Breathe Easy for a Bit

Jeff's marrow was clean, which means that he'll probably recover his blood counts in remission. Now, we have to hope that the remission is durable enough to get him to transplant before relapsing.

I'm wondering where Danielle is right now...probably plotting revenge against me because I told the world that she gets out of the car too slow.

In Limbo

For me, waiting is the hardest part. Danielle and Paula will verify that I get annoyed with them because they take too long to get out of the car. I'm usually driving, so I have to get parked and get my stuff ready and then get out of the car. I still manage to beat them out the door by several steps. I then have to stand there WAITING for them, while they diddle-daddle. I don't think I'm a particularly fast get-out-of-the-car person, they are just slow. And, I'm impatient.

So, you can imagine that waiting for biopsy results is not very easy for me. I like to know what's next, or be planning what's next so that we can get on with our lives. We don't know what the next step will be until we know what Jeff's marrow looks like. Best case is that Jeff's marrow is empty and he actually recovers in remission and stays in remission until transplant time. Worst case is that Jeff's leukemia is becoming chemo-resistant and Jeff decides that enough is enough. The treatment of this disease causes enough pain and misery that at some point you have to look at your chances and decide whether or not it is worth spending, what may be the last few months of your life, in a chemo and gvh induced hell, or spend it relatively comfortably. Thirty year old men should not have to consider things like this, and neither should their wives.

Anyway, while we are waiting, I'm trying to be present to the moment, because really, that's all that any of us really has. Yesterday, while I was practicing being "present to the moment," and doing some of my work at Panera Bread, somebody managed to hit my parked car. Luckily, the damage was minimal AND they were nice enough to leave me a note with their name and number. I'm not sure if I'll bother getting it fixed. I like a car with character, and really, isn't that what bumpers are for?

The last little bit of excitement that occurred yesterday happened when JD got stung by a bee. JD is a curious little bugger and I guess that he wasn't willing to take my word that bee stings hurt. When my little man started screaming so suddenly, I knew exactly what happened, and confirmed it when I pulled the stinger out of his little thumb. He carried on for a bit, and showed my his puffy thumb about 10 more times before he went to bed.

Biopsy

Today, they'll remove a piece of Jeff's bone marrow for biopsy. This particular biopsy will give us a good indication of whether or not Jeff will recover in remission. Recovery of his blood counts is probably still a good week away, so we'll continue at Day Hospital every other day.

More of the Same

Jeff is feeling about the same as he was a few days ago, although with an increased steroid dose, some of the GVH is getting a little better. His spinal fluid has been cleared of leukemia (I think maybe I mentioned that before?), but he will be receiving a maintenance dose of chemo weekly via lumbar puncture until the time when an Ommaya reservoir can be surgically placed in his head. His blood counts will need to stabilize and they'll need to boost his platelet count before he gets the surgery.

JD and I will make the trek back to this morning. Being away from the hospital gave me a chance to refresh my perspective on this whole mess, and I think I'll now be much better able to take care of Jeff.

Recharge

JD and I came home to recharge for a couple of days. I can't even begin to describe how hard this is...well, I suppose I could describe it, but no need to upset everyone.

Jeff has his first Day Hospital visit this afternoon. He is quite weak and has some residual issues due to the GVH and chemo. Hopefully, the steroids will continue to resolve them, and his blood counts recover sooner, rather than later.

A Rally for Jeff

Apparently, the Mark Eckert household recently held a rally in Jeff's honor. Please keep in mind that if you send me pictures, they might get posted to my blog!!

I've once again been forced to do my work, and all other things requiring the internet at Panera Bread. They make a great cinnamon crunch bagel, and of course, I pair it with a morning Pepsi. Recently, I tried to stop consuming anything containing sugar....obviously, that didn't work out so well.


Jeff has been fever-free for about 2 days, and with any luck, he'll be discharged tonight. The steroids seem to have helped with his rash, and overall, he is feeling okay. Even though we'll still be spending lots of time at the hospital, it will be completely refreshing for that time to be as an outpatient.

