At Home

...and resting!

It will be a quiet New Year for me.

-Jennifer

Hospital Update

Greetings from Virginia Hospital Center. The surgery went well yesterday and I awoke without nausea and morphine drip that worked wonders. Since I've had no nausea, I'm feeling good this morning and will be discharged within a few hours.

Thank you to so many of you who prayed yesterday for me and family as well as offering us good old logistical support. We feel so blessed at this moment to have all of you in our lives!!

-Jennifer

Under the Knife...

The MRI of the spine came back normal. Good.

I'll be at the hospital in about an hour getting ready for surgery. It is set to begin at 8:30.
Thanks for all the words, emails, and cards of support.
More prayers needed for surgeons, nurses, anesthesiologists, Carson, Francesca and Paul.....

Ready to get this behind us......

One day I want to tell the story in past tense with a good ending .....

To borrow from a Seinfeld episode "Remember that time when this family was fighting cancer?...yada yada yada... it all turned out OK"

-Jennifer

A Whirlwind of Santas!

I don't know if the past week and a half will ever be topped. Following United's Fantasy Flight we have been on a whirlwind of activities - all of which brought an abundance of presents. And the presents weren't just for Carson, either. Francesca made out like a bandit, too! And all of this has me wondering...will our kids ever learn the value of giving instead of receiving?

Christmas will never be the same.

A few days following the Fantasy Flight we attended a dinner extravaganza courtesy of Teardrops to Rainbows. Enter Santa and gifts. Two nights later we had the pleasure of attending Believe in Tomorrow's annual volunteer appreciation dinner in Ocean City, MD. Enter Santa and more gifts. Of course, being on the eastern shore, we had to stop off an Mancinis - where Carson unexpectedly received several more model cars for his collection!

Two days later, the 19th Hole Grille in Ocean City hosted several Believe in Tomorrow families for a breakfast with Santa...which, of course, included more gifts. And to top things off, a few days later Ipads4Cancer presented Francesca with new Vera Bradley bag and Coach purse...and Carson with a brand new Ipad! (Many thanks to BLR Holdings for working with Ipads4Cancer to make this special day possible!!)

In Medical News...

Carson's trip to the clinic on Friday was uneventful. His ANC was still higher than what the protocol desires, so his weekly chemo was upped slightly. (The daily chemo remains the same.)

In the past two days Jennifer has visited her GP, reconstruction surgeon, and physical therapist. The results from Monday's MRI are at the breast surgeon's office, but we haven't heard anything - which we are praying is a good thing. If the results of the MRI are okay, she'll proceed with surgery (mastectomy) on Wednesday morning (12/28).

"Thank You" is simply not adequate...

While our lives would certainly be a lot different without leukemia, breast cancer, and diabetes, we see ourselves just as normal everyday family going through life's challenges with God's help. In fact, we think we are a lot like everyone else. So, when others lift us up and shower us with kindness and mercy, it really catches us off guard. You'd think we'd be used to it by now, but we aren't. In fact, every time is like the first time, with all the emotions being stirred up anew.
The generosity of our friends and complete strangers continues to overwhelm us.

We consider each and every one of you a blessing to our family!!

Paul.

One down, more to come...

Second MRI is done. Plastic surgeon scheduled again for Friday for more decision making.
Appointment for pre-op screening being made.
Things are moving, but no surgery scheduled yet. Hopefully in the next few weeks.

Thanks to all those warriors who continue to support us, sustaining us spiritually and physically!

Jennifer

Uncertain Decisions

So, yesterday was a consultation with the plastic surgeon and another visit to the breast surgeon.
I thought I'd have it all figured out now and the truth is I really don't. I did, however, make an initial decision and then, like the brave person that I am, headed off to Ocean City to try and not think about it anymore! Who knew the Believe in Tomorrow House by the Sea would be a respite for me as well?

At the plastic surgeon's office and breast surgeons office we pieced together the choice, "How much boob do you cut and what can the plastic surgeon do to put me back together?"

Some choice..............

At the end of it all, given consideration of my life's circumstances, my age, and my mother's own fight with breast cancer, I think I've made up my mind.

There are still some more pre-surgery hurdles to jump through.

• An MRI of the spine scheduled for Monday evening to check something they couldn't make out while doing my first MRI. (Not expected to be anything concerning.)

• Pre-surgery evaluations to be scheduled with my General Practitioner

I'm ready to get it over with. Meanwhile, the beach is calling.....

-Jennifer

Negative

God is Good!

The biopsy I had last Friday of a 2nd suspicious spot has come back negative. So, unless the MRI I had yesterday says differently, it looks like I will have an easier road to travel.

I meet Friday with the surgeon to discuss everything.

Thank you so much for your continued prayers and support.

-Jennifer

Patient Updates

I guess my short updates will be a bit longer these days as two updates are required.

Carson

Clinic visit yesterday. He is feeling great and looking fabulous. Vincristine, pentamadine went on without a hitch. Prednisone pulse has begun. The counts are still too high. We will reach in to uncharted territory and raise the 6MP to levels we've yet to see. I await the counts crash, but am hopeful it will not occur.

Jennifer

MRI today went smoothly. No word on the 2nd biopsy results. I will not hunt them down to tell me. I have another appointment with the breast surgeon on Friday and she can just tell me then.

Interesting questions I have asked myself lately......

How do you best explain DCIS (Ductal Carcinoma In Situ)? It is Stage Zero cancer, considered pre-cancerous, but treated just like you have cancer?

How many doctors and nurses does it take to treat DCIS? I have lots of helping hands. Carson's doctors and nurses, my own docs and nurses.... I am high maintenance!

What is the appropriate attire for a breast biopsy?

What is the best thing to wear to an MRI?

How much chocolate do you actually have to eat to feel better?

Fantasy Flight 2011

What a whirlwind of a day! We woke early this morning to head to Dulles airport for a special flight to the North Pole. Yes, the REAL North Pole!! Of course, the excitement was palatable. Carson was up and dressed way before any light in the house came on.

