The King Family - Daily Adventures in Chaos

We are Expanding

2012-02-09T14:43:00.004-05:00

Monday's spinal, chemo, antibiotic and IGg infusion with Carson went well, if you don't count the fact that this go round, the spinal was at the hospital, and it wasn't until 3. This required Carson to be without food or drink almost all day, but he did great despite his hunger.

I took the opportunity to fast along with Carson- praying for all our cancer family whenever I was hungry (which was a lot) You know what? I made it! And anyone who has been around food and this family knows it is hard for us to go without.

Carson made it too with his counts. His ANC came in great at 920, which is right where it should be. And now, we're going to try something never attempted before, expanding the time between clinic visits! Can you believe it? We now do not have a scheduled appointment until March!

I'm expanding too......

my waistline, thanks to the delicious food delivered to our door this last month,

.....and in the "too much information category"..... my bust line.

I have been to the plastic surgeon four times now and reconstruction is underway in a noticeable way....well, at least it is noticeable to me. Thank goodness for modern medicine.

Anyway, it is mostly good expansion around here...I pray your week expands before you in a good way too!

-Jennifer

The Mr. Update and More

2012-01-27T11:40:00.004-05:00

Mr.'s clinic this week was thankfully uneventful. Counts are still heading down, but not low enough - the ANC checked in at about 2000. So, we have a little further to go. 6MP dosage will be raised again and we'll report back in two weeks for the verdict. The amazing thing is that we are now approaching 100% dosing on both 6MP and Methotrexate - this summer his body could barely handle 10% of the suggested dosing. Go figure!

In two weeks Carson will also begin a new maintenance round, is it #8 or #9, I've lost count. It will be time for a spinal tap along with the steroids, IV antibiotics and Vincristine. This time we'll also add an IGg infusion since those levels are on the low side too.

Francesca finished up her very first midterms as a high schooler and we await the result.

Nona is here helping with childcare, laundry, grocery, you name it. I still find I get tired easily and just need to sit. In all other respects I'm doing well. Kind neighbors and friends are walking the dogs and bringing in food.

Paul continues to juggle all our doctors appointments and work as well as 4AM swimming carpool. It's tough on him, so say an extra prayer for him today if you can. We gotta keep that guy healthy!

-Jennifer

The Gift of Chronos

2012-01-15T10:47:00.015-05:00

I've become a fan of a certain blog on the fantastically funny disasters of life and raising young kids. I tell myself I can still read this blog. Even though I'm old, I do have at least one young child. Even though I also have a teenage girl, it is remarkably similar at times to having more than one young child.

I do really like this blog. It takes a humorous look at the joys and horrors of raising children, with a reminder that we're all struggling and it usually ends with a feel good, "now go get 'em, don't be too hard on yourself" ending.

Recently said blog posted a vignette about shopping in Target while her kids were running amuck and an older woman telling her "to enjoy every minute". The blog goes on to talk about how enjoying every minute is impossible, the doldrums of daily life and the fact that carpe diem is not necessarily the sagest of advice. A discussion of two types of time ensues

chronos: the simple marking of time and

kairos : the cherished moments when time slips away and you realize the value and importance of what's been set before you.

The ending of the blog closes by encouraging all us parents to "Carpe Kairos " instead.

After thinking it over for a few days, my response is Yes, BUT.......

Yes, I agree, BUT not entirely.

Two events come to mind.

December 1999 we spent two nights in the PICU watching 2 year old Francesca's blood sugar slowly come down and her diabetic ketoacidosis subside. While we were making plans about when our child would come home and how we'd begin life caring for a diabetic child, another child died each night on that ward.

July 2009, the day after Carson's diagnosis, we were walking the halls of the oncology ward early in the morning. Carson had a splint on his arm to keep the IV's straight, bruises marked his body from the lack of platelets, his shirt bulged with a swollen tummy from the dead leukemia cells crowding his liver and spleen, an IV pole dragged behind him as he rode the plasma kart.

Just in front of the elevators we encountered a couple heading to the PICU. The wife burst in to tears at the sight of Carson. Not because of the way Carson looked....they were on their way to end the life support their 3 year old son was receiving since he'd been brought in to the hospital after being found drowned in the swimming pool.

All these parents would gladly trade places with me, someone with the luxury of chronos time with their children.

"Carpe Kairos" is all well and good, but chronos is also a gift from God. I won't deny it, things get messy down in chronos time, but can't more kairos be found when we acknowledge that the chronos moments we receive are a gift too?

I suppose this smacks of the "quantity time vs. quality time" argument. Aren't they both important?

My friend who lost her 9 year old daughter to neurblastoma doesn't want to hear me complain about how "hard" it is during the daily grind with my children. She would love to have the same complaint.

My friend who lost her 12 year old son from an epileptic seizure doesn't want to hear it either.

I say this to myself as to anyone....

The temper tantrum at the restaurant is a blessing, the fighting and yelling between siblings is a blessing, the teacher conferences, the getting ready for church, the morning rush to school, the cleaning up of the spilled milk....

..............................a gift of chronos and the POTENTIAL for kairos.

How many times could my chronos moments have been turned into kairos moments with a change in my attitude and an acknowledgement of God's presence, even in that tired, agonizing, annoying moment?

I bought a t-shirt shortly after Carson began his treatment that reads "Today Matters". Simply put, it does. The chronos and the kairos together matter and one cannot exist without the other.

So, I can't say that I "enjoy every minute", or that every moment can be turned from chronos to kairos, but I don't have to wait for those kairos moments and then seize them. Those moments are already here if I take a moment to look around,

and they exist because of God's gift of chronos.

Update from the Patients

2012-01-10T08:55:00.004-05:00

Patient Number One
Carson had a visit to the clinic yesterday. He is doing great, but the ANC is still too high despite an increase in his methotrexate. So, now the 6MP will be raised, into uncharted territories, and we'll see in two weeks where that leaves us.

Chemo and antibiotics went smoothly, despite how his face appears in the below picture, and Carson occupied himself by painting and making cars.

Patient Number Two
I still have my drain despite pleas to the plastic surgeon yesterday. The drain will be with me now until next Tuesday. I suppose I'll have to name him. I think I will call him "Red". - descriptive, yet more more benign than "This (fill in the blank with an adjective) Drain"

Grandma went back to Texas today and we will miss her. She did so much for us while she was here, she is probably looking forward to some rest.

-Jennifer

Final Pathology

2012-01-07T09:50:00.002-05:00

Another weekend around here. Paul is with Francesca at the distance meet this morning, where she is swimming the 1000 yard freestyle - all at once - without stopping! 1000 yards! - as a race.....
Later today she'll swim at a high school meet.

I went to the breast surgeon yesterday for a follow up. I'm healing well and don't have to go back to her for 6 months! One surprise though: the pathology report revealed that I had a second area of DCIS in my breast that they did not even know about. Had they known about it, I would have had no choice but to go ahead with mastectomy. Or perhaps I would have been facing another DCIS diagnosis in another year. 10 days after surgery, it is looking like I made the right decision.

Grandma is still here and helping us immensely. I will never be able to come close to paying her back for all that she has done for us; and especially what she has done for us these past few years. The same holds true for all the other friends and neighbors who have been visiting, bringing food and walking dogs.

Feeling very blessed......
Jennifer

Good News

2012-01-03T12:23:00.002-05:00

Glad to report that the pathology for both the cancer and my lymph nodes came back great.
The margins were clear on the cancer and the lymph nodes were clear!

Thanking God that things are going just about as smooth as they could go right now.

-Jennifer

Somewhat Human

2012-01-02T15:50:00.002-05:00

After a tough day tummy wise yesterday, I'm feeling pretty good this 5th day after surgery.

Kids go back to school tomorrow and I think they will welcome the return of routine - despite what they say.

-Jennifer

At Home

2011-12-29T18:53:00.000-05:00

...and resting!

It will be a quiet New Year for me.

-Jennifer

Hospital Update

2011-12-29T10:42:00.002-05:00

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...

2011-12-28T04:35:00.003-05:00

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!