Storytime

I find it very difficult to take pictures while Jeff is sick - it's not something I want to remember...but I thought you'd enjoy these photos from yesterday afternoon.

Much Better

Jeff actually took a shower this morning, and one quick walk around the block (otherwise known as the nurses/doctor station of the cancer wing). His fevers are less severe, but his rash is still pretty intense. After looking Jeff over this morning, Dr. Claxton decided that some steroids would be appropriate. Because he believes that the rash is causing the fever, he hopes that within a few days, the steroids will take care of things and Jeff will be able to be discharged for a bit.

No Change

There's been no real change in Jeff today. The doctors are keeping close eye on his rash, which seems to change by the hour, but his overall health is about the same. He got another dose of methotrexate to his spine, and was in quite a bit of pain for a little while...luckily, the hospital keeps lots of morphine on hand for such problems.

Monday

Real quick before I go to bed....

Jeff is stable and fully coherent, but still getting fevers.

JD is as happy as he always is, flirts incessantly with the nurses, and is content to play with whoever is watching him.

I'm hanging in there.

We've decided to stick with apartment life, but we're not sure which one yet. Will post address asap.

We're Moving

On Thursday, we'll be moving in with Jeff's sister, so please do not send any more mail to Chocolate Ave. I'll post our new address as soon as I confirm that I'm remembering it correctly.

Improved Status

Jeff's fever broke late last night, his heart rate slowed a bit, and he was able to breath much easier. Today he is still very weak, but much more lucid. His temp has crept back up a little, but the edema is much improved, and he is feeling much more human. Thank goodness - things were pretty hairy for a while.

Hopefully, his body is now strong enough to mount a recovery, and that he recovers in remission.

By the way, thank you for the comments, the cards, the money and all the rest of the support that you are all giving. We wouldn't be able to do this without you.

Today

Jeff is still hanging in there, but he's not having a very easy go of it this time. His fever remains at 103 or 104 and at times, his blood pressure is very low. He's not very coherent right now and sleeps most of the time. He is retaining fluids from the neck area on up, and has a rash covering most of his body. He is still very uncomfortable, but the sciatica-type pain is much better since getting the chemo through his spine.

He's receiving his 5th (and last) dose of his (regular-not spinal) chemo treatment today. His counts have bottomed out and he's received transfusions of both platelets and packed red blood cells. If you're looking for a way to help, please give blood, or platelets, or both.

Biopsy Results

The biopsy did not show any leukemia in his skin bump, which is good news.

Jeff's having some facial swelling that the docs are a bit concerned about - hopefully they have some answers about what's causing it soon.

More later...

Fever

Jeff's been running a 104 degree temp for several days. Tylenol doesn't seem to helping much, so he is quite uncomfortable. His blood cultures have been coming back clean, so it's possible that the fever is a direct result of one of the chemo meds. Just in case it isn't, they've started him on a couple of antibiotics.

No word on the skin biopsy. I'm really hoping that it's not leukemia cutis, but we haven't gotten any good news this week, so those hopes are not very high.

Jeff's counts are bottoming out, and he'll receive red blood and platelets today. He currently has no immune system to speak of, so we have to hope that he doesn't catch anything too nasty.

Thank you for all the nice comments....it's hard not to cry as I read them.

On a Lighter Note

I've finally reached ten followers on my blog. I'm pretty sure that there are more than ten people reading this thing, and Jeff and I would love to know who you are. All you have to do is click the Follow button and continue with the instructions. I really would like Jeff to know how many people are pulling for him. Things are getting pretty tough here...

Update

Jeff received his first dose of methotrexate through his spine yesterday. They'll alternate that drug with one called Ara-C, which Jeff has received as part of his chemo cocktails several times. The doctor is hopeful that within a week or two, his spinal fluid will look normal and that some of the sciatica-like pain he's been having will be gone. (He probably has two problems that are causing him the pain, the leukemia and some disc bulging, so the chemo might not take care of everything.)

