I get by with a little help from my friends

My apologies in advance for the lack of wit and upbeatness of today's post.  It has been a rough few days as things have somewhat stagnated.  In a way that is good, but creates a feeling of being stuck in limbo.   Jackie's blood cell counts continue to move in the right direction which is awesome, but the focus of her assessments and treatments have now shifted to her Graft vs Host Disease (GVHD).  When I say stagnated, I am referring to the GVHD.  Some symptoms have improved while others have gotten worse.  Jackie has been dealing with a plethora of GI issues as we have indicated previously and those have seemed to have increased.  Her nausea has gotten to point where she has been unable to eat anything for several days (except for some homemade jello).  She has been able to drink water, gatorade and gingerale.  With very little caloric intake, she has had next to no energy.  She definitely needed to spend the weekend in bed, but w...

  Staying the Course Hello and welcome back. We experienced some rough waters this past week.  When the seas and weather are difficult to navigate, you need to work a bit harder and dig a bit deeper to stay on course. We are going with the nautical theme as Jackie has been talking like a sailor since she shaved her head. As indicated previously, Jackie has experienced some emotional and physical highs and lows for a few weeks.  Although things are progressing, there have been a few setbacks along the way.  Her mouth and throat are still very sore.  For almost a week, it was so painful she needed to take pain medication just to swallow liquids.  She then started a new medication that did not cooperate with her and pretty much put her in a 36 hour doze.  She can barely remember anything from those few days and what she can remember is conglomeration of reality, dream, overheard conversations and dialogue from various cooking shows.  But despite thes...

  Pain, Discomfort and Emotional Rollercoasters The past week or so has definitely been a challenge for Jackie, which translates directly into a challenge for the rest of us (meaning it is difficult to watch, I am in no way am implying Jackie has been a challenge to deal with.  There is no way I'd say or even imply that.  Never.  Shame on you for even thinking that).   We were anticipating a difficult week as we knew the peak of the chemo after effects would happen around DAY 14.  I do not recall if I had specifically outlined these effects previously but they include hair loss, abdominal pain, mouth / throat irritation with open sores as well as some nausea, vomiting and other GI disturbances that I won't get into.  You're welcome.   What we were not expecting was the prolonged fever and rash over most of her body.  That irritation, combined with the difficulty swallowing food, meds and even water really takes it's toll.  Havi...

Hair Today Gone Tomorrow Yeah, you know where this is going. One of those nasty after effects of the chemo is hair loss.  This started on Saturday (DAY 10) and Jackie pulled the pin to take it all off by Sunday. Girly, one of Jackie's health care aids, is no stranger to the clippers and made quick work of it. As I keep mentioning, we are always reminded that we are not alone on this journey.  We were able to set up a zoom call and several family members and friends joined the head shave.  Even I gave up my amazing locks. 😏   We'll keep this one short. Thanks for reading. Mike

A Sack Of Oranges Welcome back!  Sorry for gap in posts, I decided to head home for a few days to take care of a few things around the house. As we mentioned in the past few posts, Jackie has required platelets and blood to maintain appropriate platelet counts and hemoglobin levels.  As of today, she has received a total of five units of platelets and three units of blood. I'm gonna give you a heads up right now, another plug for Canadian Blood Services coming shortly and you will see why.  We learned something the other day. Have you ever decided to make fresh orange juice?  You wander over to your local purveyor of fresh produce and walk out of there with a 5-10 pound sack of oranges.  Yeah, you have.  Then you hauled your sack of oranges into your kitchen.  I sure hope you were not living on the fourth floor of a walk up complex.  You get out the old Cuisinart, you proactively grab a few pitchers and then you get to makin' juice.  Orange a...

  Friday the 13th Good ol' Friday the 13th.  The bringer of superstitious bad luck.  There are several differing beliefs as to why 13 is unlucky.  The Norse say that 12 gods were invited to dinner and Loki, the god of mischief, uninvited, showed up as the 13th guest creating chaos and mayhem. Christians believe it is linked last supper.  The list goes on. When the nurse was writing the date on Jackie's daily board, I mentioned the fact that it was Friday the 13th.  The three of us acknowledged it with a tilt of the head, and the nurse made a joking comment about it.  Then, within seconds, a large crow flew into Jackie's window.  Now if that don't give you the heebie jeebies, I don't know what will. Luck is a funny thing.  Without getting into a deep philosophical discussion, the concept of luck is different for everyone.  Is there such thing as good luck or bad luck, maybe a neutral luck?  I'm not sure.  I think luck, to a degr...