The flight to the North Pole was courtesy of United Airlines, Children's Hospice International, and Believe in Tomorrow. We had VIP parking, a dedicated check-in and security counter, entertaining elves, and yes, a ride in a Boeing 777 to the North Pole to visit with Santa! This was a very special 777, so it only took us 30 minutes to get to the North Pole. Check out the photos:

At the North Pole we were greeted by choirs, musicians, elves, team mascots, princesses, and the Chick-fil-A cow. Santa (and Mrs. Claus) spoke with each of the children and provided Carson with a very nice bag full of presents. Santa even told Carson he'd be sure to bring the Lego Police Station with him on Christmas eve. Talk about service!

For those who are wondering...this was a real flight. We had real boarding passes - destination North Pole. The North Pole was listed on the departure status screens throughout the airport (see pics). Passengers from other flights were even taking pictures of the screens. We REALLY took off and flew for circa 30 minutes, with the exchanges between the captain and North Pole "air traffic control" piped over the intercom for the kids to hear. Oh, and our seats were in business class. Sweet!!

For the record, I'm not sure what the official ground roll-out for take off was...but with no luggage/freight, little fuel, and an average passenger weight of circa 80lbs, a near empty Boeing 777 can get off the ground in less than 5 seconds!! In speaking with the captain afterwards, he said they actually look forward to this flight -it's a lot of fun to fly!

A HUGE Thank You to United Airlines, Children's Hospice International, Believe in Tomorrow, and the other organizations that helped to put this event together. As far as single events go, this was one of the biggest we've ever seen.

And judging from the smiles on all the little faces, it was a huge hit!

Paul.

Biopsy and the Weekend

Biopsy all done with absolutely no problems and little pain during the procedure. (The after procedure pain is a bit of a different story.) Results early next week.

Tomorrow we'll all be visiting the North Pole thanks to Believe in Tomorrow, United Airlines and Children's Hospice International. We'll explain more about it in a future post - however, those of you in the local Washington DC area should watch your local news. There will be lots of special kids taking this special flight, and fortunately, we get to go along!

-Jennifer

More Tests to Come

First of all, thank you for the many, many messages of encouragement. Once again we are humbled by the outpouring of love and support from those around us. We are truly grateful and thankful for each and every one of you!!

We met today with the breast surgeon, but we have a few more steps to go through before surgery. The mammograms a few weeks ago showed several spots. Most were considered to be calcifications, but one was suspicious enough to be biopsied. Since that particular biopsy came back positive, the doctors want to biopsy another spot before we can narrow down treatment options. Any treatment will require surgery - probably in early January. What type of surgery and what treatment follows is still up in the air.

As it stands today, the second biopsy will take place on Friday (12/9) and an MRI on Tuesday (12/13). Because of Jennifer's age (a young 41) and coupled with the fact that her mother had breast cancer, the doctors also suggested genetic testing. That was a simple saliva test, but having it covered by insurance can be problematic. We'll have to see what happens.

So the only thing we are really certain of at this point is that it's in God's perfect hands. What better place could there be? Keep praying!

Paul.

Appointment Set

Thank you all so much for your prayers and encouraging words. It really is helping us.
Please keep it up.

I have an appointment with the breast surgeon at 2:00 this Wednesday.

-Jennifer

Here We Go Again

So now that both of our children have major medical issues, I guess it was only a matter of time before Jennifer or I joined their ranks. As it turns out, Jennifer got there first. Yesterday we learned that a recent biopsy came back positive for breast cancer.

Here we go again...

All indications point to an early detection of the most common form of breast cancer. It appears small and contained and the biopsy samples responded well to common treatment therapies. What does all this mean?? Actually, we have no clue...other than we need to see a surgeon next week to find out what the treatment options are.

In the meantime, life goes on...

Ok, this goes back a couple of weeks, but Francesca served on a panel of pediatric oncology patients and siblings for a Leukemia Lymphoma Society conference for care givers to kids currently in treatment. The audience was comprised of several hundred nurses, teachers, parents, etc, and Francesca was up front with five other kids answering questions.

Francesca takes the microphone and wishes she had her guitar so she could sing, too!

Last night we went out to eat (Jennifer's parents happen to be here visiting).

Trying to keep our minds off the recent news...

This morning Francesca joined our friends Martha and Melissa for the Hot Chocolate 5k this morning. Temperature at the 8am start was a balmy 32 degrees, but they persevered and had a great race. Jennifer was supposed to have joined them, but was side lined due to a stress fracture in her foot. (Let's see - breast cancer, bone fracture, continued knee issues from running...what's next? Reading glasses??!??) Carson continues to do well and has a birthday party to go to this afternoon.

Prayers needed...

All in all, despite the current situation, we continued to feel blessed. With Carson's diagnosis we wondered what God was trying to tell us. (Sometimes we still do!) With this we are asking that same question again. Are we working on an advanced degree or are we in remedial training? And more importantly...WHAT IS THE COURSE?

Please pray for Jennifer and our family...that this next week goes smoothly and that we keep our eyes, ears, and hearts open to God's message for us.

Paul.

Clinic Today

Another short clinic visit today: ANC up to 3000. 6MP will go up as well.
We'll go back to the clinic in two weeks and see which way the counts have gone.
Up or down? Place your bets now.

-Jennifer

Birthday Week

Birthday Week last week. Carson now has to use two hands to show his age....he is now 6. Francesca is no longer barely a teenager....she is 14.

.......and now we move directly into Thanksgiving. Have a good one everyone!

Here are a few photos:

The big gift.....The LEGO Fire Station

Why use 14 candles? Just the numbers please....

Sexy Lady

I knew that Carson was a different person than Francesca. I knew that he was even more different when he asked two days in to Kindergarten, "Do I have to go to school AGAIN today?" I knew going in to last week's teacher conference that I should not expect it to be the same as Francesca's teacher conferences have been.

All these things I knew in my mind became definite reality when one of Carson's teachers said the words "Sexy Lady". Here are two words I thought I'd never hear in a parent/teacher conference!

But let me back up a moment: I should first point out that Carson is doing really well in school. Both classroom teachers and his special ed teacher are extremely pleased. He is just a tad bit behind, but has made incredible progress in the first three months of school. What they've been doing at school, and what we've been doing at home is working. So....we'll keep doing it.

