Freedom Soon!
Today the doctors started talking of discharging Harvey from the hospital in a couple of days if things continue to look as good as they are right now. The potential discharge date is Wednesday, April 9th, exactly two weeks since the day he was transplanted.
I am feeling pretty confident things will continue on the same trend and Harvey will come home on Wednesday. How sweet is that! Below is his latest WBC chart. For the first time his white blood cell count has reached 1.0K and fully 0.7K of it are the precious neutrophils. Harvey has now had absolute neutrophil count (ANC) above 0.5K for three days running, the official definition of neutrophil engraftment.
The other things they look for before discharging patients from the bone marrow transplant clinic are stable liver, kidney functions (ALT, AST, Creatinine, Bilirubin, BUN), patient is able to take a shower, change clothes etc with minimum help, able to take all medications orally (mucositis can be a real problem and make it hard to swallow large pills), no fevers of any kind, able and willing caregiver to take care of the diet, medications, hygienic living arrangements etc. Harvey passed with flying colors on all counts. Frankly, I have never seen his liver and kidney scores better than this in the past 7 years!
Getting patients out of the hospital and into home care is a good thing. No matter how hard they try, it is not possible to keep patients as comfortable in an institutional setting as they would be at home. There is also the ever present concern of hospital acquired infections (MRSA and pneumonia spring to mind) and infections are a much smaller risk in a well kept apartment. Fairview Hospital tries hard to give patients many good choices when it comes to diet. But Harvey is still nursing a sensitive stomach and the only foods that do not seem to trigger nausea are things I cook and bring from home. I suppose people revert back to childhood comfort foods when under stress. Feeding him would be a lot easier when he is back in the apartment and I do not have to carry little Tupperware containers of food back and forth. He has lost quite a bit of weight in the past few weeks (64. 2kg to 60.9kg), but has now started to climb back. His weight today was 61.5kg and he is eating better.
The nurses here tell me he is doing very well, most patients take longer than this to get discharged. I cannot be happier about how how smooth things have been since our very traumatic DAY ZERO. Now all I have to do is keep my fingers crossed that some level of chimerism is seen when they do the bone marrow biopsy on Day +21 and that he has potent GVL with minuscule GVHD. Since the time is approaching when GVHD is likely to become an issue, I had better hurry up and write my article on some interesting perspectives on GVHD management.
We will have to stay close to the hospital and outpatient clinic until Day +100. In the first few weeks after discharge from the hospital Harvey will have to make daily trips to the clinic so that they can check him over and take care of any medication changes etc. It helps that our apartment here is just a couple of blocks away, in good weather it is a very pleasant 6-7 minute walk. They also have a 24/7 door-to-door shuttle service. Since we do not have a car here, we use an online grocery ordering service that delivers to our apartment. All in all, a nice little home away from home.
Be well,
Chaya
22 comments on "Some Good News to Report"
Follow-up comment rss or Leave a TrackbackGreat news! I hope all goes well and Harvey gets discharged as planned. Weather is looking up later this week. As we’re here in Minneapolis (with cars), just let me know if you need anything and we’ll help out with transport, groceries, whatever.
Wonderful news! Life in bloom again.
This is all great news! I had actually been hiking in your hometown of Sedona last week so only caught up with things today. You both deserve kudos for all of your hard work, both in researching and reporting things and in physically preparing for this difficult journey, and Harvey deserves the best. For the benefit of the general public who read this journal, I must, however, point out the obvious…despite your protestations to the contrary, the people at Fairview know full well who you both are and unless Fairview operates differently from any hospital that I’ve ever known, Harvey is, indeed, a VIP (the events of day Zero notwithstanding). That statement is not meant to detract from the care given “Jane or John Doe” at Fairview, only to point out the obvious.
I wish you both ongoing success as I, likely, will be treading this path in the future and do appreciate pioneers such as you both and your doctors who will pave my way.
Thanks Jim. We might indeed take you up on the offer of getting a ride to the supermarket one of these days. We dithered about bringing our car when we came here, but driving from Arizona to Minnesota is a pretty dauting task and we decided to fly instead.
Once Harvey is nicely settled down and things are going well, it will be nice to meet some of our Minnesota based friends.
Doc with CLL, I am not so sure about the VIP bit. I think most of the nursing staff here are working flat out, many of them put in 12 hour shifts. I am constantly amazed at the level of gentleness and empathy they bring to their very stressful jobs (DAY ZERO not withstanding). But I doubt any of them have time to browse patient blogs and it is even less likely that any of them have had a chance to visit CLL Topics website.
As for the experts and clinical trial principal investigators who may have had a chance to visit our website, we have yet to see any of them in person. May be that will change once we are out of the hospital and depending on the outpatient clinic instead. We shall see. For now, I am just as happy if there is nothing special going on for Harvey and this is the standard of care any Jane or John Doe can expect.
For those of you interested in the double cord clinical trial that Harvey is on, this clinical trial is a large multicenter trial and it is also offered at the Hutch in Seattle, at Dana Farber (Boston) and M. D. Anderson as well. I strongly urge patients to check out the various transplant centers. Each of them has its own unique style, even if they are following the same protocol. It is best if you find a transplant center that is right for you boht in style and substance. But once you are in the “system”, don’t count on personal hand-holding from the expert that you might have met while making your decisions. I am willing to bet that in most transplant centers the bulk of the care is provided by attending physicians who happen to be on rotation at the time of your stay in the transplant ward and the nursing staff. That has been our experience thus far.
