Break Out the Cigars Folks..
Sorry for the short break in publishing updates! My only excuse is that I have been spending long hours in the hospital with Harvey and then getting home to do all the laundry and other fun wifely stuff. One of these days I will write about the life of a transplant care-giver.
Well, we have some good news to report. The chimerism test done on the bone marrow aspirate from a week ago is finally here. Harvey is nicely engrafted. One of the cords is at 50%, the second cord is at 20% and Harvey’s old immune system is still limping along at 30%. This is pretty normal for Day +20 in cord blood transplants. As time passes, it is expected that the more aggressive cord (the 50% one) will gradually take over and in a few more weeks Harvey will be 100% engrafted with just one immune system in charge. This is a major milestone and I am delighted that things are moving along nicely on the engraftment front.
Some of you may remember that Harvey had one (baby girl) cord from the Carolinas Blood Bank, and a second cord from (baby boy) from Seattle Blood Bank. I have to confess, I was rooting for the girl cord to win. But it looks like I have lost the bet, the winner at this stage is the boy cord. I expect the trend will continue and the eventual winner will be the baby boy! When Harvey gets in touch with his “inner child” in the future, it too would have the peculiarities associated with the Y-chromosome. Gradually, Harvey’s blood type will switch from B+ to O+, the blood type of the cord from Seattle. Harvey is a big fan of a good cup of coffee, so there will be no change on that front (just kidding).
Know the Name of Your Enemy
Harvey went back into the hospital six days ago when he spiked a fever over the trigger point of 100.5F. The first night back in the clink was uncomfortable; Harvey had chills, fever spikes as high as 103 at one point. Over the last 5 days the fever has subsided a bit, showing itself mostly during the late evening and night hours. Fever is an important indicator of something wrong - but it is not always easy finding out exactly what is causing the problem. Harvey was put on triple broad spectrum intravenous anti bacterial medications right away, in the hope that it will fix whatever was (ahem) bugging him, even as the blood cultures were being run.
As it turned out, one by one the test results came back and nothing triggered. Harvey was negative for C. Diff., EBV, CMV, garden variety influenza, Herpes virus 1 and 2, all gram positive and gram negative bacteria. The last test to come in is for HHV-6 (Human Herpes Virus -6). This is a common Herpes virus that infects infants as young as a couple of years. Most kids have it before they get to kindergarten and are none the worse for it. The common name for it is “Roseola“. Once infected, the virus maintains a tiny reservoir of itself in the host for the rest of his life. In people with healthy immune systems the virus does not have a chance. But in immune compromised patients it can reactivate during windows of opportunity - as in right after a stem cell transplant.
HHV-6 reactivation is more of a problem in cord blood stem cell transplants than it is in adult donor transplants. Cord blood is almost never positive for HHV-6. The new born infant whose birth gave us the precious cord blood is entirely naive to this little herpes monster and therefore no clue on how to fight it. So, we are looking at a scenario where the adult patient has traces of HHV-6 in his body that may decide to put on a growth spurt and newly grafted T-cells that do not know what to do about it. You get the picture?
Fortunately, when they measured the viral titre (number of copies of the virus in blood) of HHV-6, Harvey’s count was 700. Anything under 500 is not worth mentioning and typically treatment is not initiated until and unless the titre increases to 2,500 or more. There is every chance that the virus will slink back into hiding on its own, especially since Harvey’s fighting neutrophil count has just topped 2.7K as of today. The gradual improvement on the fever front may be an indication that the infection is also subsiding. That is the good news. The not so good news is that there are no really good anti-viral drugs for HHV-6. Drugs such as gancyclovir and foscarnet are tough on the patient and only partially effective against the virus. Uncontrolled HHV-6 infection getting into overdrive mode can be very dangerous. Let us hope Harvey never gets to that point.
CLL Staging
As you may recall, the whole point of this cord blood stem cell transplant is to get rid of Harvey’s CLL. Yesterday they did a CT scan to look for any hidden nodes. We already knew that there was no trace of CLL in the blood and none in the bone marrow, even before the transplant started. Now we have confirmation that there are no lymph nodes larger than 1cm, a size that is considered “normal”. So, the staging analysis is that Harvey has no CLL detectable in his body! How sweet is that!? With luck, we hope the new immune system will mount an active Graft-Versus-Leukemia campaign that will never allow the CLL to gain a foothold in him again.
