Friday, October 28, 2005
We went to a park nearby and saw some fall colors on the walk around the park. Later we had a delicious dinner at Jay and Rhoda’s. Click here to see our pictures. The trip to Lancaster took more than 6 hours, including all the spare turns, and 1 1/2 hours just to get oyt of the city. The trip back to NYC took 3 hours including only 2 wrong turns.
Tuesday we met with Dr. O’Reilly to talk about the Treatment Plan.
We have a tough time understanding all the terminology and the implications of the various options, but in summary, here is what I understand:
The math is in favour of chemo only at this point. 50% of chemo only treated AML patients are cured and never see leukemia again. Of the 50% that relapse, 3/5ths of them get cured when they get a subsequent bone marrow transplant. In Renee's case, an immediate transplant adds significant life and health risks, and if she falls into the 50% cure rate group, a transplant will never be necessary.
This is a peculiar situation with some complexities. They could do T-cell depleted transplant from mom (who has all normal healthy cells!) as the donor, if there ever is an emergency treatment requirement. Mom's cells are not likely to be a long-term cure, however, because they do not now recognize the leukemia. To do the unrelated bone marrow transplant from the 10/10 match donor carries a significant amount of risk. The antigen presenting cells that are matched to mom's HLA type from the transplant Renee had as a baby would present a significant risk for GVH (graft versus host or even graft versus graft) disease.
They would expect that mom's cells would be tolerant of the new graft in the same way that they are tolerant of Renee's antigens, and so theoretically there would be no GVH, except that the new cells would see mom's antigens and attack them possibly causing severe GVH. Mice transplants have shown that there are ways of mitigating the possible GVH response by doing a 100,000-cells-per-kg transplant to eliminate mom's antigens, but not transplant enough cells to cause GVH, and then follow it up in a short while with a proper transplant. But it all boils down to the math. And doing this procedure for the first time on a human patient. The overall chances for a cure for Renee are approximately equal one way or the other.
To do a transplant Renee would need the same amount of radiation to be administered as someone would have gotten 6oo yards from the bomb in Hiroshima. There are a lot of risks associated with that kind of treatment, including sterility etc.
Renee's slow recoveries of bone marrow from previous chemo treatments are not necessarily an issue. Again, an emergency T-cell depleted transplant from mom remains an option.
Another piece - not thought about much: some chronic leukemia patients have had significantly less chemo and the transplant takes. Could Renee get that? Depleted T-cell transplants don't take unless there is very low level of immune system. An undepleted T-cell transplant could be fatal.
3-year survival without re-occurance the survival rate goes way up!
If Renee had missing chromosomes or if her leukemic blasts had not disappeared after the first chemo, they would be much more concerned.
What are the chances of Karalee getting leukemia? Not high-- Karalee is to be tested when she gets in on Nov 14.
Renee is perfectly healthy at this point with no evidence of leukemia. If her counts are high enough on Monday, she will start another round of chemo. By the time these next 2 rounds of chemo are done, her counts are going to be low again and if she gets an infection, she would have to be hospitalized. That hospitalization could last for about 3 weeks, with another 3 weeks of recovery before they repeat the process all over again. That means we will be in and out of New York for another 4 - 5 months.
When I asked Dr Steinherz whether Renee could get the chemo in Winnipeg, he was quite emphatic. The kind of runaround we got for a unit of platelets in Winnipeg was not good care. And good care is what she will need to get her through the chemo treatments and subsequent infections. Any human being would give platelets without question when needed. How can the doctors in Winnipeg be so callous? So hung up with "proper procedures"?
Tuesday evening we were invited to Vic & Merle Huebner's place just north of NYC, for a delicious dinner at their home. Renee got to rent a few of Paul's movies. We were privileged to meet Anthony and Christine as well.
The trip back to Winnipeg on Wednesday was uneventful. The earlier trip from Toronto to NYC had an interesting sidenote. I got to sit next to Sam Rockwell, one of the stars in "The Assassination of Jessie James" movie that is being shot in Winnipeg this week. He autographed the Winnipeg Free Press page about the shoot for Karalee to treasure. Sam Rockwell has 48 movies with his name and his next movie is Snow Angels.
Teresa McMillan, is flying to NYC on Sunday to spend a week with Renee. Audrey from YWAM Vancouver is coming on Tuesday for a week. Alayna, Karalee, and I are flying out on Nov 11, the day after Alayna's 19th birthday. Alayna has to be back Monday and Karalee needs to be back Tuesday.
Saturday, October 22, 2005
Would be nice to get some visitors in NY. We still have some airline points left for free (almost) flights. Teresa is coming next week!!!!!
Pray that we would not lose heart. The waiting is waiting. Counts are slow in coming up. Now they are talking about more chemo for Renee. No fun. Wait till the counts return to normal. Don't know if or when there will be a transplant.