2011-12-23T19:05:00.008-05:00

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!!)

&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;a href="https://picasaweb.google.com/pquotes/SantaWhirlwind?authuser=0&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;feat=directlink#slideshow"&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;gt;Gallery&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt;/a&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;gt;

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...

2011-12-19T22:00:00.002-05:00

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

2011-12-17T08:59:00.005-05:00

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

2011-12-14T22:00:00.002-05:00

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

2011-12-13T17:33:00.004-05:00

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

2011-12-10T20:26:00.014-05:00

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:

Gallery

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

2011-12-09T21:23:00.005-05:00

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

2011-12-07T17:19:00.002-05:00

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

2011-12-05T10:22:00.002-05:00

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

2011-12-03T14:41:00.007-05:00

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

2011-11-28T20:52:00.002-05:00

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

2011-11-22T14:00:00.005-05:00

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

2011-11-17T10:22:00.003-05:00

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

2011-11-14T14:12:00.011-05:00

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

2011-10-25T20:39:00.003-04:00

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

2011-10-19T20:51:00.002-04:00

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

2011-10-18T08:55:00.002-04:00

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

2011-10-14T11:09:00.004-04:00

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

2011-10-04T07:55:00.002-04:00

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?

2011-09-24T22:36:00.002-04:00

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

2011-09-21T13:37:00.005-04:00

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

2011-09-11T11:08:00.004-04:00

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

2011-09-11T08:37:00.002-04:00

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

2011-09-04T08:20:00.004-04:00

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

2011-08-23T22:11:00.017-04:00

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?

2011-08-11T10:46:00.003-04:00

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

2011-08-03T09:24:00.004-04:00

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

2011-07-30T15:11:00.003-04:00

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

2011-07-20T08:02:00.003-04:00

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)

2011-07-16T15:17:00.007-04:00

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

2011-07-10T21:04:00.004-04:00

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

2011-07-05T19:35:00.002-04:00

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

2011-06-29T14:37:00.003-04:00

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

2011-06-21T19:22:00.004-04:00

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

2011-06-15T16:25:00.005-04:00

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

2011-06-09T16:42:00.003-04:00

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

2011-06-06T09:55:00.006-04:00

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

2011-05-27T10:11:00.008-04:00

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

2011-05-17T12:02:00.002-04:00

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

2011-05-16T13:37:00.002-04:00

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

2011-05-10T16:47:00.012-04:00

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

2011-05-04T09:30:00.013-04:00

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

2011-04-27T21:02:00.007-04:00

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

2011-04-25T11:50:00.005-04:00

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

2011-04-06T14:02:00.007-04:00

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

2011-04-04T13:26:00.004-04:00

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....

2011-03-22T11:58:00.003-04:00

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

2011-03-17T12:39:00.007-04:00

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

Totals

2011-03-11T13:17:00.010-05:00

Response to our band aid/toy drive has been SO INCREDIBLE that I had to take a load up there last week just to make some space in our living room.

Here are the totals:

707 boxes of bandaids (plus 4,000 additional bandaids from a local business)
56 Wii/PS2 Games
1,000 + toys and prizes

Thank you to all those who helped!!

Columbia Baptist Church Men's and Women's Bible Studies, youth group and church members
Columbia Baptist Church Child Development Center
Doodlehopper Toy Store and Jolie Smith
The Leukemia and Lymphoma Society's Team in Training
Neighbors and friends who dropped off items at our house daily

You guys rock!!

This is some of what we took:

The backseats removed, the spaces in between the remaining seats filled with sacks. The Tahoe was stuffed!

And this is some of what is still left at the house, ready to be delivered next week:

Sacks of toys and bandaids litter our living room floor.

Carson delivering some of the toys to Miss Holly, his favorite Child Life Specialist!

Becky, Francesca and Miss Holly. We loaded up the cart and each of us carried bags too. We were lucky to have Becky there with another set of hands!

Of course, this did not include the band-aids that came from Leukemia and Lymphoma Society Team In Training. They collected 340 boxes which we picked up at the Honored Teammate Picnic. Go Team!!

Ambassador in the making, Carson poses with Ms. Julie and officially accepts the band aid donation from TNT.

The Honored Teammate Picnic was featured on Patch.com. Carson was pictured in two photos.
Click here to read that article.

Have a great weekend everyone!
-Jennifer

Happy Juice Sadness

2011-03-04T07:15:00.002-05:00

Yesterday was the start of our 5th maintenance cycle. Time for a spinal tap. We reported to the clinic at 8:30 for the usual port access, blood work, and pre-procedure examination.

Carson's ANC was an amazing 5,000!!! That's high enough that he might actually be able to play at the McDonald's playland without getting sick......well, maybe not. Anyway, by leukemia treatment standards that ANC is way too high. More on that later.

After our exam, the main event of the day finally arrived....the happy juice! As with most other times, Carson had been asking about it since awakening that morning and this time was not any different.

The procedure went smoothly and quickly, the happy juice making Carson very, very calm and still. The part that didn't go as smoothly was afterward. As soon as Carson came around a little bit he asked "When am I going to get the happy juice?". When told that he'd already received it, and the procedure was over, he proceeded to pull his blanket over his head and sob heavily. Poor little guy, he didn't remember it at all! He didn't believe that it had been given to him!

The sobbing continued for about 20 minutes, until the happy juice wore off. Either that, or he got distracted enough with the pictures on Nona's phone (She does have pictures of old cars on there after all). Carson then enjoyed some snacks and TV while Vincristine was administered and the Pentamadine infusion started.

Now, what to do about that ANC. I was voting for the McDonald's experiment and perhaps some crawling around in mud puddles and stagnant water, but Dr.'s orders prevailed. In addition to starting our monthly round of steroids (at a higher dosage - because that boy is GROWING!), we'll start in again raising the dosages of the oral chemos - both of them. Alas, I mourn the days off from 6MP and the one crushed pill of methotrexate from a few weeks ago. The good old days!

And so, the next cycle begins. We have been in maintenance now for almost a year! Can you believe it?? God continues to protect our little guy with relatively good health - we'll deal with the dosing issues - it really could be worse. Don't I know it!

-Jennifer

Monster Truck Mania!

2011-02-28T20:34:00.004-05:00

After a false start a few weeks ago, we finally made it to the Monster Truck Jam show. Carson and Francesca had a blast, although C said he didn't like the loud noise. We all wore hearing protection of some sort. Carson sported the full blown Monster Truck tire earmuff style protection.

Carson wasn't too keen on taking a picture when the front loader was moving things around down on the arena floor.

Mechanical Mischief takes the jump right in front of us. (No zoom required here!)

Martial Law, however, broke a tie rod on the first jump and had to be towed out. And we didn't even have to pay extra to watch that! :-)

Watching the heavy machinery may have been just as fun to watch.

The Monster Truck show was a big hit for the entire family. Special thanks to Katie at Feld Entertainment for providing such awesome tickets and making up for the show we missed a few weeks ago!!!

Paul.

Same Blog, Second Verse

2011-02-24T15:55:00.003-05:00

Same Blog...Second Verse, or is it third..... or fifty-third? I have lost count at this point.

Our clinic visits are starting to run together. At this point I think I could cut and paste a previous posting and no one would be the wiser.

Carson's ANC is up to 1820. Raise the dosages of both methotrexate and 6MP. Get ready for another visit in a week with a spinal tap, steroid round, vincristine IV push and infusion of pentamadine (antibiotic).

Wait a week or so, see where the counts go......

Repeat, repeat, repeat.......

At least the Monster Truck Jam is coming up this Saturday and will give us a break in the cycle. Thanks for hooking us up Ms. Katie!

-Jennifer

Band-Aid and Toy Collection

2011-02-21T21:26:00.003-05:00

Just a quick note to say we are getting a lot of band-aids and toys to take up to the kids on pediatric oncology ward at the hospital. Right now we are up to 75 boxes of band-aids, circa 22 Wii/PS2 games, and numerous sacks of prize toys...and we're just getting started!

Carson sifts through the band-aids and talks about the ones he wished he could have. (Hopefully we won't be the recipients of this drive!)

