Welcome to the world- JerDon

A lot has happened in the 100 days post stem cell transplant.

After being discharged from the hospital ahead of schedule, I focused on trying to get my strength and energy back. This meant daily walks, rest and trying to eat a well balanced diet. It felt so good to be at home. Samantha has returned to Ontario to finish her last semester of school (Sam note: FINALLY I'll graduate in February!) , which has made our household a lot quieter (Sam note: Because everyone knows how much fun I am). However, summer has not been easy as I have encountered numerous complications (meaning: back to the hospital for periodic stays).

Now for some good news - A recent bone marrow test indicates I am still in remission and 100% of my blood has now been replaced with donor cells (thanks again to brother Don)...!

This is the best result we could hope for at this early stage and our family feels blessed, thankful and relieved. While there is still a long tough journey ahead, we have achieved our first major milestone. We don’t consider ourselves “out of the woods” yet, but it is a step in the right direction.

Right now I don’t feel " healthy" but the doctors remind me that recovery from a transplant takes a long time and I have to be patient. Also as my blood counts are still below the normal range it seems every virus within a mile somehow finds me, which is frustrating. But I am working to get better each day and with such good news feel re-energized. I will continue to remain under the care of the BMT Unit at the Tom Baker for the next phase of my recovery .

Keep the love, positive energy and prayers coming - it's working!

Jerry

Canada's Top Models

As you know, back in May our little family of 3 took a trip out to Victoria to get away from the hospital, Calgary and cancer for a few days. We had such a great and relaxing time in Victoria, as it also served to re-energized us for the biggest and hopefully last, battle; stem cell transplant. Before our visit to the island, I had asked a close girlfriend, Ashlene Narin, if she would be available and willing to do some family photographs for us. She graciously accepted and we conducted our family photo shoot at Fisherman’s Warf. The three of us had never been apart of any type of photo shoot, but we tried our best to channel our inner top model, and work it! The photographs turned out better then I had hoped, and we now have and incredible family memory. We wouldn’t have this gift without Ashlene…so thank-you!!! You did a fantastic job, and I can’t wait to see where this talent takes you!

Below are some of my favorite photos I’d like to share with you…

Howdy from Jerry - Day 35

Rumor has it that nurse Sam has been seen drinking margaritas on Scottsdale Rd. and partying at "W" at night . Another sighting was at the gay pride parade in Toronto riding a fire truck and later hosting a pool party and drinking fine wines in the Niagara peninsula. The call of Stampede has brought her home, but her Stampede obligations have kept her too busy to get to her blog duties as of yet so I am providing the update.

(Editors note (aka Sam): I apologize for not getting this out when my Dad actually sent it to me... I was too busy pretending to be a cowgirl and consuming adult beverages at the Stampede.... So the dates he mentions may be off by a few days...but you'll get gist, I believe in you)

It has been 35 days since Transplant Day. Here are some of the good things that have happened so far:

I was discharged 2 weeks ago ahead of schedule. I am now at home and go to the BMT clinic twice a week. My oncologist tells me that I am progressing well at this time - no infections or signs of graft vs. host disease, where my body rejects the transplant, other than a minor skin rash which is considered good (its a sign the new blood is seeing my old blood cells as 'enemies', and fighting them off).

My blood counts are close to normal levels now, most of my mouth and throat sores are gone, I've maintained my weight better than most, and I have been able to become more active, getting short walks in twice daily.

That being said, I still feel crappy - there are so many side effects from the transplant and the numerous drugs I am taking. Eating is a problem as I haven't had an appetite yet. The radiation makes food taste metallic, so it definitely closer to taking medicine than eating for enjoyment.

The doctors tell us this is the most intense and aggressive cancer treatment they give to cancer patients. So post transplant recovery will take quite a bit longer than recovery from my previous chemotherapy treatments. I am extremely tired all the time and this extreme fatigue is expected to last for at least 8 to 12 weeks.

Things are still very early and it is too soon to tell whether the transplant was successful. The next 65 days are critical as most complications arise the first 100 days post transplant. In fact, complications are likely and it will be a matter of managing the hiccups and taking it one day at a time.

So bottom line - so far so good.

On behalf of myself, nurses Kelly and Sam, thanks again for all your continued support and positive thoughts.

Life since transplant...

Today is day +15, and what a journey it has been since the transplant!

Prior to transplant, we were given a book that outlined all possible risks and detailed a grocery list of likely side effects. We have managed to put a checkmark beside most of the side effects… yay us. Our last 15 days have consisted of (but definitely were not limited to) fun experiences such as: lightheadedness, nausea, fluid retention, mucositis (painful inflammation and ulceration of the oral and digestive lining), stomatitis (inflammation of the mucosal lining of any structure in the mouth- tongue, gums, etc), rash and pain.