  Thanks for tuning again.   My apologies for being a day late, hopefully I am not a dollar short. Jackie has had some really amazing days this week.  She has been progressively feeling better in many ways and even had a great appetite yesterday.  She is getting plenty of laps around the unit in with Joanne and sometimes me 😉.  Not sure if we covered this, but 13 laps of the unit equates to 1 km. As Katie said, "waffle sticks! You get waffle sticks?!" They are still running several different tests to make sure she isn't developing any kind of an infection.  Given her history of Crohn's, they want to be extra proactive when it comes to that.  With no immune system, Jackie's body has no defense against infection so any treatments would need to happen early. The care team is also monitoring Jackie's cell levels in her blood.  As mentioned previously, her body is now removing the old cells and it is expected to see these levels drop while we are...

  I Really Do Get By With A Little Help From My Friends If you are asking yourself, "what's with the picture?", again you may need to catch up on some 80's/90's pop culture. When we chose the name of the blog, we did so knowing the this was not going to be a solo journey.  Like most things in life, the better your support team, network or cheer squad, the better your chances of success.  From the logistics and "concrete" end of things to the emotional and morale boosting side, your team takes things off your plate so you can focus on what the priority is.  When you are at your lowest point, feeling like you can't go on, your team is there to lift you up and give you energy and inspiration when you had nothing left. We knew that. It only made sense.  But we never truly understood or grasped the concept in it's entirety or magnitude.  Until we experienced it. On any journey like this, Jackie is going to have highs and lows, good days and not so goo...

Sunshine and Rainbows Some days we get sunshine, others rain.  We can't have rainbows without rain. The dark and dreary days contrast the bright and sunny ones.  They are a Yin and Yang of each other.  To appreciate the sunshine and rainbows, we need to endure a little rain here and there, maybe the occasional storm. In an effort to keep this blog true and honest to it's intent, Jackie and I have committed to showing the rough days as well as the good.  To those reading this that may be embarking on a similar journey, remember, this is Jackie's experience.  Yours may be similar or it may be completely different, but everyone will have good days and rough days.  By the evening on Day 0 (transplant day), Jackie developed severe nausea and vomiting and spiked a fairly high fever.  I cannot describe what that is like, but I would imagine it would be similar to the worst flu you've ever had and then much worse.    Fortunately, Jackie's team of nur...

  May The Fourth Be With You It is day 0.  It is transplant day.  It is May the fourth. WOAH!  Didn't see that coming did you?  Just like a Jedi, Jackie is a warrior in her own right.  Although she has no light saber, she is a master at Jedi mind games.  No, that's not a typo.  If you didn't get that innuendo, you have some movies to watch.  Her transplant day or second birthday they call it here, is absolutely fitting to be on May the Fourth. Chemo was finished on Monday and Jackie received two doses of Total Body Irradiation (TBI) on Tuesday along with another dose of the ATG.  Today, she received her final dose of AGT early in the morning.  To put it simply, Jackie's bone marrow has stop working like it should.  It is not producing the proper amount of cells and has developed scarring within the marrow.  As described previously, the stage she is at is called Myelofibrosis.  If untreated, it will progress into Acute...

  Not Particular to Rabbits Today is day -2 (transplant day is day 0). Jackie has had chemo (Fludarabine and Busulfan) since day -5 (today will be the fifth and final day of chemo).  She also started another medication, Anti-Thymocyte Globulin (ATG) this weekend.  This is used to decrease the chance of Graft vs Host Disease (essentially the body's rejection to the transplant).  ATG works by removing removing T-cells from the immune system.  ATG is created by injecting human T-cells into a rabbit (or horse), and extracting the antibodies. Unfortunately, the downside of this treatment is that it comes with quite the list of possible side effects.  Now everyone who knows Jackie, knows if she is going to do something, she gonna do it all the way.  This weekend was a bit rough for her as she did have a fever, tremors, nausea and vomiting and a loss of appetite. As you can imagine, Jackie was not to particular to the "rabbit drug", however she started to fee...