We are probably stuck in New York till January so you can send mail. We'll get it. I got a phone for Renee so you could call her daily at 646-785-4343. She tells me not to say please do, or to beg for phone calls, so I won't.
Do I sound garbled? OK. I quit.
Raymond from Toronto
See our new pictures here
We live in E St Paul MB Canada R2E 0L2 and attend Eastview Community Church
See Renee's hospital here
Visit us at www.Duecks.com/
Support our favorite charity www.TheLifeLight.com/
Wednesday, October 19, 2005
No bone marrow transplant.
CT scan for headache tomorrow.
Saturday, October 15, 2005
We went to the hospital yesterday expecting that Renee would have a bone marrow aspirate done, but then because they still do not know if they want to go ahead with the transplant it was cancelled. She needed more red cells however, so that was done. That could have been done in Winnipeg and we could have beenhome for the weekend, but how were we supposed to know?
We had a good Thanksgiving holiday -
- Enjoyed the worship service at our church
- We had a good day at my mom's on Sunday
- We had a wonderful meal together as a family on Monday
- Renee got to see a lot of friends
- We managed to get the platelets that Renee needed
- We had beautiful weather in Manitoba. It had been raining here in NYC the whole time we were gone.
- Our flights back to NYC went good. The seats that we were assigned to on the flight from Winnipeg to Toronto were on opposite sides of the aisle but the guy that was in the window seat on one side was willing to give up his seat and take my middle seat on the other side. The guy that had the aisle seat found a different seat. I'm not sure where, because he was not willing to give up his aisle seat and there was only middle seats left. We were happy to have the extra seat, because Renee can't sleep sitting up and this gave her room to stretch out a bit.
Thanks for praying.
Martha Dueck 204-771-7559
Keep up to date by reading Renee's blog and ours
Send snail mail to Duecks 200 E 72nd Street - Apt 23c, NY, NY 10021
Wednesday, October 12, 2005
Renee and Martha are packing in preparation for the 8 am flight tomorrow morning. They managed to connect all the way home on Friday of last week. We had a wonderful weekend with all of us at the Thanksgiving dinner table. See the picture on our blog.
Renee and Martha spent a great deal of time with the Manitoba hospitals again, trying to get platelets. Saturday was an all day platelet event, getting home at 10 pm. Yesterday was an all day trying to get more platelets, with many phone calls to New York to help convince the reticent health workers here that she needed platelets. She finally got an appointment for more platelets at 3 pm today.
Friday Renee needs to get another bone marrow aspiration. That's all we know at this time. I'm planning on a trip to NYC next week. Thanks for your prayers and support.
Monday, October 10, 2005
On Sunday, our pastor reminded us that "Thanks" is the most important word. Thanks, God, for life!
Friday, October 07, 2005
Bernie met Renee and Martha at the Ottawa airport, to pick them up for the day. When they talked to the Air Canada agent about an alternate connection to Winnipeg, the agent was able to make the change, and they made it home by 3:30 on Friday. After the re-booking Bernie took them to their house and took the attached pictures. They smiled nicely for him, don't you think?
Bernie, Caroline, and Katie had expected Bernie's parents for the weekend, but when uncle Otto passed away, plans changed. Then they expected Renee and Martha for the night, and plans changed again. I hope they had a good Thanksgiving in spite of all that!
Thursday, October 06, 2005
Martha and Renee are travelling 1st thing in the morning. Air Canada had only a few options left for aeroplan. That means they get to Ottawa by 9:30 am Friday and standby for a later flight, or wait till 7 am Saturday to fly home. Waiting is OK because my brother Bernie, Caroline, and Katie live there.
Renee's counts were up again today, so it looks good for the weekend. Next week they will head back to NYC in preparation for the bone marrow transplant.
Sunday we meet at Martha's mom's for Thankgiving dinner, and plan on Thanksgiving at our house Monday!!!
Thanks for your prayers!
Raymond and Martha Dueck
Tuesday, October 04, 2005
She’d love to get a weekend pass to Winnipeg for Canadian Thanksgiving. She has to go to the clinic for a checkup on Thursday and that’s when she gets the word – go or stay. 21 years ago Dr O’Reilly told us we should be able to go home for Thanksgiving. When we asked whether that was American or Canadian, he let us go on time for the Canadian Thanksgiving. Hopefully that will happen again.
They want to do more tests next week and proceed to the bone marrow transplant as quickly as possible. We have not yet heard whether the 10/10 match individual is still ready or willing to donate. Naturally, as with any medical procedure, we are concerned that the transplant will take. There is the possibility of graft vs. graft disease as well as graft vs. host disease. This is uncharted territory, so pray for wisdom for the doctors. We rely heavily on their advice.