The worst side effect by far is the mucositis/stomatisis. It was incredibly painful and caused a great deal of discomfort and an inability to eat. We have weathered the worst of that storm, and with the increase of WBC, he is beginning to recover from that week of hell. People say you should always find a positive to every life experience. Positive: I found a new hidden talent. I make AMAZING blizzards. I’m no expert in the kitchen. My cooking skills are limited to popcorn, pancakes and yam fries. I am now excited to add blizzards to my list of expertise.

The aggressive chemo and radiation prior to transplant has once again forced my Dad’s blood counts to bottom out causing us to receive multiple platelet and blood transfusions during his recovery. With the aid of a few days of GCSF shots, his counts have stabilized and begun to show some recovery!

I would like to address one issue that I am sure has been on the minds of many; possibly even keeping you up at night. The pain in the ass. Has it been an issue? Have you been down to ultrasound, x-ray or CT? Is there a drain? Well, let me tell you. Ever since my Dad received his ‘piercing’ back in May, the pain in the ass has not been an issue (don’t get my wrong, its still ‘not right’ down there, but its no where near the issue that it caused us in the previous rounds of chemo). The doctors have pumped him full of antibiotics in hopes of keeping fluid accumulation down, and it appears the ‘piercing’ device is doing something in my Dad’s favor!

One last thing. Uncle Don is doing great! He experienced some fatigue after donating, but there have been no complications or negative side effects on his end. He's a champ.

Pics from Day Zero

We did it!! Family picture after the first transplant. The theme for that day was black, grey and white.

The room setup for the first transplant of the day. AND the incredible nursing team :) Little did they know they would be apart of a photo shoot

Uncle Don's stem cells getting hooked up. My Dad had 4 of those bags. 2 in the morning, 2 in the afternoon.

The stem cells were kept frozen, and thawed at my dad's bedside.... In a roasting pan. It was real silver... we kept it classy.

Day Zero- Transplant!

On June 7, 2011, at 8:08am, my Dad underwent the first part of his stem cell transplant. At 2:28pm, he underwent the second part of his stem cell transplant.

Certain numbers in the Chinese culture are believed to be auspicious. This is based on the Chinese word that the number word sounds like. The word “eight” sounds similar to “prosper”, “wealth”, and “fortune”. The Chinese put great value on the number 8. The number 2 is considered a good number in Chinese culture- “good things come in pairs”. Since we are part Chinese (I dare you to guess who)… 8:08 and 2:28… were great signs to us today!

Typically, with an allogenic stem cell transplant, patients would receive one transplant of two bags. The reason my Dad had to undergo two transplant sessions was because the cells that were harvested from Uncle D had an increased level of WBC’s. An elevated level of WBC’s in the donor cells, can lead to an increased risk of toxicity with the recipient. For that reason, they split the amount to be transplanted into 2 sessions, to transfuse a safe amount of WBC, eliminating toxicity risk.

The donor stem cells were thawed in my Dad’s room, and administered to him via his CVC line. My Dad experienced some immediate and intense side effects during the transplant, but the side effects quickly subsided once the transplant was finished infusing. It was crazy! What we really want you to know is that the transplant went ‘as planned’. No complications, and no adverse reactions.

Jer is currently resting easy in his hospital bed. I am stretched out on the bed next to him, eating Kernels popcorn… delicious! (That’s right…. TWO beds… good things really DO come in pairs)

When my Dad got diagnosed on January 14^th, the thought of a transplant was so far from my mind, it was just an ‘option’ that was to be explored at a later date. Well that ‘later date’ was today. We have fought one hell of a battle to get here, but we made it! Our fight is nowhere near over; some could say it is almost just beginning (again). Today my Dad was given an extraordinary gift, one that offers hope. His gift will now act as a tool, which will aid him in his journey to reach his ultimate goal, remission. In a few weeks we will find out if his body has accepted the transplant (grafted) and has begun to produce new, healthy cells. We will continue to take this journey day by day; as I am sure there will be new challenges to face, hardships to overcome, and tiny victories to celebrate. Today… we celebrate. We made it!

My 2 favorite people!!

This picture was taken on June 1st. That's Uncle Don lounging in his plush hospital bed while he donates his stem cells. After my Dad finished his chemo for the day, he went down to visit his bro.

A small act of kindness and giving, can make such a significant difference in one person's life.

You down with ATG... Yeah you know me!

*if you have never heard of Naughty by Nature, you will NOT get that title. Sorry. I played O.P.P. for Jer, and even HE knew the song. Get with it. *

From Thursday to Sunday, my Dad was receiving both types of chemo drugs. Up until Sunday, once the day’s treatments were completed, my Dad was allowed to go home on an overnight pass. It was great to have him home at night; allowing him to sleep in his own bed and enjoy all the conveniences home has to offer (ie. food that tastes like real food, and a television that was made in this decade).