In class, Carson is popular with his peers, talkative, positive and easy going. Everybody is loving him.

I guess Carson was really feeling the love one day because, according to his teacher, he started referring to one of his female classmates as "sexy lady". (No, we cannot begin to tell you where he heard this!)

This continued on for a bit before the girl went and told the teacher, who tried very hard not to laugh. She called Carson over to her desk. He arrived all happy and completely oblivious to the situation. At this point he was told "Carson, I know you probably meant it as a compliment; but in Kindergarten, you should probably not refer to girls as "sexy lady". Do you think you could say something else nice to your friend?"

Carson replied "Will you be my friend?"

What can I say? It's different having a boy.

Jennifer

Nothin' but Pictures

We can't seem to manage a post with words, so we'll try pictures.

We went to King's Dominion.......compliments of Growing Hope.

We drove race cars.



We drove trucks.......



We drove old time cars......

Francesca also got to ride a few roller coasters, in case you were wondering.....


Then we managed to be "Incredible" at our church's Trunk or Treat...........

The Mini helped us transport the Evil Robot and baby Jack Jack.


And Edna dropped by during the evening as well.....



Carson continues to do well both in and out of school. The spinal tap today went smoothly, the meds will remain the same, and he'll head back to school tomorrow.

-Jennifer

IV IG Complete

Carson is full of immuno gammaglobulins and feeling great. The infusion went smoothly and we managed to not get sick beforehand - even with a trip to King's Dominion on Saturday. (Pictures coming soon)

My cold is subsiding. Now, our only problem is the large scale paper mache project that is taking over the garage as we prepare for our church's Trunk or Treat. This better work....plan B is not an option I want to employ.

This is the kind of problem I prefer to have however.....

-Jennifer

IGg

The Clinic called yesterday to report that Carson's IGg (immuno gammaglobulin) level was low. This makes it difficult for him to fight off viruses - and of course, I'm fighting a cold.

We will return to the clinic on Monday to get an infusion.
Here's hoping we don't see the ER this weekend!

-Jennifer

It's Time Again

It was time for another clinic visit again yesterday. Time for the all important counts check, Vincristine, Pentamadine and steroids.

So here's the run down....

The counts fell, but still are too high. Carson checked in at an ANC of 3720
Vincristine and Pentamadine were administered.
Steroids were started. Time for a trip to the grocery store.

It's also time to up the oral chemos to get the counts down a bit. 6MP will increase by 25 mg and methotrexate will increase by 2.5 mg. That's it, but it will probably have a big effect - we've got a sensitive guy.

Next appointment: Halloween!

-Jennifer

Paying Twice

We have hit a smooth spot with Carson's treatment right now.- No illnesses, no low counts (in fact they are way too high), no visits to the ER. Praise God!

Time to relax a bit? Are you kidding? As I am now finding out, getting through treatment is just the beginning of this journey. Now it is time for some major work. Time to begin Operation Carson Catch Up. You see, Carson has not only paid his cancer dues with his body, now he's paying again in other ways. He has some issues, both cognitive and physical. How much of it is a result of treatment, how much of it is a year spent doing nothing but clinic/hospital, and how much of it is a stubborn 5 year old boy is yet to be determined.

Luckily, there are some great people to help him both at school and in the community.

At school, he has an Individualized Education Program (IEP). This is the result of extensive testing he went through and a series of meetings over 4 months to determine how best to help him.

So, 4-5 times a week Carson has an extra reading group at school to work on writing, phonics and reading skills. This is in addition to the regular reading program that he participates in while attending class.

A half hour a week, Carson receives some occupational therapy at school to help him with his fine motor skills. The goal here is to make it easier for him to write.

Another half hour a week is spent receiving instruction in concentration and focus strategies - usually during a class activity.

And I should mention here, that Carson receives a lot of attention and help by his regular teachers and Special Ed teachers who are already in the classroom. Just one advantage of a small but wonderful school system!

Outside of school:
Once a week Carson sees Ms. Rachel for speech therapy where he learns social skills, strategies for retaining instructions in his working memory, use of descriptive language, and practices his processing skills (how to get the thoughts he has in his mind conveyed to someone else and how to receive instruction and carry it out.)

At home, we "have school" every night after dinner. We review how to write various letters, what sounds they make and play games to increase his memory skills. This includes weekends. We also work throughout the evening and days on issues that the speech therapist has asked us to concentrate on - remembering "who, what where", telling stories in an organized way, etc.

We have seen great progress in Carson in just a few short weeks and are very encouraged.

Earlier this summer, Carson had a round of neuropsych testing on top of the testing he went through via the school system. Results of that were quite disheartening as it seemed to say that he has definite cognitive impairments that would probably not be overcome. I am not ready to make such a judgement on a 5 year old. Just as with our cancer treatment, with God's help, we will do the best we can, we will do all that we can, and we will tell our own story. Our course in life and Carson's course in life will not be predetermined........

-Jennifer

The Report

Clinic Visit.

ANC very high. 6220

6MP goes up......MTX stays the same.

Check again in two weeks.

All else going well.

Is it Steroids Week?

Is is Steroids week? Hmmm....let's see, today went something like this:

Breakfast: a bagel
Lunch: 2 plates of bread sticks from the local pizza buffet
Dinner: biscuits

Add in the nonstop talking and you have your answer: It's definitely a steroids week.

Paul.

Kindergarten Update, Counts and a Race

Yesterday Carson had his first full day of Kindergarten. Check off another milestone! Following that, he had his first "sports class". The coach ran them around for a good 45 minutes through an "agility course". He was all smiles after each activity, then melted down from pure exhaustion about 7:00. He was promptly put to bed. I had to wake him up at 7:30 this morning so he wouldn't miss the bus. Luckily, Wednesdays at Kindergarten are only half days. The boy can catch up on some rest. He has chosen to do so by watching a "Curious George" marathon.

Monday at the clinic was again a repeat of "Carson's Continuing Counts Saga". A week out from his virus and ER visit, his ANC came in at about 3000. Too high, so the 6MP dosage will rise and we will watch and see. Vincristine, Pentamadine and Prednisone were administered as well. We are on Day 3 of steroids and so far; it looks like Carson will be living off of Honey Nut Cheerios during his steroid week.

