, he felt the tumor to be much softer and more pliable than the last time he examined him in early June. The doctor said he definitely felt a positive change in the tumor. So it is very possible that parts of it are dying. We are very hopeful that this is the case. They will not be able to say for sure until the tumor is out and sent to pathology.

Since the chemo did not do anything significant (that we can tell right now), the doctors determined that surgery is the next step. They feel that it was good that we did the chemo even if it helped just a little. Actually, the chemo kept it from growing or spreading, so the chemo did do something positive, but they think doing another 10 rounds would not be beneficial enough to put him through it.

We talked to the doctor for awhile about different things, one being that we will probably have to do some radiation after surgery. Then he sent us over to talk to the surgeon. Thankfully, he was willing and able to meet with us right away.

We got into his office and just went over the basics. The procedure, the concerns. LOTS of concerns. The actual mass is near vessels, nerves, his bladder, lymphatic tissue, his hip bone and pelvis. There are lots of possible situations that may come up during surgery, but he won't really know until he is in there. My stomach is turning just thinking about it so I don't think I am going to be able to type out all of our fears and possible scenarios, but please be prepared to pray with us that day!!
We will need all the prayers we can get.

{Of course we hit up the 'Toy Story' after such a long day at the hospital}

Surgery is tentatively set for August 23rd and we will be there a few days.

We are confident in our surgeon (and our God!). He is a really thorough and we actually met with him in the hospital in May. He has two boys also, the same ages as ours.

Overall, it was a good day! I will always take the positive news, no matter how big or small. My main focus is that the cancer will be out of his body very soon!!

THANK YOU all so much for praying with us and for us! It means the world to us. We still have a long, scary road full of unknowns ahead, but right now we are thankful to have this important step behind us!

Give thanks to the LORD, for he is good; his love endures forever.
Psalm 118:1

PET scan {that wasn't}

2010-08-09T16:12:00.005-05:00

Oh what a day.

This morning we got up at 5, got dressed and ready, loaded bags and kids and headed to my moms to drop off the baby.

Then, we drove 45 minutes to North Dallas.

Next, we made our way into the Children's building, after finding a new way due to construction.

After getting inside, we waited, played, got vitals checked, answered the same 100 questions that were answered Thursday, waited some more, played some more, and read some books, all while telling Jackson No, we can't go home yet and No, you can't have any milk (heartbreaking).

And THEN. A sweet little lady walked out and called our name. So we start to stand up and gather our stuff to head back.

But oh no. She motions for us to sit. And starts talking. About how the machine was not working well this morning.

She should have stopped there.

Because next she told me that they did not know we were coming(!!) so there was not an anesthesiologist prepared to sedate Jackson. Obviously, someone at some point, did not follow through. Enter angry, frustrated, upset, not happy AT ALL Momma.

I am sure I would have been less upset had the only issue been the machine, because that is completely out of anyone's hands. But the other issue? Avoidable, 100%. I can't help but be irritated at the unknown person who made that mistake. Whoever it was, it was their lucky day. If that mistake was the only thing holding us back from moving forward with this process, I am pretty sure Ryan and I would have been hunting that person down. We were devastated when that little lady told us we would not have answers today.

Either way, it doesn't matter. It was not meant to happen today, no matter how much effort we put into making it happen. It's not our timing, or our plan, which is frustrating at times like this. Times when you are DESPERATE for an answer.

We had the option of trying again at 4:00 today, but Jackson would have had to stop eating at 9:30am and there was no guarantee that the machine would be working. He had already been put through enough and that is entirely too long for a 2.5 year old to not eat or drink. Bless his heart, he dove into his little box of snacks once we figured out the scan wasn't happening.

He was also pretty stoked to dig into a HUGE cupcake that we picked up at the hospital bakery on the way out.

Thankfully, Jackson got to plan in another new area of the Children's building and he is looking forward to going back and playing again.

We go back tomorrow. Our PET is scheduled for 11:00. I talked to the anesthesiologist so he knows we are coming. :) We have to be there at 9:00am which maybe allows for more sleep, but we will be waking Jackson up at 4:00am to eat before his 5:00am cutoff.

We meet with the doctors at 3:00.

I know I have asked for prayers a lot lately, but please pray that tomorrow goes smoothly, for Jackson to have no discomfort, for us to receive positive news, for patience and understanding. We are so grateful to have your prayers.

