Don't Forget!

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!

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

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

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

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

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!!

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!

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

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.