Yesterday, in addition to chemo, my Dad received his first dose of ATG (antithymocyte globulin). ATG is an immunosuppressant drug, one that lowers the body’s immune response. ATG is used as an anti-rejection drug for stem cell transplant patients, with the hopes it will allow the bone marrow to grow and make new blood cells. Patients are unable to leave the hospital once they begin taking this drug, as it comes with many possible side effects that the medical team must closely monitor. So, Jer is back to adult sleepovers at Hotel du Foothills.

‘Fun fact’: the medical team calls ATG, the rabbit drug… because it is made from rabbits. I was wondering why my Dad had begun to do the Bunny Hop to the bathroom. Now I know why.

Today is Monday, or as people around here would call it, Day minus 1. This morning my Dad underwent total body radiation, and is currently receiving ATG. Later this afternoon, he will go in for his second, and last, dose of total body radiation.

If you didn’t catch it…Sunday was our last day of chemo… hopefully…forever!!!

Tomorrow is Day 0… TRANSPLANT DAY!

The "goods"

Donation Day

The transplant team set a number we had to reach in order for us to begin chemo safely… and I’m happy to report that Jer crushed it! He is not ‘back to normal’, but with much hope and positive thoughts, my Dad’s liver levels have came down enough for us to begin the transplant process. Hiiiigh-five (in a Borat accent)!

On Tuesday, my Dad had the test dose of chemo. This round of chemo is different then the others as he will be taking different chemotherapeutic agents, which are both (yes, 2 different drugs), quite aggressive. The test dose is done to make sure the amount of drug administered is the correct dose for my Dad’s height, weight, and condition. He had blood drawn every hour, for 7 hours once the drug had been administered to see how his body was reacting and metabolizing the drug.

Today my Dad started one of the chemo drugs (this one was not tested, as it isn’t as sensitive). This drug will be used for all 5 days of chemo, and tomorrow, the second chemo drug will be added and piggyback the first drug for the remaining 4 days of chemo.

Today is a BIG DAY in the Team Jerry world. Today, my Uncle Don bravely donated his stem cells! My Dad and Kelly went down to visit him during this process, and told me that Don was looking great, feeling great in spite of the fatigue, and he said it didn’t hurt one bit!

Stem cell donation is a completely self less act, and we are so appreciative and incredibly thankful that my Uncle has agreed to participate in this process.

Liar, Liar

Just when I told you there was a plan…

We were SCHEDULED to have the test dose of chemo last Tuesday, but we had a minor setback.

About 10 days ago, my Dad began to experience severe abdominal pains, which were only relieved by taking T3’s. The medical team had my Dad come into the hospital to access what was going on. The blood work showed that one of his liver levels, his ALT level, was elevated…a lot. As it was the long weekend, and the pain had ceased, they monitored him with daily blood work until the doctors came back from their camping trip (that’s a lie, I’m sure doctors don’t camp). On Tuesday the transplant doc decided to go ahead with the central line procedure, but ordered an ultrasound and a CT scan to further investigate the liver situ. Both the ultrasound and CT came back clear, but his ALT level was still elevated (it had came down a bit since the spike over the long weekend, but not near normal).

The transplant team made the executive decision to delay transplant until the ALT number had decreased to a level where they felt comfortable proceeding. We were instructed to go home, and return to the hospital every second day for blood work so they could follow my Dad’s levels.

Unlike Team Jer, Team Uncle Don is still following their regime, and the transplant team will be harvesting his stem cells on June 1^st, which will then be frozen until my Dad is ready to accept them. Please keep Uncle Don in your thoughts tomorrow as we are all hoping for a smooth, easy and successful donation!

From now on, I promise, no more lies. That hurt me as much as it hurt you.

Guess Who's Back?

I am sure everyone missed me… how could you not?!? Have you seen this face?

These last few weeks have been great! We managed to sneak away to Victoria for 4 days, where we caught some nice weather, felt the ocean breeze and saw some beautiful scenery. That trip was much needed for all involved. My Dad was even able to break free from prohibition and have some drinks! After not drinking for over 3 months, I am sure he was sauced after one drink… jealous. While in Victoria we had a very good friend of mine take some family pictures of us at Fishermen’s Warf. We are all eagerly awaiting the results of this photo shoot and will definitely be sharing some pictures with you all when they become available.

Now back to reality.

At the beginning of May, my Dad was discharged from the hospital and released from the care of the hematology team. The hematology team at the Foothills was outstanding! There are no words to express how thankful and grateful we are for everything they have done for our family in the last 3 months, but I hope they know how valued their work is. Today, my Dad was admitted back into the hospital. The bell has rung and the trade deadline is over. We have officially been traded to team Bone Marrow Transplant (BMT).

Today my Dad will be getting his CVC (central venous catheter) line inserted and will undergo a test dose of the chemotherapeutic drug that they will be administering in the coming days.