In other news Francesca completed her first 5K in the Falls Church Education Foundation Race for the Schools. Paul ran with her and they were still speaking to each other after it was over. So....it was a good run!



Hope everyone has a great rest of the week!
-Jennifer

Kindergarten Can Wait

Kindergarten can wait....at least until Tuesday. Monday Carson will be at the clinic for a follow up dose of IV antibiotic.

Ahh, I love a dose of cefepime and a Bruder catalogue in the morning!

Good news though: Counts are high. We will go home and follow up with the clinic tomorrow. No hospital.

Thanks for all the prayers this morning!
-Jennifer

Official

I was supposed to be writing about Carson's first week of Kindergarten, but instead I'm sending a quick update. It's official, school and all its germs are in session. Carson is headed to the ER with a fever. His counts were high just over a week ago, so we are hoping for the same result. That would mean a "quick" trip through the ER and no admit to the hospital.
More later.

-Jennifer

Tears/Rerun

I'm not normally a crying person, but this darn cancer has me weepy at times I wouldn't expect. This week's tears found me at Kindergarten Orientation crouched next to Carson's school supply basket - there was his name neatly written on all his perfect and yet untouched sets of crayons, markers, scissors and pencils. So Beautiful!!! I couldn't help but think about how two years ago we weren't sure how long we'd have with our guy, or what the next days would bring, and here we are at Kindergarten!!! I'm so glad God gave us this moment to cherish!

Carson with Mrs. Hof (She was also Francesca's Kindergarten teacher!)

Our clinic visit this week was pretty much a rerun of those past. The ANC has risen some more, so we will add more 6MP and return in two weeks. I'm not sure how the start of school (plus all the germs) and an increase in meds will turn out; but as usual, we will know soon.

-Jennifer

Carson Invades Ocean City, Narrowly Escaping Hurricane Irene

The week before Irene hit Ocean City; there was a slightly smaller storm known as Carson that made its way through. We hadn't really been planning on a vacation this summer, but we got one anyway. Yea! A few weeks ago Believe in Tomorrow notified us that they had a last minute cancellation in Ocean City and asked if we were interested. Uh, yeah!

Unfortunately Francesca was in Texas - which some might argue is a more desirable destination - but with her blessing Carson, Jennifer, and I headed to Ocean City anyway.

We played in the surf.

We visited the Coast Guard station.

Played on one of the boats in dry dock....


...and took the 47' er out for a spin. (Cool!)

Carson and the Coast Guard Team, all thankful to be back on land after Carson took the wheel!

Carson studied at the Believe in Tomorrow School of Management with an emphasis in Being Boss. Here he is working on one of his homework assignments: "How to sit at the computer and look busy". Mr Wayne, the expert in this area, really took Carson under his wing to teach him everything he knows! HA!


We learned to make a pizza at Mancini's. Gabi, the owner, gave Carson (black chef hat) and another BIT friend a personal lesson!

The pizza was delicious, of course, as was all the food at Mancini's. We highly recommend you visit if you are ever in Ocean City, or Fenwick Island, DE. Check it out here!

Our fun only lasted until Aug 18 though. We had to be home because Carson was scheduled for a spinal on the 19th and Francesca was due home on the 20th.

In a few words, spinal went fine. ANC count was up, so the oral chemos are going up as well.
Carson is feeling great. Francesca arrived safe and sound from Texas.

And finally, to summarize the rest of the events around here.

• We, along with my Italian ceramic umbrella stand, the plantation shutters, the walls and the couch, discovered Beckett was afraid of thunderstorms. He now has a prescription for doggie Xanex.

• We survived the 30 second earthquake that hit on August 23rd. The large Italian ceramic plate in the living room did not.

• Four days later we "survived" Hurricane Irene's fierce 30 mph (yes, 30 mph) winds and our yard survived all the rain without flooding thanks to a new catch basin that Paul installed just days before.

With all of this, I'm wondering what September will bring?

-Paul and Jennifer

No News =Good News?

Writing this week from a relatively calm perspective for a change. Francesca is having a great time in Texas. She's doing it up right, learning to shoot guns and drive a Suburban with her cousins.

Don't come in her room without permission!

Carson had this week off from the clinic, so we have passed our time at the pool and in other non productive ways. We have been gloriously ignorant of his counts for a good 7 days now. Next appointment is August 19 when it will be time to begin another maintenance cycle with a spinal, chemo, antibiotic and steroids.

More later................

Have a great weekend everybody!
-Jennifer

Make it Count

THE Counts
Clinic yesterday. Carson's counts are up, but we are keeping the chemo dosages the same! Check again in two weeks, when it will be time to kick off cycle 7 of maintenance with a spinal tap, chemo, antibiotics and steroids.

Another count for Facebook users - VOTE

The parents of our hospital buddy Declan, who lost his battle with cancer just before his 1st birthday last August, have a foundation called Journey 4 A Cure. They are seeking to improve the lives of childhood cancer patients and fund much needed research.

Facebook users, won't you take a few seconds to help them win $250,000!??? 100% of this money will be used to fund groundbreaking, promising research for people just like Carson. Let your vote be counted - come on, this easier than voting in an election!

This takes just a few seconds and you can do it every day from now until the end of the month. Your help is desperately needed to close the gap between J4aC and the leader.

Click here to get started.

Thank you for your support.

-Jennifer

Pick Up and Go

Pick Up

We retrieved Francesca up from BRaSS Camp (Brothers and Sisters of cancer patients) today. She exited the bus and immediately started in with story after story of her adventures. Somewhere in there she declared that it was "a good camp", which is Francesca's way of saying it was terrific. Thanks Special Love for this great week.

Go

When Francesca left for camp, we immediately arranged for her to visit both sets of grandparents and her cousins in Texas from Aug 5-20. Yup, we're sending her away again......is that wrong??? When all is said and done, she will have spent nearly two months away from home this summer. She should have a good "what I did this summer" essay when school starts again.

