Rough Couple Days

We knew last week was too good to be true and that, at some point, the effects of chemo would truly get to dad. The past couple days have been a little rough. He's been demoted to "step down" status which means he's under more careful observation and gets his vitals every two hours rather than every four. He was step down when initially admitted, upgraded last week, and returned to step down over the weekend.

Dad is exhausted and has a bit of "chemo brain" (memory loss, confusion), which is obviously to be expected. The primary complication at this point is kidney function. His creatinine levels are very high and if the levels aren't under control in the next couple days they will have to do / consider dialysis. They decided today to stop all fluids via IV to help curb the fluid retention.

His blood counts are all very low so dad's receiving platelet and blood transfusions. He had fevers over the weekend and they can't do transfusions when he has a fever so that was problematic. But, the temp has been under control for the last day or two.

Bone marrow biopsy is scheduled for Wednesday. Please continue to send good thoughts and prayers.

Today's Lunch

A quick peak at today's lunch for dad: meatloaf, green beans and mini potatoes.

More details later, including whether he likes it.

Chemo Catering

As Dad has stabilized a bit and settled into the chemo routine, Kate hasn't had a whole lot of clinical information to share. We know everyone is eager to know how Dad is doing, so she asked me to contribute to this blog from my point of view.

I was planning to cook for my family when I came to spend some time in Columbus this winter, but I could have never imagined the events that were about to happen that have brought us here. I'm still cooking for the whole family as much as I can, but my main focus has become cooking for Dad.

Naturally, he isn't a fan of hospital food, I don't think anyone is. The doctors emphasized the importance of Dad eating throughout treatment, so I immediately knew that this was where I came in. Feeding Dad, figuring out what he can and will eat, researching chemo nutrition, and learning with him as his tastes change is how I am going to (cope) help.

I have brought at least one meal to the hospital for him for the last ten days. I'm sure it has a lot to do with the comfort of his favorite chef cooking especially for him with love, but it seems to be the only food he wants to eat. Before I leave each day we decide what he wants the next day and then he looks forward to it (or at least says he does). I've got a routine down now and each morning I cook his lunch fresh (nothing reheated, nothing defrosted) and arrive at the hospital about noon to have lunch with him.

At first he asked for lox and bagels, (one of our favorite breakfasts, usually with a Bloody Mary) so we had that several times. Then I realized that smoked salmon is a bacteria-fest, and now that his system is so compromised, I have to be very careful with what I serve him. He's so far managed to avoid the nausea aspect of chemo (fingers crossed this continues!!!) but I've toned down the food to be easily digested and fairly mild tasting.

Dad's favorite chemo food so far is, without a doubt QUINOA! It's a small sprouted grain full of protein and natural flavor and he's requested it for the last five days for lunch. He isn't into vegetables these days, which is a great change from his pre-chemo taste. I've served quinoa, which I make with beef stock for extra iron and protein, with a variety of simply cooked proteins - filet mignon, pot roast, pork chop, braised chicken thighs. Tomorrow we're deviating from that and experimenting with a simple meatloaf and some butter braised mini potatoes. Calories are good, and anything he wants to eat I will make.

Chemo Catering may very well become something I pursue in the future. There is something incredibly meaningful and gratifying in providing nourishment to a body so desperately in need of nutrients. I am humbled every day to be able to cook for my father at the time in his life that he needs it the most.

I'm here indefinitely. Thank you to everyone for your love and support.

No News is Good News

It's been a few days since I last updated, but that is mainly because there isn't much of anything to report. And that's a good thing! And speaking of good news, the results from Monday's spinal tap have come back and there is NO Leukemia in dad's spinal fluid. Great news!

Dad finished the three days of blast chemotherapy and today is his last day of receiving Cytarabine. His main side effect at this point is exhaustion, which is obviously to be expected. The doctors have warned him it will likely get worse before it gets better, but he can do it!

Amy has been experimenting with her new culinary specialty: Cooking for Chemo. She's prepared a variety of healthy food for dad and he's found a new favorite in quinoa. The nurses on dad's floor agree that he's eating the best food in the hospital.

Thanks for your continued support.

Understanding AML

I've often heard that people enter our lives for different reasons. We don't always know why at the time, but at some point it becomes clear. It's become quite clear to me why a woman named Aimee is in my life - she is also the wife of an Air Force pilot and we met when our husbands worked together in Florida. Her husband was diagnosed with AML in November. She has been incredibly gracious and generous with her knowledge of the disease since dad's diagnosis. I'm so grateful.

Aimee recently sent me a copy of a talk by a world renowned researcher on topic of AML. Dr. Elihu Etsey spoke to the Leukemia & Lymphoma Society about "Understanding AML: From Diagnosis to Treatment." The best part is that much of the speech was in plain English making it easy to read and actually understand. I've copied some of the most helpful parts below.

Explaining AML

In the normal bone marrow there are immature cells that mature to form functional red blood cells and platelets and neutrophils. And these cells all have distinct roles: the red cells to carry oxygen and the neutrophils to prevent infection and the platelets to prevent bleeding. And without the bone marrow the number of these cells would rapidly dwindle to very low numbers.