I will try to update the blog every day or two, so I can keep everyone up to date and by our side as we embark on this next chapter of our fight against leukemia. Stem cell transplant, here we come!

Oh Brother

**a Jer Diddy post**

While recovering from round 3 of chemo we learned my oldest brother Don was a donor match. As a result we had a decision to make on my treatment plan- whether to carry on with chemo for 2 more rounds, or proceed with a stem cell transplant.

We met with the doctors and the transplant team and were provided with all the statistical outcomes for each treatment plan, the risk factors and the possible outcomes for my genetics, age, health, etc. After going back and forth on a decision, we decided to proceed with the transplant. While the transplant comes with higher risks and are told will be more physically and mentally challenging than what I have experienced to date, it offers much greater odds for a full recovery than does continuing with the chemo alone.

The transplant is scheduled to occur on June 1. Both Don and I are going through numerous medical tests in preparation for the transplant. I will be admitted back into the hospital a week ahead of time to receive chemo and total body radiation. This is to help my body accept Don’s stem cells. On morning of June 1^st they will take Don's stem cells from his blood (a process that takes 5 to 7 hours) then that night transfuse them into me. The following 90 days are critical in the recovery and dealing with grafting issues and other possible complications, mostly risk of infection. Similar to chemo, I will be immune suppressed and most of this time will be spent in the hospital.

I can't thank Don enough for doing this. Don has always been a big brother who has always looked after his younger brother and been there for me throughout my life. Again he has stepped forwarded without even asking, Thanks bro.

Other than trips to the hospital for appointments I am spending my time resting and my new job – eating… as much food I can to try and put back the weight I have lost; as it will be all coming off as food intake becomes a problem during the stem cell procedure. (Sam note: Its awesome having all these high calorie foods in the house and watching someone try and GAIN weight, when I am eating my rice crackers and going to the gym… every woman’s dream roommate) We also plan to take a quick trip to Victoria to spend some time around the ocean and smell the flowers.

A big THANKS to everyone for your continuing prayers and positive thoughts as I go through the next round in this fight.

**Sam note: For everyone that is wondering…. We DID get out of the hospital in time to have Easter chocolates at home! No hospital Easter egg hunt, unfortunately.

Hopped back into the hospital

Round 3 had been going quite smoothly and we were really enjoying our time at home… until Sunday night. On Sunday my Dad spiked a fever and it was back to the hospital for team Jer. Along with the fever, my Dad had been experiencing increasing amounts of pain in the abscessed area. The pain in the ass was back! How bad this time? We had to wait and see. He has also been experiencing some chest congestion; for this reason he is put on isolation until the nasal pharyngeal swab results come back; which will determine if a virus is causing this. (FYI- watching a nasal (nose) pharyngeal (pharynx=throat) swab was one of the most uncomfortable things I have been apart of yet! Its just as you imagine… swab goes up through the nose, down to the throat… you can all collectively gag with me)

It is Wednesday now (4/20 for all you hippies), and we are still in the hospital. He has been put on an IV antibiotic to help battle any infections or viruses he may have running around in his body (the results from the lab have yet to come back to definitely determine what the cause of the fever or chest congestion was). My Dad’s hemoglobin levels are struggling to make any gains, or even stay above the transfusion line (less the 80). He has received multiple bags of blood and a few bags of platelets, but he can’t seem to hold on to those red blood cells! Jer is going to have to start producing some RBCs STAT!

We went for an ultrasound on Monday to take a peep at the developments of Mr. Abscess. The ultrasound showed that the abscess is too small to do any type of intervention (ie. Drain) at this time. Once my Dad’s counts start coming up, his WBCs may go into worker mode and fill this abscess with pus; thus forcing us to drain it at that time. But, until then, the situation is under control with some good old pain meds.

The doctors are trying to get us out of here tonight and allow us to go on a pass until Friday. I don’t know how my Dad is getting to the hospital Friday, because it’s a holiday, and I don’t work holidays. Hopefully, Friday goes off without a hitch and his counts will be on the rise because we’d like to have Jer Diddy home for Easter weekend. Plus… there aren’t any good hiding spots for the Easter bunny in this hospital room.

Round Tres

Here we are, knee deep in round 3.

We are on Day 12 of round 3, and things are moving along as ‘planned’. My Dad did the same regiment as round 2, as we are continuing with consolidation treatment. Evening chemo (sleep overnight in the hospital)/morning chemo- home for 24 hrs- REPEAT (for 3 sessions, totaling 6 doses of chemo). On the day my Dad stared chemo, he was also started on antibiotics. This was given as a preventative measure, in hopes of warding off that persistent ‘pain in the ass’. My Dad is still experiencing discomfort in the area, but it isn’t near the pain he has experienced in prior rounds; so keep those fingers crossed this thing doesn’t manifest again!