Be still in the presence of the Lord, and wait patiently for him to act...
Psalm 37:7

MRI

2010-08-06T17:46:00.005-05:00

Thank you all so much for your prayers yesterday. We felt them!

It was not a fun experience, but we were prepared for that. We have not heard anything as far as results and really, we did not expect to. Both scans were originally supposed to be on Monday, and our clinic appointment is Monday afternoon, so all along we knew we probably would not know anything before Monday. At our clinic appointment we will find out results from both scans and talk with the doctors. If they had called today with results, I'm not sure I could've answered the phone. I'm mentally prepared for Monday.

Please surround Jackson in prayer on Monday morning at 9:30 when he goes in for his PET scan. This is a 2-3 hour test. Also, please pray for us during our meeting with the doctors at 2:30 Monday. Most of all, please pray that the scans show improvement!!

{I'm ready Momma!}

{Momma's not quite as ready}

{First time in the new Children's building}

{View from the 1st floor looking up...such a peaceful environment}

{Hangin out inside a tree}

{Such a cool area to climb and play}

{Checkin it all out}

{The nurse said he had gorgeous eyes and I agree!}

{Talkin with Daddy}

{He was in such a good mood!}

{He asked so politely to push the bp button!}

{Checking out the cool playroom}

{Getting Cars stickers...Jack gave them all away...so sweet!}

{Downing apple juice in recovery}

{A stop at the 'Toy Story'}

{Not phased at all by the events of the day}

{wordless wednesday}

2010-08-04T19:16:00.003-05:00

{That's his 'BRING IT' face}

{MRI in the morning. Please keep us in your thoughts and prayers.}

Count check, scans and 5k

2010-08-03T14:36:00.007-05:00

We headed to the hospital yesterday for a count check (so much for a week off!). His counts are low (750) but that is to be expected considering he just had a big chemo.
They will drop more before heading back up.

The appointment was pretty quick and there is not much to note (weight was down a tiny bit and bp was fine) except that his port was a little weird when the nurse accessed it to draw the blood. She said it felt and looked a little different to her and he actually said "ouch" when she poked him. He didn't say it like he was in pain though and she felt confident that it didn't hurt him (I'm sure she has seen some pretty big, ugly reactions).

One of the doctors also gave us some more pictures from his MRI in May. He keeps telling me he will email me the PowerPoint of all of the images, but he hasn't (he must be busy or something haha). The pictures show just how big the tumor is. They are still just laying on the counter because neither Ryan or I really want to look at them, and I still don't have any darts to throw at them :(

{LOVED the airplane}

{Found a Superman sticker!}

{Beautiful boy}{Name that song!}

{He wanted NO help with his shorts}{Notice the popped collar haha}

{Green sucker, of course!}

{Hanging out with Gram}

{The trains are working!}

*************************************************************************************

Today the hospital called to schedule scans. At first I was told that the earliest that both scans could be done back to back is Friday the 13th. Umm, NO! Not on Friday the 13th and not 4 whole days after when we thought they would be. I cannot wait that long.

After some tears and some begging, the (really) nice man was able to schedule the MRI for this Thursday at 8:00am and the PET for Monday at 9:30am. If you could surround Jackson in prayer during those times, I would be forever grateful.

We also have a clinic appointment set for Monday at 2:30 to see the images and possibly hear from the doctors what our plan is going forward. Again, if you could surround our little family in prayer during that time we would so appreciate it.

I feel like we have waited for this for so long (a summer can be an eternity, especially with small boys that you can't take anywhere!) but now that it is here I am very nervous. I am certain I will not be able to breathe while we are waiting for the results.

***************************************************************************************

Now, information on the Heroes for Children 5k.

I have formed The J-Team!! Yay! I am very excited.

Alot of you have asked on Facebook or via email how to register so here are directions:

Go to www.heroesforchildren.org

Click on the 'Events' tab and choose HFC 5k

It will open a page with info on the 5k. On the left side there is a yellow button that says 'Click here to register online'. Click!

That will take you to active.com to actually register. Click on the green button near the top right that says 'Register Now'.

Once you do that it will take through a series of steps. When it asks you to choose your team, you should find 'The J-Team' on the list!

A few more things...

If you have already registered for the HFC 5k, but would like to be apart of The J-Team, just let me know and I will get you added!

The $20 that you pay when you register will go DIRECTLY to families in need.

You get a t-shirt from HFC with your registration. This is not The J-Team shirt.