In AML the normal AML immature cells (“blasts”) undergo transformation, becoming dysfunctional. As a result they are incapable of maturing.The abnormal blasts also prevent maturation of the normal blasts. The result is bone marrow failure and low blood counts. The symptoms of AML result from these low counts, particularly low numbers of red cells, which is called anemia. As a result of the anemia the patient feels tired, they’re weak, they have trouble going up stairs, etc. And they go to see the doctor and after a while of saying it’s probably something that will get better, it doesn’t and that leads to a blood count, which is found to be abnormal, leading to a bone marrow.

And the diagnosis of AML is based on seeing an increased number of immature cells in the bone marrow. This results from the transformation we described above and the inability of abnormal blasts to mature. As a result they accumulate in the bone marrow. And so there are increased numbers of immature cells when you do the bone marrow and this is the hallmark of AML. Because blasts are not difficult to recognize, the diagnosis is almost always correct when we see people referred from outside physicians.

On Treatment

The standard treatment in the United States for 35 years has been what’s called 3 plus 7 or 7 plus 3. And this refers to three days of an anthracycline, which is generally daunorubicin or idarubicin (with probably very few differences between them) and seven days of a drug that’s called Ara-C (also called cytarabine), and because the 3 plus 7 combination has been used so long there’s a lot known about how it performs.

The goal of giving the 3 plus 7 is to get the patient into remission. And the value of being in remission is that in general the people who are cured of this disease (because the disease is curable) are those who get a remission. And it’s very, very, very unlikely that the patient would be cured if they don’t get a remission. So the first step is to get a remission and, as I said, it’s usually accomplished with the 3 plus 7.

Chemo Day 3

Dad had his third and final "blast" of Daunorubicin this evening. Only four days left of Cytarabine. Please continue to send good thoughts in his direction.

The past couple days have been filled with ups and downs. His fever has spiked at times, but not since Friday. He has been on IV fluids since he entered the hospital and, as a result, has gained some water weight. He was placed on a drug to help flush out some of the excess fluids, but it didn't have the desired effect and, rather, put some strain on his kidneys. After stopping that drug, his kidney function returned to normal so they have decreased his amount of IV fluids.

Dad is getting steroids to combat the nausea which is affecting his blood sugar. It's a known consequence so they aren't surprised by the side effect. The result is that Dad is getting more frequent insulin shots. We've stocked his room with plenty of sugar free candies and diet iced tea, which has tasted good to him so far.

Thanks for all your continued love and support. We all appreciate it!

We Have Lift Off.

Dad started chemotherapy last night around 6 in the evening. He will receive 30 minutes "blasts" of one drug for 3 days and a constant drip of the other for 7 days.

Let's all send lots of healthy, cancer-killing vibes to Dad.

PS: Thanks for the comments on the last post! Very cool.

Thursday Update

After yet another day of waiting on tests (yesterday), today the decision was made to move forward with standard chemotherapy treatment.

The results from the bone marrow biopsy were released yesterday and the doctors had quite the conference to discuss treatment. Dad's version of AML involves / is called Complex Karyotype. I've had a hard time finding material on what this means, exactly, but the doctors made it clear that it's not particularly good and indicates a very aggressive leukemia. There are many subtypes of AML and they are numbered. When I asked for a number the doctor said this didn't fall into one, and that the Complex Karyotype is the important factor in the marrow results. (Some other aspects of the biospy were good - like being FLT3 negative - but the Complex Karyotype is the overriding factor in treatment decisions.)

Yesterday during their conference, the doctors decided that the best course of treatment would be to get dad into the trial, and we knew they wanted to do this since they kept delaying the start of any treatment in the hopes that dad's lab results would improve enough for him to qualify. While his liver function did make the threshold for trial today, some other results actually worsened. So, earlier today the doctor made the call that she doesn't want to wait any longer to start traditional (non-drug trial) AML chemotherapy treatment.

Dad - and some family in the room - got the run down on chemotherapy protocol and they are prepping dad to start chemotherapy today. I will update the chemo schedule on the right after I find out what it is.

And, in case you're wondering, dad does look at the blog so PLEASE leave comments and your words of encouragement. I know he'd love to read them.

More Waiting

Yesterday ended up being another day of waiting for test results that delayed the start of chemotherapy. They are trying very hard to include dad in a study that involves an oral chemo drug not yet part of the normal drug protocol for AML. (The chemo schedule on the right is based on being in the trial.) His liver function has been too high to allow him to take part in the study, but they were able to improve the numbers yesterday so they delayed totally rejecting him from the trial and decided to wait until today. They planned to take more tests this morning and, based on his liver function, make the final decision that he will a) be a part of the trial or b) start "regular" AML chemo. Either way, they said he would start chemo today. I think we're all anxious for that to start.

Part of the bone marrow biopsy results came back, but they are still waiting for more typing and testing. But, the diagnosis of AML was confirmed - in the back of my mind I hoped it would be negative and they had all made some sort of mistake... There are several subtypes of AML that don't have an immediate impact on his treatment plan, but are helpful and important to know going forward. We hope to get the final biopsy results today.