It's been amazing to watch how the news of this travels. Keep spreading the word...and keep praying for the kids who are up there fighting cancer!!

Paul.

Thursday Clinic

2011-02-17T13:21:00.004-05:00

We went to the clinic today and were immediately ushered in to an exam room and told it was part of "flu and RSV precautions". That's new!! Carson had flu nearly a month ago. Anyway, it is a new policy that those who've had flu or RSV remain in isolation for clinic visits for one month.

This was a fate almost worse than death to Carson because the isolation rooms do not have a view of the Route 50 and he can't see any cars, construction trucks, buses or passing fire trucks! This also means he can't run around the clinic making candy deliveries, nor hit the art and play area to visit with some of his pals. When you've been stuck and home with low counts, the clinic is a highlight of your week. To then be stuck in a room, with mom, AGAIN, is not something he was interested in, even though he does exclaim several times a day "I LOVE MOMMY!"

We made due with drawing a road on the paper of the exam table and playing with the cars he'd brought in. Then he forgot all about being in isolation when Ms. Gretchen came in to play with him! Crashing planes and cars is the best!

Carson counts were not as high as we'd expected, ANC of only 710; but it is enough to begin chemo again at a very reduced dosage. We start today with our medicine and strawberry syrup concoction then will go back in a week to see what's going on.

Meanwhile, band-aids and prizes are pouring in for the hospital. THANKS SO MUCH for your support!!! Keep 'em comin'

-Jennifer

P.S. Whoever brought the book and basketball to Carson - Thanks! He's enjoying both very much!

Collecting

2011-02-14T10:20:00.004-05:00

Our visit and stay at the hospital last week made us aware again of small things that make a big difference on the pediatric oncology ward.

If you're local, or even if you're not, we are attempting to collect as much of the following items from now until March 4th for the kids fighting cancer at INOVA Fairfax. Most of these are EASY and INEXPENSIVE items that will put smiles on the faces of kids. These are specific needs that our fabulous Child Life Specialist, Miss Holly has requested.

Feel free to share this list with any group or any people who might be of help.

Here's the details:

Items Needed for Kids Fighting Cancer @ INOVA Fairfax

*as requested by Child Life*

· Small, inexpensive “prize” toys for boys and girls ages 2 – 12

o These will be given out in the procedure room on the pediatric oncology ward. This is where all procedures not serious enough for sedation, but still very painful, are conducted. Think dressing changes, troubleshooting mediport issues, IM chemo injections, and the like.

o Items must be new and in original packaging

o Examples include: Hot wheel cars, coloring books, small action figures/dolls, easy puzzles/games, etc.

· Wii and PS2 games (no PS3 systems just yet)

o These items can be new or used, and go a long way in relieving boredom. Each of the rooms has a system installed, but the game selection is very, very small.

· Band-aids with cartoon characters

o The hospital provides plain band-aids, but for young children the cartoon character band-aid is a prize in itself. Boxes must be unopened.

Going Home

2011-02-11T10:36:00.004-05:00

We are all at home! Carson was released just before noon!

This photo was taken right before we got word that we'd be leaving the hospital. Carson had spent part of the morning handing out Valentine's Day candy to nurses and patients. We're happy, but there are still several children and families here that are fighting hard, please remember them in your prayers.

And thanks everyone for the support while we were in "the big house"!!

-Jennifer

Hospital Update

2011-02-11T07:48:00.005-05:00

Paul reported that the IV IG finished around 2 AM last night with no more reactions! Yay!
Carson continues to have no fever and his ANC this morning is 430. He's still neutropenic, but things should be improving rapidly due to a high volume of monocytes (baby neutrophils that grow up and cause your ANC to rise). We are now waiting on the doctor to let us know if we're getting out today. It looks promising! We'll have to stay home, but that's where we want to be any way!

Thanks everyone for the prayers and loving support!

-Jennifer

Infusion Continues

2011-02-10T21:29:00.004-05:00

Carson's IGG infusion is still continuing as I type this note at 9:30 PM. We started at around 3 PM this afternoon; and, as promised by the doctors, they are infusing slowly. We expect to finish the infusion by about 2 AM.

It is actually quite alright with us. Carson began to have a reaction around hour 3 when the infusion rate was bumped to 18 ml per hour. It began the same as it did 9 months ago, uncontrollable shaking, mottled skin and the feeling that he can't get warm. The nurse came immediately and the rate was lowered back down to 9 ml/hr. They gave benadryl this time (instead of a steroid) and Carson got better quickly rather than getting worse.

So...things are still going, we are still praying, but it seems that we might actually make it through this. With a little bit of luck and some more Divine intervention, we can bring that boy home tomorrow.

-Jennifer

Not Going Home

2011-02-10T13:08:00.001-05:00

Carson's IG level is low, so he'll be getting a transfusion this afternoon. Please keep him (and all of us!) in your prayers. The last time he had this type of infusion he had a serious reaction - something we don't want to see repeated.

Paul.

Back in the Hospital

2011-02-10T06:40:00.002-05:00

Carson started running a fever late yesterday...again. Ugh...it seems like we go through this every couple of weeks!!! Unfortunately, this time his ANC was 300, which means he is neutropenic and very susceptible to infections/viruses, etc. This earned us a room back up on the pediatric oncology ward.

Carson seems to be feeling fine. He is playing and watching movies...and basking in all of the loving, personalized attention he's getting from the nurses. (Who wouldn't?) We'll probably remain there until he stays fever-free for 24 hrs, or his ANC rises above 500. I'm hoping we achieve both. Today.

This is our first admission back in the hospital since last May. Please pray this is a quick, uneventful trip.

Paul.

Clinic Update

2011-02-04T20:50:00.002-05:00

Our chemo dosage roller coaster continues in to February. Our doctor assures us he will find the right dosage. He probably could, if Carson would help out by not getting sick; but as of now, we are still finding our way.

The details: Carson's ANC had fallen to 580 since our weekend ER visit. It had been nearly 2000 on Saturday morning. Since he had restarted his oral chemos on Tuesday, there was no way to tell if the chemo had caused the fall or if this was a natural let down in the ANC after fighting off the flu.

All that means that we are back to 50% dosage on the 6MP and MTX after just having raised them two weeks earlier. Oh well, one good thing; Carson actually has Saturday and Sunday with no chemo to take!!

The vincristine and pentamadine (antibiotic) IV's went on as planned. Th 5 day round of steroids also began as well.-and so did the hunger.

This morning's breakfast: 2 bowls of Honey Nut Cheerios and a Special K protein bar! Yep, some things are still the same.

-Jennifer

Don't Forget!

2011-01-31T13:44:00.013-05:00

Carson is doing great with no fever since very early Monday morning. He has finished the Tamiflu and even returned to preschool yesterday. Thanks everyone for the prayers and kind messages these last few days.

Others are not so lucky and I find myself again in that strange predicament of celebrating one thing and mourning another simultaneously. There has been a lot of bad news from our small Northern Virginia pediatric cancer world in the last few weeks...young lives lost, relapses, reports of treatments that aren't working. So much pain I've come in contact with this last month alone; I can hardly stand it!

It may be the lack of sunshine here in January, darkening my state of mind to something like that black snow I now see along the sides of the road. But I know it is more than that. It's a conviction, a conviction to cry out to all of you and say "REACH OUT!" Continue the support to those you know who are in crisis, those passing through, and those coming out on the other side. Don't forget them! Cancer, death, major surgery, the diagnosis of a chronic condition, need support that lasts over time. Reach out to them in some way, in any way you can.

Won't you come along with Paul and I as we are taking steps to follow this in our own life? (more to come on that later) We wouldn't ask this if we weren't willing to do the same.

In the meantime, think about a few messages posted on the DC Candlelighters website. It is from families who are facing cancer, but it can be applied to lots of other situations too.

