Tuesday, June 29, 2010

Round 6

Jackson did AWESOME yesterday! I taught him how to say "I'm awesome!". Because he is. We may have to work on humbleness after this ordeal, but I don't care. He IS awesome and amazing and strong and inspiring and so much more.

We got to the hospital a little early so Jack was able to play in the little play area downstairs for a few minutes before we went up. He has a blast running around and climbing the steps and checking out the trains.

Once we got up to the clinic, we had to wait a bit which meant more playtime! Jack loves playing with all the toys in the waiting room. There is a huge couch that he climbs and a big giraffe that he tries to ride and fishies (tishies as he calls them) he talks to.

When it was our turn, he got weighed (same as last week--we will be working hard to gain back that half a pound this week!) and got his blood pressure taken. When Nurse Eryn wasn't looking, Jackson very quickly pushed the button to start the blood pressure machine! He even got the right one. Stinkpot. Thankfully, Nurse Eryn thought it was funny too. His blood pressure was fine this week after two tries.

Next, it was time to access Jack's port. So far taking his shirt off to get to the port has been the hardest part of getting treatment. After some brainstorming with another mom, I went and bought some button-down shirts. I have NO clue why I didn't think of that before because it worked perfectly! He seemed to have no anxiety and he didn't fuss AT ALL! Normally it takes two of us to get his shirt off--he is strong. So thankfully, it was much smoother with the button down.

After the port was ready, Nurse Eryn took his blood and sent it down to the lab to be checked. Jackson played cars with Daddy to pass the time. He also used his port "tail" as a microphone and serenaded us with "Twinkle Twinkle Little Star" and "ABC's". Then Dr. Ghisoli came in, examined him from head to toe and answered my 800 questions with complete kindness and patience.

His counts came back and while they are low (560), they are not nearly as low we expected them to get. Typically, two weeks after he gets his big chemo his counts bottom out. Yesterday was two weeks since big chemo, and the last time we were at that point his counts bottomed out at 120, so we were expecting them to be in that range. Thankfully, they weren't! That means we don't have nearly as far to go in order to be able to receive treatment next week. His counts must be 750 when we go for big chemo. We are so thankful that we have been able to stay on track with his treatments and we are very hopeful that we can continue to be on track.

Another thing I am thankful for is how calm Jackson has become with all of the processes that he goes through at the clinic. When we first started going weekly, it was a struggle to even get him on the scale and taking his blood pressure was a traumatic event. Of course, I wish he didn't have to do all these things so often, but I'm glad they don't cause him as much stress as they used to. Because, unfortunately, we will be doing all of it for awhile.

He is my hero and every day I am more and more proud of him. I can't wait to tell him all about how he kicked cancer's hiney when he is older!

We go back Tuesday for big chemo. Like I mentioned, his counts must be at 750 in order to receive treatment. He got sick from big chemo last time, so please start praying now that he doesn't get sick on Tuesday.

Next week will be Round 7--we are getting close to the end of treatment and I can see the light at the end of the tunnel!

As always, we are SO thankful for your thoughts and prayers!! Please keep 'em coming!

{On the way up}

{At the top}

{I ♥ trains!}

{So many toys!}

{"Mommy can you put me on the giraffe??"}

{Favorite toy of the day}

{"Look at that tishie! He's hiding!!"}

{Being silly on the couch}

{Pushing the BP button}

{And then trying to take the cuff off}

{Getting his temperature taken}

{Playing cars while waiting for counts}

{Sleepy baby brother}

{Singing into his "microphone"}

{Chillin' with his new friend, Pablo from the Backyardigans}


Sunday, June 27, 2010

on my mind

I had a ton of pictures to show off and a happy, upbeat post ready...but I'm just not feeling it tonight. I have a lot on my mind and I hope that getting it out will help.

I'm feeling overwhelmed, anxious, sad, blah. I think everything seems worse at night, and last night especially was rough for me and brought out all these negative feelings. I'm worried about his big chemo next Monday and the possibility of him getting sick again. I'm nervous about the scans coming up in a few weeks. I'm scared about the results. If we have to do more chemo, I just don't know how much of an effect so much chemo will have on his little body.

Something that I have struggled with since we got home from the hospital is the reality of all of this. Most days are fairly normal. Yes, he has scars, he has a chemo port, his hair is gone--but he acts normal. He runs and jumps and plays like a normal two year old. He still throws fits and tells me he doesn't want to eat his carrots.

I am VERY thankful that Jackson feels well enough to do these things. But, at the same time, it's deceiving. Because in between all that running, jumping and playing are little taps on my shoulders (or slaps in the face) of reality. A dose of medicine or a higher than normal temperature that has me worried or a playdate we have to turn down because his counts are low.

Every time reality strikes, my stomach just drops. Of course I never forget that he is sick, but sometimes Jackson seems so normal that my thoughts don't revolve around what's taken over his body and our lives.

