Sunday morning

Pray for RENEE's counts to go up. Her neutrafils (ANC) are still 0. Her wbc is still at .6 and it is unusual for it to take 3 weeks after end of chemo for counts to go up. At this rate they will have to do a bone marrow aspiration to find out what's going on.

They have doubled her dosage of GCSF in the hope that it will help her counts to come up

Her platelets were down to 6 from 53 earlier and she got another dose of platelets this morning. Renee is feeling fine otherwise. She is on a concoction of antibiotics to keep her from getting infections.

Renee enjoys reading and watching movies. Last night we watched Waterboy.

Martha and I plan to go to the Brooklyn Tabernacle this morning. Renee appreciates your prayers and phone calls at 646-785-4343

Martha had a bone marrow aspiration this week. She found it less painful than the dentist.

We read and struggle through these difficultiies. We struggle with casting our cares on Him who cares for us. Our biggest battle is to be able to simply rest in God's love. To allow him to carry us through these sands of time. To remember that our duty is to glorify God in everything.
--
Raymond Dueck

Journey into Trust

Journey into Trust

I’m on this roller coaster
Inside a mountain
It is so dark
I can’t see a thing
I’m so scared
I’d crumble to my knees
But I’m strapped in.
I’m hanging on for dear life
I feel so out of control
Am I going to lose my glasses?
They do me no good in this dark world.
But I want to hang on to them.

I don’t know why I’m on this ride
How did I get here?
Was it my decision?
Or did someone talk me into it?
I don’t know.

I’m being pulled up and up and up
Then we go plunging into a fall
It seems like forever as I hold my breath
Too scared to scream
Just before we hit the bottom
We take a sudden turn.

The ride levels out for a while
I catch my breath
Suddenly we are spinning
Am I upside down or right side up?
Help!
Stop the ride!
I have to get off!
But we keep going.

Somewhere along the way
I’ve become aware that
I’m not alone
I feel His strong arms around me
He feels warm and comforting.

"I will hold You."
"I love you, I will always love You."
"I will never let you go."
“Don't be afraid.”
"It's going to be OK."
His words are so reassuring.


I’m counting on it
I lean on His shoulder
And hold His hand
I feel myself relaxing.

Thank you, Jesus.
I’m beginning to understand that you came
Not to explain away suffering and pain.
You came to fill it with your presence.
I’d rather be on this ride in the dark with You
Than alone in the light.

--
Martha Dueck

Martha got stuck today

That is - they did a bone marrow biopsy to do comparison studies to see if she could be a close enough mismatch to do another unmatched bone marrow transplant. See below and our website at Duecks for links to more info.

Renee was walking quite a bit today. She is feeling perfectly well and restless about not being able to go to her friends' wedding.

I was at the LifeLight Golf tournament today. Marge and many others had done a wonderful job of getting it all together to raise well over $10,000 for the new printing of New Testaments. 68 golfers had a very good time for a very worthwhile cause.

Alayna and Kara spent the evening at home today.

I am planning to fly Friday. Karalee has a class on Monday night and our neighbour, Brenda, has agreed to take Karalee to the class, because Alayna has a class at UoW at the same time.

Is a Christian blog better than blogspot?

http://pcbn.smartcampaigns.com/blog/279

Renee was hoping to travel on Friday to friends' wedding near Saskatoon, but her counts are not coming up fast enough. Please pray for her

I am booked to fly to NYC on Friday. That will leave Kara to fend for herself with Alayna's busy social schedule.

Trudy left yesterday

Renee was hoping to fly to Regina / Saskatoon on Friday. Her counts are not yet up. So she doesn't know, but she said she wanted to remain optimistic.

Last minute airfare is expensive and reward flights may or may not be changeable.

Brooklyn Tabernacle

Martha and Trudy went by subway to Brooklyn Tabernacle for the 12:oo service. After the 2+ hr service they had lunch at Junior's, a restaurant that is famous for its cheesescake. On the way back to the hospital they stopped at Time Square.

Alayna, Karalee, and I went to Eastview, our home church. This was the 1st weekend with 3 services. We were at the 11am service and it was packed out as usual.

Pastor Lorne's text was Matth 23 about Religion vs Relationship. Excellent reminder. God, the Creator of the Universe wants a relationship with us.

Met Dave and Elfrieda Loewen in church. They have experienced their share of health and family issues. Dave is going to FSU again this? week.