Please comment here, on Facebook or email if you would like a J-Team shirt for the 5k. This is NOT a fundraiser for Jackson. It is simply a way to show Jackson how many people love and support him! Once I know how many people would like a shirt, I will contact the shirt people for a final price (it's dependent on quantity). Please let me know if you would like one by August 8th.

You can chose to fund-raise for Heroes for Children. You will see this option during your registration. If you fund-raise $150, your registration is free! It's pretty easy to set up a donation site.

Even if you cannot participate in the walk, but you would like to help in some way, you can donate HERE. All money raised goes directly to help families of children with cancer in Texas.

Please, please help if you can. Every dollar counts! People have been so kind to us during our journey and I know just how much ANY kind of support means when you are on the receiving end. Families all over Texas will benefit from your donation or registration for the walk!

And do not forget to do good and to share with others, for with such sacrifices God is pleased.
Hebrews 13:16

Round 10

2010-07-27T21:55:00.000-05:00

***I am wiped out and exhausted so I was going to just do a picture post, but I want Jackson to be able to read all about his journey one day and know all that he endured. Please forgive any typos and I hope it all makes sense...Momma is tired!!

Round 10 was yesterday and we celebrated! We are SO thankful that we now have 10 rounds of chemo behind us. In some ways these 10 weeks have been so drawn out and in some ways they have flown by.

The next two weeks are pretty much a waiting game. The scans (a PET scan and an MRI) are tentatively scheduled for Monday, August 9th. We should meet with the doctors that same day or the next day to discuss the next step--surgery, more chemo or radiation.

We go back next Monday for a count check only, which is a bummer because we thought we were getting a week off. His counts yesterday were much lower than normal at this stage (last time he had big chemo his counts were at their highest since starting chemo) so they want to check his counts again next week to make sure he doesn't need a blood or platelet transfusion.

Thankfully, his counts were high enough to get treatment--but it was close. We just weren't expecting that since they were SO high at the last big chemo. The doctor said the change in the pattern we were used to is likely due to how much chemo he has had...the further along we get, the more unpredictable his counts are from what I understand.

He also pointed out that his reflexes are mostly gone due to one of the chemo drugs. They should return as soon as we stop chemo. The same drug is known to cause joint pain and he does complain of his legs or hands hurting occasionally.

We had a lengthy conversation with one of the doctors about recurrence rates, which scans to do in two weeks and how the process works for testing after they consider a patient to be in remission. I have some issues with the spacing of the remission scans and feel like some of the information they have given us is conflicting. I fully realize they are way smarter than me and this is their job, so they probably know best. BUT. This is my baby and I am just not at peace with it. So, while this is not something that has to be resolved right this minute as he is not in remission (although hopefully we will be there sooner rather than later!!) it is bothering me. Most of the things we talked about were fairly upsetting because they were harsh reminders of how serious our situation is, but he did say a couple of positive things.

When we first got to the hospital, we went up to the 6th floor which is the floor we stayed on for 3 days when Jack was first diagnosed. At first, he was fine. He saw the huge Chipmunk statues, the fish tank and some new toys. Then we turned the corner to go towards the nurses station. BREAKDOWN. He lost it. He has never had such an immediate reaction to something. It was so upsetting for him--he must have thought we were staying. We calmed him down and he was ok, but unsure, after that. He wanted to be held and I was happy to oblige. We went down and visited with the head nurse and asked a few questions about donating books and toys. Jack wouldn't talk to her, but he was very happy to tell her "Bye!" and get outta there!

There were some definite low points to the day, but we still celebrated our sweet boy and his big milestone. I am so proud of him. He is the bravest boy ever!

{Happy day!}

{Chick-Fil-A to start our celebration!}

{Sneaking a drink in the waiting room}

{He found Woody and immediately put him into the school bus}

{Being independent and insisting on taking his shoes off all by himself!}

{Weight was down a tiny bit, but still over 35lbs}

{BP was great}

{So happy after pushing the button}

{Open wide}

{Reflexes}

{Singing to pass the time}

{Coloring to pass MORE time}

{So brave}

{Checking Woody's reflexes}

{Checking out the goody bags full of Smarties and Lifesavers for the doctors and nurses--another part of our celebration}

{Convincing Dr. Goldman to share his candy}

{Coloring on a Toy Story paper}

{Coloring on his hand}

{Skis for feet}

{So handsome}

{Giving Nurse Eryn her goody bag}

{Celebratory cupcake}

{DONE!}

{Leaving with balloons}

{Toys R Us on the way home for being SO brave}

{BATMAN!}

After we got home, Jackson played for hours with his new Batman and Batmobile! He LOVES it and that makes me love it--loud noises and all. We were all beat from our long day and thankfully Jackson did not get sick. He did today though which caught me completely off-guard. However, after some crackers he was back to himself, playing and trying to wrestle with his brother!