People ask why this happened. I don't have a clue. It's awful and horrible and I hate it, but I don't have any answers. We are too busy fighting it to question it and I really don't have the time for it. God has a plan and this fits in there somehow.

SO many people have been so kind to us. We appreciate it so much. For those that have continually checked on us, you will never know how much it has meant. I think some people just don't know what to say so they just...don't. But to know that people are thinking about us and PRAYING for us helps so, so much. Sometimes we feel alone and isolated so feeling that support is very helpful.

My heart has just been heavy the past few days. Not only for my family, but so many others. Megan, Sam, Jed, Monkey. Please add them to your prayer lists.

I read a few of my favorite verses earlier and I truly found some peace and comfort in God's word. If you have a favorite verse that speaks to you, please share!

Tomorrow is Round 6. Please pray all goes well!


Thursday, June 24, 2010

I don't want to forget

{Jackson edition}

How you say "Thanks!" every time I change your diaper or put clean clothes on you.

How you sing along with the Nick Jr. songs, then turn around and say "I'm a great singer."

How you LOVE your baby brother and that you say "Hi baby brother!" every morning.

How you pick up a book and every single page begins with "Once upon a time" and you make up the rest.

How you want to know how to do everything on your own now; you say "Can you show me how to do this?"

How you dance like a maniac.

How you are already STRONGER than I will ever be.

How you always want to touch Momma's belly...no pacifier or blankie for you, your comfort is Momma's belly.

How you say "So, what are you doing?" when you are trying to avoid sleep.

How you want to listen to Rudolph the Red Nosed Reindeer year-round.

How you "help" me with Brayden, patting his back, feeding him or trying to carry him.

How you say "I love you" at random.

How you ask us if we are your best friends and tell Brayden he is your best friend.

How you tell us "I'm Batman!" Although last night, you were Superman, then SuperBatman.

{Brayden edition}

How you are so incredibly sweet.

How you display your need for control by flipping over when I'm changing your diaper.

How you always want your Momma.

How you laugh hysterically at your big brother.

How you said MaaaMaaa before DaaaDaaa...your brother was the other way around.

How you are a crawling machine; sometimes you crawl with your head down and you crawl really, really fast to get to Momma or Daddy or brother.

How you LOVE you some teething tablets.

How you clap and get excited for Yo Gabba Gabba.

How you love wrestle time with Daddy and Jack.

How you have your own funny, sweet, awesome personality at 9 1/2 months.

How you snuggle into my neck.

How you love playing cars (or anything really) with your big brother.

How you are Momma's twin...according to Daddy.

How you have the best toothy smile.


Tuesday, June 22, 2010

Round 5

Yesterday was Round 5 of chemo. We are now halfway through the treatments of this twelve week cycle. Week 11 is a break and Week 12 we will go for an MRI and CT scans to see if chemo has done its job. Results will determine our next step--more chemo, radiation or surgery.

Monday was also exactly a month from the day Jackson was diagnosed. In some ways it feels like a lifetime since that day and in others it feels like five minutes ago. I remember feeling like the world stopped that afternoon.

Jackson did great yesterday. He had a blast playing outside Sunday night so he slept really well and woke up Monday morning rested. He had a big breakfast and then watched Thomas in the car on the way to Dallas.

I also woke up rested and I was not nervous. I was very thankful to be feeling very upbeat and positive. Of course, as soon as we got onto Central Expressway and got closer and closer to our exit, I started sighing. I swear I do not even realize I am doing it. Ryan always says "Stop your sighing!". I'm so glad he puts up with me.

We got to the clinic and waited for a bit, then it was our turn. He got weighed (down about half a pound from last week) and got his blood pressure checked (it was normal this time). Jack was very happy to get a Spiderman sticker from Nurse Ginni within five minutes!

We answered the normal questions and asked a few of our own. Jack ended up getting sick again a few times on Saturday night and we made sure to let them know about that. I was also concerned about his port--it seemed to be more red than normal and sticking out quite a bit. It was working fine, so the nurse thought it was just because he has lost a little weight. Half a pound isn't much at all, but when you only weigh 35 lbs it is!

Next--the shirt. Still the hardest part! He does.not.want. to take off his shirt. It normally takes two of us to get that done. We finally got it off and Nurse Ginni accessed his port and drew some blood. Jack was not thrilled at this point but once we were able to get his shirt back on (over his port) he was fine.

We waited on the bloodwork for a few minutes. Jack colored in his Scooby Doo coloring book, played cars with Brayden and managed to score three prizes during that time! Dr. Lenarsky brought him a book of construction paper (which he promptly opened and asked me to draw the Mystery Machine from Scooby Doo) and some play-doh. Dr. Goldman let him choose from the prize drawer and Jackson chose a Shrek watch. So he was a happy (and possibly spoiled!) boy!