Many people stopped to say they are praying for us and Renee.

Justin has called home a few times this week when I was not home. He still has no phone so I can't call him.

Renee got more platelets.

Renee wants to go to the wedding

Martha and Trudy went to Little Italy for lunch today. There happened to be a street festival going on and so lots of streets in the area were blocked off with booths all over and lots of people. They had a good time.

Renee is doing well, except that her counts are not coming up yet. She got platelets again today, and she is on antibiotics for a while yet.

I want to see Renee and her mom, so I booked a flight to New York for next week Friday. Renee wants to travel 2 hrs west of Saskatoon to her friends' wedding. So what do I / we do? Fly east while she flies west? Not likely. Something to pray about!

Here is the email she sent me:
the doctors are still not sure if I'll be able to go to ang and leigh's wedding, but if I fly into regina I have a ride to the wedding, so I'm chosing to be optimistic and say that I'm going to go. I was looking at flights, and I think what might be a good idea is to fly in and out of winnipeg, so I can be there for a bit too, and then get a return from winnipeg to regina. It doesn't seem to be much more expensive than flying straight to regina and then I could spend sometime at home too, depending on how long they'll let me be gone for. So I looked on air canada, and this is what I'm thinking...i fly to Winnipeg on the 22nd, and then to regina on the morning of the 23rd, back to winnipeg on the 25th or 26th, and then back to New York, whenever they want me back there. of course, my counts still aren't going up, and don't know when they'll do that, but like I said, I'm being optimistic and believe that they'll come up any day now. I thought I'd let you know so you can start looking for flights or whatever too.

Love, Renee

www.reneedueck.blogspot.com

Thanks for your prayers

It's good to be reminded that you are remembering us. Today Renee got 2 units of platelets. She should already have gotten platelets yesterday, but for some reason or other they decided not to. Today, after she had already been transfused with one unit of platelets she got a very severe nose bleed. So they gave her another unit.

Trudy and I went to Macy's, the world's largest department store. I felt bad that I had not been there for her. I got Renee some more night gowns and Trudy got her a teacup, so we could have tea parties.

Trudy and I have been having dessert parties on the roof of our building which is 36 stories high. The view from up there is awesome and kind of surreal. - Martha

Good morning

Martha says she would like to share a verse from Romans that she read this morning. "For his Holy Spirit speaks to us deep in our hearts and tells us that we are God's children. And since we are his children, we will share his treasures - for everything God gives to his Son, Christ, is ours, too. But if we are to share his glory, we must also share his suffering."

Renee feeling much better!

Now Renee can get two balls to the top of her Spirometer! Yesterday Dr. Steinherz said she would need a total of three weeks of antibiotics till her white cell counts come up, considering how severe the infection was. Renee has come a long way. A week ago she could hardly get out of bed because she had so much pain and she would get out of breath. We thank God for His healing hand on her and for all your prayers.
The prayer request now is that her white cell counts will go up soon and that the doctors will be divinely guided as they weigh all the pros and cons of the three options for what to do after she recovers from this round of chemo and the severe infection. If Renee had a sibling that was a match, they would just quickly do that, but since she doesn't, they have to make a decision whether they will do one of the following: a) no further treatment which has a high risk involved of the leukemia relapsing b) transplant using an unrelated matched donor which means anybody other than a sibling. 3) using cells from me again. The details involved in making this decision are very complicated. So we ask you to pray that the right decision will be made.
Ray's sister Trudy is here now. It is so wonderful to have somebody here to keep us company. I met somebody on the street this morning that I knew. In this big city with all the millions of people I happened to cross paths with the chaplain from the NYP that came to see Renee while she was in the ICU over there. What are the chances that we happened to be walking along the same street at the same time? He asked if Renee would like him to stop by to see her and I assured him that she would. We put in a request with the social worker here at Memorial to have the chaplain come by, but we haven't seen him yet.
The following is a prayer that we could use to pray for each other. "God, I pray that we will press ever closer to You, that we will not be discouraged in this battle, but be able to stand strong. That our children will all be strong believers who will use their talents to glorify You. That our lives will be a testimony to the goodness of the Lord. Thank You God that your love attends every moment of our lives - even the toughest, loneliest, most painful and most desperate. You are always working things out for our good when we look to You to do so. You want us to come humbly before You to experience a breaking in our independent, self-sufficient selves, and grow us into compassionate, patient, spiritually strong, God glorifying people.... Our suffering will seem like nothing compared to the glory You will work in us; if we have the right reactions in the midst of the struggle. Cleanse my heart, O God and renew a right spirit within me. Amen."
Martha

