Get Me Outa Here!

Hi Everyone,
Sorry for the lack of updates - it's been a bit of a frustrating week. After Eric was admitted to the inpatient BMT ward last week with a fever, the parainfluenza virus that has been making the rounds at the hospital became a serious concern for several BMT patients. Of course any infection or virus is very serious (and potentially fatal) for those with a compromised immune system. As a result of the virus, the BMT program shut down their outpatient clinics and all transplant patients had to be either inpatient or well enough to be completely discharged to the regular weekly clinic follow up program. This change kept Eric in the hospital to complete his IV antibiotics...

I hate the idea that he is stuck in isolation on a ward where we know patients have come down with this virus. The hospital did a major re-organization of the ward to ensure those who were not struck by the virus had every isolation technique in play to avoid exposure. I am really not sure where those with the virus have gone -- but anyone who had any kind of a cough seems to have been moved - hoping that all are okay. Access to the floor has been severely limited (this is already a tightly controlled environment), additional staff brought in, there are enough masks, gloves, gowns and Purell to sink a ship and the tension permeates the entire floor. You get the picture -- it just hasn't been a very pleasant place to be....

They also gave him a dose of IVIG to provide some passive immunity. He had a nasty reaction to the IVIG but recovered fast. We are very grateful that his original fever never seemed to re-occur and no infection was found. Likewise, we are grateful that he has been able to avoid the parainfluenza virus. But, wow -- will we be glad to see the end of the hospital! Expecting he will be outa there tomorrow.

Other than the hospital frustrations, Eric continues to do well. His blood counts are slowly rising (counts rise more slowly when marrow is used rather than peripheral stem cells) and the musositis has resolved itself. Nothing tastes good but he eats and drinks through the day. Tough to get enough calories in (especially with hospital food). It really paid off for him to be in such good shape with extra weight going into the transplant. Waiting to do this transplant was a good plan. I know that this would have been much harder last spring when he was still recuperating from chemo regimens and that infection.

That's it, that's all!

What Would You Do If You Weren't Afraid?

This question was raised twice today and it got me thinking about risk taking and how risk can lead to growth and even excellence....

We are in the middle of the largest risk I personally can imagine. Yet Eric is doing great. He's doing great because many people before him were willing to take the risk of a bone marrow transplant. His doctor was willing to take the risk of performing bone marrow transplants 30 YEARS AGO. His donor took the risk of joining the bone marrow registry and then undergoing surgery to donate bone marrow for a stranger.

In my line of work, risk management is a daily routine. While a first reaction risk is often negative, many many risks have positive, even exciting outcomes because the risk is understood and managed. And where would our world be if we were all afraid to do what seems risky or impossible? I thank all who have faced a fear, taken a risk, designed strategies for risk management and learned how to make the impossible... possible.

From Wikipedia...

Arete (Greek: ἀρετή; pronounced /ˈærəteɪ/ in English), in its basic sense, means "goodness", "excellence" or "virtue" of any kind. In its earliest appearance in Greek, this notion of excellence was bound up with the notion of the fulfillment of purpose or function; the act of living up to one's full potential.

I firmly believe that this transplant, and its accompanying risk, gives Eric the opportunity to live up to his full potential.

I enjoyed this video - hope you do too...

Eric's Blood Counts Today

WBC 0.7
Hgb 106
Platelets 47

Hgb and Platelets have stayed stable without transfusions since Sunday! Yeah!!!!

We Like Boring!

It's been a boring few days -- and that is what everyone hopes for in the midst of a bone marrow transplant.

Eric remains in the hospital on round the clock IV antibiotics and the fever has not returned since Friday - yeah! His blood counts continue to rise and those new neutrophils are helping the sore mouth/throat/gut/bum heal. He is able to eat most foods althought nothing tastes good. His taste buds are gone as a result of the mucositis. They'll eventually be back but it makes for bland food for a while.

As long as things continue on this path, I expect he'll be back home as soon as the course of round the clock antibiotics is complete.

Thanks again to everyone for the cards, emails and prayers. You are all so kind.

A Little Detour

Well, that little fever that Eric has had all week finally spiked last night and he was admitted to hospital to allow a different IV antibiotic (PIP/TAZ) to be added to his list of meds.

And in good news, his white counts continue to rise (very slooooowly) and he is feeling just a smidgen better. At least his voice is almost back and he is able to swallow small bites of solid food.

I am taking a break and visiting Cor and the poodles in Morrisburg - yes, I am at home! Hopefully Morgan is also getting a good night sleep tonight (she did the ER run last night)and enjoys the Stream Watch program tomorrow.
You have probably all noticed the lovely blonde that is frequently seen with Eric in his pics -- that is Morgan! Morgan is probably the very best medicine that Eric has in his favour -- she and her family have been incredibly supportive and Eric is a very lucky guy to have such a sweetie for a girlfriend.

Saturday's Blood Counts

WBC 0.3
Hgb 79 (2 units today)
Platelets 27 (1 unit of single donor platelets today)

Day + 13 WBC = 0.2!!

Yeah!!!! It's 13 days post transplant and today we saw the white blood count nudge up from 0.1 to 0.2! This is a good sign and is as early as we could have possibly hoped for.

White blood cells are the first cells to show up following transplant and we hope they quickly get to work to start to relieve Eric's mucositis .