The bloodwork came back and his counts are 740. So we are on moderate lockdown. All of the other things they check--his platelets, his white blood cells, his hemoglobin--were at the lowest they have been since we started chemo. I asked if all of the numbers were normal. Silly me! Of course they are not normal, but they are within the expected range for our situation. Just another reminder that we have a new normal. And that doctors are really, really smart but sometimes their social skills are lacking.

While his low numbers are kind of a bummer, it does mean the chemo is working. It is breaking down the cells in his body. However, until we have the scans we will not know if the chemo is doing its job--breaking down the BAD cells. You can totally be working but not doing the job you are supposed to!

After talking about his counts and the risks we face this week, he received his actual treatment. He took it like a champ and we were ready to go! We were in and out in about an hour so overall this visit was not too bad.

Next week, we expect his counts to be at their lowest again. Typically, two weeks after his big chemo (which was last Monday) his counts bottom out, so we will be on full lockdown that week. We plan on going in for a count check that Friday to see if they have improved enough at that point for us to enjoy the holiday weekend.

Thank you for all of your prayers that yesterday would go smoothly! They worked. Maybe next week we should all pray that he will not be anxious about shucking his shirt!!

{"Daddy I wanna hold your hand"}

{Playin' and waitin'}

{Poppin' the bubbles!}

{A color for each hand}

{Momma love}

{Lovin' his new watch}

{Checkin' out the trains on the way out}

{I love the joy on his face in the reflection}

{Big brother duties call!}

The Lord gives His people strength. The Lord blesses them with peace.
Psalm 29:11


Monday, June 21, 2010

Good morning!

Today is Round 5 of Chemo. After today we will be halfway done with this cycle of chemo. Next up will be scans. Results will determine where we go from next.

Please say a prayer that all goes well today! I will update later tonight or in the morning.

Annddddd, things look different around here huh! Katie at Fancy Pants Design Studio hooked me up and I love it! I am still working out a few kinks in my spare time (ha!).

Have a great day!


Friday, June 18, 2010

the bee and the beast

Last night my mom and I took the boys to the park.

Jackson loves loves loves the slide. He will climb the stairs, slide, jump off, run back to the stairs...over and over and over.

After some good sliding, next we moved onto the swings. I tried to get him to swing on a big-boy swing, but he wasn't having it. He knows he can go higher in the toddler swing!

B got to swing too and he LOVED it.

We made our way back over to the slide. Jack was mid-slide when he spotted the bee. He DOES NOT like anything that flies--birds, bugs, etc--so he was not happy. Not in full freak out mode, but clearly wanted the bee to get away from him. NOW.

I was just a step away from him so I grabbed him off of the slide. That bee was persistent and it followed us for a minute. I realized it was attracted to the Dr. Pepper I was holding so I threw it away.

I do not like to be separated from my DP. I was not happy!

After losing the bee, Jack and I rode the tire swing just the two of us.


Despite the bee incident, our park outing was an overall success. I was very glad to get the boys some fresh air and play time.

On the way home, I started thinking about that bee (still mad about my DP I guess. ha!). I thought about how I grabbed Jackson to get him away from the bee. I remembered that when he was upset I told him "Mommy's right here, I'm not gonna let it get you".

I'm pretty sure that is a standard Mommy line and I don't think I really thought before I said it--it's just instinct. Mommas will do ANYthing to protect their babies. And we want them to feel safe and secure knowing that their Mommas will take care of them.

But really, how was I going to keep that bee away? I thought about that in the car and realized that I really couldn't promise Jackson that nothing would get him. My logical side knows that nothing I did caused his cancer--but still, as a mother, part of me feels like I have failed. I let something get my baby.

I am a worrier by nature, I have been my whole life. Of course, becoming a mother did not help my worrying any. I could lay awake all.night.long and worry about all the awful things that could happen to my loved ones. Small things, big things, anything and everything--I have worried about it.

Strangely though, I never worried about this particular beast. I never, ever thought I would have a child with cancer.

But I do. He's mine and I will protect him. I will do whatever I can to beat this horrible beast for him and with him.

I know that worrying does not help anything, and I have seriously tried to let go of the habit.

God is in control and I need to let Him do His job.

Who of you by worrying can add a single hour to his life?
Matthew 6:27

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.
Matthew 6:34

Wednesday, June 16, 2010

Our evening outside

{Before I know it, he'll be driving a real car!}


{Sweet brothers}

{Brayden had his dinner al fresco!}

{"Adios Mommy!"}

{Takin' a break}

{Mr. Fix-it}

{So serious!}

{Jack calls this his "trouble face"}

{These teeth hurt!}

{Those eyes!}

A sweet friend came by tonight and brought this shirt for me...

I love it!

Her husband is battling esophageal cancer and they go to treatment every day. Please pray for them! As always, thank you for keeping Jack in your prayers!



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