Sunday, 30 November 2008


Shelley and Dave are married and it was a wonderful week in Punta Cana - sun, sand and family. It was a nice relaxing week for Cor and I. But we all missed Eric and Morgan terribly. I can't wait to plan a family vacation for all of us. A week away and I am fully charged and ready to help Eric through the next transplant. Yes, transplant #2 is scheduled.

Last Wednesday we found out that our wonderful donor has agreed to donate again (marrow, so this means surgery for her/him). I now fully understand the need for anonymity - how could I ever begin to repay this person for their generosity - not just once but twice. To all of you who have been able to join the bone marrow donor registry, please accept my grateful and humble thanks - any of you could be saving someone's life.

So Eric started conditioning chemo on Saturday and the transplant is scheduled for Thursday. This round of chemo will be milder (I guess there is not much to kill off) and will be augmented with Campath. As I understand it (and I haven't talked to the doctors yet), this drug will help to reduce the T cells. I also think this drug will eliminate the need for plasma pharesis (which Eric hated).

He'll also be inpatient for this transplant because he has so recently experienced fevers (no infection found despite a robust series of tests). While the outpatient transplant option is great and I feel that it worked well for Eric in August, I think we are both relieved to be inpatient this time. As well as the recent fevers and the fact that this is a second transplant in 4 months, the winter season is here and a snow or ice storm could make a daily commute to the hospital close to impossible. This combination of risks cannot be ignored or mitigated.

As always, your prayers, positive thoughts and blog comments are truly appreciated and welcome.

Tuesday, 18 November 2008

A Good Weekend

Eric had a good weekend at home. He visited the BMT unit daily for antibiotics and received blood / platelets as necessary. He is back inpatient as of yesterday and a different round of antibiotics has been initiated. With no immune system, the goal is to keep him free from infection and we expect he'll be on some sort of antibiotic until the next transplant.

We certainly appreciate the flexibility that the BMT team has shown, allowing Eric to be home when possible yet quickly re-admitting when required. Next week, the rest of the family will be in the Dominican Republic for Shelley's (Eric's big sister!) wedding. I am so looking forward to the trip and the wedding but I am equally sad that Eric and Morgan will not be travelling with us. Morgan and her family will be Eric's 'home team' while we are gone and of course, the BMT unit will continue to give him the support he needs. Luckily, phones and internet access will keep this Mom connected.

Eric reads the blog and all your comments regularly. Maybe we can convince him to keep it updated next week! As always we appreciate all your support and care and concern. I know that a few special people will comment regularly letting Eric know that they are keeping an eye on him from a distance too.

Friday, 14 November 2008

Surprise! He's Home!

We were very surprised today when the doctor told Eric they would spring him from the confines of the hospital - at least for a while. With his fever gone and everything a bit settled, he is home and will return daily for blood work and IV antibiotics. He'll still need blood and platelets regularly and he is confined to his apartment. If he's out, he has to wear a mask.

The remains of yesterday's extreme reaction to the CT scan dye are still very visible. Because his platelets are low, the swelling and subsequent vomiting caused a flood of petechiae, a couple of black eyes and a burst blood vessel or two in his eyes. He looks like he met up with Rocky in a back alley.

In the meantime, the BMT team is working in the background to firm up plans for another transplant. As Eric's donor is anonymous, OneMatch now has all the information and will work with the donors (we don't know if he will have the same donor) to establish timelines and next steps.

While it is a bit scary to be out of the hospital after this roller coaster of a week, at least Eric can be comfortable at home and we have the full support of the BMT group again should issues arise.

Thursday, 13 November 2008

Not a Good Day

Eric had a scheduled CT scan today (his 90 day scan was past due). He's had dozens of these and they are not a big deal. Of all days, today he had an allergic reaction to the contrast dye. Just not what he needed on top of everything else.

He's feeling a bit better this evening, but his face is still swollen and he has quite a rash. And the high doses of benedryl they gave him made him both restless and sleepy - ugh...

On a brighter note, the social worker swung by for a visit and she has some tricks up her sleeve to help make this hospital stay more tolerable.

That's it for tonight. Thanks again for all your prayers and positive thoughts.

Wednesday, 12 November 2008

Empty Marrow

We got the news we expected today. Eric's bone marrow biopsy shows empty marrow. There are no cells there to make new blood cells. Why? We don't know yet and we may never know... Sometimes it's viral and sometimes it's an obvious host rejection. Most of the time, the doctors do not find the cause.

So What's Next?

Although 'the plan' isn't in place yet, Eric will receive another infusion of donor cells. Yes, he will also need more chemo (not sure yet what the chemo will be killing...) Basically it's another transplant.

We have suspected this for the last couple of weeks so I think we are all in the 'let's do it' mode already.

Eric is feeling pretty good. The fever has not returned so hopefully the antibiotics will keep it at bay. Today they moved him back to the BMT unit, so he's set up in a nice private room with all the best nurses and the special menus.

The human spirit continues to amaze me - I am in awe of what we can do when we have to. But really! Eric and Morgan and all of us are plenty strong. We really don't need to keep proving it.

