Tuesday, July 27, 2010

Round 10

***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}


{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}


{Leaving with balloons}

{Toys R Us on the way home for being SO brave}


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


Tuesday, July 20, 2010

the wonder of water

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,


Monday, July 19, 2010

Round 9

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}


{I ♥ these boys}

{I ♥ this one too}


{Examining the airplane Dr. Lenarsky gave him}

{Insert boy noise here}

{And here}

{Trains, trains, trains!}


{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,

Thursday, July 15, 2010


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



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