Carson has a clinic visit on Tuesday - once again we'll temporarily answer the eternal question of "What has happened to the Counts?". It sounds like a country song of sorts. Other popular titles include "Stabbed in the Port and You're to Blame" (Bon Jovi version), "Stuck on the IV" (I think that was made popular by Lionel Richie, right?) and the frequently sung but lesser known "I've Got Friends with Low Counts" as sung by Garth Brooks.

Hope everyone is having a great weekend!

-Jennifer

Hello and Goodbye

We said goodbye to Francesca on Monday as she headed to Student Life Camp with our church. We said goodbye to Chuck and Grandma on Tuesday as they headed back to Texas after a week long visit.

We said hello again to the clinic later that day for counts check and chemo. Good news on that front for the time being. Carson's ANC was around 1200 and everything else, like hemoglobin, platelets, etc. looked good. We actually get to keep 6MP and methotrexate doses the same for 2 weeks now before we head back and check again. Meanwhile, we had our vincristine push, our IV antibiotic and started our 5 day steroid pulse.

Now we wait to say hello to Francesca when she returns from camp - then goodbye again on Sunday as she heads to BRASS camp (camp for BRothers and SiSters of cancer patients).

On Sunday, we'll also say hello to Paul's sister and her 3 boys who will stay with us a for few days.

Let the summer continue flying by.......

-Jennifer

Another busy week (s)

As is usual, when things calm down around here, it's time to start wondering just how long you have before the next crazy, busy cycle begins again..... it wasn't very long in this case. This time though, I do admit, some of it was my own doing.

We managed to get Francesca off to Italy thanks to the help and patience of Paul's mother who arrived a few days before she left. Then, Paul and I managed a 25 hour respite in Baltimore, thanks again to Nona. Ahhhh, a bit of calm.......

Before our little get a way though, and unbeknownst to Francesca, we headed up to Maryland and adopted a new dog from Mid Atlantic German Short Hair Pointer Rescue. This GSP is male, between 3 and 5 years old, solid liver colored and came with the name Beckett. He is also the complete opposite of Shade (our first adopted GSP)- not afraid of all people and children, curious, and not prone to hiding under the bed. We've had him almost 3 weeks now and he has settled in really well. Francesca arrived home from Italy and gave her stamp of approval to him despite the fact that she was not consulted in the decision making process. Shade says she has yet to make up her mind about him, although she is now spending more time out from under the bed and today, she actually came downstairs to greet all of us.

The new addition: Beckett "no, I'm not a chocolate Lab" King

Shortly after Nona left, my parents arrived and we began to make some plans to do some sightseeing. Short lived plans......

Carson began to run a fever the day after they arrived and we proceeded to have two unplanned clinic visits back to back. The good news out of this is that a) my parents were here to help and b) Carson managed to get sick during business hours which meant no ER! On the first visit we learned Carson's ANC had jumped to nearly 9000, which meant he was definitely fighting something off. Bring on the IV antibiotics and blood cultures. On the next day's visit his ANC had dropped to 1500, his immunogammaglobulin level was 298 and blood cultures were negative. Bring on more IV antibiotics and add an IGg infusion. At least we said goodbye to that fever and our little guy was feeling good.

And then, Francesca arrived home: unpacking all her stuff, brimming with stories and proving that jet lag and teenagers don't mix. Seriously though, she had an absolutely fabulous time. Thanks to the Palomos for hosting her. Now we begin packing up for Student Life camp on Monday.

That leaves today and Grandpa Chuck's 70th birthday. We finally got a little sight seeing in at Fort McHenry in Baltimore and more than an earful about cannons, soldiers and prison from Carson.

As Carson was jabbering on today, Francesca gave me one of those looks like "I wish he would stop". That's when I broke the news to her that Carson's neuropsych testing revealed that he needed some help with expressing himself and that we should be encouraging him to talk more and to include even more details and descriptions. As I picked Francesca's jaw up off the floor, I began to ponder "What did these psychologists/psychiatrists ask Carson to talk about in order to come to their conclusions?" Did they ask him to talk about cars, Legos and law enforcement or was it fuzzy animals and flowers? Seems to me, he can talk a blue streak about things he is interested in......but I digress....

Carson and Chuck pose.....and can you believe, they wouldn't do a 70

gun salute in honor of Chuck's birthday?

"Oh, say can you see?,
By the dawn's early light....."

Enjoying the flag demonstration, complete with soldier in the background....

Tomorrow we head to church.....thank you God for another busy week and the help and energy to survive it!

-Jennifer

Two Wonderful Years

Day 730 of a 1,278 day treatment program.

Today marks two years since that day we went to the ER and were told Carson has leukemia. Two years of hospital stays, doctor visits, pokes, various chemo cocktails, radiation, neurological tests, and more chemo. Two years of ups and downs.

However, despite what seems to be an emotionally draining roller coaster, we've made many new friends. We have been witness to - and the recipients of - tremendous love and support.

We've had two more years of "I love you's", two more years of giggles and tickles, two more years to snuggle up at bedtime, two years to witness important milestones like the first day of preschool, the first tooth being lost and the first solo swim in the pool. A precious gift indeed!

And most of all, we have watched our superman and other kids just like him go through things that no child should have to endure and do it with strength and character beyond belief. Time and time again I find it's the kids teaching me a lesson.

We still have a ways to go. We are two years into our three and a half year treatment and we're still trying to determine the right dose of chemo for maintenance....the cycle we started more than a year ago. But, we are thankful for where we are. I look around and can't help but to feel blessed. Thank you, Lord, for being there to comfort and provide for us!

Paul.

Tuesday Clinic Visit

Short and mostly sweet today!

• Cortisone shot in foot for Jennifer at podiatrist - BAD

• Counts check at Clinic - GOOD - ANC 1580

• Increase 6MP and Methotrexate very slightly - TBD

• Francesca enjoying herself in Italy - GOOD

• Enjoying ourselves at the pool on a hot Virginia day - GOOD

Hope everyone else had a good day too!