Right now, Renee is drawing the GCSF from a tiny bottle so she can give herself a shot through the Insuflon that got installed just before discharge.
I spent some time this week getting enlargements made for Renee and trying to find a vendor that would be willing to sell them. Someone suggested that we should sell them on the internet, but I have not managed to get to that yet. We have sold a number of them at the hospital and Renee wants to enter 6 into an art/show sale that will take place here in New York next month. You can see the pictures by clicking here.
I am planning to fly back to YWG tomorrow. Hopefully Martha and Renee can follow Saturday.
Thanks again for all your prayers and support.
I went to a party,
And remembered what you said.
You told me not to drink, Mom
So I had a sprite instead.
I felt proud of myself,
The way you said I would,
That I didn't drink and drive,
Though some friends said I should.
I made a healthy choice,
And your advice to me was right,
The party finally ended,
And the kids drove out of sight.
I got into my car,
Sure to get home in one piece,
I never knew what was coming, Mom
Something I expected least.
Now I'm lying on the pavement,
And I hear the policeman say,
The kid that caused this wreck was drunk,
Mom, his voice seems far away.
My own blood's all around me,
As I try hard not to cry.
I can hear the paramedic say,
This girl is going to die.
I'm sure the guy had no idea,
While he was flying high,
Because he chose to drink and drive,
Now I would have to die.
So why do people do it, Mom
Knowing that it ruins lives?
And now the pain is cutting me,
Like a hundred stabbing knives.
Tell sister not to be afraid, Mom
Tell daddy to be brave,
And when I go to heaven,
Put "Mommy's Girl" on my grave.
Someone should have taught him,
That it's wrong to drink and drive.
Maybe if his parents had,
I'd still be alive.
My breath is getting shorter, Mom
I'm getting really scared.
These are my final moments,
And I'm so unprepared.
I wish that you could hold me Mom,
As I lie here and die.
I wish that I could say, "I love you, Mom!"
So I love you and good-bye.
P.O. Box 541688
email from Lil Brosowsky
Monday, October 03, 2005
Sunday, October 02, 2005
Yesterday counts were wbc .8 anc .3 platelets 14 hemo 8.7
Today they were wbc .9 anc .4 patelets 92!!! hemo 9 - not sure if they might have made a mistake on the platelets count - last night Renee's platelets were so low she had to get an infusion - well it has never been that high before! If anc gets to .5 tommorrow she will be discharged.
I went to Trinity Baptist this morning. They had 3 baptisms and communion. Pastor is starting a series on Ecclesiastics.
Renee and I went to the rec area for a few hours. The NYC Comedy Fest starts today, and some of the best comics came to MSKCC to start the week here. One of them was from New Zealand. He had never been to NYC before so he tried to figure out what it was we thought to be funny. Not very funny.
Renee had a headache, decided to get some, sleep, and I'm blogging. I found a store that is willing to take some of Renee's pictures and try to sell them. I ordered 100 copies from a printer in Winnipeg, so we have a few to sell yet! Take a look and send us an email telling us what picture you want. Send your e to ReneePics@Duecks.com. For only $20 we will send you a 16 x 20 enlargement of your choice with 20 x 24" mat postage prepaid anywhere in US and Canada.
We moved to room 1425 to get away from the batty old lady. Renee's new roommate is Jill from Michigan. Her husband Rob has a hotel room in New Jersey and travels there and back every day. Jill has had a lengthy battle with cancer already. She is optimistic that she is going to beat it now. Renee's new bedside phone # is 212-639-4403. Her cell # is still 1-646-785-4343. She welcomes your calls.
Saturday, October 01, 2005
ANC was 0.3 this morning - 0.5 means Renee gets out of prison.
I shopped for a webcam but they are almost impossible to find for mac os x
I found one that was supposed to work but it did not seem to light up at all with the PowerBook. The wireless mouse I bought works fine on the mac.
I made chicken noodle soup and we enjoyed it together. For supper we ordered what the hospital served. I got some kind of delicious steak.
Renee did a bunch more work on the Vidir website. Click here to see it.
Martha and Karalee went to grandma grandpa for Thanksgiving supper today. Mom & Dad are going to Ottawa for Canadian thanksgiving. Tomorrow Martha wants to visit with her Mom.
I want to bake some bran muffins but I can't find bran so I bought Raisin Bran. I'll figure out how to make them somehow.
I tried to get a lady that sells jewelry to sell some of Renee's enlargements at her booth. But she sold nothing all day anyway so she didn't sell the pictures. Martha is bringing 100 enlargements from Winnipeg. We'll get to do all sorts of selling. At $20 ea for 11x17 with 16x24 frame is quite a bargain!