Day + 4

I find myself lying in bed at night with blog posts running through my head. Lucky for all of you, I don't write everything I think about! The time I spend trying to fall asleep after a long day at the hospital is definitely the most difficult. First of all, I'm in bed all alone, without even Hallie or Chance to cheer me up, and second, I have just left Jeff alone in the hospital. (Not that I don't trust the doctors and nurses to take good care of him, but I really like to be double-checking everything they do. I'm probably a most annoying person to have around. The bone marrow coordinator even brings a textbook with him when he comes to talk to us, because I've stumped him a couple of times with questions he wasn't comfortable answering.)

Anyway, Jeff's white count is down to almost nothing. Everyone who enters his room wears a mask, which means I have a mask on all day long. Which, I don't mind too much anymore - it covers up my puffy face! I really hope all of this puffiness goes away soon after the baby is born. Back to Jeff...he's still feeling okay, and his mucousitis hasn't gotten too much worse. He's still eating -- 5 fruit cups, 4 ice cream sandwiches and part of his hospital-prepared supper yesterday. Overall, things are going as expected. The docs say he probably will get some sort of fever over the next week or so, but I'm hoping that we can skip that part this time.

Although the next two weeks are crucial to Jeff's recovery, we still have a long road ahead of us. The 6 to 12 months following a transplant are also important to his long-term recovery, as Jeff's immune system has a long way to go before it can be considered even close to normal. In a year or so, he'll even need to be re-vaccinated for everything from measles to polio. But I guess we just need to take it day by day...

Day +2

As expected, Jeff's counts are dropping and he is actually receiving a transfusion of red blood as I write this. He generally handles the transfusions without any side effects, so let us all hope that trend continues. I'm guessing that tomorrow he'll need a good dose of platelets, as they are keeping his clotting cells higher this round to prevent any more hemorrhaging incidents in his eyes.

To slow down the engraphment of Mark's cells, Jeff has received a dose of methotrexate (a type of chemotherapy when used in high enough doses), and will receive two more over the next 4 days. This will help to reduce the symptoms of graph vs. host disease in the early days of recovery. Unfortunately, it will probably also increase the severity of the mouth sores that Jeff is beginning to get. If all goes well, Days +3 to +8 will probably be the most uncomfortable for him, so I'm going to try to keep my spirits high so that he doesn't get too depressed. (This is easier said than done, but I'll do my best.)

Oh - I went to my new OB again this week, and everything is looking good. My belly is measuring exactly where it should be, the baby's head is down, and my blood pressure is low. Baby Eckert has very active days, and pretty laid back days...this makes me think he has a good bit of both mine and Jeff's personalities. Let's hope for everybody's sake that he leans towards Jeff's!

Transplant: Day Zero

The transfer of 5 million of Mark's stem cells into Jeff's body went off without a hitch. He was a bit nervous, and felt a little strange as the doc pushed the cells through his central line, but overall the process of transplantation was quite anti-climactic.

Over the next several days, Jeff's blood counts will continue to drop, and preventing infection will be top priority. He'll also begin to feel some of the residual effects of the monster doses of chemo that he received last week.

Merry Christmas

It's day -2 here in Hershey, and Jeff is getting his last big dose of chemo for Christmas. As I mentioned before, the nauseating stuff started yesterday, so Jeff isn't feeling all that great right now. But, we're getting closer to the big transplant day, which means we're closer to getting out of here. So, right now we're just taking things day-by-day.

The therapy regimen that Jeff is receiving is a sleeping giant. Although he hasn't felt too poorly yet, the real side effects haven't kicked in yet. In fact, all of his blood counts are still in the normal range, and won't start dropping until a couple days post-transplant. In the mean time, generations of cells are being killed off, which will deplete his bone marrow until it's just about empty of all cellular life. This will give Mark's stem cells the opportunity to find their way to Jeff's bones and start to make blood without a fight from Jeff's immune system.

As for me, I'm still feeling okay, albeit a little uncomfortable. My clothes aren't fitting all that well anymore, and Dad and Rich want to buy me some camoflauge suspenders to help keep my pants up. I guess there are some things about being pregnant that you can't really appreciate until you're actually experiencing them yourself.

Day (-) 6

Well, this morning I cried when I re-read my post from last night. So, I apologize if I caused any other tears out there. But, along with keeping this blog updated for everyone else, I also use it as therapy for myself, and I'd like it to be a true representation of how I am feeling as we stumble through this part of our life.

By the end of today, Jeff will have gotten 10 of his 16 doses of busulfan. He's starting to feel slightly run-down, but is still functioning quite normally. We had some good laughs today, and his spirits are still pretty high. We spent much of this evening researching vacation spots on the internet...although it will be quite a while before Jeff is feeling up to a vacation, I'm finding that looking forward to a happy future is quite comforting.

Jeff did mention that he is noticing some significant improvement to the spot he sees in his right eye. Hopefully, the bleed will continue to re-absorb, and his vision will completely recover.

Late Night at the Hospital

If we go back three or four months, Jeff and I can both distinctly remember thinking about how lucky we were. Happily married, expecting our first baby and in good health - we both knew enough not to take our lives for granted. We lived each day to the fullest, remembered to laugh together, and looked forward to a future that included at least a couple of kids.