-Jennifer

Homeopathic Dosing/Francesca Travels the World

We're really proud of Francesca right now. She left for Italy yesterday. Traveling alone, she transited the airport in Zurich, got a new boarding pass, went through security (with diabetes supply filled backpack), and got to her gate on time to make the connection to Venice.

She was met at the airport by our friends the Palomos and we received an email entitled "The Eaglet has landed". Let the fun begin in Italy.....and let the peace begin at home :)

Before the Eaglet made her maiden voyage across the ocean, Carson went to the clinic for a counts check. ANC is up, but dosage of 6MP and Methotrexate is going down.

Dr. L is referring to this particular dosing schedule as homeopathic because he'll be getting so little of the chemos. To be exact, 1/4 tablet of the 6MP - a new record for us and just 2 tablets of methotrexate (also a new record). What can we say? The boy is sensitive to the meds, even the small doses effect him.

We go back again to see how the current dose is working out. If counts are still down, we are considering just sprinkling him with 6MP dust and calling it a day......!!!!!

-Jennifer

The Return of Mr. Low Counts

I thought Mr. Low Counts would be away for awhile. I thought he would take a nice vacation to some place called "preschool". I thought I might be able to clean out a closet or two and possibly the playroom while he was absent. I even dared to think I might have a moment or two to myself and a chance to string two thoughts..... in a row...... together.

I thought wrong.

Mr. Low Counts loves me. He wants to stay with me always. As he says, "I'm Mama's Boy". As if to highlight his determination to remain, Mr. Low Counts became Mr. Very Low Counts. (ANC 190)

Mr. VLW, as he will now be referred to as, does have one thing going for him though. He's pretty cute and knows just when to throw in an "I love you Mama". How can I be upset??

Just how permanent is Mr. VLW?? We will find out next week when we return to the clinic. In the meantime, we'll have more quality and quantity time together.

-Jennifer

Moving Up

Another day, another transition....

This time it was Francesca. She is officially NOT a middle schooler anymore; she is a high schooler, at 8th grade no less. (That's the way they do it here in our Little City)

Since Mary Ellen Henderson Middle School is now a thing of the past, there was a Moving Up Ceremony to mark the occasion. There was "pomp, circumstance " and one little brother to really embarrass her.

"The Official Moving Up Handshake"

Right before the ceremony, Carson performed his brotherly duties when he waved and waved and waved at Francesca. Then in his best stage whisper said "Sissy (no response from Francesca)....Sissy (again no response)......Sissy (she does her best to ignore him) .....bolus." (Reminding her to administer her insulin is one of his greatest joys in life) Francesca was not too pleased, but a lot of people sitting around us thought otherwise.

At the After Party......the stress of 7th grade behind her, Francesca cracks a smile

Transition back.....
In other news, Carson's counts are back up somewhat. Yesterday he came in with an ANC of 630 after the manual count - a little lower than expected considering he hasn't had any chemo for a week - but high enough to restart 6MP and Methotrexate.
If you're thinking that the restart of the oral chemos will be at a reduced rate, you'd be right. His doc would rather him have something rather than nothing (and we agree). So here we go again.....I swear sometimes I'm living in an episode of "Groundhog Day", only this time, there is no cute ground hog, there is nowhere to hide when I see my shadow; and the humor has a definite medical component.....This story line, I believe, would not translate well to the silver screen.

Carson could have cared less about all the talk of counts and chemo; he was busy with Legos. Mrs. Margy gave him "6 year old Legos" while we were there and he was so proud that he put it together (with some help). He talked all the rest of the day about how he is 5, but he put together Legos for 6 year old boys.

Next week we're due for Vincristine, Pentamadine and yet another round of steroids. Carson is already thinking he'll need more 6 year old Legos to keep him busy.

Have a great weekend!
-Jennifer

Mr Low Counts

Today's clinic visit:

Dr. L: "Any aches, pains, fever, diarrhea or constipation?"
Me: "No"

Dr. L: "Has he been taking his 6MP and Methotrexate?"
Me: "Yes"

Dr. L: "Religiously?"
Me: "Yes"

Dr. L: "I can tell"

We are neutropenic again....ANC of 490. No school, no pool, no chemo, come back in a week.
A new twist developing to this scenario though....as Dr. L says "we have busted protocol"

Usually, when we are neutropenic, Carson's dosage is dropped in half, his counts rise too high and then we try and up the chemos, only to have counts crash again. This time, we're only going to lower his dosages by 10% or so and see what happens. Maybe a happy medium, lurking out there somewhere ???

Until then, just call Carson "Mr. Low Counts"

Pie

The beginning of June has us marking a special occasion: Carson has not had to visit the Emergency Room in two months now! Yipee!!

We still don't have his oral chemo dosages figured out; but that is easier to take when you're not heading to the ER once a month.

In other news: We had a quiet Memorial Day Weekend - even with a swim meet. We enjoyed visiting with our church friends and neighbors.

The highlight of the weekend was Francesca's decision to participate in the pie eating contest at the Student/Parent Cookout at church. She attempted to represent the 7th grade to the best of her ability; but alas, found out she doesn't like pie very much! So, her career as a professional eater is over before it started!

Go Francesca!

Say hello to Francesca's new profile picture for Facebook!

Have a great week everyone! We will be at the clinic on Thursday this week for a counts check.

-Jennifer

Let Round 6 Begin

Round 6
Maintenance Cycle Round 6 officially began yesterday for Carson with a spinal tap, chemo, IV antibiotics and the start of steroids. The ANC count was up in the 800's, so it is also time to restart 6MP and oral methotrexate.

Before that though, we had another busy weekend, a swim meet and some fun stuff.

Last Saturday, we attended the Growing Hope picnic and were treated to all kinds of great things....food, gifts, friends and play time. Carson had been home with low counts, so getting outside and seeing some of his friends was a terrific treat.

We continue our total admiration of Growing Hope and the wonderful support they provide!

Carson and his buddy Jack battle it out with balloon swords. The battle only stopped when one sword or the other popped and a return visit to the balloon lady was necessary!

A brief time out to pose with pal Jade!

Now back to the clinic yesterday......