Sunday 9-11

Gerald and Bev Huebner came for a visit today. We thought we would go to theTrinity Baptist Church this morning. We had breakfast ready for Gerald& Bev and then we went for a fast walk to get there for the 11:15 service. Whenwe got there, they told us that today their service started at 10 am and theywere just about to dismiss when we got there. They would have a street partyas soon as the church was dismissed.

They had a huge street fair on 3rd Ave today from 68th Street to 88th withbooths along both sides of the avenue. So we shopped a bit along the avenue,went to Central Park, and back to 3rd for a bite to eat (gyros), and then tothe hospital to visit Renee. After that they bought some more souvenirs on 3rd and then went to see Gerald's brother Vic at Montefiore in The Bronx at Montefiore. See the pictures at Kodak. See all ourpictures at blogspot.

Each day Renee feels a bit better. Yesterday they did an ultrasound and today they did another x-ray. Her liver and gall bladder looked OK but she still has some pain and some fluid in her lungs. She is getting stronger every day and wants to go for a walk around the hospital today.

Renee has a cell phone now. The number is 646-785-4343. The plan is unlimited evenings and weekends. She would like to talk to you but she may not have your number. She would appreciate calls from her friends or if they would email her with their phone #s so she can call them. email Renee.

My sister Trudy is booked to arrive here on Tuesday, so I am booked to leave LGAMonday at 5:46, MSP at 10:09 and arrive in Winnipeg at 11:29

Thanks for your emails and prayers--Raymond Dueck

Back at Memorial

Renee is back at MSKCC!

She is still weak but feeling much better. She is able to suck the 1st ball to the top of the Incentive Spirometer now.

Yesterday we hung around most of the day at NYP waiting for Renee to get transferred to MSKCC. I could not find an internet port there, and they were grumpy about the use of cell phones.

Renee now has her own cell phone, so please call her. She has it lying on her bedside table, just waiting for it to ring! The number is 646-785-4343. She has unlimited evenings (9 pm – 7 am) and weekend plan. The number on her hospital bedside phone is 212-639-4075. She is likely to be here for the next 2 weeks getting over the infection.

That is Ashley in the picture, blessing us with some of her songs when Renee was still in the ICU.

Dr O’Reilly and Dr Steinherz stopped in today. Dr O’Reilly said they were still trying to decide what the next move is including whether or not Martha should still be considered as a possible donor. So far the results of the cousins’ HLA typing has not resulted in a match. They are looking at 10 potential unrelated donors.

Check Renee’s blog and respond back to her blogs. If you dare you could also check my new blog. Check out the latest photos.

I’m hoping to be back in MB next week and my sister Trudy might make it to NYC to spend some time with Martha and Renee.

------------email from Renee ---------------------------
Hello,
I’m sure many of you, even though you are getting emails from my dad and wondering how I am actually doing. I can’t get into my own email because my room here at New York Presbyterian does not have internet access. I’ll have to wait to send this until I can access.

I’m at another hospital across the street, and I’m in the pediatric ICU (intensive care unit), which is actually not quite as scary as it sounds. When they told me ICU I was picturing a long sterile white room with unconscious people all lying still, in glass cubicles all hooked up to dozens of machines. It’s actually just a regular hospital room only there’s a nurses station in the corner and you have your own personal nurse at you beck and call.

I went into Urgent Care at Sloan-Kettering because of (you guessed it!) a fever. In some ways I was almost relieved because now I didn’t have to worry about when or if was going to have to go the hospital. I hate the hospital, but when you know you’re going to have to be there anyway, it is in a way relieving to be there. So I spent the night in urgent care and then they transferred me upstairs to the pediatric observation unit, because not only did I have a fever but my blood pressure was dangerously low. I guess it’s kind of like ICU. I’m not really sure what the difference is.

Anyway, so as they’re checking out my vital signs and attaching monitors and things to me, I get really dizzy and can’t breathe, they told me I had some kind of seizure. I’m not really sure what happened except that I when I woke up there was like 10 doctors in the room pumping oxygen into me and sticking me with needles and stuff. I think I passed out on at least one more occasion that morning. From then on the day was mostly a blur of the same thing.