Chaya
Wow! that is absolutely terrific news! Congratulations! Harvey and you and in our throughts and prayers! Paul
Great news. Thinking about both of you everyday. Praying for a good 21st day.
Patty
Just beautiful news. I gotta believe its that MALE cord blood though!
WWW
Wonderful! We’re thinking of you, and hoping everything keeps going in this direction. Stay positive!
Marilyn
What wonderful news! Continued good health & wishes - now we are hoping for a great report on day 21. Our love to both of you. May the good reports continue!
Anne & Alan
Celebrating with you both!! All my love.
This is wonderful news! Rejoicing with you!
Liz
St. Paul, MN
Good news on Harvey and wonderful posts! We had a lot to catch up on after being out of town for most of March, but it is a fascinating tale with (so far) a good ending. Give our best regards to PC.
Bob & Priscilla
Los Alamos, NM
What can we say but “Hooray for Harvey!” And Serena, too.
Exactly what we are waiting to hear…how happy we are in New Zealand…thinking of you both throughout every day and sending love and good thoughts all around the globe to you.
Wow that is so wonderful. All of out here are behind you and supporting you. But I think it is the girl cord blood that pulled him thorugh. Good job and wish you a new beginning. Thanks for doing this for the rest of out here and letting us know the real facts.
I am thrilled and so happy for you and PC. I don’t know if we will get up to Minnesota to visit our son, wife and newborn in May but I f we do, amybe we can get together. I love Minneapolis/St Paul.
I will soon be finishing up my first course in the Masters program, Integrative Health and Wellness, from U of N.J. Who knows maybe someday I can make a contribution to CLL Topics on the latest in Integrative management of CLL!
Terry is doing great…no rebound of the cancer and al his other cell counts are fabulous six monthhs out post R-Chop. His FISH shows 100 male chromosome 46XY..not enough of anything else to count.
We wish you the best in your journey towards ever more vibrant health! Thank you for all you give!
Nancy Moran
Happy feet are dancing for both of you today! Keep up the great work Harvey!
I am so happy for the two of you
Fantastic! This talk of discharge is such encouraging news - keep up the good work!
It’s quite lovely to see the monotonic increase in WBC. The flatness from D+9 to D+11 is curious…any correlation to Harvey’s FUO?
Eric:
I am glad someone besides me noticed the peculiar little flat area from D+9 to D+11 in the WBC trend, followed by renewed trend upwards.
There is an interesting theory to explain this, but I have no way of proving it one way or the other.
Initially, right after Day Zero, neither of the two new cords is yet engrafted and therefore doing precious little by way of white cell production. As for the host immune system, it too is flat on its back, knocked out cold by the prior chemotherapy and radiation. WBC languishes at a rock bottom 0.1 for a while, up to day +5 in Harvey’s case.
After this, for a while, there is contribution to white blood cell production from the host as well as the grafts, a mixture of (host)autografting and (cord) allografting. In Harvey’s case this appears to have been the case from Day +6 through Day +9. I expect gradually the contribution of the allograft becomes more pronounced over this period.
Past Day +9 the grafted immune system is strong enough and the host’s original immune system is weak enough that the former kills off the latter. The flat portion from Day +9 to Day +11 represents the allograft white blood cell production making up for a rapid fall off of any production from the original host immune system, managing to hold the line in white blood counts in spite of it.
Past Day +11 the graft (or grafts) are now in business and accelerating their production of white blood cells at a fair clip and the curve trends up again. As of today, Day +14, the WBC is a healthy 1.5K.
Red blood cell and platelet production will not start for at least another couple of weeks. Since Harvey’s RBC, hemoglobin and platelet counts are now flirting with the transfusion trigger points, I expect he will be receiving these blood products until the graft starts doing its job in this area as well.
This is the theory suggested to me by one of the staff here and it makes sense to me.
Chaya
re: That theory about (host )autografting - (cord )allografting …… I’m curious as to the differances between blood stem cell and marrow stem cell . My husbands mini- allo mud transplant was ” fresh bone marrow ” and when good things started for him I asked the Drs. how they know for sure that they are the donor stem cells , the answer was ” the host stem cells would not reapper for at least three months after conditioning chemo ,and then they wouldn’t have a chance ” I wonder if this then means ,that with blood stem cells, that those donor cells have that much more work to do , they have to get rid of the old guys while they are so young ? Wish you folks continued clear sailing with much sunshine …. becky
Becky:
You ask a very good question, I am not sure I have a very good answer for you - I am making an educated guess here.
For starters, your husband had an adult donor and therefore a high nucleated cell dose (therefore high dose of stem cell). Cord blood transplants, even when they use double cords, have much smaller number of stem cells in them. This means there is higher degree of mixed hematopoiesis (auto and allo) for longer periods with cord blood transplants.
I understand that the ratio of graft and host armies in the bone marrow and peripheral blood can be different in the early days after a transplant, hence the need for doing chimerism testing on both blood and bone marrow aspirate.
It is also my understanding that risk of graft failure (where the graft is killed off by host T-cells, either left over because the mini-allo conditioning was too kind and gentle, or because the host T-cells had a chance to reconstitute before the graft had time to set up shop and produce its own defences) is higher in cord blood transplants.
Off-setting these disadvantages for cord blood transplants is the ability to find matches for many more patients, as well as significantly reduced morbidity due to GVHD.
Bottom line, while adult donor and cord blood transplants have a lot in common, they are also different in some important ways.
Hope this helped answer (partially) your question.
Chaya