To prepare for chemo to begin, dad had a Groshong catheter placed yesterday. A few hours after the surgery to place it, they took an X-Ray to check its placement and noticed dad has pneumonia. The Nurse Practitioner didn't seem too alarmed by the pneumonia and said that, if anything, it's helpful because they know what has been causing dad's fever. They switched his antibiotics to something to specifically fight the pneumonia, but other than that it really has no effect on starting chemo or anything else.

If all goes according to plan, dad will start chemo one way or another today, so please keep him in your thoughts.

How Did We Get Here?

I know this is repeat information for many of you who received news of dad's diagnosis from Robin, but I wanted to share the condensed version of the past couple weeks. So, this is a portion of an email Robin wrote on Monday the 14th:

About 2 weeks ago, Dan didn't feel very well and we thought he may have the flu. Then he broke out in a strange rash on his face and neck and we thought he was having an allergic reaction to something and hoped it wasn't Amy's dog which we were "dog sitting."

The Doctor tried steroids but the rash kept growing so he sent us to a dermatologist last Monday who did some tests. The dermatologist called Wednesday afternoon 2/9 and told us the blood tests were extremely concerning and to get to a Doctor immediately.

We went to the Dublin Hospital ER (Dan was very weak by this point - we still thought he had a terrible flu but they had to come help him from the car). Dublin ran tests and the Doctor came in and said, "Based on these results, it looks like Acute Leukemia which we are not equipped to handle so we've called an ambulance and made arrangements for you to go to Riverside."

We arrived around midnight at Riverside where the oncology/hematology doctors confirmed the diagnosis and have made arrangements for us to transfer to the James Cancer Hospital at OSU.

So we were in 3 hospitals in 24 hours and reeling from the news.

Dan has Acute Myeloid Leukemia (AML) and they plan to start extremely aggressive chemotherapy (hoped to start it today, but he's experiencing some heart arrhythmia so hoping to get that stabilized so he can start tomorrow). He will be here for at least 6 weeks for this first round of chemo.

Address

I know a couple people have requested my dad's mailing address, so here it is:

Dan Marsh
The James Hospital OSU
300 West 10th Avenue
10 East, Room 1030
Columbus, OH 43210

Please do NOT send flowers or any fresh fruit or vegetables - they're not allowed on his floor. But, I'm sure he'd love any and all words of encouragement, notes and sports books/magazines so he can study up on March Madness and prepare for the fantasy baseball draft.

No Chemo Today

The chemo start date has been pushed back for at least a day. Dad's heart rhythm isn't stable so they are hoping to get that under control today. I think we're all a little disappointed as he's ready to start kicking leukemia's ass.

Dad had a pretty high fever last week that finally returned to normal on Saturday. Unfortunately it returned again yesterday. The fever seems to be causing some delirium or confusion and he had another bout of that last night. Dr. Klisovic (the lead oncologist) thinks the confusion is from the fever and too much activity yesterday that wore him out, but if it continues they may have to check to make sure the leukemia is not in the spinal fluid. The doctor doesn't want to scare us (any more than we already are) with the possibility of it being in the spinal fluid, and we will cross that bridge IF it comes to that.

The plan for today is for dad to be calm, get lots of rest and get the heart rate to "settle down." They also plan to put the chest port in for the intravenous chemo (that will now start Saturday) and get another skin biopsy.

we are MARSH

Our new family motto "we are MARSH" means don't mess with Marsh. It's our family's way of saying, "Dad will beat this!"

Bone Marrow Registry

When you hear of a leukemia diagnosis the first thing many people think of is bone marrow transplant. Dad's need for a bone marrow donor / transplant will be evaluated at the end of the induction chemotheraphy (first round of chemo). However, there will be other people with AML who need bone marrow. So, please consider Registering to be a Bone Marrow Donor.

During the month of February, Nordstrom is covering the cost of every person who joins the Bone Marrow Registry. Just visit Nordstrom here, and then check out the National Bone Marrow Donor Program and register. You will receive a cheek swab in the mail, and the process is very painless.

What is AML?

Acute myelogenous leukemia (AML) is a fast-growing cancer of the blood and bone marrow. In AML, the bone marrow makes many unformed cells called blasts. Blasts normally develop into white blood cells that fight infection. However, the blasts are abnormal in AML. They do not develop and cannot fight infections. The bone marrow may also make abnormal red blood cells and platelets. The number of abnormal cells (or leukemia cells) grows quickly. They crowd out the normal red blood cells, white blood cells and platelets the body needs.

Understanding AML

About 12,330 Americans are expected to be diagnosed with acute myelogenous leukemia (AML) this year. The chance of getting AML increases with age. However, children and adults of any age can develop AML. About one in five children with leukemia has AML. The goal of treatment for AML is to bring about a remission or to cure the disease.

The number of patients with AML who enter remission, stay in remission for years or are cured has increased significantly over the past 30 years.

sources: National Bone Marrow Donation Program, Leukemia & Lymphona Society