Bragging And Laughing

Paul finally edited some of the video from Saturday. Watch as Carson comes alive with laughter thanks to an in-home performance by Nancy Worcester and "Waco". Seriously, there were times when we thought he might crack a rib or something.

After going through so much, it's nice to see Carson having such a great time.

Brag Session

Well, it has been like a whole week since we've bragged on Francesca and her swimming, so we are overdue. If you don't want to hear us gushing with pride, well...here it comes anyway. :-)

Zones...Here We Come!

A week and half ago Francesca participated in the 14 & Under Junior Olympics in Maryland. Swimmers at this meet come from all over the Potomac Valley Swimming Association and have to make qualifying times in order to participate. It is a championship meet and there is a morning session (prelims) and a finals session.

It was a LONG three days, to say the least. Francesca swam 6 events and had to swim every event twice because she made either the A or B Final in all of her events. She also swam two relays- one of which got first place. It was a test of endurance and Francesca came through. She placed in the top 16 in all of her events, had many personal best times, as well as a few learning experiences. Her her best finishes were the 200 yard breast stroke where she finished 4th and the 200 yard butterfly where she also finished 4th.

Speaking of the 200 yard butterfly, Francesca's time in that event was fast enough to place her in the top three fastest times swum this year in all of PVS. This qualified her for the PVS Zone Team which will compete in Rochester, New York this Thursday-Saturday. The best from all Potomac Valley Swimming teams will now compete as one team against other Zone teams along the East Coast. It is another great opportunity for Francesca to experience tough competition and quite an honor to make the team.

Posing in her regional team warm-ups - check out those threads!

Way to Go Francesca! Swim fast this Weekend!

-Jennifer

Thank You!

Day 260 of our war on leukemia!

It was another big week around here and, as usual, we have many folks to thank for it.

Treatment Recap

We are officially waiting for Maintenance to begin, the heavy treatment is over and Carson will begin Maintenance once his ANC reaches 750 (as of Friday it was 210). It has been almost two weeks since his last chemo IV and he is feeling really good. This coming Friday we will be back at the clinic to check the counts and perhaps start Day 1 of Maintenance.

Carson finished his radiation on Wednesday. To him, it only meant one thing.....prizes. The Radiation Oncology staff presented Carson with a whole bucket load of cars, water guns, a stuffed animal and pirate ships. It was like Christmas all over again and Carson sat and played with everything that he could right then and there. He was ready to move in to the hospital again, but finally accepted the fact that the toys would be coming home with us and a hospital stay wasn't needed, no matter how fun they are!

Carson scores a big haul of squirt guns, cars, and shooting pirate ships from the Radiation Oncology department at the hospital. Thank goodness the squirt guns were "unloaded".

Thanks to the radiation nurses, Beth and Amy, our sedation nurse Natalya and Dr. K for everything!

The Greatest Show on Earth

Our good friends at Growing Hope hooked our entire family up with tickets to the circus today. Unfortunately, Carson was not able to go due to his low counts; so Paul and I took Francesca and two of her friends. We had fabulous seats, front and center on the second row; and a great time was had by all. It is so nice to take a break from everything and the folks at Growing Hope are so generous. A Big Thank You!

Easter Bunny and Puppets Spotted in Falls Church

You might think that Carson was stuck just sitting at home again, but you'd be wrong. He was at home, but he had some special visitors thanks to our wonderful church family at Columbia Baptist and Lora Gravatt. Around 12 o'clock Nona and Carson opened the door to find the Easter Bunny outside waiting for him to find all the eggs she'd hidden in the front yard. Carson had his own personal Easter Bunny guided egg hunt! There were so many eggs he needed two baskets to carry them all!

After a little shyness at first, Carson warms up to the Easter Bunny and the candy!

A little bit later some other visitors arrived - Nancy Worcester and her hilarious puppet friend "Waco". They had finished a show at the church earlier that day and they made a special stop at our house just for Carson. They treated him to a special rendition of "Hole in the Bottom of the Sea" and Carson has not laughed as hard as that, nor smiled as much as that, in months.

Carson enjoys a special encore performance by Nancy Worcester and her wacky puppet, Waco.

Mrs. Lora from the church video taped it, so we've been able to enjoy the visit many more times today as well. With each playing, Carson continues to laugh and laugh....and so do we!

-Jennifer

Almost Done...sort of

Radiation Continues.....

We have had a busy week and it is only Tuesday.

Monday:
8:00 Head to hospital at 8:00 AM for radiation. Receive call that machine not working. Go home, feed Carson.
9:00 Receive call from Radiology that machine now working, reschedule...but must wait until 3:30/4:00 because Carson has now had pancakes and ginger ale (a breakfast for champions!)
9:45 Go to school to give Francesca cold medicine
10:00 Go to grocery store...unload at home in time to.....
11:00 Go to clinic for counts check
12:30 Find out Carson needs a blood transfusion tomorrow..keep Carson from eating and drinking in prep for sedation during radiation
2:30 Make it home from clinic in time to let Francesca in from school
3:00 Head to Hospital
4:20 Radiation (finally)
6:00 Arrive home

Tuesday
8:00 Go to hospital for radiation
9:00 Watch Carson sleep in recovery - he's tired from yesterday after all!
10:00 Home for snack
11:45 Head to clinic for transfusion....wait until 2:00 for blood to arrive
2:00 - 4:00 Blood transfusion - - Watch Carson's cheeks grow pinker and mouth move faster and faster. Hope that he'll go to sleep tonight. Contemplate a proposed new blood donor rule "No Red Bulls for at least 24 hours prior to blood donation"
4:30 Nona picks us up from clinic on the way to take Francesca to swim practice
5:15 Arrive home

Despite what you have read above, we have made it through seven days of radiation without much incident. We have one more treatment to go tomorrow and then we will be all done with heavy chemo! Praise the Lord!


