Wednesday, 31 December 2008

Looking at a better 2009

It has been two steps forward and one step back lately (sometimes even one step forward and two steps back....).

In the good news column, Eric's blood counts are rising dramatically now. This is a good sign for him.

In the not good news column, the pain in his side turned out to be a couple of tiny abscesses on his liver. While not uncommon following a transplant, he didn't need this new bump in the road. It's causing pain and is just one more complication. Fortunately, this type of abscess will respond to a specific antibiotic. And with recovering white counts, he can come off some of the other prophalactic antibiotics.

So it looks like he'll be in the hospital a while longer. He is still not eating so he needs to be on TPN, he needs IV antibiotics and he needs to be inpatient for pain control.

He's been down lately - certainly understandable. He does have his internet access back again (it's a pilot program in the hospital and I guess there is not a process in place to fix it when it doesn't work - took a while to get it back on). He does read his email and blog comments even if he can't always respond. We all appreciate the kind words, prayers and good thoughts. Thank you.

Saturday, 27 December 2008

Day 23

Eric's WBC is still rising slowly - but it is going in the right direction. He's had a few minor issues over the last few days - his PICC line had to be re-adjusted after migrating and coiling up near his heart. This meant that he had to have a traditional IV for his antibiotics etc and his TPN was discontinued for a bit. A final adjustment late yesterday and subsequent xray showed that the line is back where it should be.

He's had a sore belly and will have a CT scan later today to see if anything shows up. Pain meds are keeping any pain under control. We do need to remind him that there are no medals for putting up with pain and that he really will get better quicker when he is 'feelin no pain'.

He's still not eating much of anything. Solid foods seem to upset his stomach. He does drink juices and Ensure or Boost. We'll bring in a Booster Juice later today for a bit of a change.

We had a nice Christmas although very different from other years. We took turns visiting Eric to keep him company and that worked well. We'll definitely plan on another turkey dinner when Eric feels better!

Dexter is keeping us smiling! He's had a steady stream of visitors lately and loves every minute of it. He's just fit into the family wonderfully and is just what we all needed to make us laugh and give us 'Dexter' stories. Morgan and her family came for a visit yesterday and he has definitely added her to his favorite people list. Shelley and Dave were home for Christmas and brought their cat Helix -- let's just say that Dexter has NOT added Helix to his fave lists!

Wednesday, 24 December 2008

Christmas Wishes....

It's a special time of the year when many of us have the opportunity to sit back and appreciate our families and friends and we often take time to reflect on the past year.

My first impression of 2008 is that I will be glad to leave it behind! Then I think of the generosity, kindness and warmth that we have seen while Eric fights this beast called Hodgkins. First and foremost, we are incredibly grateful to a kind stranger who has willingly donated bone marrow to Eric twice. This person is truly special. S/he has given this gift of life willingly and has no expectations of anything in return. Likewise, there are hundreds of strangers who have donated blood and platelets - each of you who has donated blood has given Eric or someone like him a chance to keep fighting. These are gifts like no other and they make the presents wrapped and waiting under the tree pale in comparison. Thank you.

I had only one wish for this Christmas. I want Eric to be healthy - I want this transplant to work. Today his white blood count rose! A WBC of 0.2 is like a miracle. While still a dangerously low white count.... this is twice what he has had for the last couple of months. Finally - a sign of engraftment beginning.

May all of you have a wonderfully peaceful holiday season and a HEALTHY and happy 2009.

Merry Christmas to all... and to all a good night.

Tuesday, 23 December 2008

Day +18

These feel like long days.

There is some increase in neutrophils which is very good news - but it all feels very slow. I think we are all impatient and exhausted.

Physically, Eric is doing what they doctors expect. While they continue to monitor his lungs, no infection has ever been identified and he has not had a fever in some time. Quite amazing when you think of it.

He is getting TPN as of yesterday to give him a boost nutritionally.

And we are all very very happy that Harry is back. Harry is a pharmacist on the team who has always taken a special interest in Eric - he is a very very special man with an exceptional skill set and just an all-round nice guy.

Friday, 19 December 2008

Day +14

Eric's cough got a bit worse on Tuesday so we are back to droplet precautions (masks for all who enter his room and he is confined to his room) and yet another chest xray and CT scan. By yesterday his cough seemed alot better so not sure what's up. They also did a CT scan of his abdomen area as his red blood counts dropped more than expected on Thursday.

Not really alot more to update. We're waiting on blood counts to start to rise.... As the Ottawa team does not use Neupogen to artificially stimulate white cell production after and allo and he had a marrow infusion (rather than stem cells), engraftment is expected to take longer. First signs of higher blood counts are expected sometime between 15- 20 days.

Sunday, 14 December 2008

Day +10

Eric has the strength, patience, persistence and good humour of a saint. The days go on and they are pretty boring, yucky and lonely - yet he justs keep on trucking.

He still sounds like he has a really bad cold - and maybe that is exactly what he has. Multiple CTs and broncoscopies are showing that his lungs are clear (thank goodness) or the myriad of IV antibiotics and anti-fungals are keeping anything from growing. I think his ear and throat are somewhat better - or else the pain meds are doing a better job of keeping the pain in check. He said his ear finally 'popped' yesterday so that must feel better.

