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’)