Harvey is back in the apartment, told to nurse any small fevers he still gets with Tylenol. More than the fevers, the major issue bothering him is wicked headaches that he seems to get almost everyday. Fairview is nothing if not thorough. An MRI of Harvey’s poor head was done today and that ruled out any traces of bleeding in the brain - something worth checking out in patients with low platelet counts.
So, for now, we are marching along steady as it goes and hoping that this little wobble in the journey will gradually resolve itself. We will be going to the outpatient clinic on a regular basis where they will keep an eye on things and take care of any red blood cell or platelet transfusions that Harvey may need from time to time. Looking at the healthy WBC and ANC, I think it won’t be all that long before Harvey’s new immune system will start making all these cell lines as well.
Be well,
Chaya
22 comments on "It Is A Boy!"
Follow-up comment rss or Leave a TrackbackCongratulations! Is Harvey wearing all blue now? Kidding aside, I am so relieved that he’s doing OK. Without an update, we were really beginning to worry. Keep us posted; it’s looking better & better! I’m sure he’ll be able to keep fighting off this little bump in the road.
Best Wishes,
Marilyn & John
To me it sounds great. Harvey is moving along great with a few bumps in the road as expected. The weather in Sedona in wonderful so come on home soon. Your postings are so educational and interesting to us with cll. We fired up a few candles for you at the Church of the Holy Cross and the Vortex energy will warm you two up with Sedona energy.
I am so relieved to see your post and to read all the good news. I know that there is still so much need for caution and concern but I am rejoicing with you.
Liz
What wonderful news! More than just the great weather makes today a beautiful day in Minneapolis. I hope the road to recovery is straight and smooth the rest of the way.
So glad to hear things are looking better in spite of the headaches and the lurking HHV-6.
Chaya, I know you and Debbie were rooting for the girl cord but ya just can’t buck a well grounded theory by which I knew the boy cord would prevail. In all humility my theory has got to be a Nobel prize winner.
Thanks Chaya for your truly incredible efforts in helping CLLers and if there are ever any prizes given, you should be the one! The seriousness of what you and Harvey are going through and the trail-blazing you have done is heart felt by all.
Wayne and Fay
We are so relieved that Harvey is back from the hospital. Our hopes are that this is the only bump in the road & it is smooth sailing from now on. Thank you for keeping us informed - we check the site all of the time just to know how you are both doing. The new little “boy” is going to grow big & strong!
Well, I was rooting for Harvey to have blue genes (as opposed to pink genes),
so way to go Harvey!
Hooray! Glad to hear the positive update and hoping for the best. No pressure or anything, but when many days go by without an update some of us in the peanut gallery get a little nervous.
So Glad to hear that you are far enough along the path to say, “It’s a Boy” and that Harvey is out of the clink. We ditto the comment of JRG. In your case, No News is Not good news. We are close by, please let us know if there is anything we can do.
wondferbah!!
Marcia and Ramez
Oh Chaya,
This is incredible. I am so glad that things are going so well. Engaftment is the best. At first I thought you had another grandchild!! It’s a boy works for me, Beth
We are so glad Harvey is doing better. We were becoming concerned when there was not an update for a few days. Thinking of you.
I was so relieved to see your recent update. What wonderful news.
With all you and Harvey have been through, you can still manage your glorious wit.
I continue to have you in my thoughts and prayers.
Blessings,
Rita
I am very relieved to see a post. I have been checking everyday and hoping for the best. Continued good wishes. Since it is spring and baseball season, it’s a good time to be a boy!
Dog
Congrats on the engraftment. You and “Harvey” give us all hope and optimism.
Kathleen
Made my day! I love boys, especially this one! Thank you.
Congratulations on the engraftment victory. Whether it was a Boy or Girl this one transcends all genders! So happy for both of you and thanks beyond words for sharing all of this with so many of us. Much love and healing to both of you..
Chaya,
I am so, so happy for your both and totally relieved to hear the best of news.
Anybody who won the “name the baby orca” contest with Pax Orca is already in touch with all the best in his inner child. Wait, that was P.C., not Harvey. My mistake!-Aaron & Gary Down Under
You two have been an inspiration to me and to many, many CLL’ers around the world! Words can’t even come close to how much we’ve all been pulling for you! Thank you for making my day! You ROCK, Chaya and PC!
No CLL in the body! That sounds wonderful. I hope the headaches and other annoyances will soon be gone.
Such good news! What courage you both have.
Daily I send good wishes and hopeful energy
and thanks for your sharing so generously with us all.
AK