Messages from cancer families (What they want to say to you but probably won't)

Don't take "no, we don't need any help" from a family as their final response - ask again. Don't say, "Well, call us if you need something" because we probably won't call. We are not used to needing help from others and do not know (1) that we need it and (2) how to say yes. If you really mean it when you say you want to help, please come up with your own ideas, such as "I'd like to mow your grass" or "I will babysit (the younger sibling(s) if any) this week-end" or "I will be snow-blowing your drive-way for the season" or "Let me stay with your son overnight at the hospital so you can get some rest at home" or 'I will drive your other children to school/pick them up from school for the next few weeks to help you out.' And if you make such an offer and we refuse, we may be refusing because we really don't need help like that at the moment, but please, please call back in a week or two and try again.

I think what most folks forget is that this is SUCH a LONG term family problem. Meals and help the first few weeks are nice....but we're dealing with stuff that will last one to several years. It's easy to fade out of the picture. Emotional support is CRUCIAL for the family - for the entire time our child is in treatment. Just make a point to call, once a week or every two weeks. Parents of cancer kids lose some of their former friends and get distanced from their relatives. Please just let us know you're still thinking of us, praying for our child, sending good thoughts and not just the first few weeks or months; but throughout the years that we may be enduring this.

People just don't know what to say...so they don't call. It's a horrible feeling to feel like you have the plague or something. We need friends that just call for no reason! And you don't have to say anything. Just call and say "I've been thinking about you." That leaves it wide open for me to say "I'm so glad you called, let me tell you about..." or "This really isn't a good time, but I'm so glad you called." At least we know you called and you care. And that means more than anything.

Back to the ER...Ugh!

2011-01-29T18:52:00.003-05:00

Back to the ER

Ok, the trips to the ER are getting old. In November we went when Carson had a fever and ear infection. That turned into two visits. In December, on our first real trip out of the metro area, it was another fever and ear infection. There were two follow-up visits at the ER for that one.

We ALMOST made it through January without going to the ER, but then Carson developed another fever last night. The difference this time was the diagnosis: influenza. What!?

I know what you're thinking, "Didn't he have his flu shot this year?" Yup, he sure did. We all did. Either the vaccine doesn't cover this strain OR his compromised immune system couldn't fight it off even with the vaccine. Either way, it doesn't really matter. You play the hand that your dealt and Carson has the flu.

Unfortunately, this meant our big afternoon at the Monster Truck Jam was canceled. Sorry, buddy. We'll do it another time.

The good news Carson isn't feeling too bad. He is taking Tylenol and Tamiflu. Besides feeling puny and still fighting off a fever, he seems to be handling it well.

Almost half way there.

Oh, I haven't put this up in a while...but we are 568 days into our 1,278 day long treatment plan. Please pray we can keep the ER visits to a minimum!

Paul.

Weekend Update

2011-01-23T16:08:00.003-05:00

On Friday morning, I woke up and felt pretty good. This was a surprise to me since the night before I felt so queasy and could barely talk due to my sore throat. What a difference some sleep makes, in combination with some good anti-nausea drugs.

I got home from the hospital on Friday about lunch time and I've been feeling good ever since. I just look like someone tried to slit my throat!

I have taken a nap every day since then, Carson and Shade are overjoyed - they've been taking one with me.

I have watched my mother cook, clean and shop up a storm for 3 days straight now. I won't have to cook very much or go to the grocery store for at least a month. Thanks Mom!

I will take it easy this week, but looking forward to things getting back to normal. We have a clinic visit on Tuesday for a counts check. I will have a follow up with the endocrinologist on Thursday. Shade will also have a post eye surgery follow up on Thursday at the vet.

Pretty much a normal week.....doctor's visits!

-Jennifer

Surgery a Success

2011-01-20T17:54:00.003-05:00

Jennifer's surgery took place early this morning and went off without a hitch. Of course she feels terrible. In fact, I think she mouthed the word "crap" when asked to comment on how she felt. Totally understandable.

If anything else is bothering her it's hard to tell. She is hoarse and unable to talk very loud....which really cuts down on any protracted complaining. :-)

(Okay, I admit that was a TERRIBLE, INSESITIVE thing to write. I can here the gasps now..."I can't believe he put that in there!")

Showing off the doctors "glue" job. Word has it Gorilla glue works the best.

The good news is she is well medicated and resting comfortably. I have been at the hospital most of the day. (Most of which was spent in the waiting room.) I'm going to wrap this up so I can head back up there for some last minute pampering.

Please pray for a quick, complication-free recovery!! Go Jennifer!!

Paul.

Disney Wrap Up

2011-01-19T20:35:00.000-05:00

We had a great time at Disney, really we did. It was a bit more stressful than we would have liked though for following reasons.

Carson on steroids. On average, Carson ate twice as much as he normally did and spent most of his time thinking about food. He ate two child's breakfasts most days and immediately said, "something smells good, when are we gonna eat?" upon entering most parks. At Disney, that adds up to some serious dollars. Paul thinks Carson would have been just as happy at the food court at Tyson's.

Mom's race. Enough said. I was a little stressed.

Paul caught a stomach bug on our 2nd to last day there. To try and keep everyone else well, we paid for two rooms on our last night there. Thankfully, no one else got sick.

Some other highlights:

Carson told Paul that the best part of the trip was riding the Disney buses between parks. He especially liked it when they used the handicap ramp. In case you weren't aware, the bus actually TILTS and it makes a great beeping noise to boot!

We had a nice visit with our friends the Herrings who came up from Miami. Michelle ran the half marathon and has now officially retired from running.

We saw our friends the Fishers briefly and Bethany completed the Goofy Challenge. (That's the half marathon on Saturday followed by the full marathon on Sunday!) Way to go!

Carson finally got enough to eat at dinner at Chef Mickey's in the Contemporary Resort - because it was an all you can eat buffet!

Carson took a moment out from eating to pose at Chef Mickey's!

A new Disney mystery developed: Carson is no longer afraid of any of the characters he meets - he is now afraid of the Buzz LightYear ride, the Dumbo ride and even the TT railroad! The Country Bear Jamboree and the carousel are more to his liking this visit. Go figure!

And finally, some more pictures:

Luckily, we came across this photo op while on the way to a restaurant to eat.
Otherwise, Carson would have never posed for it.

Francesca and Marina (one of my running buddies) before riding Everest and having their
hair blown all over. Carson was enjoying a pizza somewhere....

The reason we went to Disney in the first place!
Some day, I want other little boys to head to Disney World without leukemia or lymphoma in their lives!!!

-Jennifer

Hop Along

2011-01-15T12:05:00.002-05:00

Paul is persisting with my new nickname "Hop Along". I am still limping, and my knee is still hurting, but I'm getting better. The doctor said that everything is inflamed and it will just take awhile to get better.

I am hampered by the fact that I cannot take anti-inflammatory medicines because I'll be having my thyroid removed on Thursday. (Say a prayer for that one while you're at it!)

In the meantime, Carson has also developed a limp, complaining that his right leg hurts. I think he may actually have some pain; he took a tumble a few days ago. We do think, however, that it is in part a "sympathy limp". Time will tell.

Francesca is on a ski trip with the church youth group. We'll see her again on Monday. This is her first multiple night trip away from us with people other than family (with the exception of diabetes camp). We are praying she keeps on top of her blood sugar and has an awesome time.

Have a great weekend everybody!! We have been away every weekend for four weeks now - we are so glad to be home!

-Jennifer

Marathon Complete!!

2011-01-11T20:37:00.010-05:00

The 2011 DisneyWorld Marathon is over. I laughed, I cried, I ran, but mostly, I HURT!

Here are the highs, and lows, from that event.

The Reader's Digest version:

I finished, albeit slowly, at 5 hrs and 40 minutes
I utilized every aid station for BioFreeze and/or Tylenol
TNT coaches showed up at just the right times to keep me going
I almost cried 3 times
My knee hurt the whole time

Now the full version:

2:30 AM: Wake Up and get ready. Did I even sleep??? Shoes, skirt, shirt, socks, hat, sport beans, arm bands, Gatorade, GPS watch, extra clothes to keep you warm while you wait for the start, gloves, phone, breakfast...ready! Oh yea, take vicodin and pray that knee will not hurt during the run.