Now, I can’t help but mourn for a life that did not include worrying about whether or not Jeff will be cured of his AML, or a life that did not include graph versus host disease, immuno-suppression, and endless doctor visits. I can’t help but mourn for the loss of excitement that a first baby should be bringing us, or for the happiness that we should have been allowed to share with this new baby.

I struggle each day in a futile attempt not to feel sorry for myself. I honestly can’t think of anyone who deserves this situation less than Jeff does, and I can’t help but think of all we are missing while we whittle away the 4^th quarter of 2007 in a hospital room, wondering what sort of calamity the next day will bring.

I do NOT believe that everything happens for a reason. Some things just happen, and the only thing that really matters is your reaction to the situation. I suppose everything I’ve written today would lead one to think that I’m not responding very well. However, I’m finding out that dealing with a life-threatening illness is a lot like dealing with death. Grief, whether it’s for death or the loss of good health, is a process. You need to work through the shock, anger, disbelief and sadness before you can really move on.

Transplant: Day (-) 8

The results of last week's biopsy show that Jeff is now in remission, which is exactly where we wanted him to be. The transplant process started today around 5 pm, with his first dose of busulfan. He'll receive 15 more doses over the next 4 days. They'll follow with 1 dose of cyclophosphamide on Christmas Eve, and one on Christmas Day, which will end the chemotherapy regimen and completely wipe out his immune system.

December 27th will be called Day Zero, and will consist of the transfusion of Mark's stem cells into Jeff's blood stream. This will also be around the time that Jeff starts to feel the unpleasant side-effects of the chemo. With any luck, he won't feel too horrible, and won't get any infections, but that is probably hoping for a little too much.

Some time around Day +14 to +17 post-transfusion, Mark's cells should be functioning inside of Jeff's body, and barring complications, he'll be discharged. In any case, our main goal is to get him out of the hospital before the baby makes an appearance. Because I'm 36 weeks along, the timing is a little tight. I really hope the baby isn't in any big hurry!

Mail can be sent to:

Hershey Medical Center
500 University Drive
Hershey, PA 17033
Attn: Jeff Eckert, Room 7220

Next Week

Jeff will be admitted back into the hospital on December 19th for his bone marrow (aka stem cell) transplant. He's expected to be a guest at Hershey Medical Center for about 25 days. The first week or so will consist of very intensive chemotherapy, which is meant to completely wipe out Jeff's immune system. The chemo will be followed with the transfusion of Mark's stem cells, which will probably take about 10 days to start making new blood in Jeff's body. During the interim, Jeff will need transfusions of red blood to carry oxygen and platelets to prevent bleeding. White blood cells do not get transfused, so once again, Jeff will be very susceptible to infection. After Mark's cells start working to produce blood, they will see Jeff's body as foreign, and to some extent, will attack his organs. This phenomenon is termed "Graph Vs. Host Disease" or GVHD for short. (The "graph" is Mark's cells and the "host" is Jeff.)

Hopefully, because Mark is an identical related donor, and Jeff is young and strong, the GVHD will be minimal. However, there is no sure-fire way to predict how Mark's immune system is going to react to Jeff's body. Although GVHD can, in severe cases, be life threatening, it also works to keep leukemia cells from flourishing. So, a mild case of GVHD is actually a good thing, and is linked to lower relapse rates.

After Jeff's counts recover and the GVHD is under control, Jeff will be discharged from the hospital to his sister's house, where we will need to stay while he is monitored several times a week by the Hershey docs. When they are comfortable enough with his progress, we'll be allowed to come home.

I'll be posting a mailing address for Jeff as soon as I have a room number. I'm sure he'll appreciate any notes of encouragement, but please do not send fresh fruits or flowers. Immuno-suppressed patients are limited by what they can eat and touch - both fruit and flowers can harbor bacteria that may be harmful to his recovery.

Home

Like Dorothy said, "There's no place like home," and we're glad to be back.

We'll be here until around the 20th, when Jeff will be re-admitted to start the transplant procedure. While we're home, he can have visitors, but please stay home if you're sick or have been around sick people. We'd like to have Jeff as healthy as possible before the procedure starts.

Once again, thanks for all of the support!

Back in Hershey

After a much needed weekend at home, we're back in Hershey for a few days. Today, Jeff needed to have his heart and lungs evaluated so that the insurance company will preapprove the transplant. On Wednesday, we have an appointment with the oncologist to further discuss the transplant and to have another bone marrow biopsy performed.

Jeff has been getting a little stronger every day, but I don't think anything helped him as much as Hallie and Chance's overwhelming show of affection towards him on Friday night. They took their turns on his lap to kiss and hug him and then all three of them spent Saturday cuddled on the couch. With love like that, he couldn't help but feel better.

Almost Home

Well, actually, we are home for the weekend. Jeff's counts have recovered to the point where he is no longer taking any medications, his platelets and white blood cells are rising on their own, and his red blood is holding steady. He's starting to feel much better, except for the pesty spot he still sees in his right eye, which we are told is just going to take a while to resolve itself.

Anyway, we will be home until Monday morning, when we have to travel back to Hershey for some pre-transplant testing. By Wednesday afternoon, we should be able to come back home until around the 20th, when Jeff will admitted for the transplant.