Food has become a major issue. Between a sore throat, no appetite and unappealing hospital food that just doesn't want to stay down, he can't get the calories in that he needs. He agreed to try tube feeding over the weekend, but the first time he threw up, the tube came too. His doctors prefer the naso-gastric tube to TPN, but I think for Eric, TPN might be the answer. We'll see what happens over the next few days. Big advantage to an outpatient transplant is that you have more of the foods of your choice 24*7 and Mom is the cook! Some of the nurses are really good to put something new in front of him to sip on several times during the day. Then there are others who should not be allowed in a hospital let alone looking after people. Second big advantage to an out-patient BMT, the out-patient nurses are the best in the hospital - every one of them is simply outstanding.

So this week, we start watching for blood counts to rise. And hope that he starts to feel just a bit better....

Wednesday, 10 December 2008

Day + 6

The days are moving along and boring continues. Although Eric hasn't had a fever in a while, the doctors are still suspicious of his lungs. He has had another chest xray, CT scan and will have a second broncoscopy today. So far nothing definitive is showing up but he does have a sore congested throat. Fortunately, it's not affecting his breathing or causing a fever.

On a brighter note, he did complain today that he wasn't allowed to eat until after the broncoscopy! Considering he has had NO appetite - I am taking this complaint as good news.

I am still snowed in at home. Traffic in Ottawa is absolutely outrageous today with the constant snowfall (2 days now) piling up and the bus drivers on strike. With a bit of luck, the snow may settle down this afternoon and they will be able to get the roads cleared so I can get into the hospital. I hate being stuck here! Glad this is an inpatient transplant this time round.

Sunday, 7 December 2008

Day +3

Not alot of news - which is probably a good thing. Eric is tired and has no appetite - just feeling overall blah....

Although he hasn't had a fever in over a week, the team continues to monitor him carefully for any signs of infection. So far, nothing. A tiny spot on Friday's chest xray won him a CT that he'll have sometime over the weekend when there is an open space in the schedule.

Shelley and Dave's 'at home' reception was last night and it was lovely. The snow did change our plans and Cor and I ended up staying overnight in Belleville. And that ends the months (years?) of wedding planning and weeks of celebrations!

Thanks again for your comments, emails, prayers and warm thoughts as we wait for these cells to do the trick.

Thursday, 4 December 2008

The Biggest Bag O Marrow Ever!

Today was transplant day and that was the biggest bag of cells that anyone had ever seen! Just under 2 litres of marrow! It was alot of fluid for Eric to take in (combined with all the regular IV antibiotics and antifungals) but it's all in there and hopefully lots of stem cells will be ready to set up housekeeping.

The actual transplant is just like a blood transfusion - it is not terribly exciting to watch. Although, I look at that bag of cells with amazement and think of the years of research behind procedures such as a bone marrow transplant. Eric is fine - Morgan arrived with a Booster Juice for him just as I was leaving and they had just watched the wedding video.

Dear donor, I hope you are not too sore following the bone marrow aspiration. Thank you.

Wednesday, 3 December 2008

Day - 1

A bit of a bummer of a day for Eric. Some people should not be nurses... or maybe their strength is just not in helping a young man.... I have to say that 99% of the nurses who have helped Eric have been awesome -- perhaps we are spoiled! Anyway, a quick mention to the nursing supervisor and Eric will get another nurse tomorrow. I am always impressed by quick positive responses.

So, conditioning chemo is finished and it was fairly easy and well tolerated. Today Eric had a session of plasmapherisis to reduce the A antibodies in his system (don't want them to attack the A - cells that he gets tomorrow). It was tough to get veins, but Cheryl was summoned and she had him hooked up in no time. Eric has made it clear that she is the only one who is always successful in finding a vein. I figure he has been poked enough in his life that he only deserves the best. Thank you Cheryl!

Dermatology came in for a consultation today too. He has some spots on his legs that they wanted to look at. An interesting specialty... they seem to travel in pairs and do alot of "hmmm... look at this.." Bottom line is that these spots have been around for a couple of weeks, they haven't changed and they don't bother him. A biopsy would not likely tell them how to treat and it may be risky for him. It was a total non - consult.

Tomorrow is transplant day. The donor will be collected (bone marrow aspiration) in the morning. As with the first transplant, my theory is that the donor is near Ottawa or travels to Ottawa and the bone marrow harvest happens in the Ottawa Hospital. And I ain't telling how I know that! Eric will get the marrow late in the day which means that he will likely have 2 Day 0s. Saturday will be considered Day +1.

I am curious to see if Eric loses his hair again. The chemo drugs he has had do not tend to cause the type of hair loss that most chemo does. This time his hair is growing in quite fine and fair. The last time it grew back, it was very dark and coarse. We'll see - not really a huge issue for him. He's lucky that bald is in and it quite suits him!

And again, thanks for all your warm thoughts and prayers. Truly appreciated.

Tuesday, 2 December 2008

Day - 3

Ugh - didn't really think I'd ever be starting new posts with another countdown...

Day -3 was an uneventful but sleepy day. More Fludarabine and Campath - lots of benedryl to counter some minor reactions to the Campath.

Eric was relieved to hear yesterday that the do not expect he will have the severe mucositis that he had with the first transplant. Because his white counts have been low for a while now, there will not be that sudden drop in counts that leads to the nasty sore mouth, throat and gut. Certainly hope they are right - he deserves even a tiny break.

And finally, just for you, Veronica..... After all, you have been our number 1 fan forever! You know we love your support and messages and I could never ignore a request from you.