Thursday, September 29, 2011

It's the little things.

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.

Wednesday, September 28, 2011

No news.

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.}


Wednesday, September 21, 2011

Déjà vu.

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.



Sunday, September 4, 2011

On your 2nd birthday.

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

Friday, September 2, 2011

Flashback Friday: Thomas 2010

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!Photobucket

Wednesday, August 31, 2011

A year ago.

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.}

Photobucket

Tuesday, August 30, 2011

First day.

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!!

Photobucket

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