Jackson's story

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

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

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

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

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.

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!!

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

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

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