A Round for Everyone and a Belt for Carson

What started as two trips to the ER with Carson nearly two weeks ago turned into a bout of sickness for everyone. We all had some version of the stomach flu over the next week and ended up full circle with Carson and tummy issues again last Saturday. Thankfully, this did not turn into another trip to the ER.

No one has been sick with something for 3 days now, so maybe we are over this. (I say while knocking on my wooden end table next to me.)

To celebrate a new period of wellness, Carson and his friend Andy tested for and received their very first Knee High Ninja belts on Tuesday evening. It is so strange to me that I again caught myself holding back tears over the "9 seconds of discipline" that it took for Carson to earn this belt.

With Francesca, if she'd done Tae Kwon Do, she would have gotten her belt. There would never be a question, it was expected and practically taken for granted that she would succeed. We would already be thinking about the next thing on our list and making plans for that event.

How different it is now; I am actually able to cherish the moment! How sad, and wonderful at the same time, that it took a child with cancer to teach me this?!

The New White Belt Knee High Ninjas

Like Things Used To Be

Things are back to the way they used to be last year: A weekend swim meet for Francesca and two trips to the ER with Carson. After all, we couldn't just leave well enough alone; with only ME going to the doctor weekly. That would just be RIDICULOUS! Who would have thought that such a thing could occur?

Carson came home from school on Friday complaining of nausea, stomach ache, etc. He had no fever; and after a consult with the clinic we decided to take the "wait and see" approach. So, we WAITED, and about 8 that night, we SAW that he now had a fever past the magic tipping point of 100.5.

Phone the on-call oncologist (which amazingly was NOT Dr. Chao this time), head to the ER. No symptoms other than congestion, cough and fever. ANC count high enough to go back home after a round of IV antibiotics. Plan to repeat tomorrow. Amazingly, this is all accomplished in just under 3 hours. I think that's a new record for ER visits - or else we're just getting way too used to this.

In the meantime, I stayed home and got Francesca ready for her swim meet, woke her up at 5:50 AM and sat around for the next 5 hours to watch her swim the 200 Free. The boys slept in until 9:30, which they needed.

No fever on Saturday morning. I took him back to the ER in the afternoon and we were done in about 2 hours, which prompted a celebratory dinner at El Tio where a large quantity of chips and tortilla soup were inhaled.

Feeling better at our 2nd visit to the hospital. Coloring a SpiderMan picture and watching Madagascar.

Now we are at Sunday. Francesca and Paul are home from the swim meet - it is only 9 AM. There was no power at the pool, so the meet got cancelled. Does it ever end?!

-Jennifer

We are Expanding

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

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

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

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

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