In the mean time, he is being kept comfortable with a morphine drip, and regular doses of Ativan, which is for anxiety, and helps to relax muscles. He also has two of five of his regular chemo doses under his belt. Unfortunately, he's already running a fever, so a discharge by end of the week is unlikely.

We are still hoping for a remission, or close to a remission, so that Jeff can receive a mini-transplant from a yet-to-be determined donor.

**Because of the toxicity of the chemo involved in a full transplant, it's a once in a lifetime thing. So, the next transplant will be considered a "mini," and he'll receive a much milder chemo regimen to suppress his immune system before getting the donor cells. For a while, Jeff's cells and the donor cells will fight it out, in hopes that the donor cells take over and kill off the remainder of Jeff's bad blood.

More Bad News

The leukemia has invaded Jeff's spinal fluid. Not too much more to say about that except that he'll need to receive chemo through a spinal tap until they can install a port in his head. Some days you just need to say F**K.

He also has little bumps popping up all over his body, which the doctor thinks is leukemia cutis. They will biopsy one of these little bumps later today to confirm.

Donor Questions

There have been some questions about donor eligibility. To see the full list of guidelines, please go here. Everyone will be asked to fill out a medical questionnaire, and not everyone will be eligible due to past/present medical issues.

Please note that if you have had cancer, you are probably not eligible, but there are a few exceptions. Please see this page for details.

Marrow Donor Drive

The bone marrow donor drive will be held:

August 11, 2009
Johnsonburg Firehall
4 PM - 8 PM


If you have reservations or questions about becoming a donor, please feel free to send them to me. If you do so via blog comment, I will answer via blog post, so that everyone gets the benefit of the answer. If you'd like to ask a private question, please e-mail me at jmw280@gmail.com.

Lots of Tests

Jeff was admitted to the hospital today, but things are moving a bit slowly. He needs to have his heart evaluated and his central line placed before he can begin chemotherapy. He'll be receiving a 5-day protocol call CLAG-M, which consists of 3 different chemo drugs and Neupogen, which if you remember, is used to boost white counts.

He's also been having severe sciatica-type pain, so they're doing an MRI as I write this, and they'll do a spinal tap tomorrow to make sure this problem isn't leukemia related. I am convinced it's completely unrelated, because he's had this problem on and off, and it started way before he was initially diagnosed. Needless to say, I've been wrong before and I'll be keeping my fingers crossed that the leukemia isn't lurking in his brain.

Because the hospital has all kinds of good drugs available to them, Jeff is more comfortable right now than he's been in a long time. I hope they can keep him that way throughout the week. His blood counts are relatively stable, but low, and he is already neutropenic (meaning he doesn't have enough germ-fighting cells available and he is very susceptible to infection).

A Good Weekend

It was nice to have a few days at home before the real hard stuff starts. Jeff had a bunch of good moments, and we spent lots of time loving JD. He is such a delight that I can hardly contain a smile when I think about him, even during my darkest thoughts about this whole mess. I appreciate all of the comments on the blog...sometimes hearing from everyone can really help to keep me going.

Suites On Chocolate

Jeff will not be admitted until Monday, so we'll be coming home for the weekend. We've found a place to live while we're here...looks like this.

Our address is:

Jeff, Jamie & JD
1428 East Chocolate Avenue
Suite #3
Hershey, PA 17033

Sometimes I forget what's going on, and I revert back to myself...happy and content (as content as I get) and completely thrilled with my baby. Then everything hits me again and I remember our situation and the obstacles we have to overcome and I groan to myself in disbelief. Luckily, I can usually conjure up enough hope to keep moving and keep on keeping on.

Danielle's Comment

**For people who don't read this blog's comments, I've pasted Danielle's comment below.

FYI:

If you are interested in donating immediately, go to www.marrow.org
you can click the join registry tab and then join now! its very simple! you sign up online and then they send you a kit in a few days directly to your house. you swab your mouth to get a few of your cells for them to test, and send the kit back. This is very fast, waiting for a local bone marrow drive may be a few weeks.