I had to have an oxygen mask on, and they suspected that my central line was responsible for the infection, and because the situation was so extreme they decided to take it out and put a new one. They also tried to put in something called an arterial line, because it measures blood pressure more accurately than a cuff. Anyway, it took them two tries to get the central line in and many more tries to get the arterial line in (which they never did). But I managed to stable out sort of and keep breathing. Then the doctors decided I would get better care in an ICU ward, mostly because my blood pressure was all over the place and I was needing a lot of oxygen. I guess they’re just more capable at handling a wider variety of problems here or something.

I had to actually physically move to another hospital, but it’s just across the street. I had a short little ambulance ride across the street. I was almost funny the amount of time it took to get me on the stretcher and everything compared to the short time it took to actually drive there.

Like I said, ICU wasn’t nearly as scary as I’d been anticipating, but they did constantly monitor my blood pressure and oxygen, and they had me on a bunch of meds, for my blood pressure, and the inevitable antibiotics. Plus I had to keep wearing this oxygen mask, giving me 100 % oxygen. But I slowly stabilized, and they kept lowering the oxygen levels and the blood pressure meds. Nothing really too dramatic happened here, just slowly recovering from the shock my body had just been through. I mostly slept a lot when not being poked and prodded and asked all kinds of questions. And they seemed to like doing chest X-rays at least once a day. My friend Ashley was here until Wednesday. Thankfully I had been feeling good and able to do quite a bit for most of her visit, because the last couple days I was so out of it. It was still nice to have her here though. It’s always nice to have at least someone around even if it’s just when you wake up in the night and can see someone sleeping on the chair next to you. It doesn’t feel quite as lonely.

Well, good news, I’m getting out of here today and going to back the regular ped ward at Sloan-Kettering! I’m off the oxygen mask and my blood pressure is stable. I’m feeling a lot better and was even able to get out of bed and sit in a chair for awhile.

On other news…I have finally come out of the dark ages. I am now not only the proud owner of a lap top, (and I have my own blog), but I also got my very own cell phone, so you will all have a consistent number to get a hold of me. It’s a T-Mobile phone, so sorry all you verizon and cingular users…no mobile to mobile calling. However, evenings and weekends are great, and it had a good long distance plan to Canada. Plus T-mobile was the only cell phone company my dad could find that would sell a phone to a Canadian. Seriously, these people are nuts, even a passport doesn’t count as valid ID unless it’s American. Now, I probably have a lot of your numbers, but knowing me, they’re written on little scraps of paper tucked away somewhere I will never find unless I’m not looking, so I’m going to give you all my number 646-785-4343. I hope to be talking to some of you soon!
Well, that’s it!

Love, Renee

See our pictures

Click here for more Pictures
Monique, Renee, Karyn, Shana

This picture was taken at Krista and Steve Smiths' wedding on August 13, 2005. Renee got a weekend pass to come home and attend the wedding. The day before the wedding was the first day that she felt good except for a headache, and the day of the wedding was the first day she felt really good. On Monday after the wedding she had to go back for more chemo. On Sunday Spt 4 she fell critically ill. By Friday Spt 9 she did not require any more oxygen to maintain her 97 oxygen level.

Renee, Karalee, me 

Dr O'Reilly writes

Richard J. O’Reilly, MD.
Chairman, Department of Pediatrics
Chief, Bone Marrow Transplantation Services
Claire L. Tow Chair in Pediatric Oncology Research

August 24, 2005
Mr. Roger Belton
Belton & Grom Financial Services
4-396 Assiniboine Avenue
Winnipeg, MB
R2M 0T4

Dear Mr. Belton:
I understand that Mr. Raymond Dueck has asked you to assist him and his daughter, Renee Dueck, in the insurance claim that they are making with respect to Renee’s recent medical treatment in the U.S.A.

I was contacted by several physicians treating Renee after admission to The Cleveland Clinic Foundation on June 24, 2005. At that time she presented with a two-week history of cellulitis of the legs as well as multiple ecchymoses. She had been seen by Dr. Shawn He and was noted to be severely neutropenic with a neutrophil count of less than 500 mm3. A marrow aspirate and biopsy demonstrated acute myelogenous leukemia of M2 type. The doctors consulted with me because of her exceptional history.

