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The Last 18 Days

Posted Feb 21 2009 11:37pm
This is a brief history of what has happened in the last 18 days and before that lead up to the events of the present.

Late November

Ann comments several times to me that she is tired and remembers not having much of an appetite. Neither of us think much of it. Her job gets more stressful with the holidays coming up and we are nursing our big orange cat Max who is dying of a nasal tumor. He needs to be fed through a tube and we are feeding him every few hours to try to keep his body mass up.


Max Cat dies of organ failure. Me and Ann take the day off of work and ball our eyes out. Later that night as we are preparing to go to bed Ann asks me to look at a bump on the back of her neck. It looks like a boil to me but its appearance high in the hair line on the back of her neck is unusual. She says it doesn't hurt like a boil should either. We come to the conclusion that it's probably a infection in the early stages and she decides to go the Doctor the next day. We Joke that the worst it could be in Lymphoma...the irony is not lost on me now. Neither of us thinks much more about it, as most of our thoughts are revolving around the loss of our cat.


Ann visits her GP and asks about the lump. He says its nothing and gives her an antibiotic ( Bactrim ). He recommends that if the lump has not disappeared in a week that she make an appointment with an ENT.


I ask Ann about the lump and she tells me that it is going away. I file that in the back of my head and feel pretty comfortable about my initial guess that it was a boil of some type.


Ann mentions to me that she wants to go and see the ENT. The original lump seems to have reduced in size but now there are several others that are starting to appear behind her ears. This is a little more alarming but not sufficiently to cause either of us to panic. We both assume that the infection from the original lump has spread and the antibiotics will still knock it out given some time.


Ann decided to check up with the ENT ahead of time. He told her he was not sure what the bumps where but he perscibed her more antibiotics and drew some blood for a test.

1/9/07 (Day 1)

The ENT called Ann on her day off while she was on her way to Petsmart. He told her that there was some result in the blood work that he was not comfortable with and wanted her to see a friend of his over at the Lady of the Lake Hospital ( OLOL ).

She called me to tell me she had to go to the appointment. Right away I didn't have a good feeling about it. Nothing I could put my finger on, but after having traveled to Africa I knew that Doctor's don't often get so worked up over blood tests unless something is really wrong. So I took the rest of the day off and escorted her.

The Hematologist that her ENT recommended was at the OLOL, but in the cancer center. I think we were both a bit shocked walking into the building. I remember a lot of nervous laughter, and the feeling that we were going in for something silly that would be wasting the Doctor's time.

Once in the office we did another blood draw and then we were off to see the nurse. She started talking about "Living Wills" and "Powers of Attorney" and the yawning crack in my stomach opened up a little more. Finally we get to see the Doctor. He is young, and smiles too much. He looks at my wife and says "You have Leukemia". Ann looks startled and I have a rushing sound in my ears and tunnel vision. I remember looking at the clock on my cell phone and noticing it was 4:14 pm.

The Doctor sees that we are alarmed and he tries to reassure us. "Its a classic case of Leukemia" he says. I'm not reassured, by the fact that my wife apparently has a "typical" cancer at all. He tells us that he doesn't need to do a bone marrow asperation and tells us that we need to go to a hospital now. OLOL is not capable for doing anything but minimal chemotherapy, Tulane and New Orleans are a cesspool, he recommends New York or M D Anderson ( MDA ) in Houston. Ann agrees and he sets about calling MDA.

On the way back home I'm a zombie. Ann looks over at me and says "Well that explains why I have been feeling so bad". Then she tells me about the trouble she was having going upstairs at work. She's right allot of things make sense now, but that doesn't stop me from wishing they didn't.

She is being brave, but we are both on the verge of a break down. We spend the rest of the evening calling family and friends to tell them. My Mother (Dixie) comes over and there is allot of crying, she loves Ann and I think she wishes that Ann was her daughter. When Dixie leaves we pack up everything we can think of for the trip to Houston.

Ann slept that night...I stayed awake all night and watched her breathing.

1/10/07 Day 2

We were set to leave for MDA in the early morning but there was a snag. MDA had not officially accepted Ann as a patient. We had to wait, something I wasn't very good with. OLOL it turned out had not sent forward all of the reports, and MDA wanted a bone marrow biopsy. After several calls to OLOL they finally called MDA and resolved the matter. MDAdidn't need the biopsyafter all and we got the go ahead to leave around lunch time. Ann said goodbye to her cats (Jay, Squeeze and Etsuko ) and we left.