If you are interested in a bone marrow drive, there are numerous drives throughout the state. www.marrow.org can give you the locations of these drives. once you clicked the join registry tab scroll to the bottom and select join in person. When you join in person, they will either swab your mouth or take a blood sample.

To make an immediate impact join online and have the kit sent to your house!

New E-mail Address

In addition to e-mailing Rhonda at ronderh@hotmail.com, you can also use the e-mail address marrow2live@gmail.com. We set this up to make things a little simpler, so that people can easily pass the address along. As soon as the details of the drive are firmed up, I will post them on the blog.

Today

Jeff's spirits were high today and I saw many glimpses of his former self. Sometimes it's just easier knowing what's coming. Right now, JD is falling asleep on his Daddy's chest, and if my camera had any batteries, I would take a picture for everyone.

The chemotherapy protocol that Jeff will be receiving is a 5-day in-patient treatment. I'm assuming that if he is fever-free at the end of the 5 days, he'll be discharged into my care until the time comes when he does get feverish. After about 2 weeks, they'll do a biopsy to see whether or not he is in remission. At that point, if he is in remission, we have to hope that he stays there while another donor can be arranged.

Speaking of donors, many people have mentioned that they would like to have the donor drive named just for Jeff. Let me just say a few things... it is highly unlikely that any of you will match Jeff. Statistically, to find Jeff's match, we would need to test thousands of people. Luckily, there have already been thousands of people who have been tested and have volunteered to donate for anybody who needs it. Without people volunteering to donate to anybody, people like Jeff would not have a chance in hell of finding a match. Please reconsider your thoughts on this subject.

Doctor's Appt.

Jeff's blood showed 10% blasts today, and we'll know the results of his biopsy on Thursday. We expect he'll be admitted some time over the weekend, but it could be as late as Monday. He'll be getting a different chemotherapy protocol in hopes of keeping the leukemia guessing. They've started the search for a donor, but we haven't heard any preliminary results. Like I mentioned in my last post, please send Rhonda an e-mail if you're interested in getting your name on the donor registry.

Be A Donor

Over the next few weeks, the transplant coordinators in Hershey will begin the search for an unrelated bone marrow donor for Jeff. There's a reasonably okay chance that they will be able to find a match, but it is not a certainty by any means. In addition, there are lots of other people fighting for their lives who need donors.

In order to help Jeff and others, my neighbor and good friend Rhonda will be organizing a bone marrow donor drive in our area. In order to get the Registry staff to come here, we need 100 people to volunteer ahead of time. So you know what you're getting into (it's pretty simple and totally worth it), please click on this link. If you're still interested after reading about your commitment, please send Rhonda an e-mail at ronderh@hotmail.com. She and her committee will take care of things from there. Also let her know if you'd like to be on the committee....there's a little bit of fundraising that needs to be done so that we can help the marrow registry to cover the costs of the drive.

The Plan

We've asked for a couple of days at home, so we won't go back to Hershey until Tuesday. They'll immediately do blood work and a biopsy. If it's obvious from the blood work that the leukemia is progressing, he'll be admitted for treatment right away, if not, we'll have to wait for the biopsy to confirm the relapse.

We'll learn more on Tuesday about the treatment regimen that Jeff will be getting. Because he's relapsed fairly quickly after the last round, he'll be getting a new combination of chemo drugs, but I don't know what they are yet. The transplant coordinators will start looking for another donor, because ultimately, Jeff is going to need another bone marrow transplant, and they believe that an unrelated donor will give him the best chance at long-term survival.

Probable Relapse

Upon closer examination of Jeff's blood from Monday's visit the to Hershey, the pathologists have determined that Jeff has 5% blasts circulating in his bloodstream, which most likely means relapse. They'll confirm it sometime soon, but he'll most likely be admitted to the hospital for treatment by Monday.

I'll post more when I know it. We're still waiting to hear from the hospital as to what the treatment plan will be.