Renee is a unique patient in that she was born with an autosomal form of severe combined immune deficiency and received an HLA haplotype disparate T cell depleted transplant from her mother after conditioning with busulfan and cyclophosphamide here at MSKCC on June 26 1984. This transplant resulted in durable engraftment of maternal lymphoid elements, both T cells and B lymphocytes, with full reconstitution of both T cell mediated and antibody mediated immunity. She did not develop any graft disease. In the interval between her transplant and her admission in Cleveland she had enjoyed good health, normal growth arid development and had no history of significant infections. She had been followed by her physicians in Manitoba.

However, at the time of her presentation in Cleveland there were no recent studies regarding her immune function or her state of chimerism. Because her original transplant had been performed by our Pediatric Marrow transplantation Service at Memorial Sloan-Kettering Cancer Center using a technique which we had developed and initially introduced in 1980 as a way to prevent graft vs. host disease following HLA disparate transplants, and, further because the family have maintained close contact with us because both Renee and her sister Karalee were transplanted here at Memorial Sloan-Kettering Cancer Center, Dr. Shawn He consulted with me along with Dr. Bow in Winnipeg concerning the most effective way to deal with this unprecedented occurrence of leukemia in a child with severe combined immune deficiency more than 20 years after her original transplant.

At the time, I conveyed to them the critical importance of determining the nature and origin of the leukemia since this would determine the most appropriate approach for her therapy. Our group was primarily concerned about the origin of this leukemia. We expected that it would be an AML that arose in the child’s own cells as a result of the known late effects of chemotherapy Were this the case, the AML would carry an exceptionally grave prognosis and would be appropriately treated with a marrow transplant alter achieving first remission, preferably using the mother as a secondary donor. At the time, I also raised the unlikely possibility that the leukemia would be derived from the maternal donor. In this case, if the leukemia had poor cytogenic features and required a transplant, a graft from an alternative donor would likely be the best treatment option, because the mother’s own cells would be unlikely to exert a significant negative effect against the regrowth of leukemic cells late after transplant. In fact the latter occurrence is the case.

We were able to test the patient’s leukemic cells and her marrow cells as to their origin. The cells were exclusively found to express the full maternal HLA genotype at the DNA Level. Thus this is a unique occurrence in the world’s experience with transplants for SCID. It is doubly of concern because the patient’s sister, Karalee, also received a depleted transplant from the mother. Thus far we have no evidence that the mother or the patient’s sister have any hematologic abnormalities. We are planning to assess these individuals, however, for rare cytogenically abnormal clones that might represent evidence of clonal disease.

On analysis, Ms. Dueck’s M2 AML also reveals cytogenetic characteristics that indicate a highly aggressive disease. Cytogenic evaluation reveaLed 11 metaphases with 48 chromosomes that contained extra copies of chromosomes 8 and 12. Fish evaluation further confirmed the presence of trisomy 8 in 19 % of the cells examined. DNA sequencing again revealed that the leukemia was derived from the maternal donor.

Because of the nature of her leukemia, and the likelihood that she would need a complex transplant procedure, she was initiated on chemotherapy here at Memorial Sloan-Kettering Cancer Center. She received 2 courses of DCTER and tolerated these induction courses well. She is currently in remission of disease with less than 1% blasts. It is planned to give her a consolidation on the DCTER protocol. Thereafter, she would best be treated with a marrow allograft. Because the leukemia is maternal in origin, we do not feel that the maternal donor would be the appropriate donor for a secondary graft.

We have initiated a search from the unrelated registries. If an unrelated donor is identified a secondary transplant from a matched unrelated donor would be appropriate, In this case, donor selection based on HLA compatibility with the patient’s own typing is critical. However, because the patient’s hematopoietic system is all derived from the mother and the antigen presenting cells in the various tissues of her body are also maternally derived, a transplant of unmodified marrow from such a donor, matched to the host, would likely lead to severe and probably lethal graft vs. host disease because of host-matched donor’s alloactivity against HLA disparate maternal antigen presenting cells.