During the car trip I tried to discuss with Ann what she was going through. It was a difficult topic for both of us because I lacked a frame of reference to apply her experience to and she was just as new to it as I was. She did tell me that she had been having trouble eating. That turns out to be from an enlarged Spleen and Liver pushing in on her stomach.

We made Houston in about 5 hours and lucky didn't get lost.

1/11/07 Day 3

Day 3 was a whirlwind of tests and appointments. Our day started at 7:30 at the Leukemia Clinic at MDA. There they drew multiple vials of Ann's blood and Bone marrow confirmed the diagnosis from Baton Rouge...B-Cell ALL. Ann's White Blood Cell Count ( WBC ) at this time was 368 K/ uL. Normally you shouldn't be higher than about 11 K/ uL. What was alarming was the speed at which the WBC count was climbing.

The ENT had tested Ann in Baton Rouge and discovered that her WBC was 200 K/ uL. To see that it had grown so much in just a few days was scary and heartbreaking.

Ann's Mother ( Phung ) and Brother (John) arrived from Sildell. John immediately when to get HLA typed in case a Bone Marrow Transplant was required. Phung fussed with Ann and generally made her feel worse than she already did.

Finally Ann got to meet with her clinic Doctor a very stoic and straight forward lady. She showed us the test results and they where startling to say the least: blood 89% cancer cells, bone marrow 88% cancer. Ann was quickly scheduled for admission into the protective environment wing of MDA.

Funny thing is that when she did arrive at the hospital room (G1279), the floor nurses and staff did'nt believe she was a patient. They all said she looked too good. Only later did a nurse take us aside and tell us that she was a few hours away from a stroke.

She was informed that she would be placed on the Hyper- CVAD regiment, which it was explained was the front line treatment for ALL. Whats more is that it would start that night.

1/12/07 Day 4 - 1/16/07 Day 6

The next two days where a blur of blood tests and chemo treatments. Ann started out perky and communicative but as the chemo was infused her energy level dropped. She had a CVC (Central Venous Catheter) installed to facilitate the infusion therapy, but gives me a case of the willies when I look at it.

We had done as much research on Leukemia as we could in the limited time that we had between leaving Baton Rouge and arriving at Houston, and one of the numbing things we had discovered was that ALL is not just ALL. No the cancer comes in it own individual genetic flavors. All of them bad, but some worse than their cousins.

One of the particularly bad ones ("Poor Prognosis" in Doctor lingo) was to have ALL with a particular genetic defect called the Philadelphia Chromosome. Being Ph + generally meant that the ALL would have a high chance of replase if chemo got you in remission. MDA had already started gene testing on Ann's cancer so we where keen to discover if she was Ph +.

As it turns out we received the news from a Doctor with an unenviable bedside manner he copied from a M.A.S.H. character, that Ann was not Ph +. We all breathed a small sigh of relief, and then he let the other shoe drop. Turns out that there is another genetic defect called a t(4;11) or 4-11 translocation, where the 4 th and 11 th gene switch places. Its also a high risk Leukemia and comes a poor prognosis, and as it turns out this is what Ann has.

t(4;11) has a good chance of relapsing in patients that have already gone into remission under chemo. It is generally characterized by the very high WBC that Ann had when she got tested in Baton Rouge and Houston. Worse was the news that our real hope for a cure lied in a Bone Marrow Transplant.

1/17/07 Day 7

Ann finished her 1st course of chemo today. She is scheduled to move from inpatient to outpatient. Luckily I have met with a representative of a Catholic Charity and they agreed to rent us a furnished apartment very near MDA. Its not home but it is better than a hotel room and alot less expensive.

She gets a lumbar puncture today , AKA Spinal Tap to see in the Leukemia has moved into her Nervous System. The Doctors think Ann has a high chance of this because of the type of ALL she has and some of the results that have turned up on her blood tests. 1st they give her platelets and then Adavan and she is out like a light. Some spinal fluid is taken and some chemo is injected. The nurse promises me that she will get me the results of the test as soon as they have them. We are very nervous about what it will show.

Ann feels like crud today. The first thing she wanted to do when she arrived at the apartment was sleep. I took the time to go and gather some groceries that she could eat...canned fruit, ice cream, yogurt, ect. The apartment complex has a small store built into it. There is not much to choose from but it has some of the things that I can feed her.

She has trouble eating. She says she has a taste in her mouth like lemon heads, metal and burning hair.