This round of chemo did not start out great. As this is our third round, the chemo drug, cytarabine, has been building up in my Dad’s body since the first doe in round 1. What this means for my Dad is that he will experience chemo side effects sooner, and his counts will drop faster… how exciting for him. Jer and I were at the hospital on Monday and the blood work showed his counts are on the brink of bottoming out. We will be back at the hospital Wednesday; at that time my Dad will most likely need a blood and/or platelet transfusion. On a side note, Canadian Blood services just informed me via snail mail that I am O positive, same as Jer! If it comes down to it, I’ll lay there while they suck blood directly from me into my Dad. I’m not sure if that procedure is approved (or ever done for that matter), but hey, I’m willing to try!

As of today, we are in the “sit and wait” period of the round. We are watching the counts drop, HOPING and PRAYING that we can sneak through this round infection free, and then watch the counts rise. My Dad’s counts should be coming up around Easter, which is perfect timing because my Dad promised me an Easter egg hunt. I know what you are thinking; I’m 25, I’m basically 40, too old for hunting. But who is too old for fun and chocolate? Plus, my Dad and Kelly have moved into this new house- new hiding spots for my Dad, I mean the Easter bunny. My brother and I could hunt the terrain of our Lake Bonavista house with our eyes shut. With a new landscape…. This could be a weekend long treasure hunt.

Love

This is a picture from the blood drive.

These girls are the closest thing I have to siblings now. They are my sisters (a couple are absent).

I can't thank them enough for their love and unconditional support.

I wanted to personally thank the people who arranged the blood drive. Everyone wants to do something to help Papa Jer or lend support, but doesn't know how. You offered a vehicle for people to come out and do such a selfless act that not only my Dad, but many other patients who need blood greatly appreciate.

A big THANK YOU to everyone who came out to the blood drive to donate blood!

I am terrified of needles, therefore I have never donated. After seeing what my Dad goes through on a daily basis and watching how a bag of blood can literally save someone's life, I knew it was time. My eyes were filled with tears, body was shaking, and my hands were as clammy as a kid during the dance unit in junior high gym class. But.... I did it! And so did many other people! With my Dad in mind, you did a selfless act. Your blood may not directly benefit my Dad, but it will greatly impact someone's life who needs something as simple as blood to survive.

When my Dad is feeling better, I will get him, Kelly and myself into the incredible shirts you had made and take a picture for the blog!

A word from our sponsor...

Hi everyone, I wanted to thank all of you who participated and organized the March 23 "in honor" blood donor clinic. By giving blood you have helped many people and saved lives. It doesn't get any better than that.

I have now completed my second round of chemotherapy. During my week off, my days were focused on getting my energy back and preparing for the next round of chemo. This means eating frequently and well (no junk food!), sleeping as much as possible, walking and doing breathing exercises. The activity and breathing are to help blood circulation and eliminate toxins caused by chemo.

The rest of my time was spent traveling to and from the hospital for various appointments. Kelly is also keeping me busy with those little jobs around the house that never seem to get done- between that and the hospital there hasn't been a dull moment.

I started Round 3 of chemotherapy on Friday. One thing we are learning about our treatment "plan" is that there is no plan. The course of treatment changes daily and sometimes hourly. For example, due to a worldwide shortage of the chemotherapy drugs I was taking, Round 3 was to involve a different protocol. At the last minute (a half hour before my first dose), a small supply was found so that I could continue on with the same treatment as I had in Round 2.

Thank you all for the cards, gifts and ongoing words of encouragement. In addition to the physical challenges of this disease, the mental battle has been very trying. Your support and positive thoughts are helping me through the tough moments.

Looking forward to Spring finally arriving, as I am sure you all are!

Jerry

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

Hi, I'm his daughter

On Thursday at 10:00am the doctors performed a bone marrow aspirate on my Dad. The procedure was actually done at his bedside, so I was able to be with him the entire time. The testing the lab will do on his bone marrow sample will be used to determine if he is in remission. Remission is defined as having a normal complete blood count; less then 5% of cells in the marrow can be blasts (leukemia cells); no signs or symptoms of leukemia in the brain, spinal cord or elsewhere in the body. The doctors received half of the results on Friday, and are awaiting the other half in order to make a definitive decision. I will keep the Jer Diddy army posted.

During the last couple weeks, my Dad has been experiencing pain around his ‘behind’. With no relief in sight, and blood counts now up, the doctors have decided to Sherlock Holmes this matter. On Friday my dad and I were off to an ultrasound appointment to hopefully figure this ‘pain in the ass’ out.

Side note: We’ve been here for a month now, and I still get, “and you are…..?” HIS DAUGHTER (not his gold digging 25 year old girlfriend, creeps). I get it; Hugh Hefner just got engaged to a 24 year old. But you don’t see my Dad rolling around Foothills with a smoking jacket, silk PJ’s and a cigar.