For this reason, we consider it imperative to perform an adequately T cell depleted marrow transplant after myeloablative cyto-reduction. This would abrogate the potential for a lethal graft vs. host disease, or, more accurately graft vs. graft reaction, in this patient. At our center, procedures used here indicate that such transplants are associated with a highly favorable long-term disease-free survival with an extremely low incidence of leukemic relapse in the post-transplant period. Our studies, which have been published, also clearly indicate that the risk of relapse following such a transplant is no greater than that observed following an unmodified transplant. Furthermore, since a transplant from an HLA matched unrelated donor would differ by a full haplotype from the mother’s leukemic cells, we can anticipate that natural killer cells emerging from the secondary donor graft would exert potent anti-leukemic activity against the maternal AML cells.

Ms. Dueck, at the time of her initial transplant, was referred from Winnipeg to our center because we were uniquely able to perform HLA haplotype disparate T cell depleted transplant for her rare form of SCID. In the past, we have cooperated closely with the medical centers in Winnipeg and have trained them in our techniques of T cell depletion which they have since used successfully for the treatment of a significant series of children with SCID. However, this patient represents a unique instance of a leukemia developing in maternal cells. The complexity of her next transplant will be significant and will require special techniques for monitoring engraftment and any clinical evidence of GVHD.

Renee’s initial transfer to our center was agreed to by all the physicians at the time of diagnosis because of the rarity of a leukemia in patients transplanted for SCID and the critical need to define the origins of the leukemia in the patient. Knowing now that the leukemia is derived from the mother only further confirms the importance of these initial evaluations we were able to perform. These would not have been performed at other centers because they did not in have immediate access to laboratories able to isolate the leukemic blasts and thereafter perform the DNA sequence based HLA typing of the leukemic cells. Furthermore, because of the likely presence of mixed chimerism, VNTR typing would probably be inconclusive unless clean preparations of the leukemic blasts were isolated. Thankfully we were able to perform these assays and to our surprise found that the teukemic blasts were of maternal origin. This radically changes the treatment strategy most likely to provide this young woman with the possibility of cure.

I thank you for your help and understanding in this matter. At the time, of her diagnosis, her referral here to Memorial was felt by all to be in her best interest. The diagnostic studies which, we were able to perform here further confirm this opinion and for this reason we request your assistance in obtaining approval for the insurance claim made for Renee Dueck for her initial treatment here. We also further request that her subsequent therapy, particularly her transplant, which is likely the treatment of choice for her disease, also be performed at this institution.

Sincerely yours,

Richard J. O’Reilly, MD
Chairman, Department of Pediatrics
Chief, Bone Marrow Transplantation Program
Memorial Sloan-Kettering Cancer Center

Dr O'Reilly June 27 05

June 27, 2005
British of Columbia Ministry of Health Services
RE; Renee Dueck

Dear Sirs/Madams:
I am writing to request medical insurance coverage for Renee Dueck, a 21 -year-old Caucasian female from Manitoba who has recently been diagnosed with an M2 morphology acute myelogenous leukemia. This patient is a unique patient in that she was born with an autosomal form of severe combined immune deficiency and received an HLA haplotype disparate T cell depleted transplant from her mother after conditioning with busulfan and cyclophosphamide on July 26, 1984. This transplant resulted in durable engraftment of maternal lymphoid elements, both T cells and B Lymphocytes with full reconstitution of both T cell, mediated and antibody-mediated immunity.

She did not develop any graft vs. host disease. Thereafter, she enjoyed normal growth and development, without significant infections. The current state of myeloid chimerism at this time is not known. However, in all previous studies, the antigen responsive T and B cells in this child are maternal in origin. Her most recent assessment of T cell function dates to one month ago at which time she had a full complement of normally distributed T lymphocytes and normal responses to mitogens and antigens.

Over the last 2 weeks the patient developed a cellulitis of the legs as welt as multiple ecchymoses on the legs. At this time, she sought a medical evaluation at the Strongsville Division of the Cleveland Clinic, and was seen by Dr. Shawn He. She was noted to be severely neutropenic with a neutrophit count less than 500 mm with normal platelets. A marrow aspirate and biopsy performed by Dr. He demonstrated a marrow containing 32 % myeloid blasts, M2 type by morphology and by immunophenotype.