3:30 AM: Arrive at bag check and wait until it is time to walk to the starting corrals. Meet the TNT team for last minute tips and pics, post to Facebook and send texts about how you are freezing! It sure is cold before the sun comes up.

Kathy, yours truly and Marina bundled up before the race.

5:55 AM: Race starts....knee hurts with first step, heat from fireworks feels good! I planned to run slow and walk the water stops, and decided to keep the icy hot sleeve on my knee instead of removing it.

Run through Epcot first. Take picture.

Me, before the knee was REALLY hurting.

Run to and through Magic Kingdom. Somewhere between Epcot and Magic Kingdom, shed layers of clothes and note others who have done the same. Lose Kathy - who I've been running with up until now. Maybe she got lost in that huge fleece jacket I threw off!

Take picture of race car and its drivers

"Um, can you drive me to the finish?"

Somewhere around Mile 10 take another half of a vicodin because it has already been 4 hours since I took the last one - and you're not even half way through this race (!)

Head to Animal Kingdom - see and talk to lots of TNTers on the way.

See Paul, Francesca and Carson complete with noise makers and signs around Mile 17. Come close to crying, give kisses and keep going.

Meanwhile, take note of all the great things Disney has done to entertain/distract me on this run. Music, marching bands, Disney characters, classic cars, fire trucks, cheering cast members, cheering strangers yelling "GO TEAM", singers, hot air balloons - it is AMAZING to say the least.

Keep running, keep hurting. Keep thinking about how I won't quit. Keep thinking about all the great inspirational messages sent to me over the last few days. Keep going.

Mile 18-19: I'm on the road between parks and I start dragging, start walking at places other than the water stops. A TNT angel from the Central Florida chapter shows up and walks with me. Gives me the inspiration to start running again. I tell her about Carson and almost start crying again.

Around Mile 21: A TNT coach from my chapter appears (it was like he materialized out of thin air) and runs with me. He gives me the layout of the next 5 miles - a huge mental boost. I keep going.

Before I know it, I'm handed off to another TNT coach from the National Capital Area chapter. He already knows I'm hurting because one of my training buddies, Marina, has filled him in. (Thanks Marina!) He suggests I get my knee taped up at the next medical tent. I do it, and he waits. A few minutes later, we start running again. The tape on the knee, his pep talk and the Toy Story Army Sergeant get me up a hill and through to the next park - Hollywood Studios.

Find lots of things to take pictures of at Hollywood Studios. The criteria for picture taking: line must not be too long and it is something Carson would like to see.

I sure needed that big hug from Sully

I sure don't feel strong for this picture, but adopt the philosophy "fake it 'til you make it"

And finally....return to Epcot. The end is in sight!!!! Well, I can't actually see it, but I know I'm close. I run through the World Showcase and head towards Spaceship Earth. All kinds of people line the course, they are cheering and yelling. I see my beautiful family just before Mile 26! Carson asks for the second time, "Mom, when you gonna be done?"

Then....at last....the finish line!!! I can't believe I made it!!! I fight back the tears and just try to keep moving - otherwise my knee may never move again.

Get water, get the heat blanket, get the medal, get photo, get some food and see my smiling family at the TNT tent. Give Carson my medal - this one's for you bud!

Carson is glad that Mom is finally done!

Thanks everyone - AGAIN - the help, the donations, the prayers. It took a whole army, both physical and spiritual, to get me across that finish line!!! It is an experience that will stick with me for a life time...and I think my knee will also never let me forget it!

-Jennifer

Hoping I'm Ready for the Marathon!

2011-01-05T22:07:00.003-05:00

There are only a few days left before the marathon, but it's not too late to donate to help Carson and the other families who face leukemia and lymphoma. Click on the logo to the right and be a part of the team that helps Carson and other kids just like him.

I have competed in other sports...okay, so that was a "few" years ago...but one thing that I've learned in my marathon training is that I'm not really a distance runner. In fact, my knee tends to really not like distance running! So much so that I've had two cortisone injections - one as recent as this past Monday. As I've said before, my pain is nothing like what Carson goes through.

So, if you happen to be up early Sunday morning, please say a prayer for me. I know I will finish the race - but I'd like to do it with as little walking as possible. Hey, I want to get this thing over with!

Thanks to the Falls Church News Press for the kind article highlighting Carson and my training. (Read it here.) I was hoping for the extra pressure. Ok, maybe not. :-)

Thanks to everyone for the support throughout my training and fundraising. I never thought I'd have to raise my fundraising goal, yet that's exactly what I had to do - FOUR times! In fact, I need to do it again!!

-Jennifer

Christmas in the ER

2011-01-03T21:33:00.004-05:00

Christmas 2010 was a grand success. Of course the fact that we were in the great state of Texas was a great contributor to that success. Seeing acres and acres of concrete with every imaginable chain store and franchise known to man somehow seems to lift the heart. Unfortunately it also tends to deplete one's bank account...at least it did mine!

Francesca and Carson spent quality time with grandparents, cousins, and many others. Fighting was minimal - for a brief period - as everyone was totally engrossed in their new gifts.

And what would our Christmas be without a visit to the hospital?

On Christmas day Carson developed an ear infection and by that evening he had a low grade fever. Instead of waiting until he had a higher fever (as we had done a few weeks earlier) we decided to change things up and take him in at a reasonable hour. Heck, we barely know what the ER looks like in the daylight.

The Children's Hospital campus in Plano was courteous and fast. Just like in Virginia, we were whisked to the back as soon as we told them we have an oncology patient with a compromised immune system and a fever. It's so nice to see our "Frequent ER Patron" card accepted at other hospitals as well.

Jennifer and I even had time to go out to eat by ourselves on our last night.

And it was over dinner that night that Jennifer mentioned the news that another young boy lost his fight with leukemia earlier that day. We didn't know him or the family, but he had the same form of leukemia as Carson. We sat in silence as worry and fear returned to consume us.

But then came our second wind...and a second basket of chips.

The peace of the Lord always seems to calm our fears and strengthen our resolve. And old cars seem to do the same with Carson.

Paul.

It's all about the Attitude

2010-12-25T00:35:00.009-05:00

Carson's pesky ear infection from four weeks ago is back! Ugh. Naturally it decided to manifest itself with a fever on the afternoon of Christmas day. Off to the ER...again. This time, however, we hit it with three rounds of antibiotics instead of two. Tonight was our last round. Hopefully that will do the trick.

So here it is another Christmas...and here we are at another hospital. Although some things have changed from last year, many things remain the same.

For instance, last year at this time Carson was in the middle of heavy treatment and playing with cars. (See image 1.)

Image 1: Irrefutable photographic evidence that Carson was indeed in the middle of treat (notice the missing hair) and was playing with cars. (2009)

But this year different. This year we are in the middle of treatment (not quite as heavy) and playing with cars, BUT NOW WE HAVE HAIR! (See image 2.)

Image 2: Irrefutable photographic evidence that Carson is still playing with cars, but now has hair! (2010)

If it weren't for the hair, I'm not sure you'd have notice much of a change. And that brings me to the three lessons I have learned from watching kids battle cancer:

Lesson 1: Attitude.
Lesson 2: Attitude.
Lesson 3: Attitude.

Okay, that sounds like buying a house, doesn't it?

Thinking about where we were this time last year, I came across this short video from the hospital. Check out these kids as they run around the pediatric oncology ward, hooked up to IVs and no hair. Nothing will keep them down!

Boys will be boys - even when in the hospital and hooked up to IVs.
(Carson is the one in the black shirt with the nerf rocket.)

Carson and the other kids teach us through their attitude. No matter the problem, they are grateful for when they feel good and always find a way to enjoy every moment of every day.

And I really like that.

I Want More Happy Juice!

2010-12-13T07:53:00.000-05:00

This past week marked the start of a new cycle in our maintenance phase...but not before getting to visit with Santa!

Monday night was the annual Teardrops to Rainbows Christmas/Growing Hope banquet. Okay, so I think it was really called a "Holiday" party. Except there wasn't any fasting (are you kidding?), nor was there a menorah. But there was a Christmas tree, traditional Christmas music, and visit from Santa Claus. Hmmm...it sure LOOKED and SOUNDED like a Christmas party.