During the ultrasound the radiologist diagnosed a large abscess and brought an intervention specialist surgeon in to determine the course of treatment. The surgeon said he could drain it, and the procedure would be done right away. In the blink of an eye my Dad was wheeled in to a room where he would have a giant needle inserted, which would puncture the abscess and suck out the fluid that filled it. Currently, my Dad has a drain-like system attached to him, to allow the abscess to naturally finish draining out and hopefully, heal on its own.

Today we are at the hospital waiting for a colorectal surgeon to come take a peep at the ‘situation’ to see if this is the best course of treatment for this abscess, or if another form of intervention is necessary.

Bruce and his baggage

(Written Thursday morning... pre-bone marrow procedure)

On Wednesday we were sent home, and told not to return until 9am Thursday morning. At 10:00am on Thursday (today), the doctors will be performing a bone marrow aspirate (to “suck out” liquid bone marrow) on my Dad, which will allow them to determine if he has reached remission. The results from the bone marrow examination are expected within 1-4 days of the aspirate procedure.

Leaving the hospital with Bruce is no easy task. I strapped his IV med pump in its fashionable fanny pack across my chest (because wearing a fanny pack around your waist went out of style in the early 90’s… and even that’s pushing it), had a laundry bag full of supplies such as syringes, caps, alcohol swabs, heat packs and 2 large paper bags full of his IV and oral medications. I thought, “This is aggressive…all of this for 2 nights, 1 day?”

Prior to being released into the wild, Kelly and I were given a detailed lesson on how to purge my Dad’s PICC line with a saline filled syringe, attach his antibiotic medicine bag to the pump, hook it all up to him, and then purge the PICC line again. This must be done 3 times a day (now I think the docs are bumping him up to 4 times….eff). I suggested that I could go out, and just make sure I come home by 2am in order to hook him up to his antibiotics… my motions was denied!

Sitting in our dining room the first night home as a family, staring at our table covered with medical supplies and medications, I thought to myself, “Holy crap, how am I going to do this?” I felt overwhelmed and scared. With one diagnosis, our lives have changed forever. One day, I’m thinking about friends, boys, school, and gossip. Now I think, what are my dad’s vitals, when is his next dose of medicine, is he exercising, is he getting enough fluids... Yes, my life has changed.

After successfully administering the first round of IV meds, I went back down to my room, laid down in my bed and thought…”I CAN do this”.

The 1-day and 2 nights home was not only great for my Dad, but also for Kelly and I. We were able to do what we needed to do, but also act as caregivers to my father. Everyone wins! Kelly and I are looking forward to more home stays (especially the 'off' week), and I hope my Dad is too.

Last day of luscious locks

(photo: pre head shave photo-op...It was taken at 9pm, please hold your judgement on our beauty)

On Day 21, Jerry Albert became Bruce Willis.

Around day 17-18 my Dad began shedding like a dog. Every time he got up, the pillow would be covered with little Jer hairs. He turned to me on Day 20, and said, “so ham, what are we going to do about this?”

I thought to myself, “if B.Spears can shave a head, so can I!”

With the electric razor charged up, I put towels around his neck (like a real pro) to catch the hair, and began the head shave. First, I shaved steps into the sides of my Dad’s head. I always wanted to know how people like the Fresh Prince of Bel-Air did it…now I know. Next, I shaved his hair into a full Mohawk, Chuck Liddell styles. I voted to keep this style, but my Dad looked at my and said, “I’m not 15 Sam, shave it off.” (party pooper) Once the head shave was completed, my Dad got up to look in the mirror and yelled, “HAM, I’M BALD!”… Duh Dad, what did you think I was doing? Should have kept the Mohawk.

(FYI- Ham is not a spelling error. That’s what he calls me… and only him!)

When Kelly arrived back at the hospital, she said, “Wow, he looks like Bruce Willis.” My Dad then said, “Now I need to find me my Demi Moore”….

Indiana Jones'ing this hospital

(Written Feb. 8, 2011)

In the last week, I have not only been my Dad’s nurse, but also his travel companion. Our adventures included a CT scan, ultrasound and echocardiogram. A chest x-ray was also done, but he flew solo on that mission.

Unfortunately, my Dad was continuing to have random fevers earlier on in the week. As the blood cultures kept coming back negative, the doctors were trying to find another possible site or cause of infection.

The CT results showed a clot in my Dad’s lung- a pulmonary embolism. The clot is small therefore the doctors are not treating it yet (with anti-coagulants), just monitoring.

My Dad must focus on deep breathing (some would say ‘yoga breathing’), because his shallow breathing and regular supine position, are not allowing the bottom of his lungs to be used which is causing them to not receive enough oxygen; therefore the little branches in at the bottom of his lungs are collapsing. The physiotherapist has worked with him and taught him breathing techniques he must practice. She has also shown him exercises he must to do to prevent clots from forming and keep the oxygenated blood moving around his body, which will also provide energy.

