My boyfriend was diagnosed with AML on January 3rd, 2017 - so we are new to this community. For those of you who have time to read this I am going to try my best to describe our experience thus far and hopefully someone will have some advice to give me. If you have any questions please feel free to ask, as there is a lot of information we have obtained in a short period of time and it is easy for me to miss something. 

A little back round:

Greg and I have been together for 7 months and we have a bit of an age gap between the two of us. I just had my 22nd birthday on the 16th of December and he just had his 35th birthday the 30th of December. We were both born and raised in Alaska, and the both of us have never been married nor have kids. Often in Alaska people form a type of seasonal depression in the wintertime because of the lack of sunshine and constant darkness. Mid November is kind of when Greg started acting weird in the sense that he was pretty tired most of the time and kept talking about how hard it was to get up the stairs and little things like that. As athletic and active as he is I had assumptions that he was developing a seasonal depression. At the time he had no health insurance and (as most men are) didn't want to see a doctor anyways. As time went on, his tan complexion became very pale and he developed serious lack of appetite and energy. I was so confused and concerned by his behavior and told him he needed to either apply for health insurance or go to the ER without insurance. I thought he must have some sort of anemia with the way he bruised so easily and that maybe he was depressed as well. It was not only concerning but it was affecting our relationship. I remember a couple days before Christmas Greg and I were laying in bed and he just flat out told me that he knew he had leukemia based on what he had read of the Internet. We both cried together that night, especially me because the thought that my boyfriend might have cancer never even crossed my mind. It had hit me hard after I had read the symptoms of leukemia but the possibility was so scary I just shrugged it off. It wasn’t until the 3rd of January when he had hardly been out of bed for 3 days except to go to the bathroom and shower, that I gave him the ultimatum and said that he was either going to the hospital or I was going to leave him - it seemed like he was dying before my own eyes and I wasn't going to watch him suffer any more. 

Diagnosis:

It took a little less than an hour from the time we got to the ER to diagnose him with leukemia. Fear ran through me knowing that Greg did not have any health insurance and I knew this was far more than just getting help for depression or anemia. The news was a shock and emotions were high. Alaska does treat leukemia patients, but I suppose that his counts alarmed the doctors enough that they felt as if he needed to be medevac’d as soon as possible to the University of Washington Medical Center. The problem was that he had a hemoglobin (the amount of oxygen in his blood) of 3, where as you and I have a hemoglobin of 15-16. In order for any person to fly they at least need hemoglobin of 7. So 4 blood infusions later he was at hemoglobin of 7 and we were flown out in a leer jet around 6am on January the 4th. By some miracle Greg had applied for Medicaid about mid December and we hadn't heard from them since, so he and I both assumed that he was still uninsured. Before we left the ER, a lady popped her head into our room and said something as simple as "Alaska Medicaid is going to take care of you, don't worry about anything." I remember my jaw dropped and this huge weight was lifted of our chests.

Duration in the Hospital:

We arrived at the UW Medical Center early in the morning on January 4th. Our room was beautiful with a great view of a harbor and Mt. Rainier. Greg was so full of energy and he finally had color in his skin again. Thinking back I was so naive, yes people become pale in the winters in Alaska but I should have been more alarmed when he looked almost transparent and his lips were kind of a yellowish color. Those 4 blood bags had giving him so much life. Our attending doctor, Dr. Pamela Becker, so I am told (and truly believe it) is the best in the country and we are fortunate enough to have her. My understanding is that the typical way that they diagnose the type of leukemia a patient has is a bone marrow biopsy - but because his blood was 60% leukemia cells it meant his bone marrow was at least 60-90% leukemia cells so they didn't see the need for a bone marrow biopsy as they wanted to start chemo as soon as possible. Another thing you guys should know is that on January 1st, twenty one years ago, Greg's mom passed away after a little over a year fight with ALL leukemia. Before Dr. Becker knew the type of leukemia he had they really wanted to look into seeing if his leukemia was genetic. When it came back as an AML diagnosis they wiped that possibility off the table.

They began his G-CLAM chemo regimen on the 7th of January, which is administered daily for 5 days. The first day of chemo he had so much energy that he walked 4 miles around the oncology floor, which we learned about 2 days later was a huge mistake. He had done such little activity the past couple months that his calf’s had become so sore and stiff from the 4 mile walk that he literally could not walk. His body could not heal him like a normal healthy person's body would - and it very much affected him with his symptoms to come from the chemo. The following night he was unable to control his bowels and I was not strong enough to be able to carry him to the restroom. The first night this was happening was probably the first time in a long time that we had actually had an uncontrollable laugh. I remember we were in the middle of a conversation and he sneezed and looked at me in shock saying "Hannah I just shit myself" - the worst part was that he couldn’t lift himself up because of the condition of his calf’s so the scene was a messy one. It was a little early in life than I expected but here I was changing my boyfriend’s diapers - which we still get a good laugh at.

At the same time, he was running a high fever (getting up to 104.7 at it's highest) for about 4 days and had sever riggers which made his body even more sore. By the 5th or 6th day he was still unable to walk but we had kind of gotten the diarrhea under control and we finally got some help from a physical therapist to help him get the strength to walk again. On top of everything else, Greg is naturally a thinner guy - normally weighing 160-165lbs at a height of 6'1 - he weighed about 145lbs when he was admitted into the hospital. And if I thought it was hard to get food down his throat before diagnosis - chemo, and fevers caused by the chemo definitely did not help the situation. When he was finally stabilized enough to be discharged from the hospital (two weeks from the time we were admitted) he weighed 137lbs. This time in the hospital all seemed like a blur. I was frustrated with myself because I was supposed to be the person to support him and be strong for him and I often found myself in the bathroom or hallway sobbing. Of course now I realize that those feelings are all very natural and for those of you reading this that are the front lines for your loved one and feel the same way that this is all okay and we need to let ourselves feel that way. 

Now:

He now is an outpatient at the Seattle Cancer Care Alliance and goes there every other day. When he first became an outpatient we were told that his disease itself is categorized as Trisomy 6. 

We did his bone marrow biopsy on the 8th of February and the results came back that he still had 12% leukemia cells in his bone marrow and 0% in his blood. I had hoped he would be in remission so this was not the best news, however the doctors reassured us that this is normal for a person who had such a high volume when he was first admitted. So on the 15th we started his second round of his G-CLAM regimen. He says he honestly hasn't felt this good in over a year and the chemo has yet to affect this. I hope that since the chemo doesn't have as much to kill off this round that he doesn’t have such a hard time with all of this like he did last time. He also has gained weight since he was last in the hospital and now weighs 150lbs and looks so much better than he has this past couple months. His face is full and bright and is just very happy for someone with an aggressive cancer. 

Greg is an only child so they are currently looking for a bone marrow donor for him. Right now we have 3 scenarios as to what is going to happen next. 

Scenario 1:

Greg goes into remission after this treatment and if they have a donor match then he will go straight to transplant.

Scenario 2: 

Greg goes into remission but they have not found a donor match for him. If that happens they will send us back to Alaska to receive chemo treatments to keep him in remission until they find him a donor. Then we will go back to Seattle and he will receive his transplant. 

Scenario 3:

Greg does not go into remission and we continue to attack the cancer with chemo treatments in Seattle until he does go into remission and can get him into transplant. 

We will not find out any of this for another 4 weeks when they can get a bone marrow biopsy and see where he is. If he is able to go into transplant he will do the prep for transplant (which I am completely unsure what this really consists of) the 20-30 days prior to transplant and then when he receives his stem cell transplant he stays in transplant housing for another 100 days.