Starting to see the light

On Day 19 of round 2, my Dad was given a G-CSF shot (granulocyte colony-stimulating factor), which is used to stimulate the growth of "healthy" white blood cells in the bone marrow. Having his WBC count return to normal limits at an accelerated rate will help his body fight the infections, and prevent any new ones from manifesting. He was given this for 5 days last round, and only 2 days this round. The G-CSF definitely helped his WBC counts come up and he hasn’t had a fever since day 20 (we’re on day 27 right now)!

Last week, our nurse noticed that his PICC line (peripherally inserted central catheter) had moved out of the entry site 1cm, so my Dad was sent for an x-ray to determine if the line was still positioned in the correct spot. The x-ray showed that the line was ok to be used for antibiotics, saline flushes and to draw blood, but the line will need to be advanced by the PICC team before the next round of chemo. We are scheduled to come back next Tuesday, March 29^th to do this procedure.

The colorectal surgeons were brought in to determine the next course of action regarding the returning abscess (aka- Pain in the Ass), as we do not want this to happen in the subsequent rounds of chemo. They tossed up a couple hypothesis of what it could be, and offered a few different directions we could take regarding treatment during their 10:30pm kick down the door style of consult. To definitively determine what they were working with, they inserted a dye into his drain, and had the area x-rayed to determine where the fluid was going, if there was leakage, and how much has healed thus far. The radiologist did not see an abnormal connection between the abscess and another area of the body, as the dye did not leave the abscess’ boarders. The surgeons did not feel that surgery would help, and feel it will heal on its own. Our hematologist is recommending preventive antibiotics at the beginning of the next round of chemo to hopefully prevent this pain in the ass from reoccurring.

On Saturday we were finally allowed to leave the walls of the Foothills hospital and on a pass until Monday. My Dad had not had a fever in 3 days and was placed on oral mediation; making time at home a lot more manageable. We were back in the hospital Monday to get blood work- to see how the blood counts are doing, and to determine the course of action regarding the PICC line (as mentioned above). Counts are almost within normal so we weren’t sent packing with a weeks worth of meds.

Sayonara hospital.

Pain in the Ass

On Friday we came in for our regular blood work, expecting to go home once the blood transfusion was finished… well…team Jer has been in the hospital since Friday March 11^th. I apologize to everyone for not posting sooner, but these last 5 days have been tough. As I was trying to deal with and digest all that was going on, I couldn’t gather enough motivation to write a post, so I apologize if you have been worried, or have heard any incorrect information

My Dad’s counts have completely bottomed out, and he is now dependent on either blood or platelet transfusions whenever his counts go below the transfusion limit. I now see and appreciate the importance of donating blood. In one day alone, my Dad received 4 bags of blood.

The “lower body” abscess has come back, along with a small nodule under his armpit. On Friday they did an ultrasound of both situations. The armpit showed no fluid accumulation and is diagnosed as celluliitis (skin infection caused by bacteria). My Dad was put on an antibiotic to combat this, as this inflammation is a sign of an infection.

Now onto this abscess… a little thing we like to call, a pain in the ass! The ultrasound showed that it was definitely back, and the interventional radiologist wanted it drained ASAP. The doctor manually drained the abscess with a long needle and then inserted a drainage system into the abscess with tubing coming out of his body; allowing the rest of it to drain naturally into a bag. Because my Dad’s platelets were extremely low, the doctors had to insert and attach this drain in a different position then last time. This new position is the WORST! Yes the abscess was drained, and that’s a good thing, but the amount of pain my Dad has had to endure for the last 5 days has probably been one of the hardest things I have had to watch to date. He is currently on an aggressive amount of pain meds to help alleviate some of this pain. The drain was only in for 5 days last time, so this time they would like to keep it in for a few days longer to hopefully allow for an increased chance of healing. The bacteria that was found in the abscess has also manage to escape from the area and go into the bloodstream, causing a systemic infection. This has caused my Dad to battle chill attacks and fevers of almost 40 degrees Celsius. Our doctors will be consulting with the surgeons regarding the abscess, as this pain in the ass must be resolved prior to any further treatment for the leukemia.

Just yesterday we added another bacteria to the mix. This one is systemic, and will hopefully respond to antibiotic treatment. For those of you keeping track, that is 3 strains of bacteria in his body, getting treated with 3 different kinds of antibiotics. Who ever said 3’s a crowd is right. Except in men’s fantasies.

Another echocardiogram was ordered and done yesterday. Having a systemic infection means that the bacteria are in the blood, which is allowing the bacteria access to your entire body. The ECHO was to determine if the infection had gotten into his heart valves, which it has NOT. Put that one in the win column!

We are still awaiting the results from his siblings.

Round 2's status update

On Wednesday, March 2, we completed round 2 of the chemotherapeutic drugs. Round 2’s dosage schedule went as planned allowing us to be at home every second day.

Along with the ‘regular’ side effect of chemo, round 2 offers extra ‘special’ side effects: rash (which he had the first round, and will most likely not get this round), eye infections and neurologic effects. To prevent an eye infection, he is given steroidal eye drops multiple times a day.

If the chemo begins to affect his brain function, one of the signs he will exhibit is a lack of coordination. To monitor this, my Dad must write the same sentence, at the same time everyday, to determine if there has been any change in writing pattern, or ability to write. Once his counts drops below normal, the possible neurological effects are especially dangerous, as the lack of coordination could cause a fall; which would be very dangerous to a person with low platelets. But, so far, the sentence is looking stellar, and no sign of an eye infection!