Tuesday, 11 November 2008

Feeling Better But Waiting for Answers

Eric is feeling better today and the high fever (it hit 38.9 C last night) seems to have disappeared. This afternoon his temp was normal and despite his lack of appetite, he was happy to share a bag a chips with me. He's actually looking pretty good today and his sense of humour remains intact!

So, just to recap what's going on.... Eric had a full ablative allo transplant on August 7/08. He engrafted without serious complication and had even changed to his donor's blood type (he went from O neg > A neg). He maintained good RBC, WBC and platelet counts until mid-October. Since then all his counts have dropped. While a graft rejection is the first suspect, it is now clear that there is something destroying his blood cells (and, who knows? graft failure may also be an issue). We are currently waiting on bone marrow biopsy results to help the team determine what's going on and what we need to do to stop it.

So, at this point he is dependent on transfusions of blood and platelets and will be on IV antibiotics to kill off any opportunistic infection that may have caused the high fever.

Today was a stat holiday for most of Canada so few test results were expected. Tomorrow, we do hope that the docs will have a better view into the state of his bone marrow and start devising a solution.

But tonight there is a Sens game on and Eric's main concern today was that the TV guy would get his television turned on so that he wouldn't miss the game. I guess the TV guy was in a good mood today - he turned on the feed even without grabbing his horrendous weekly fee (cash only please) in advance....

Wondering what you can do to help? Obviously, those of you who can give blood, please do so. Other than that, prayers, good vibes, positive thoughts are all needed and welcome. For the Hodgkins folks who are always reading and so well educated in this crappy disease and its treatments, please forward any studies or research you may come across regarding graft failure, hemolytic anemia and pancytopenia.

Oh and for all you Aunts and Uncles, the TV guy prefers cash ;))))

Back In The Hospital

Just a quick update that Eric was admitted last night with a fever. Not sure what the source of infection is yet - they are running the standard blood cultures and xrays and started him on IV antibiotics right away.

Will post again when we know more.

Friday, 7 November 2008

More Blood and a Bone Marrow Biopsy

It was a long day in the hospital yesterday getting transfusions of red blood cells and platelets. To mix things up a bit, they added a bone marrow biopsy in the middle of the day too.

Eric takes it all in stride, but a bone marrow biopsy has to be one of the most painful procedures there is.... We knew that it had to be done to get to the bottom of this issue. The sooner they find out why he cannot hold onto blood counts, the faster they can figure out what to do about it.

I am not impressed with the blood bank. In the middle of the day, they decided they needed to do another type and cross before he could get another unit of blood (anyone know why? no...). The blood finally arrives and as the nurses check the blood, they read out o+ I jump on that and say that he can't have O+ blood. One of the nurses says, oh maybe they are starting to give him his donor's type. So much wrong with this statement.... First they have been giving him his donor's type for weeks. His chart in front of her clearly states his previous blood type (O-) and his donor type (A-).... Where the heck did O+ come from? She called the blood bank and insisted they recheck (I think she saw me give her 'the look' - my kids all know 'the look'). Another wait and a unit of O- appeared. I know mistakes happen. And there are a multitude of processes to check and double check. Yesterday too many people were too busy and all those checks and processes failed to catch this error. When you are in the hospital - pay attention and ask questions. I know that some of the nurses and doctors just think I am a pain in the ass -- well being a PITA payed off yesterday.

As always, your prayers, positive vibes and good thoughts are all appreciated!

Thursday, 6 November 2008

For My U.S. Readers....

Become a Donor

Join the Registry today! In honor of Marrow Awareness month, Otsuka America Pharmaceutical, Inc., has provided an unrestricted grant to cover the cost of tissue-typing tests for potential donors who join online.

Click here to sign up online today.

Remember, if you are in Canada, you can always join for free.

In Canada, click here to sign up online today

A few minutes can save a life..... thank you.

Tuesday, 4 November 2008

Waiting... but stable

We are still waiting on the results of chimerism tests that will give us a better view into the status of Eric's graft. The good news today is that his WBC inched up just a tad last week. While no where near normal, the fact that this count has risen on its own (without growth factors) is good news to us. His marrow is making some cells and his health is otherwise good.

He continues to have regular blood testing and is scheduled for more red blood cells and platelets to keep him stable. If you can give blood, now is the time to do so - supplies are down all over and Eric (and many others) will be needing blood in the coming weeks.

As far as drugs go, his tracrolimus has been increased and his septra discontinued. Septra is known to decrease platelets so he will be scheduled to receive Pentamadine. Pentamadine is an inhaled antibiotic that Eric will receive monthly as a prophalactic treatment for PCP, a very serious opportunistic pnuemonia.

Scans are upcoming too. This will be the first set of scans since his transplant and we are certainly hoping to see good results. More to come as the date is confirmed.

A shout out to Paul.... Paul is the owner/manager of the Subway (Carlingwood) that Eric worked at prior to his relapse. Paul is one of those everyday heroes who has kept in touch with Eric. Tonight he's treating Eric to a hockey game -- and trust me... nothing makes him happier than having a chance to see his team play. For any of you wanting to do a little something for Eric - Sens tickets ALWAYS fit! And for those of you in Ottawa, stop by the Subway in Carlingwood and support Paul and his team.