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MS updates!!!

DAY 100!!!!

Day 100!!!! We made it. Wow!! What a trip. Congratulations!!! Time to celebrate!!!



In all reality, day 100 is a big deal. This is the point where the effects of the chemotherapy begin to diminish. Allison’s appetite should begin to return and her hair is starting to regrow. Her nausea should begin to affect her less and less and she should begin to have a little more energy in the days.   Most importantly, this is when her immune system will have started to rebuild itself. 

Day 99 saw Allison with more nausea and fatigue than we have seen since day 10. It was a bad day. One of the worst in a while.
But that is okay. Day 100 is a general indicator. They explained to us that 2 years was the reasonable healing time. 730 days make up two years and we are at day 100. We knew not to expect miracles. At our last appointment Allison’s bloodwork shows progress with her immune system that is completely as it should be. Her monthly transfusion of immunoglobulin will help her to fight some things off while her system rebuilds itself. The immune system is the key part now. As it does regrow her bone marrow the expectation is that it will “reset” her immune system without the MS cells. She will always have MS, but the attacks will cease and the disease will be much more manageable. 

We couldn’t have done this without all of you and for that we do celebrate on day 100. Your kindness, donations, support and friendship had kept us afloat through this time and continues to help us every day. We are far from finished this journey but we are sort of “out of the woods.” From here is it a lot of rest and rebuilding. 

Thanks

BTW - This is Dr.Atkins with Allison on our last visit to Ottawa.  He is one of the leads for this treatment and we could not have been under better care.


To wear or not to wear... underwear that is

It has been some time since we have updated you all on our progress. Allison is doing well, slowly. And we knew it would be a slow recovery going in. Today is day 41 of the 100 day bubble. Let me clarify. Allison is not in a plastic bubble. It is a term used to refer to the time when Allison’s body is beginning to regrow bone marrow and start to develop an immune system.  During this time she is not really allowed to leave the apartment or be exposed to people and germs. It will be two years before everything is “normal” again and during this time we have to be cautious to germs and virus. 

41 days added to the 30 days in hospital puts Allison at day 70+ of almost the exact daily routine. There is only so much reading and Netflix one can endure. 

This leads me to today’s blog inspired by a conversation between Allison and I during our time passing the hours.

UNDERWEAR

I’ve had a back and forth relationship with this garment for most of my life. Mostly I’m comfortable without, but having some time on my hands I decided to see what is going on in the world of mens underwear these days. I could not believe what I’ve been missing out on. 

But what the hell is this...

First off underwear prices have gone up significantly. The days of $12.99 for a four pack of Fruit Of The Loom are no longer the usual. Crazy new materials and pouch and double pouch designs are all the rage. And prices range from $20/$70 a pair. 

I spent part of the day researching and found that there are several choices. Some of which I was aware of and some new to me. Boxers. Boxer briefs. Briefs. Jockstrap. Trunks and thongs. As well a few that I cannot identify. 

And as for design... the pouch thing is totally new to me. Double pouch is fascinating and I have to admit, I am intrigued. 

        

All in all, things in Ottawa are going well. Might be losing my mind a bit but... par for the course. 

Hope you are all having a great summer.

Into the real world and then back down the Rabbit Hole///

Back In The Real World


I don’t have the words to express how tonight’s show at The Horseshoe Tavern made me feel. Some of my best friends, band mates, musical colleagues, business partners, and my daughters, got together with a huge group of people who have enjoyed music with us over the years. Sometimes it is important to sit back for a moment and really look at what is happening in front of me. Thank you all so much. I’m going to have a glass of milk and sleep... The Watchmen, Skydiggers, Holly McNarland, Oh Susanna, The Pursuit of Happiness, Lindy Vopnfjörð, See Spot Run, Daniel Greaves, The Young Novelists, Caitlyn and Cassidy Tizzard and Music For Goats.