The spinal tap went smoothly, the only hard part was waiting until 11 to actually get started. You see, there were Legos on the line, fire truck Legos in fact. Take that, the later start time and a boy with no food or drink and you have a rather unpleasant combination. We survived though and Carson started right in on building the fire truck as soon as his port was accessed.

Like I said, the spinal tap went smoothly, "happy juice" was welcomed by Carson's usual giddy smile of anticipation; and as soon as he was allowed to sit up again....the Lego fire truck building commenced - again.

Neither sleet, nor snow, nor chemo, nor IV antibiotics will stop us from building!

To top it off, right before we left the clinic, Carson lost his second tooth.

Have a great Memorial Day Weekend!
-Jennifer

Neutropenic

A quick blood draw at the clinic today revealed that Carson is neutropenic (ANC under 500), manual count was 480 - that's the one not done by the machine and is always higher than the automatic.

Hold methotrexate and 6MP

We are home, home, home until the 26th...our next visit to the clinic.

-Jennifer

Hidden Talents

Our children have some hidden talents you may not know about. Does your child do this??

Take medicine without waking up?
Wake up later (say 3AM), come in to your bedroom and ask "Did you give me my medicine?"

Never wake while receiving a finger prick?
Drink an entire juice box without waking?

Perhaps if your child is taking 6MP or diabetic they do have these talents.

Carson has recently begun taking his 6MP about 10 at night, after he has been asleep for a few hours. This is the medicine where one cannot eat at least an hour before and after. Since the boy won't quit eating, we have been giving it after he goes to sleep. At first it was a little hard to get him to take it, but now we know Carson has honed his skill so well that he doesn't even remember taking it. Thus the question, "Did you give me my medicine?" The answer, by the way, was yes.

Of course Francesca is a seasoned pro, having had years and years of practice sleeping while meters, pumps, juice boxes and people sound off and scuttle about.

I think these are some rare talents; but I don't think you'll be seeing them on "America's Got Talent" any time soon!

-Jennifer

Legos and Teeth

Legos

Today's clinic visit was a testament to the power of Legos. Last week, with a Lego prize in hand, Carson allowed his port to be accessed with ease. This week, with another Lego prize in hand, Carson endured his finger poke with barely the slightest peep! ....and now we have the Lego police helicopter all built!

Sorry for the blur on this photo....I was using my phone to take it
and the subject was not that cooperative!

The ANC takes a fall...
Carson's ANC took a nosedive from 4000 two weeks ago to 730 today. Medications will remain the same; only this time, we'll go back to the clinic in one week to check counts again. This will give us a better idea of whether we've gotten close to that magic dosage, or whether we need to modify them again.

Other than the descent of the ANC, things are going very well. We avoided the hospital for all of April and Carson is feeling great. He even lost his first tooth!

We sure are thankful to reach milestones like this!
(and tomorrow we register for Kindergarten!!)
Note: Carson did not scare the tooth fairy off with this face. She visited anyway.

-Jennifer

More Fun at Ocean City

We were fortunate enough to be invited to the Believe In Tomorrow House by the Sea this last weekend. The occasion: The Believe In Tomorrow Gala. We were treated to a great dinner, live music and dancing. You can guess what we did....EAT!

Carson was on day 3 of steroids and immediately went to work on the chocolate fondue fountain complete with cookies, marshmallows and fruit for dipping. Francesca wasn't far behind, despite the fact that she does not have steroids as an excuse.....


We watched in awe during the fundraising portion of the Gala as the Ocean City community came together in their continued support of Believe in Tomorrow. There must have been 100 silent auction items garnering thousands of dollars; and the live auction portion was even more unbelievable. Thanks Ocean City and Believe in Tomorrow for your wonderful support!! We are truly appreciative!


We spent the rest of the weekend relaxing and going to the beach.


Carson's main focus was digging.





Francesca's main focus was "lounge-ing" and collecting sea shells.


On Saturday night we were once again treated to a TERRIFIC dinner, this time at Mancini's on Fenwick Island. Carson walked away with Star Wars toys from Mrs. Mancini and his very own chef hat (after creating and baking his own wood-fired pizza).

Jason helps Carson with the pizza cutter.

The perfect activity for a steroid boy.

Carson takes time out from eating to pose with Mr. Mancini.

On the way home the next day, Carson refuses to take his chef hat off and sleeps in it!

Finally, to top everything else off, we enjoyed a visit from Paul's cousin Nate and his wife Courtney. We, of course, used this as an excuse to go to the Dogwood Tavern.



Glad to be writing of some good times!
-Jennifer

Wednesday's Clinic Visit

We had a fun-filled, six hour visit to the clinic today. Yes...six hours, and we still managed to have a good time. Something must be wrong with us, right?

173 Pieces

Last week Carson picked out a new toy for his clinic visit prize. And we're not talking just any ol' toy. He had a Lego Prisoner Transport Truck complete with a police truck and driver and a bad guy on a motorcycle. The Lego box remained closed until the clinic visit. Which meant Carson was pretty much beside himself all week long. He couldn't wait to go to the clinic!

Carson was so excited. He pulled off his shirt as soon as we walked into the room to get accessed. He wasn't scared. He didn't scream when they stuck him with the needle. He was simply focused on the Legos!

We weren't planning on ASSEMBLING the Lego truck at the clinic, but when it turned out that Carson needed an IgG transfusion (immuno gammaglobulin), that's exactly what we did. He loves it...although he is more than happy to leave the assembly process to someone else. (Ah, the joys of Legos!)

Picture Day

In addition to the toy fun, Flashes of Hope was at the clinic. After a quick trip home to get a shirt that didn't have a picture of a construction vehicle (what a blessing it is to live so close to where we receive treatment!), Carson and Jennifer were on set having their pictures taken. Carson was really hamming it up, so we are really looking forward to seeing how they turn out.

Hamming it up for the camera...even while getting a transfusion. (Yes, that's a striped shirt and plaid shorts...we're hoping the pictures are from the waste up!)

Counting Blessings

Have we mentioned recently how truly blessed we are to have such wonderful medical care? I was at another doctors office last week and came across the Washingtonian Magazine Best Doctors 2011 edition. There were four pediatric oncologists in this year's edition. Three of them are on Carson's team. And the fourth is a former physician at the same practice. And it's not just the doctors. The nurses and staff are all passionate about their work and care so deeply for the kids. We feel so fortunate!