The patient will clearly need appropriate treatment for her acute myelogenous leukemia. The special circumstances of this child are such that accurate diagnosis of her disease is imperative. First, it is important that we ascertain the cell of origin of the leukemia. The patient was cytoreduced in 1984 with busulfan and cyclophosphamide. As a result there is the possibility of developing a late secondary

hematologic malignancy in her own cells. At this stage after the transplant, this would be rare since secondary leukemias, if they occur, usually develop within 15 years of the treatment. Nevertheless, this is the most likely possibility. In this case, it would be anticipated that the myeloid progenitor cells are derived from the patient. ALternatively, it is possible that the myeloid leukemia has evolved from the blood forming cells derived from the patient’s mother. The mother is healthy and hematologically normal. She is aLso HLA haplotype disparate from her daughter.

The implications in terms of treatment are quite important. If this AML has attributes of a chemotherapy associated secondary leukemia, it must be considered a high risk form of the disease. Such an AML would be appropriately treated with aggressive induction therapy with daunomycin and cytosirte arabinoside, possibly also including VP-16 and thioguanine since the DOCTER regimen has been associated with a particularly higher likelihood of sustained remission. An alternative regimen, potentially including only the daunomycin and ARA-C, could be considered for a primary AML. The treatment options for subsequent therapy also clinically depend upon these initial evaluations. If the patient has a secondary AML in her own hematopoietic cells, a transplant in first remission is clearly the treatment of choice. In this case the patient does not have an HLA matched sibling. However, the patient is durably engrafted with a lymphoid system that is entirely derived from her mother who is HLA A, B, DR disparate. For a transplant, we would propose to give a secondary graft after suitable cytoreduction from the mother who is the original donor.

A use of any other donor potentially matched to the patient entails a major risk of graft rejection by residual fully functional T cells derived from the haplotype disparate mother as well as the risk of a potentially lethal graft vs. host disease due to the fact that there are enough antigen presenting cells of maternal origin in this child to permit the stimulation of allo-reactive donor cells and subsequent generation of a lethal graft vs. host in the post transplant period. If the mother’s graft is used, a T cell depleted graft would be the only option. However, cytoreduction could be selected to maximize antileukemic effects, since the risk of the mother’s own T cells, already resident in the child, rejecting the grafts is minimal. Our studies here since 1980 have demonstrated no increase in the risk of leukemic relapse following a transplant for AML either in primary or secondary AMLs when a T cell depleted graft administered after myeloablative cytoreduction has been administered.

We would propose to have her come to Memorial Sloan-Kettering Cancer Center. Diagnostic marrows will be obtained. We will attempt to isolate, culture and identify the cell of origin of her AML. She will also have studies performed to determine her current state of chimerism, specifically to determine the origin of her T cells, B cells and normal progenitor cells. She could then be induced with a chemotherapeutic regimen. This could be started here at MSKCC and potentially maintained at home in Winnipeg.

I do feel, however, that if her disease warrants a transplant (at this point I expect that it will) that the transplant be performed at MSKCC because of our special expertise in transplants of HLA haplotype disparate T cell depleted marrow transplants, particularly for the treatment of severe combined immune deficiency and for leukemic disorders, The issues here are absolutely unique in the experience for severe combined immune deficiency. To my knowledge this is the first case of any leukemia occurring in SCID late after a transplant procedure. More importantly the unique chimeric state of this patient entails a significant number of difficult choices in the selection of treatment, transplant, cytoreduction and the type of transplant administered.
I would be happy to discuss this case further with you at any time. I urge your approval for insurance coverage for this unique patient so that we can define her disease adequately so as to be able to plan a potentially curative approach for this unique and potentially high-risk form of AML

Thank you for your consideration.
Sincerely yours,
Richard J. O MD
Chairman, Department of Pediatrics
Chief, Bone Marrow Transplantation Program
Memorial Sloan-Kettering Cancer Center

Renee is feeling good

Date: Mon, 27 Jun 2005 08:12:03 -0500 [06/27/2005 08:12:03 AM CDT]
From: Raymond Dueck Subject: Renee's treatment
Thanks for praying.
Renee is feeling good. The swelling in her legs has pretty much dissappeared. We are not sure at this point what the next step is. Dr O'Reilly would like to see her in NYC. It would be nicer if the treatment could be done at home. We have not yet heard from the Winnipeg doctors. Can they do the necessary procedures there? Will they give a letter to MB Health to authorize coverage at NYC?
We are sitting here waiting for answers.
Renee appreciates your phone calls at 216-444-1303
--
Raymond Dueck