A Big Day For Allison

Thursday was the big day for Allison. Her aunt and cousin Michelle had come to Ottawa to help out during my absence. And one of the biggest things on their list was transporting Allison back to the apartment after a month in a hospital bed. We had a lot of anxiety about me not being there for this event, however Claire and Michelle did a great job.

When I called from Edmonton I was so pleased to hear Allison’s voice. I could hear her smile as she told me how happy she was to be back in the me temporary home away from home. There is something that happens when you are hospitalized for a length of time. I’ve described it as the “Groundhog Day” experience. However it is more than that. It is like a bunch of mini days every day. Sleep gets disturbed every four hours as the nurses take vitals and administer meds. Noises from around the ward and a general sense of losing time surround you. Needless to say I was overjoyed to see her out.


Part Four - on The Road Again

Edmonton and Thompson were fun shows. Being out of the routine for four days has done me a world of good. I feel like I am returning to ottawa today with a great perspective. I feel alive again and the anxiety from last week has passed. Simply put, recent battles had worn me down, but adrenaline had kept me going. Getting away showed me how worn out I was. Also time with music and great friends recharged my battery and now I can return to the hard work in much better form. I owe a lot of that to you.




THANY YOU...

Back out of the rabbit hole... strange old world

It is hard to describe. There is a heavy anxiety about going back out into the real world tomorrow. It has been a few months of straight head down focus on Allison, her illness and this crazy rollercoaster we have been riding. The short of it, is that Allison is doing great. Her numbers are coming up (WBC, Platelets, Hemoglobin etc) which is all a sign that things are moving forward as hoped. She is eating and although not putting back on weight yet, she has stopped losing weight and that is good. We are on the way back...

But how do I get back?

I know it might sound silly, however breaking the “Groundhog Day” routine that I have established here in Ottawa seems more difficult than I had imagined. Tomorrow will be the first morning that I won’t get up and drive to my fave bagel shop and then to the hospital for the day. Almost a month has passed since this routine began. Wake, drive, park, go into hospital, help Allison with her daily living, monitor drugs, track effects, monitor pain, track ups and downs, feed, wash, repeat. And I have done this willingly and without reluctance, as weird as it sounds I’ve enjoyed this process and managed to deal with most of the negative with more grace than I’d imagined. Only recently am I starting to see how much mental and emotional energy this requires.

And now...

Allison’s aunt and cousin have arrived. Tomorrow morning I wake and get on the first of eight flights that I will take over the next five days. I will play shows with the Watchmen starting with the Toronto benefit tomorrow night.

I have put on several multi band shows before. As many as 30 bands in a night - and they have all run without a hitch. I guess it is my mental state combined with the social bubble I’ve been living in, but I can’t seem to get my head around everything. All the bands are set, the backline is ordered, the crew are arranged, my gear is all set - but damn I am out of sorts.

Allison gets released from the hospital on Thursday to return to the apartment. There will still be much monitoring with daily and then weekly into monthly visits. Part of me feels like I’ve just run a marathon but don’t get to cross the finish line. I know Allison is in good hands - I guess I’m just conditioned to be the one carrying the weight.

This week I leave my wife in the capable hands of others while I get back into the world to come out and play music for and with you all. Baby steps for her and baby steps for me. Love you all and look forward to seeing you on the road.

Breakthrough Day

Breakthrough day!!! Day Ten Post Transplant - It was expected that somewhere around day 12 to 14 we would see some numbers begin to show for Allison’s White Blood Cell and Neutrophil count. Up to this point Allison’s body is in a state of continuing damage (chemo and other therapies) with no cells to help heal. 

Well today Allison’s count started sprouting up. WBC at 1.3 and Neutrophils at 1.1. These are low numbers, but it does indicate that the transplant has taken hold and is starting to work. From here Allison’s body can begin repairing itself. Long road still ahead. We are not out of the woods, but at least we have the map and a compass.

Hour by Hour, Day by Day

So we are at day 8 - post transplant. The effects of the chemotherapy are still developing and during this time it is extra tough on Allison as she has no immune system to help heal the damage that is happening. 