I digress...what's important is that there was a banquet hall full of kids fighting cancer who were all being pampered for the evening.

Both Carson and Francesca stuffed an animal. Both picked a dog. Both picked the same style of dog. Both named their respective dog "Daisy." I bet they conspired to do this just so they could have more fights at home.

Prior to Santa's arrival there was music, dancing, and food.

Forget the sword, balloon guy, I want a gun!!

When Santa came they called each family's name one at a time. As each name was read an exasperated Carson let out a audible, "Awh!" that was loud enough for the whole room to hear.

I think this is the first picture of Carson and Santa where Carson doesn't look scared for his life! It's progress.

We finally got our chance, though. Carson got some Hotwheels (who'd a thunk it?) and Francesca an art set. A special thanks for Teardrops to Rainbows and Growing Hope for making this a super special evening!

On Thursday we started a new cycle in therapy - which means we had a spinal with chemo flush...which means we had Happy Juice (aka midazolam).

When the procedure nurse walked into the room Carson asked her, "Do you have the happy juice?" No. And when the doctor first walked into the room Carson screamed in excitement, "I want Happy Juice!!"

"Good morning to you, too, Carson."

The spinal procedure passed without incident. And when Carson came to he turned to the doctor and said, "I want some more Happy Juice!!"

We are extremely grateful for medicines like Happy Juice. But honestly, I see a Happy Juice intervention in our future!

Paul.

How Quickly I Forget

2010-12-03T12:03:00.009-05:00

So it's been a while since I've posted to the blog. Slowly but surely I've been sucked back into the routine of life - which can feel good and comforting. Ah, the joys of meaningless meetings at work, kids fighting at home, the car in the shop, the roof repairs...the list of distractions goes on and on.

And that's just what all these things are - distractions.

Then it's another trip to the ER. Another child's funeral. A friend's child diagnosed with leukemia.

Oh yeah, every minute is a gift! I must be pretty dense to need reminders like this.

(Dear God, please help me to grow out of my denseness. I really hate getting these reminders!)

And then we came across this: A story of another boy who had leukemia. He went through two bone marrow transplants, neither of which were successful. Realizing his time was short, the family decided to celebrate Christmas in September. The family's actions inspired the town, and singer/songwriter Matthew West to write "One Last Christmas."

Watch Dax battle leukemia and how his community rallies around the family:

What a moving video! Of course it left Jennifer and I in tears. Some of the images of Dax looked like Carson when he was in treatment.

How quickly we forget - every minute of every day is a precious gift from God.

Paul.

Thankful

2010-11-26T12:44:00.014-05:00

This year we are again thankful and mindful of the great blessings & great promises that God has given to us.

Here are but a few recent examples of God's gifts these past few weeks. There's a lot more gifts that have happened all year long; but I doubt you have time for such a lengthy blog!

We are thankful for those who were not afraid to "Be Brave and Shave" in support of Children's National Medical Center and the fight against pediatric cancer.

Gretchen, Jay, Nicole and Kimber - we love you guys!!! Clinic visits could be horrible,
but you make them something that Carson looks forward to!

Thanks Dr. L - Carson looks forward to seeing you too!
....and so do his parents!

Officer Tom, our special friend. Carson loves knowing a "real policeman"!

We are thankful to organizations like Growing Hope, who give a boy and his family a fun day to remember at King's Dominion.

Carson atop the ferris wheel enjoying a sunny day.

We are thankful to all those who've donated to the Leukemia and Lymphoma Society in support of Jennifer's efforts to run the Disney Marathon and the search for a cure. This week, as I learned about my friend's 7 year old son, diagnosed with Bcell ALL the day before Thanksgiving; I again realized that no parent should ever have to hear the words "Your child has leukemia". We won't stop until that phrase is erased!

By the way, the winner of the gym membership is........ Sue Earman! Thanks Sue for your donation (and being a great running partner to boot!)

What it takes to get a 14 miler in on a 32 degree day: Tights, running skirt stuffed with sport beans, new stability shoes (to keep the knee in place), long sleeved shirt, ear headband, hat, ipod, fuel belt with
gatorade and gloves!

We are thankful for birthdays!!! Some times we forget that life is, in fact, a gift from God in itself and worth the celebration. Don't take it for granted!

A teenager among us......YIKES!

Ice cream cake from Baskin Robbins - YUM!

Our thanks to you, our friends, family and readers! Your words, deeds and prayers have carried us through another year!
-Jennifer

Trying to blog

2010-11-22T21:32:00.007-05:00

We have a million things to share, and things just won't seem to settle down. Thank goodness there is a holiday coming - maybe we will have some down time and an opportunity to update the blog in something other than "Reader's Digest" format.

This is what went on last week in the Kind household:

a cortisone shot in the knee for yours truly
a new roof installation
the continued night time activities of the flying squirrels that have invaded our attic and seem too smart for the traps
2 children with birthdays
a week long visit from my parents (who were a huge help amid the chaos)
the "service engine soon" light coming on in the Mini
a 3 hour visit Children's hospital downtown for Francesca to upgrade her insulin pump
a 3 hour visit to the ER later that night(morning) with Carson for an ear infection
a birthday party for Carson at the house
a visit to our dear friends who lost their 12 yr old son suddenly in the overnight hours of Friday and Saturday
a second visit to the ER on Sunday for more IV antibiotics for Carson
and an evening at church to hear both children sing in their respective choirs

This chaos still beats the hospital any time any day!

Carson poses patiently for a picture before opening gifts.

Cupcakes!!!!! Need I say more?

Stay tuned for more photos!

-Jennifer

Blog Alert.....

2010-11-15T15:18:00.002-05:00

We have had a lot going on here in the King household. More fundraisers, day trip to King's Dominion, swim meets, flying squirrels in the roof - and subsequent trapping of flying squirrels- washing machines breaking, physical therapy, cortisone shots, a little boy on steroids, you name it.

This is just a note to say, we will update soon. Stay tuned!

-Jennifer

Free Fitness Ending...

2010-11-06T11:44:00.003-04:00

The chance to win a free gym membership will be coming to an end soon. There's still time to get in on this raffle though if you're interested. You have until midnight on November 7th. Just click here and receive one entry for every 10 dollars donated to Leukemia and Lymphoma Society.

Hope everyone is having a great fall weekend. Half of us are hanging at home, and the other half are at a swim meet.

-Jennifer

Clinic and Halloween

2010-11-01T14:42:00.006-04:00

Here's a few photos from Halloween. We spent last Halloween in the hospital, so this year was terrific! Columbia had its annual Trunk or Treat complete with tons of candy, music and bounce houses. Carson went down early to hit the inflatables before everyone and their germs and had a blast! Unfortunately, when we went back for the actual Trunk or Treat he was already worn out. He lasted about 45 minutes and was done. He slept very well last night though!

Nona is here visiting and got to see the Halloween Parade at preschool on Friday!

Two firemen and a the unique "rapping swimmer" ready for Trunk or Treat.
Thankfully, there were no fires or drive by shootings during the festivities!

Saturday, our "fly girl" participated in a duel meet with North Baltimore Aquatic Club.
Both clubs brought their best of each age group - Curl Burke rocked!

Counts check at the clinic last Thursday was quick and easy. Well, the finger stick to get the counts wasn't easy, but we once again survived. Carson's ANC is a whopping 2000, hemoglobin good and platelets too. Despite a higher ANC than the doctors would like, we are still moving slowing with increases in chemo dosages. These next two weeks we'll increase the methotrexate to right around 100%, but the 6MP will stay right where it is at 50%.

Next clinic visit: November 11th. -Jennifer

Deep Thoughts with Jennifer

2010-10-27T18:47:00.011-04:00

I get wrapped around the axle about the smallest things. I tend to focus on the here and now. I get stressed all the time. I lose perspective quite easily.

So, today's post is unusual for me. Bear with me while I explain.

We have been reading a book in church these last four weeks. It is The Family God Uses by Tom & Kim Blackaby. It has been a valuable study, a good reminder about raising a family that is grounded in the values of the Bible and a look at God's design and purpose of the family.