Chest x-ray= clear

Ultrasound (extremities)= no clots

As my Dad’s blood counts (especially his WBC) weren’t coming up as quick as we or the medical team would have liked, the doctors decided to inject Filgrastim (or GCFS) into my Dad’s abdomen every morning to stimulate the proliferation of white blood cells. This, along with a couple days of transfusions have given my Dad the boost he needed before his marrow was able to produce blood cells on its own. On day 23, his counts finally came up! Not quite within normal limits yet, but getting there! Hasta la vista, transfusions.

Today, we journeyed through the underground workings of the foothills hospital, to get to our echocardiogram appointment. The CT results from earlier this week showed a possible genetic defect with his heart. When you are growing inside a tummy, you use oxygen obtained from your mother's blood through the placenta. As you can’t breathe real air, only a small amount of blood needs to go through the lungs, so the path by which blood circulates through the heart and lungs is different in a fetus. The mixing of the venous and arterial blood occurs through the foramen ovale, which is a temporary hole between the right and left atria. This hole is supposed to close within a couple of days or weeks of birth, but the CT suspected otherwise. After 30 minutes of watching my human anatomy text books come to life on the ECHO computer, the doctors found no such defect! His heart is a normal as can be. FYI- seeing my Dad’s heart, watching his valves open and shut and hearing the blood getting squished through the arteries and veins….was my HON

No one ever said it was going to be easy

Referring to this journey as a fight, couldn’t be more accurate.

You hear that it’s going to be a battle, but you never really know what to expect as you get tossed into the ring to face your opponent… cancer.

My Dad managed to get through round 1 of the chemo drugs with minimal setbacks and forward momentum. As a group we thought, “ok, we can do this”. Then, out of nowhere, cancer bit our ear off (Not literally people! Jer still has ears)... now I know how Evander Holyfield felt.

Chemotherapy not only kills the abnormal cancer cells in the body, it attacks every rapidly dividing cell (cells in the bone marrow, digestive tract and hair follicles). The cytarabine has managed wipe out my Dad’s blood counts, which has left him struggling to main adequate functioning blood levels. To further understand what I mean when I say “blood counts”, I’ll fill you in on the normal limits:

WBC: 4.0-11.0

Hemoglobin: 137-180 -> transfusion necessary when below 80

Platelets: 150-400 -> transfusion necessary when below 20

As a result of his low numbers, a few platelets and blood transfusions were necessary this week. Being immunocompromised and anemic has definitely brought us our fair share of challenges. The doctors expect his counts to begin to go up by day 20, and by day 23-28, they should be high enough for his bone marrow to be tested again, which will determine if he is in remission.

We live one day at a time, and sometimes, one hour at a time. I am looking forward to tomorrow, where I hope to see gains in his hemoglobin and platelet count. As a group, we all need a ‘gain’ day.

Personal Note

Adding to my list of accomplishments, I am proud to report that on Day 18, I finally memorized the 7 digit Username and 8 digit Password to the Foothills hospital unit 57 wireless internet. Go Sam

Also, I have decided to stop being a fattie and take the stairs instead of the elevator. My Dad is located on floor 5. You may be thinking, "Sam, 5 flights of stairs is nothing, go up when you arrive, down when you leave". BUT, the washrooms are down on the Main floor. So every time I have to use the facilities, go to my car, or meet a friend for 'coffee and creeping', I must get my hike on. My fluid consumption will probably go down now.

Nurse Sam back in action

I leave for 3 days and come back to this! Nice way to welcome me back to Calgary.... with a snow storm. (Fyi- I didn't bring this weather with me)

A quick note:

I am currently enrolled in a private dental hygiene college in Hamilton Ontario (armpit of Canada or most beautiful city... if you like steel factories, downtown creatures and methadone clinics). As Friday January 28th was the last day of my 2nd semester, I felt it necessary to go back to Hamilton for a couple days to write a final and complete a couple clinical assessments, in order to be promoted to my 3rd and final semester. I am thankful that my school has been supportive and accommodating in regards to my father's situation, as we have managed to work together to put my 2nd semester behind me, and allow my primary focus to be my Dad. I am currently in a 2 week semester break, with my first day of classes for my 3rd semester beginning on Feb. 15th. My school has granted me these 2 weeks to decide if I am going to return to finish with my current classmates, or if I am going to defer, and finish when the next semester begins mid August.

Enough about me! Back to my main man....