She has developed significant sores in her mouth and on her tongue and throat. No longer able to talk she has resorted to using a white board to communicate. It is quiet in here. If it wasn’t for the circumstances I’d be tempted to make a husband and wife silence joke - but no, instead I’ll just leave it as a vague reference. 

If I’m not looking at her she knocks on the board - nothing annoying there. Lol. 

We are keeping in good spirits and taking things day by day. We have stopped asking what to expect and how long things will last. It has sunk in that during this time it really is “hour by hour and day by day.” With no immune system there exist many possible turns in the road. Allison is getting some Immuno-Globulin ( sp?) currently and later today is up for another platelet transfusion. 

There is no way to know what the next 100 days will bring. We have to move with the punches so to speak. Luckily our sense of humour is granting us a good armour.

For those who know Allison well, you know that she likes colours and brightness. For her day count I created some kindergarten style numbers. Hard to tell but they are sparkly! Close but not good enough. So Allison ordered on Amazon a package of number flashcards to 100.

Our neurologist, Dr.Rush has been absolutely incredible.  Last week she arrived early in the morning with three tubs of Sorbet for Allison.  Comfort food is a huge bonus when in this state.  As well, yesterday she brought one of her prized graduates by to meet Allison and give some words of encouragement.  Two years after her transplant she is as alive as ever.  Living a busy life full of helping out others going through the same experience.  The main message which Allison is holding on to is that although we are not sure how much of the current MS damage can be healed - this transplant puts us in a position where we are no longer living in fear of attacks and further damage.

Today Allison got up for the first few steps.  Lots of work to do this but as they say - baby steps!!!

Post Transplant Video - Click for video

 

Pills for the Pills and more pills for the other pills...

We got pills for the pills and more pills for the other pills…. and so it goes here in Room 5216 (don’t drop in, they wont let you through the gate).

 

 

After several weeks of tampering with Allison’s immune system here is where we stand.  She has been in bed in the hospital now for 14 days and during this time her mobility has been almost nil.  Her immune system today is at zero.  Doctors believe we should start platelet and blood transfusions in the next day or so.  Now is the time for constant monitoring and managing the side effects of all the treatment.  This part of the process is expected to continue for another 8 weeks.  The long laundry list of possible complications is an area which we avoid dwelling on.

 

Chemo Round One - Check

Filgrastim to stimulate Bone Marrow to produce stem cells - Check

Harvesting of Stem Cells - Check

Anti-Seizure Treatment - Check

Chemo Round Two-Five - Check

Chemo Round Six-Nine - Check

ATG antibody treatment - Check

Stem Cell Transplant - Check

 

Assortment of side effects range from headaches, body pain, nerve pain, nausea, stomach issues, double vision, loss of mobility, loss of appetite, water retention, drowsiness and disorientation and a few other things I may have missed.

 

Today is what they refer to as Day Three.  Allison had her transplant on Tuesday which although the high point in the process, it was also a little anti-climactic. 

 

Here is the FB post from day of transplant:

 

So the transplant is complete! We had been told by the doctors that for all the preparation we would find this part a little less exciting than it should be.

     

Two small bags of Allison’s cells arrived in a cryogenic container. They were thawed and administered via IV. Took less than an hour.

 

The one exciting things it that the hospital made the full transition to being paperless this past weekend. It has been interesting to watch the staff adjust to the new computer systems that they now wheel from room to room. Allison’s transplant today was the first on the new system and there was more hubub about the computer integration than the process itself. That added an extra dose of special.

 

All is calmed down here and Allison will rest for the afternoon while her stem cells flow through her body looking for their place in her system.

Settled in for a nice stay in a hospital bed...

Well folks, 

It would be a lie to say we don't have anything to report , however there have been no firetrucks or ambulances in our lives in the last four days.  Allison has settled into the hospital for 8 to 10+ days.  During this time she is receiving a 4 day course of chemo (Busalfin), a day break and then another 4 day course of chemo (Cyclo).  There is also some enzyme treatments which I am not fully up to speed with yet, but when I know I'll share with y'all. For now all I can say is that is is an ATG antibody (grown in rabbits) to clear t cells.