-Paul

Trip/Clinic

Warning! Proceed with caution. This entry contains nothing too exciting or enlightening; however, at the request of certain readers, I write.....

Yes, we were away. We visited the areas in and around Harrisonburg, Virginia while Francesca was on Spring Break. During the visit we hit 3 colleges/universities, two caverns, a potato chip factory and a presidential birthplace. If you ask Carson what was the best thing was, he will tell you it was the pool at the hotel.

The last clinic visit was again extremely short and sweet. ANC too high, IGG level a bit low. Carson's congestion is returning. Increase the chemo medications a bit and add some allergy medicine in to the mix.

It has been a few weeks since Mr. C got antibiotics, so it is time to have "snot nose" reappear. April is almost over and we haven't been to the ER yet, so maybe the addition of some allergy medicine will alleviate the congestion and get us through the month. So far, no change in congestion level, but thankfully, no visit to the ER. Unfortunately, the month ain't over yet...

We go back to the clinic this Wednesday for chemo, antibiotic, a possible "topping off" of IGG and perhaps we'll try a new allergy medicine.

In other news:

• We went to the circus!!! Thanks again to Growing Hope.
• The tulips I planted last fall bloomed and I have the allergies to prove it.
• A good time was had by all Easter.

We will update you more later after tomorrow's clinic visit - and we'll include some pictures too!
Thanks for your continued prayers!!

-Jennifer

Maintenance Year 1

We have officially been in the Maintenance Cycle for a little over 1 year now. Lots of ups and downs, but definitely easier than the first nine months of his treatment. The boy is doing great!

Here we are, while finishing the last phase of treatment....radiation. Note the skinny
little legs and arms.

Maintenance started just after radiation and just before Easter last year. At the start, Carson weighed 14 kilos (30.8 lbs), had no hair and was about 111 cm (43 inches).

On Sunday, Carson looked like this. Last week at the clinic, he weighed in at 24.4 kilos (53.6 lbs), sported above spikey hair and measured 117 cm (46 inches)!

God has been good to us!

-Jennifer

Opposite Feelings

Carson's clinic visit last Thursday was completely uneventful. Counts are heading DOWN, which is the correct direction right now. His ANC was 1500. Still mucking around with dosages....a small increase in the methotrexate to see if that pushes us closer to a steady 1000 mark.

We had our Vincristine push, we had our antibiotic infusion, we started steroids. An uneventful clinic visit is a good clinic visit.

At the same time, our hearts are breaking once again for another child lost to cancer. Please keep the Blairs in your prayers as very early Friday morning they lost their 8 year old daughter after a 4 year battle with neuroblastoma.

Words simply can't describe the feeling of being on opposite ends of the spectrum at any given moment. One child thriving and surviving while another's life is ending. Hope and happiness, sadness and pain intertwined at all times. How do you reconcile those feelings???

My only response so far is to remind myself that God has a plan - He is in control. I don't begin to understand, but will trust in His plan.

Proverbs 16:9
"We make our own plans, but the Lord decides where we will go"

and....
1 Thessalonians 5:18
"In everything, give thanks, for this is the will of God in Christ Jesus for you."

-Jennifer

Another weekend....

Well, another weekend came and went; and that means two things around here. A trip to the ER and a swim meet. And that's what we did.

Carson developed a fever in the wee hours of Friday morning. Chances are good that he caught my horrible cold that gave me lots of congestion and stole my voice for 5 days. We did as usual, woke Dr. Chao up at 4AM (she is unfortunately on call every single time Carson gets sick), packed a bag and headed for INOVA Fairfax. Paul took hospital duty since my germs and my non-voice would not be welcome in the hospital.

After the boys left, it was time for Francesca to get up for the swim meet. Warm ups at 6 AM in Maryland!!

Then, we did it all again on Saturday - although a few hours later for Carson. He went back to the ER for a follow up dose of antibiotics. (Did I mention, he never ran a fever once arriving at the ER??) and Francesca went to her swim meet.

Squeeze in a visit with friends on Saturday afternoon and more swimming on Sunday and you have a normal weekend at our house!

Paul has the cold now, and Francesca appears to be getting it......I don't think those two will need to go to the ER though. My voice has returned, just in case they do.

-Jennifer

Clinic, Hospital and Hair

CLINIC
Tuesday's clinic visit was fairly uneventful, except for the hour wait to see the doctor. That just happens. And now, thanks to our many visits to the hospital, we have lots of experience with waiting patiently!

Carson's ANC is still holding up and staying pretty high - it was 4100. By now, you know the next sentence I'll write, and probably the next one too. Yes, time to raise the dosages. Come back in two weeks to check again.

HOSPITAL
Today, we took the last load of toys and band aids to the hospital. Can you believe it took 3 trips in our Tahoe to get it all there? That is a nice problem to have!

Since our first visit, we've also had some cash donations and we were able to purchase an additional 53 boxes of band aids. That brings the grand total to 760 boxes!! Another nice problem to have! Although now that everything is out of my house, the hospital has that problem.

Our third trip to the hospital. The Tahoe just as packed as the first trip.

HAIR
Our friend Beth wrote us an email this week documenting her 9 year old daughter Abby's donation to Wigs for Kids. When Abby first learned of Carson's diagnosis, she began to grow her hair out. This last week she had 12 inches cut from her hair and sent off to help other kids who have lost their hair due to cancer treatment or other medical issues.

Before.......

......and after! What a cute haircut!

We continue to amazed at the examples of the goodness and compassion that arrive out of the blue and from all sorts of places. I see it so often now, why do I continue to be amazed??? I guess I am just amazed at how it keeps on coming. Over and over, one act after another, it never ends. I guess I've always imagined such kindness as a bucket, a bucket that eventually runs out. This journey has proven otherwise. It seems your kindness is a never ending chain instead! Thank you Abby for continuing that kindness chain! To see one child helping other children...WOW!!...it just melts my heart and puts a big smile on my face!

-Jennifer