As I mentioned in my last post, my Dad has finished his first round of chemo agents. This week his blood counts showed that his WBC, hemoglobin, and platelet levels have completely bottomed out. With his numbers reaching all time lows, he was given a couple platelet and blood transfusions. The doctor has informed us that his body will be dependent 1-2 transfusions per week until his marrow begins to produce enough of his own blood cells. (All blood cells -WBC, RBC, are produced in the bone marrow) With his platelet levels being as low as they are, he has experienced some gingiva bleeding while brushing...I guess that job should be left to the expert. At this point, my Dad is deemed immunocompromised, which makes him extremely susceptible to contracting any virus or infection. (This is where the bleach showers I discussed would come in handy) The counts should begin to go up around day 23-28, today is day 15. At that time they will test his bone marrow again to determine if he has attained remission. This has placed us in a sort of holding period, as we roll with the punches of no immune system.

On Thursday he was given his first 'pass' to leave the hospital for the afternoon. Kelly and my Dad went home and were able to have lunch with a real knife and fork and watch some golf. Today we were given another pass and have been lounging around... watching golf (it's winter, why is golf on), having lunch, being 'normal'. I think it was hard for my Dad to leave the safety of the hospital at first, but once home visits become more routine, I believe they will come to be therapeutic for him.

I wanted to send out a massive THANK YOU for the unconditional support we have received thus far. Kelly and I have brought all the cards to the hospital, read him the comments on the blog, and are working out way through the emails. I know it may not seem like your doing much, but every prayer, thought or word he has received will positively aid his journey towards complete remission.

Ding Ding Ding

The bell has rung... round 1 is over! He did it!

The last drop of chemotherapeutic agents went into my Dad's body at 1pm on Saturday.

In the last few days he has received a 2 bags of platelets and 2 bags of blood. The transfusions were necessary as his platelet and hemoglobin levels were coming back low.

He has lost all the fluid weight he has gained since being admitted. Now he must maintain his fluid and food consumption in order to not lose anymore weight. Chemo is not a diet.

The doctor was concerned with his central line (the main tube that delivered everything to his artery beside his heart), as the site was red and tender. There was speculation that the central line is the cause, or could potentially cause an infection. (About once a day my Dad has been running a fever; a fever is a sign of an infection) The doctor made the decision to take the central line out on Saturday. My dad and I watched the Flames game while the doctor removed the central line at his bedside with MUCH MORE ease then when it was being put in. You may be thinking, "but Sam, how will he be getting his medications now that his central line is out?" Let me tell you... Earlier that day the nurses put him through mini hell while they put a peripheral line in his arm. A peripheral line looks just like an IV line and is in the elbow crease of his right arm. All of his meds, and anything needed to be transfused will now be administered through this line. This is only a temporary situation. On Monday a pick line will be inserted into his arm, and the tubing will go up his arm and insert into that main artery by his heart again. The nurses will be able to draw blood from this line; something they cannot do with the current peripheral line. We haven't said goodbye to our friend central line quite yet. Another one will need to inserted into my Dad (this is a procedure done in the operating room- OR for all you Grey's/ER or people with actual medical designation), but not until the next round of chemo. He said the resident doing the last central line procedure looked more scared then he did, and after numerous attempts, ended up having the attending finish the procedure. As you can imagine, Jer requested that a student NOT do the next one.

Days 7-14 is a crucial time period. This is when his blood counts are at their lowest levels and he is at the most risk of getting an infection. Kelly and I have been very diligent with proper asepsis... if we could shower in bleach, I'm sure we would.

On a lighter note...

I think I have a pretty cool Dad. He sports trendy clothes (sometimes...sometimes he struggles). He knows of the 'hot' places to go in Calgary. His stampede party schedule is idolized by my friends. Well.... His LATEST fashion trend is none other then, the snuggie. MY pink snuggie my friends got me for Christmas. Jer Diddy...always keepin' it fresh.

Day 6

As I mentioned in one of my early posts, when my Dad arrived to the hospital, his care was taken over by one of Kelly's friends, a hematologist specialist. Now that a week has passed, the initial shock has worn away and we are almost through our first round of chemo, the doctor, my Dad, Kelly and I have reached a collective decision that my Dad's care be handed over to another doctor; one with no personal connection. His care will now be in the capable hands of another hematologist at the Foothills, one who also specializes in bone marrow transplant; something my Dad may be needing in the future. Our original doctor will now be able to act as our 'friend on the inside'... visiting with my Dad, checking in on his care, offering further clarifications and opinions, and being there for our family if we ever need to talk. Our family and the Jer Diddy army would like to send out our most sincere 'THANKS' to our original doctor, and friend, for all the work she has done to get my Dad to the point he has reached so far, and know that her diligence and passion has been acknowledged and very appreciated by us.

I am excited to report that my Dad has slowly been acquiring his appetite back , and is eating solid foods at most meals. Every morning we watch our peeps Regis & Kelly, and there is always this commercial for KFC (fyi- coupons are not necessary, they have everyday low prices on buckets)...today he turns to me and says "for some reason, I am craving KFC". I'm not exactly sure if the Colonel's recipe is in the immune boosting/cancer fighting diet plan?

My Dad says he wants to have more followers then Ashton Kutcher.... so sign up and be a follower