from Cleveland Clinic

Date: Sun, 26 Jun 2005 16:06:07 -0500
From: Raymond Dueck
We were referred to you by Dr Bob Friesen and by Sharon Boychuk Our daughter, Renee, had SCIDS and received a bone marrow transplant in NYC at MSKCC under Dr Richard O'REILLY 21 years ago. This year she was on tour in the US and suffered several occasions of swelling/bruising on her legs. On Tuesday she dropped in to a Cleveland Clinic. They did blood tests and bone marrow aspirations and determined that she has acute myelogenous leukemia. She was admitted to hospital on Friday. Her doctor here is Brad Pohlman, M.D. a member of the transplant team
Cleveland Clinic may be a good hospital but Winnipeg is home for us. What complicates the situation is her unmatched bone marrow transplant when she was a baby. Dr O'Reilly's team did a stem cell transplant using bone marrow from her mother. Dr O'Reilly feels that the safest place to treat her is at Memorial in NYC. We expect to fly to NYC with her on Monday.
If you and Dr O'Reilly could agree that the chemo therapy could be done in Winnipeg, then we would return with her as soon as Dr O'Reilly gives the go-ahead.
If you agree that MSKCC is the right place for her to get the best treatment, we will need a letter from you to Manitoba Health to that effect, so that they will pick up most of the tab for the treatment.
Dr O'Reilly can be contacted at O'Reilly, Richard J. Chairman, Department of Pediatrics; Chief, Pediatric Bone Marrow Transplant Service; Claire L. Tow Chair in Pediatric Oncology Research (212) 639-5957
Your time and effort is much appreciated.
On behalf of Renee
--
Raymond & Martha Dueck

This is the 1st email

From: Raymond Dueck
To: Undisclosed-Recipient:;
Sent: Friday, June 24, 2005 11:52 PM
Subject: Renee is in hospital
She was admitted today at Cleveland Clinic Foundation in Cleveland with acute leukemia our flight leaves at 7 a.m. Saturday morning we have no idea when we will be back please pray for her and God's hand of healing on her and wisdom for her doctors
Renee has been admitted to
http://www.clevelandclinic.org/
Her doctor is Anjali Advani, M.D.
http://www.clevelandclinic.org/cancer/physician/docs.asp?StaffID=4490
She is on intravenous antibiotics
The phone # at her bedside is 216-444-1303
Your prayers are much appreciated!
Raymond & Martha Dueck
2 Eagle Court
East St Paul MB R0E 0L2
204-661-5348
cell 204-782-2112
Martha's cell 204-771-7559
204-364-2454 fax
Raymond@Dueck.net
http://www.duecks.com/
Check out
http://www.thelifelight.com/
Quoting Ken and Carolee Neufeld
Dear Friends,
Please pray...
Today I was on a day trip with a friend, Ray Dueck, a business man and president of LifeLight Ministries. A call came on his cell phone that no dad wants to receive. His daughter Renee had just been diagnosed with acute leukemia. It was the doctor calling. Renee is 21 years old and is on a YWAM (Youth With A Mission) team. At this time the team was in CLEVELAND, on an itinerary in the US. We receive Renee's news letters and it is evident that she is passionate about serving Jesus.
Ray and Martha will be on a flight at 7am, Saturday, to be with their daughter and to arrange medical treatment in New York. Please take a moment to pray for Renee and her family. If the Lord places them on your heart, continue with us in prayer for them.
Ken
Living Free Ministries
732 McMillan Avenue
Winnipeg, Manitoba
R3M 0V2
(204) 284-1973
neufelds@mts.net

Thanks for praying

Hi Renee,
It was so nice again to have a chat with you last nite. This morning my dizziness was gone. I took Alayna to her appointment, actually she drove and then I went to where Dr.Todd Sellick's office is, and waited for Justin. He had been late for his appointment, so they went a bit over 12. We went to Cherry Creek Cafe at Portage Place for lunch and waited for Alayna, but she forgot that she was supposed to come there, but eventually she did.

Justin was quite out of it. He couldn't remember anything. He wanted me to take him shopping to Value Village, etc. but I couldn't take him in that state and Alayna could not stand it. Todd had suggested yesterday when we met with him that it would not be necessary for us to give him any more financial support. He of course was not very happy about that. It is so sad. I had a good cry about that yesterday, but today I feel better. Those lessons from the Bible study have helped me so much. I called Telus and they said the long distance charges always get put on the next month's statement. Does that make sense?

Thanks for praying. Love, Mom