(All of you that have had the pleasure of reading my Dad’s handwriting know how fantastic it is in the first place… I’m sure the nurses assumed handwriting wasn’t a pre-req to get into law school.)

With the completion of the chemo drugs, we are now watching the blood counts fall. The chemo is wiping his entire body of both bad and good cells, and will soon be rebuilding new cells… sans leukemic cells! (fyi- that’s French for ‘without’)

May I introduce.... Bruce

Bald is beautiful

Round 2, here we go!

My Dad’s week ‘off’ has come to an end. Being at home was an adjustment at first, but after a few days we were all able to sink into our new roles at the Albert/Moi homestead.

As my Dad cannot eat many fresh fruits or vegetables, Kelly has bought him a Panini maker- a George Foreman type grill. I came into the kitchen one day to find my Dad grilling up a storm:

Jer: “I’m quitting all my jobs, and going to work at Subway”

Me: “Oh yah? And become a sandwich artist?”

Jer: “Yah, I’m going to make sandwiches all day. Look at this one.”

Me: “They are called sandwich artists Dad. How are the lines on your sandwich, are they perfect?”

Jer: “They’re perfect. And yah, I’m going to be an artist.”

After a long pause…

Jer: “Or I’ll work at Starbucks…”

Me: “So you’ll be a barista? You should make me a coffee right now then”

Jer: “Yah, I’d work at Starbucks in the morning, then Subway at night.”

PERFECT plan Dad.

This was absolutely the funniest moment of my week.

Tonight we start round 2 of chemotherapy. Kelly, my Dad and I are going to need the Jer Diddy army to be in full force as we move forward through this next round.

Chemotherapy treatment for patients with AML is divided into 2 phases: induction and consolidation therapy. The goal of induction therapy was to achieve remission by reducing the number of leukemia cells to less the 5% and having normal blood counts. We reached that goal! Go us. The goal of this next round, consolidation therapy is to eliminate any residual undetectable disease and achieve a cure.

With leukemia, even after remission is achieved, leukemic cells are likely to remain in numbers that are too small to be detected. If consolidation therapy is not done, relapse is almost inevitable. Therefore, more chemotherapy is needed to eliminate all the leukemic cells that were undetectable and to prevent a relapse.

My Dad will be receiving a high dose of cytarabine twice a day, every second day for the next week. (Induction therapy was given as a 24 hr drip of cytarabine for 7 days, with the first 3 days getting an extra push of a different chemotherapeutic agent). We will be at the hospital every second day to receive theses treatments, and at home between dosages. Our goal is have papa Jer home as much as possible as it will help prevent infections, boost morale, and keep him active.

Decisions, decisions

As many of you now know, I am currently enrolled in dental hygiene school in Hamilton Ontario. As it turned out, my Dad’s first round of chemo happened to fall during my semester break; allowing me to be in Calgary and provide care and support for him during this time

With the end to my Dad’s first round was in sight, and my semester break coming to a close, I was now faced with a decision; do I go back to Ontario and continue with my last semester, therefore graduating at the end of July; or, do I defer my studies for 6 months and stay in Calgary to continue caring for and supporting my Dad.

The decision to continue with school or to defer has been one of the hardest decisions I've had to make in my adult life. The week leading up to my decision was one filled with family discussions and inner turmoil.

Whether our journey with this disease leads us to a bone marrow transplant, or through multiple rounds of chemo; it doesn’t change the fact that what is happening, is happening now. Yes, I am aware of the possibility that in 6 months when I must return to Ontario to finish my studies, something may be going on with my father. That is a 'what if'. But right now there IS something going on. I can't base my decision on a 'what if' in 6 months from now. I need to base it on the present. There are multiple directions this disease could take us, but 1 thing for sure; the next 6 months is when the majority of the treatments will be happening.

Right now, my Dad is sitting in the corner of the ring, waiting for the referee to signal the beginning of the next round. I want to be the coach in his corner. The coach that never leaves his corner; supporting him, cheering for him, and even picking him up after a hard blow. That is why I have decided to take a temporary leave of absence from my school, allowing me to be in Calgary and act as one of my Dad’s primary caregivers. I will be returning to school in Ontario to complete my last semester in August of this year. At that time, I truly believe my Dad will be in remission.

A message from the Captain

Hi Everyone,

Its been a month (as of yesterday) since I was diagnosed and admitted to the hospital. I have now officially completed my first round of chemo, known as the induction round. Aside from a few complications that are considered common side effects of chemo, and the shock of the diagnosis, I am now feeling much better . This first round went well and was successful in killing the cancer cells. We are moving in the right direction, but we know we still have to fight this battle one day at a time.

To help prevent the cancer from returning, my next round of chemo, known as the consolidation round, will start in 7 to 14 days. We are in discussions with the doctors regarding our future steps: a third round of chemo (another consolidation round) or potentially a stem cell transplant, depending on the availability of a donor match.

I would like to acknowledge and thank everyone who has sent cards, notes, emails and voicemails with messages of support. Through this experience I am learning alot, and that an important tool for recovery is a positive outlook.

All your support, words of encouragement and prayers are helping me maintain a positive attitude. I truly appreciate your messages and want you to know that it does make a difference.

Much to our surprise, we have discovered the hospital is a very busy place and there is little down time. Its a beehive of activity and I am constantly challenged with finding a few hours to sleep, but I have been keeping up with your messages. Fortunately, I have been able to slip away on day passes home over the past two weeks for some needed quiet and relaxation.

I would like to thank Samantha for doing this blog so everyone can be informed as much as possible. As my primary caregivers, Nurse Sam and Nurse Kelly have alot on their plate.

I look forward to talking to you all in the near future.

Jerry