I admit though, I was pretty much going through the motions of the study, not thinking too hard about any of it. As usual, it takes a ton of bricks, to wake me up. Those bricks sure have a funny way of dropping at the most interesting of times.....

This is what I read "When God spares a child, it is for a reason". This is just one statement in an 180 page book, but I zeroed in on it. I started thinking about both of our children. I do believe both of our children have been spared by God, both should have probably died, but both are still here living happy lives. They are thriving in fact, despite their circumstances.

The book specifically mentions how Moses was saved from death when his mother hid him in a basket and floated him down the river, only to be found by the Pharaohs daughter. God protected Moses and he lived to lead Israel out of Egypt. I never thought about Francesca's experience being somewhat similar to Moses'. God took care of Francesca. He took her out of a circumstance in which she would have died and sent her where she needed to go to live. She is alive because of His protection. Think about this: We were living in a foreign third world country, we were almost not allowed to leave the country to go on R&R in the states. We flew out and about the same time Francesca was diagnosed with diabetes, Cote D'Ivoire was in the middle of a coup! Everyone had to stay in their homes under lock and key; there would have been no going out to the hospital with a sick child. She would probably have died if we'd have had to wait it out.

When we brought Carson to the hospital, he had an enormous white blood cell count (85% of which was cancer), almost no platelets, and no immune system. Yet he wasn't sick (apart from the cancer), he wasn't bleeding internally and no cancer cells had managed to migrate to his central nervous system. And now, SO FAR, we've had nothing but good news regarding his prognosis. Right now, his life has been spared.

And if I believe the author's statement about God sparing children for a reason, what is the reason my kids are walking around today??? What does God have planned for my children,??? How does he wish to use their lives to further his purpose? My kids may not grow up to lead countries, or be famous; but God has a plan to use them in some way. And, finally, what am I doing to make sure they grow up able to be used by God??

Serious business. The thing is, I should be asking those questions of myself with or without a brush with death. Something to think long and hard about for me. I need to focus on those questions above, maybe I won't get so stressed about small things, I won't lose my perspective. Axle?? What axle?

-Jennifer

Free Fitness

2010-10-21T10:41:00.006-04:00

As if one blog wasn't enough, I started blogging about my marathon training on my Leukemia and Lymphoma Society TNT page. You can read about, and feel sorry for, all my aches and pains as I get ready for Disney. Then you can laugh about how you're glad you aren't the one doing it!

As my training continues, I'm still raising funds for Leukemia and Lymphoma Society....and I have another prize to raffle off for all of you who are local. It is a one month free membership to Vantage Fitness. This is a great time to win a free membership to the gym because the cold, yucky, rainy, snowy weather is coming. If you're like me, you'll want to be exercising indoors instead of outside and Vantage is a great place to do it.

Located in Falls Church, right on Broad Street, Vantage Fitness is a beautiful, light, bright, small and personal gym. I have been a member there for nearly two years, and have taken advantage of nearly all of their services. They have friendly staff, great fitness classes, babysitting and super smart trainers. Not only that, there is a massage therapist in house and a physical therapist too!

If you're the lucky winner of this raffle you will get a one month free membership to this great gym, plus you'll also have the registration fee waived. That amounts to a prize valued at $175.

The details: Donate through my TNT fundraising page between now and midnight on November 7th, 2010. For every $10 you donate, you'll receive an entry in the raffle. If you've already donated through my page, don't worry, you are already entered. But, if you choose, more entries are yours, with an additional donation! Those of you who haven't yet donated - get with it! You could win a gym membership for as little as $10! What a deal!

And if you need more inspiration to donate, just take a look at this......

All of these children have a blood cancer. Let's find a cure sooner rather than later!

-Jennifer

Another Week

2010-10-16T18:24:00.005-04:00

Clinic
Carson was due for Vincristine(chemo) and Pentamadine (antibiotic) on Wednesday. That all went fine. His ANC counts were good - too good in fact. Guess what that means? Time for a change in the oral chemo routine! Sheryl Crow once sand "a change will do you good", but I don't think she was talking about medications for a near 5 year old. At any rate, Carson will continue on the same dosage of 6MP, but will go to full dosage of the methotrexate. This is yet another new dosage experiment and we'll find out how it plays out in two weeks. For now, we have a week off from the clinic because Carson started his 5 day burst of steroids and that will elevate his counts while he is on that.

Fundraising Update
A group of us had a Team In Training Happy Hour Fundraiser at a local restaurant, Ireland's Four Provinces, on Thursday. We had good attendance, great raffle prizes and a lot of fun. We are really thankful to everyone that came to the event and contributed to our fundraising efforts! Thanks also to our generous donors! And finally, thanks to Francesca, who developed writer's cramp while writing every one's name and phone number on their raffle tickets! We raised over $1,000 for Leukemia and Lymphoma Society! Way to Go!

Marina and Kathy get ready for raffle ticket sales galore!

Carson, of course, cared not at all about the fundraising. He instead spent nearly 3 hours playing all around the restaurant with friends Nils, Riley and Andy- he was too excited to even eat. Subsequently, he crashed when he got home and woke up starving the next morning!

How can anyone resist these face??? THIS is why we run!

Now, just in case you missed all the fun and excitement, or want to experience the thrill of donating yourself, it is not too late. Just look for the TNT logo on the right of this page and donate away!

Hope everyone is having a wonderful weekend!
-Jennifer

Fundraiser Reminder

2010-10-13T21:27:00.002-04:00

Just a reminder that tomorrow, October 14th, is our Leukemia and Lymphoma Society Team in Training Fundraiser. Location: Ireland's Four Provinces, 105 W. Broad Street in Falls Church, Time: 5-8 PM. We plan to have a FABULOUS time!

If you can't make it, feel free to donate on line (see the Team In Training logo at right), or contact me via email if you'd like to purchase raffle tickets.

Here's a list of just some of the raffle prizes:

(1) One hour massage from Deanna Staniszewski.......$95 value
(1) One hour massage from Mei Acuna Arrington …...$60 value
(5) Boxes of 4 gourmet cupcakes from Sweet Charity Cupcakes.....$12 value /each
(3) One hour personal training sessions with Marina El-Ghoul of Vantage Fitness.....$228value
(1) One month free membership to Vantage Fitness in Falls Church......$75 value
(1) Chunky foil glass amber bead Necklace – 42".........$32 value
(1) Gift certificate to Virginia Runner.....................$25 value
(2) Gift certificates from Restaurant.com..................$50 value/each

There will also be a silent auction for a legal document package (valued at $1000) from Susan Earman, Esq.

See you there!!!! It will be a great evening!
-Jennifer

Ten, Ten, Ten

2010-10-11T23:00:00.001-04:00

Our good friends Mark and Libby got married yesterday, on 10/10/10. Naturally, we managed to have a great time.

The ceremony was short and sweet; Carson managed to hold it together and be quiet. The reception was fun filled. Carson even danced, when he wasn't busy following Mark and Libby around, or trying to get our friend Chris to play with him.

Thanks for a wonderful evening Libby and Mark. May you have a beautiful life together!

The best part though.... seeing my family dressed up for a change, happy and well!

-Jennifer

Clinic Report

2010-10-06T08:01:00.006-04:00

Carson's clinic visit went pretty much as expected yesterday. His ANC had risen considerably to around 1100. That means it is time to start the chemos again. This time there is a new plan though. He will remain on the same dose of methotrexate (currently at about 75% of what is called for), but the 6MP will be cut to the 50% dosage. They plan to keep the 6MP at that level for at least one month; and if counts hold, the plan is to only increase the methotrexate and try to get that up to full dosage. In a nutshell, they plan to move slower with any dosage increases and to only increase one drug at a time. Perhaps some day we'll find the "Carson dosage". At this point I would rather have a smaller dose every day than stopping and starting all the time.

Because his counts were high, Carson was "rewarded" with the flu shot. Poor guy! Low counts mean you stay home and away from people, high counts mean you get to take even more medicine.