 

The days are long.  Early start and late end with many hours of sitting with Allison to help get through the time.  In all fairness, it is not so bad.  We have a tv and Netflix so we can waste time if we want to. I also am working a bit on some new songs I have been writing and we are keeping our heads down and getting through.

Today the hospital Physiotherapist dropped in to get Allison some exercises for this time when she is laid up and tied to several tubes. This is a good thing as being in bed 24 hours a day can be exhausting and fatiguing - exercise will help for sure.

Here are some words I poached from one of Allison’s recent “close friends” group post.

Hi ladies, I woke up this morning feeling much better. I am settling into the hospital, the nurses here are fantastic. I started my first day of chemo yesterday and it went well. No nausea I just had a headache at night but they were able to give me something and it was gone by the morning. 

The PICC line is wonderful basically it is two permanent tubes that can be used to get blood and put in fluids, chemo etc. without having to be stabbed continuously considering I need bloodwork daily. 

I don’t have any exciting photos to share of me so I will share more of the girls from Cassidy's Prom last week. I must admit I had a bit of a crying meltdown on Friday not being there with her but I know I’m going through this so that I have a long healthy future with them. Yes I’m going to be the proud mom and share lots of photos.

Also I should mention that a visit from good friend Neil last week flew totally under the radar.  Seeing good friends is important and I appreciate him making the drive to spend some time with us.  The visit went sort of like this: lunch, guitar show, dinner, drinks, sleep, hangover, breakfast and goodbye.  Fun times...

  

911- all okay now...

Update. 911 (all is ok now)...

It is 3:09 am and I should be sleeping. I should be sleeping because I need to be up at 6am to take Allison to the hospital to have her PICC line out in place. I should be in bed because it is the middle of the night. Allison should be sleeping soundly beside me, but alas. I just followed the ambulance with my wife inside across town to Ottawa General. 


Allison is stable right now and I am waiting to talk to a doctor. Allison is scheduled to be admitted to hospital for 8-10 days starting Saturday. It appears she may be checking in a little early.

So what’s going on. According to Dr.Ken ( me with my pure speculation / sort of) Allison started a new anti seizure medication on Saturday night. They use this as a proactive defence against the small possibility of seizures during Allison’s chemo. Apparently one of the chemo therapies works inside the brain and crosses easily through the blood brain barrier. This high dose working in this way can trigger seizures in some patients. 

By Tuesday Allison was experiencing some severe negative reactions (dizziness, fatigue, muscle spasticity issues, loss of mobility) so we went to the hospital and they decided to change her meds up. On Thursday (second day new meds) Allison has a bad day. Pretty dark and depressed with a good dose of pain and discomfort. Went to bed around 9pm and at 2:30 woke to go to the bathroom and that’s when things got weird. 


She began slurring and not really making sense. Adding to this the different size pupils, trouble catching her breath, clammy skin, and her feeling like she was falling even though she was sitting still. 

I quickly called 911 and waited for the ambulance folk to arrive. We got her vitals and her blood pressure was pretty low. They decided to take her to hospital and I packed a bag and followed. 
So I sit here st 3:19 and wait. More to come..

It is now 6:15. My alarm just went off to start the day and get Allison to the hospital for 7am. But we are here already. Allison is in bed resting and I am sitting in a chair next to here bed. I think the plan is to get her PICC in as planned and then admit her into hospital a day early. I won’t know for another hour or so - until then ... sit, stare, browse twitter, sit some more ...

Allison returned to the room around 9am. PICC line was in successfully and she was feeling much better. By mid morning a member of the team (hematologist) arrived and cleared Allison for. One of the expected blips in the road and he was confident all will be fine until tomorrow when she gets admitted for 8 days of chemo. 

What a ride!!! 12:19 in the early afternoon and I am heading to bed. Allison is comfortable on the couch. You can tell by the smile in the pic of us leaving the hospital that she is feeling a thousand times better.

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