What's Next?

Maintenance....to begin when Carson's ANC reaches 750 (It is still 90 as of this afternoon) and to last until approximately 11/16/2012. I got a look at Carson's road map the other day and it was not quite what I expected. Maintenance will be a 12 week cycle that we repeat over and over until we reach 3 years. It includes a spinal tap on days 1 and 29, 3 rounds of steroids, oral methotrexate, another oral chemo known as 6MP, and IV pushes of Vincristine on day 1, 29 and 57. In my hazy, lack of sleep, stress filled, clinic and hospital induced quasi hypnotic state I am having trouble seeing how this is much easier than our initial 9 months. Actually, I'm not seeing how it is easier on ME; but I do know it is said to be much easier on CARSON. I can live with that.

There's lots of other things to write about, but I will save them for another day this week.
A tired four year old with no real nap for two days is about to be put to bed....maybe.

-Jennifer

Radiation Begins

Thanks to all for the numerous prayers and good wishes sent our way these last few days. We are glad to hear from you via email, phone or as comments on the blog. If I can make a request, it would be, please keep it up!

Carson has completed two radiation treatments and has six more to go. He has been doing just fine. He walks right in there amidst all the machines and people without much hesitation. He holds his head down at first while they talk to him, but quickly warms up as the conversation continues. Propofol is administered through the tube from his port and he is limp like a noodle in a matter of seconds while I sit and hold him. Immediately, he's transferred to the radiation table where 6 or 7 people place his head in a cradle, hook him up to monitors, start oxygen flowing, place the mesh mask on his face and head and clamp it down. Paul and I stand and look on during all the activity and then we are ushered out.

We are now helpless. Check your parental control, your ability to protect, and your sanity at the door. "Excuse me, but where is the sedation suite for parents?? Next to the psych ward? Oh, thank you very much. " Then it hits me hard, check your perceived parental control, check your belief in your ability to protect, at the door. You never really had any of those things to begin with. I must trust that God is in control. How many times have I said that? Today I believe it in a totally different way. What a lesson!

20 minutes later it is all over. Paul and I are called back in the room to watch him recover in another bed where they have moved him. He is a happy boy and we are all smiles. Carson chooses a sticker to place on his chart. He's one square closer to Square Number 8 and a special prize that awaits him. He argues that he should get a special prize at "numbah 5", he asks the nurse to tell him what the special prize is (she doesn't).....

After a few more minutes, Mr. Noodle attempts to walk. He's wobbly, but good enough. The nurse discharges us and we head home. Tomorrow we will have another lesson in trust and control. Carson, your parents (or at least your mom) are in need of yet another refresher course!

-Jennifer

Next Stop...Radiation

Day 242 of our war on leukemia.

We haven't written much lately because...well, things really haven't changed that much. Carson continues to go in and get poked and prodded and get nasty cell-killing chemo pumped through his port. The good news is he is still taking it like a champ.

I'm am still awestruck at how well these kids - all of them - handle their treatment. I wish I had an ounce of their spunk!

Last week we finished the ara-c treatment (daily chemo pushes through his port). Then on Friday we headed to the radiation clinic at the hospital for a CT scan and to have his "spider-man" mask made. The mask secures his head to the table so he can't move during radiation. (Just in case you're wondering...he'll be sedated.)

PEG Shots

Monday was the tough day. Carson had a chemo treatment through his port (vincristine this time), and then he had two chemo shots deep in his thighs. It was grueling. Jennifer held down his shoulders. I held down his legs.

After the shots Carson was walked over to the Child Life closet, where he was offered any toy of his choice. He looked and looked and looked, but he couldn't find any toy cars or trucks. So, he passed. Can you say fixated?

Another Francesca bragging session

Francesca had yet another swim meet over the weekend. This one was the Junior Championships for the area. Normally you have to be over 14 for this meet, but Francesca and a couple of other girls had fast enough times to swim as well.

And swim, they did. Francesca won the 200 fly outright, beating a field of 15 and 16 year-olds. Francesca's friend Julia did the same for the 100 fly. The two 12-year-olds swept the fly events!! It was amazing!!

Radiation starts Monday

Carson will start radiation on Monday. Please be in prayer as he enters this next phase. There are a number of potential side effects that weigh heavy on our minds and hearts. Learning difficulties. Damaged vision. Brain damage.

The risk of NOT doing radiation can be just as bad...relapse.

Paul.

Moving Right Along!

Things are going along quite nicely so far this week for Carson.

• The spinal tap at the clinic went very smoothly
• We have had no nausea
• Tuesday's at home chemo went by without a hitch
• We hope the same for Wednesday.
• Carson still has a lot of energy to spare and is feeling great, despite a extremely low ANC count. He was up at 5:30 AM today and has done nothing but play cars with Nona all morning long.
  

In other news:

Francesca had yet another awesome swim meet over the weekend. This was a meet where the 11-12 year old set were required to swim 500 free, 200 individual medley, 100 fly, 100 back and 100 breast. They accumulated points according to how they placed in each event and those points added up to a final score and an overall top 16.

I don't know how she does it, but Francesca posted four new personal records out of the 5 events she swam. Overall, she placed 9th among 12 year olds from all over Virginia. Not bad, considering she's only been 12 for 4 months. Way to go Francesca!