Thank you all so much for your prayers yesterday and the past 10 weeks!! Please keep them coming! Knowing we are not alone is so helpful. We are nervous and scared for what the scans will tell us but our faith is keeping us afloat in the sea of unknown.

And without faith it is impossible to please God...
Hebrews 11:6

the wonder of water

2010-07-20T20:51:00.005-05:00

Brayden had so much fun during bath tonight! He is at such a good age and he is constantly discovering something new.

I love that kid so much.

Today has been a pretty good day. My mom watched the boys for an hour and a half and treated me to a massage, the boys have been happy and Teen Mom is on! I am a sucker for that show.

I am feeling very blessed and optimistic tonight. Faith is chasing my fear away.

Prayers are much appreciated for our big day coming up on Monday.

Every good and perfect gift is from above...
James 1:17

Faithful and Fighting,

Round 9

2010-07-19T16:22:00.007-05:00

Round 9 is in the books!

Weight was great, bp was perfect, counts are pretty good (but still neutropenic) considering how low they have gotten before at this point.

As always, Jackson was the bravest boy ever. No tears, minimal fussing. He kept us laughing and smiling.

He passed the time by playing cars and using his port tail as a microphone. That boy loves an audience.

{I love this picture because he's watching his Daddy}

{He gained a little over a pound! Momma's proud.}

{Expert button-pusher}

{Getting better at sitting still for bp}

{Such a brave boy}

{Twins}

{I ♥ these boys}

{I ♥ this one too}

{♥}

{Examining the airplane Dr. Lenarsky gave him}

{Insert boy noise here}

{And here}

{Trains, trains, trains!}

{Out}

{Milk and a movie}

When we were leaving we passed the "meeting room". Inside was a new family. In the split second that I laid eyes on the mom, I recognized the confusion and pain on her face. How is this happening? My child is healthy, what are you talking about? WHY?

Not even two months ago that was us in that room, getting our world turned upside down.

Ugh. Remembering that day...hurts.

We are still up and down emotionally. We have good days and not-so-good days.

Thankfully, most times Ryan and I don't have the not-so-good days at the same time.

If I can keep my head above water and not think of all that my baby has endured and will endure, then I am fine and can function pretty close to normal.

But sometimes I slip below that water line...and I struggle.

I struggle with so many things, but mostly with the realization that this is NOT going away.

This is our life now. Forever. No going back.

What in the world did I get upset or mad about before? I don't know. It feels like a lifetime ago.

Whatever it was, it pales in comparison to the kind of hurt I feel now.

This is real stuff, people. And it all scares me to death. Completely takes my breath away.

Thankfully, I have a God that loves me, that loves my baby more than I do. And He has a plan.

Knowing that is what gets me through.

{That and Jackson's funnies. He just asked me if he could get INTO the TV. He wanted to dance with the Fresh Beat Band. FUNNIEST KID EVER.}

For I consider that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us.
Romans 8:18

Faithful and Fighting,

Mmmmm...brownies!

2010-07-15T19:17:00.005-05:00

The other night, a sweet friend dropped off dinner and brownies. Brownies are Jackson's (and maybe Momma's) favorite! He LOVES them.

Exhibit A.

{Post-brownie last summer}

Typically, we don't have just one batch of brownies. We normally eat them in twos or threes. As in, finish one batch...make another. There are worse things, right? :)

We come by our brownie addiction honestly...my Grandma always keeps a pan of brownies for my Grandpa. I could count on one hand the times I've been to their house and there were no brownies!

Well, we finished the batch my friend brought over. So tonight, Jack helped me make brownies for the first time. He did great!

Meanwhile, Brayden had his first taste of a biter biscuit!

Round 9 coming up on Monday. Please keep us all in your prayers. We are joyful, yet nervous to be so close to the end of treatment. It's scary not knowing what our next step is. But, we know God has a plan!

As always, we are SO appreciative of your prayers and positive thoughts!

Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go.
Joshua 1:9