1/18/07 Day 8

I had to give Ann her 1st Neupogen injection today. The medicine is supposed to help her good bone marrow grow, I asked about the effect on the cancer. The answer was " don't worry about it", problem is that I'm and Engineer and we are worriers by nature. Ann says the Neupogen gives her bad growing pains.

Ann throws up at the clinic and she is embarrassed. Something is'nt right. He hands are cold and she is sweating. I take her to the Emergency room. They check her and find her blood pressure is really low 93/55. She gets admitted and they put 3.5 bags of Saline into her. The draw blood and her WBC is down to 0.1 k/ uL, practically non- existent.

We had a meeting scheduled with the BMT Doctor today. But we couldn't make it because of the emergency.

1/19/07 Day 9

Ann is feeling a little better today. She was able to eat some and get some rest. I kept waking up to check her breathing.

1/20/07 Day 10 - 1/21/07 Day 11

My Father (Bob) and his Wife (Suzie) arrived with care packages that my family arranged in Baton Rouge. Fruit cups, ensure, chicken soup, mac and cheese, bottled water, clothes ect. The bottled water was a important bonus because Houston water tastes foul and Ann has to brush he teeth frequently in filtered water.

When Bob arrived I crushed my nose on his jacket and gave myself a nosebleed.

1/22/07 Day 12

No clinic today. Ann is a little more active but definitely not back to her former self. She wants cheese pizza for dinner , so being a good husband I supply it. 1 medium cheese pizza, light sauce, and bread sticks. She manages 2 pieces before she says she feels like throwing up.

1/23/07 Day 13

More Lab and blood work today. The Lumbar puncture results are in, and they don't show any cancer!! She is still scheduled to have 8 more and they will all have to be evaluated. But I will take any good news now.

Ann's WBC count is almost nothing now 0.3 K/ uL. I make a fool out of myself in front of the Doctor, by asking questions about stages of treatment that are months away. I'm scared and just trying to get a handle on the situation by planning it out. This is apparently counter-productive behavior from a "caregiver".

We tried to find a quite spot in MDA to have lunch but it is so busy. Ann is having trouble with noise and crowds, and she is very sensitive to the temperature changes in the building. I can almost tell when we have crossed between HVAC zones by gauging her reaction.

Ann gets her 1st batch of out-patient chemo today. She feels a little better after and not so inclined to throw up.

1/24/07 Day 14

Finally got to meet with the BMT Doctor. She tells us allot of things that we already knew or had figured out, and a lor of new things we didn't know. 1st John (Ann's Brother) is not an HLA match for her. John will be disappointed to find out.

2 nd, Ann will have to receive a MUD (match Unrelated Donor) or a UCB ( Umbilical Cord Blood) for her BMT. There are 26 potential matches for Ann in the National Marrow Donor Database (this includes the DOD Database that I was keen to find out about). There are likely to be less matches as the HLA matching is done on these people. However there are over a thousand UCBs that are a close enough match to Ann that they might be of use. Again these have to be checked thoroughly. But the up side is that Ann is small enough that a UCB would be a substantial infusion for her as compared to someone of average height and weight.

3rd, BMTs have a high mortality rate and Ann's cancer is high risk. The Doctor gave Ann a 50% chance of surviving the BMT, secondary infections, and GvHD (Graft vs. Host Disease). She said even with a BMT a replase of the cancer is possible in the first 2 to 18 months.

Not all good news but not all bad. I feel hopeful that she at least has a chance to find a donor and failing that maybe a UCB.

1/25/07 Day 15

Ann has her 1st bone marrow asperation after chemo to check on the effect to the disease. The results are very encouraging! The blast cells in her marrow have dropped from 88% to 5%. The don't know if these 5% are cancerous or normal, but this is great news!!

Ann's favorite uncle Loi arrived from California today. He is one of the kindest, nicest men I have ever met. He is also one of the luckiest, to have been blessed with the wonderful wife and son he has.

1/26/07 Day 16 - 1/28/07 Day 18

Ann is very low on energy and her hair has begun to fall out in large clumps. She says she is "shedding like a $3.00 fur". Nausea and vomiting continue to plague her in the morning and in the afternoon.

She singed up to do to extra studies on for using a drug to help recover red blood cells and the other to study calcium loss in bones. She was randomized out of the red blood cell study and kept in the calcium one. Unfortunately this means more pills to take during the day to go along with many she is already taking.
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