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
Friday, January 27, 2012
Sunday, January 15, 2012
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.
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.
Tuesday, January 10, 2012
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
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
Saturday, January 7, 2012
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
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
Tuesday, January 3, 2012
Good News
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
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
Monday, January 2, 2012
Somewhat Human
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
Kids go back to school tomorrow and I think they will welcome the return of routine - despite what they say.
-Jennifer
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