Surprisingly, with all the happens to him, Carson absolutely loves the clinic. He is so excited to go on his appointment days that he constantly asks "when we go to clinic?" "I go play with Ms. Gretchen". "who's gonna listen to me when I get there?" (translation: "which doctor is going to do his exam - which includes listening to his lungs") It is a real credit to the clinic that with all the not so nice things they must do to children there, the kids still want to be there and they still make it fun for them. Obviously, there's some real special people working there and we are grateful for that.

Lots of great events coming up in the next few weeks which directly benefit pediatric cancer research and Children's National Medical Center.

Our friend, Officer Tom of the Arlington Police Department is participating in Be Brave and Shave which will benefit Children's National Medical Center. Lots of policemen and firefighters are receiving donations and will shave their heads to benefit CNMC on November 7th. Click here to donate. There's a great picture of Carson and Francesca with Tom there as well.

The CureSearch Walk on October 17th benefits the Children's Oncology Group (COG), a world wide organization of which the doctor's at the clinic are a part. The COG treats approximately 85% of all pediatric cancer patients. They are making huge strides in treatment for kids because they share information with each other and make changes as they discover what works best. If you want to learn more visit this link. Nurse Katie from the clinic is participating along with others that we know.

Thanks everyone for your continued prayers, words and deeds of support. They still mean a lot to us as we're on this long journey!

-Jennifer

Catching Up & Clinic

2010-09-30T09:00:00.000-04:00

We've been so busy these last few weeks. Here are a few other events that have happened......

Goodbye Acura! We purchased a 2009 Mini Clubman.
It is our mid life crisis car. Francesca is hoping it will be her 16th birthday car.

My friends Kathy and Jennifer ran the Woodrow Wilson Half Marathon with me on September 19th. I tried to break 2 hours, but alas, a hill around mile 11 did me in. I finished in 2:02.10 instead.
Next event? Disney Marathon! -at least it is fairly flat!

Carson had a great time at the Growing Hope Walk and Family Fun Day. The dunk tank was especially exciting! Not only that, nearly $30,000 was raised to help families of children with cancer!

And the Clinic says.....
Tuesday's clinic visit revealed that Carson's ANC was below 500, making him very prone to infection - AGAIN! All his chemos have been stopped -AGAIN and he will be staying out of public (and school) - AGAIN!

We will go back next week to see if counts are up. If they are, we'll start chemos back at 50% of the dosage-AGAIN!
Some day, maybe, we'll find the dose that suits Carson best!

-Jennifer

The Winner

2010-09-28T23:00:00.000-04:00

Thanks again to everyone for your generosity in supporting the Leukemia and Lymphoma Society through your donations to Team In Training.

Here's some examples of the power of your donations......

A donation of $25 provides patients and their loved ones with FREE booklets that contain up-to-date information on their disease and help them make informed decisions about their treatment options.

A donation of $50 makes possible a Family Support group with a trained facilitator where comfort can be found and experiences can be shared among patients and family members.

A donation of $100 helps supply laboratory researchers with supplies and materials critical to carrying out their search for cures.

A donation of $150 provides financial aid to blood cancer patients to use during treatment, regardless of income, diagnosis or duration of treatment. This money can cover everything from transportation to and from treatment to the cost of a bone marrow transplant.

You guys are making all this possible!!! THANK YOU!!!

And now, back to our scheduled blog......the winner of the free massage, a $95 value, is (drum roll) SARAH KING! Congratulations Sarah! Let me tell you, you have not received just any old massage; Deanna has the ability to relax every muscle she touches, to work out even the tightest knots and kinks and leave you feeling like a completely new human being. Enjoy it!

For those of you that didn't win, there's still something for you too. Deanna has graciously offered to give everyone that donated a massage for just $50! That is nearly a 50% discount. So, give her a call today and set up an appointment. You will be VERY glad you did!

Deanna Staniszewski, NCBTMB Certified Massage Therapist
703-314-8797
803 W. Broad Street, Suite 240
Falls Church 22046

-Jennifer

Last Chance!

2010-09-27T21:49:00.002-04:00

Just one last reminder......Only 2 hours left! Donate to the Leukemia and Lymphoma Society via my fundraising page and you'll be entered in a drawing to win a massage. No amount too small!

Thanks so much!

And I promise....a real blog entry coming soon!

-Jennifer

Donation Nation

2010-09-24T10:56:00.004-04:00

Thanks to all those that have donated to Leukemia and Lymphoma Society. Thanks to you guys, I've reached my initial fundraising goal!

Don't forget, the drawing for the free massage from local massage therapist, Deanna Staniszewski is still on. You can donate ANY amount between now and midnight on September 27 and be entered in the drawing.

Thanks so much for your support!!! Have a great weekend!

Jennifer

One Year Later

2010-09-19T09:12:00.009-04:00

On Saturday morning Carson and I were on our way to pick up Francesca from swimming - yes, swimming has started back up - and as we were driving we were contemplating what we were going to do for the rest of the day. We were, in fact, in the unusual position of not having any scheduled activities for the day. No swim meets. No places to be....

And then, as we cut through the backstreets on our way to the pool, we passed the city maintenance yard...and they were putting out "Open House" signs.

Open House? We had totally forgotten!! And just like that, we instantly knew what we were doing the rest of the day - climbing on backhoes, honking the horns on dump trucks, turning on the lights on the snow plow, working the levers on the front loader...the excitement in the car was palatable. And, of course, Carson had a great time.

This fall we've been thinking a lot about what we were doing last fall...here's a comparison in pictures:

Check out those toothpick legs and fuzzy head! Carson tests one of the garbage trucks at the 2009 Falls Church Property Yard open house.

Fast forward a year...no mask, a full head of hair, and beefy legs. Carson poses for a photo (but is really checking out the bobcat parked in the back corner.)

Then, on Sunday we went to a birthday party for Carson's friend Heather. Heather and Carson share a special bond - they were diagnosed the same day and were frequently in the hospital together. On Sunday Heather celebrated her first birthday post treatment.

Heather and Carson get together outside the hospital in October 2009. (Both got sick and, due to low ANCs, ended up in the hospital within days of this photo.)

Heather and Carson take a break from the pool on Sunday afternoon at Heather's first birthday post treatment. What a beautiful sight!!!

What a difference a year makes. Thank you, Lord.

Paul.

Start of Maintenance Round 3

2010-09-14T21:07:00.004-04:00

Today marked the start of round 3 of our cycle on maintenance. The start of each 85 day cycle includes a spinal tap, chemo push (IV), and an hour long antibiotic infusion.

Happy Juice

You know how sometimes you put off telling your child something if you think they're not going to like it? Or, maybe you're the type that stretches the truth a little? Jennifer and I've kinda been in that boat with Carson regarding the start of this next cycle. Although he's lightly medicated and not suppose to be able to remember it, Carson hasn't been too fond of his more recent spinal taps. And who can blame him? He knows that they hurt, but the medication keeps the experience somewhat fuzzy. He's not sure why he doesn't like the spinal procedures.

We broke the news to him last night. He had only one question, "Will I get Happy Juice?"

Now, Happy Juice is a powerful sedative that tends to give Carson the giggles. It's also know as N-phenyl-N-(1-phenethyl-4-piperidinyl)propanamide...or fentanyl. (Happy Juice is much easier to say.)

But when Carson heard he'd be getting Happy Juice, he started cheering and running around the room waving his arms in the air. So this has us thinking: Are we fighting cancer only to raise a drug addict??

Meanwhile...back at the clinic.

Carson made counts this week with an ANC of 900. He made it through the spinal procedure, too. It's never fun. He was talking and giggling, at first. The tears and screams came shortly later. Like the other times, he doesn't remember too much about it. He knows that he cried, but not the specific act that caused it.

As with the past visits, he recovered quickly and was talking ears off in no time. And for that, we are always thankful because deep down we'd much rather be at the clinic doing spinal procedures than back in the hospital facing something much worse.

We are truly blessed. And our prayer tonight is one of thanks...and a request that Carson doesn't continue to seek Happy Juice, or any of its illicit relatives, when he's older.

Paul.