Still a long path ahead, but this is certainly a glimmer of sunshine at the end of that tunnel!

Thursday's Blood Counts Day 13

WBC 0.2
Hgb 72 (got 2 units of RBCs today)
Platelets 42

edited.... because apparently I am challenged in counting to Day 13 and establishing the correct day of the week! Be glad I am not trying to manage projects while we manage this BMT!

Platelets Work Like Magic

Until recently I didn't think much about platelets - who does? I knew that they were a component of my blood and that they were responsible for clotting the blood. When I cut myself it didn't occur to me that my platelets would fail -- everytime, they rose to the challenge and the cut became a scab. My kids all fell off bikes, scraped their knees and elbows and played sports - every cut, scrape and nosebleed healed miraculously.

During a bone marrow transplant, platelet counts drop to critical levels. A normal count is 150–400 x 109/L. Yesterday morning Eric's platelets were 18. He has a standing order for platelet transfusion when they hit 10. So when he had a nosebleed late last night, we were very concerned. And sure enough, there were not enough platelets circulating, the nosebleed continued and we had to head in to the hospital for a unit of platelets. Here's where it works like magic... Within 15 minutes of the start of the platelet infusion, that nasty (yes, as bad as you imagine) noseblood suddenly stopped. The donated platelets had found their way to the bleed and went to work. Eric was back home and in bed within a couple of hours.

And there is more. As a transplant patient, Eric must receive single donor platelets. That means that a wonderful person spent a couple of hours hooked up to the apherisis machine sometime within the last 5 days and donated platelets. I understand that most major blood donation centers have the ability to collect platelet donations -- please consider helping this magic continue for everyone who needs blood products.

Did you know? (I didn't!)
- A bone marrow transplant patient may need up to 120 units of platelets.
- Your body will replace the donated platelets within 72 hours.
- If you meet the requirements for donating blood, you probably can give platelets.
- Because platelets can be stored for only five days, the need for platelet donations is vast and continuous.

Monday's (Day 10) Blood Counts
WBC 0.1 (they don't report anything lower than this)
Hgb 89 / 81 after nosebleed and platelets
Platelets 18 / 34 after platelet transfusion

A Long Day

Today started with a 38C fever at 3am.... Into to the hospital to start a broad spectrum antibiotic and blood cultures. Of course once there, the fever had disappeared. During the day he had a couple of more units of blood (in addition to 2 units of RBCs and one of platelets on Saturday). More antibiotics before we headed for home around noon. We both grabbed a pillow and a couch and napped and watched TV all afternoon.

The fever hovers between 37 - 38 and no signs of infection that anyone can find. So we'll continue with daily IV antibiotics and monitor as always. Other than a very sore mouth and throat, he's hanging in there - what a tough kid! A Fentanyl patch and some morphine helps somewhat - at least he can sleep and can still swallow pills, sip Boost, milkshakes, etc. Not a chance he'll be eating a hamburger today!

He's losing his hair again so shaved his head -- but is very itchy everywhere. I guess that is the hair dying and falling out.

Today's Counts

WBC 0.1
Hgb 79
Platelets 29

Change of Plans....

As there is a respiratory virus currently circulating in the hospital, the decision was made today to have Eric remain as an outpatient. Rationale being that, Eric is doing fine at home and increasing the time in the hospital increases the risk of catching this virus.

So he will continue on an outpatient basis and will be in isolation while in the day care unit.

Of course, all the outpatient guidelines regarding fever etc. remain in play. If he can't eat/drink or if he has a fever, he will be admitted.

We really didn't need any additional stress...

Today's blood counts:

WBC 0.2
HgB 82
platelets 20

Expecting a couple of units of RBCs and platelets tomorrow.

Amazed!

We continue to be amazed at how well Eric is doing. His counts are nearing rock bottom and his mouth and throat are more sore each day but he continues to eat and drink well and feels "okay".

While he would be comfortable remaining at home, the BMT team will admit him tomorrow so that they can keep very close tabs on him while he is neutropenic in case of fever/infection. This is not unexpected or unusual. If anything, it is unusual that he is still at home and doing well this far into the transplant schedule.

Thanks again to all for the calls, cards, emails and blog comments. It is appreciated more than you know.

Day +4????

Yes, that's right -- we have lost a day... No, no time travel! Because the transplant was late in the day on the Thursday, they count the Friday as Day 0. That means that today was day +4.

Eric is still visiting the outpatient BMT clinic daily - he hasn't felt the need to move to inpatient care yet. They check blood counts (still dropping each day) and give him fluids. Yesterday he also had another dose of methotrexate (one of the strategies to reduce GvHD). Sometimes there are changes in meds based on blood results or symptoms. A new drug to help with stomach issues was added today. Eric is feeling the effects - he has a sore mouth and is losing his taste buds. Nausea comes and goes.


He is still feeling well enough to request Harvey's for dinner tonight and go out for a walk with Morgan this evening.





We continue to focus on the current day. A transplant is a long process and while I like to know what to expect next, I stay away from guessing timelines or setting unrealistic expectations. Today was a good day and I know that we have the right teams aligned to keep the process moving in the right direction.

Have a great day everyone and give yourself a pat on the back if you are a blood donor!

Day +3

Hello! Everything seems to be going as expected. Eric is very tired (actually we are both napping alot). Yesterday wasn't a great day. He woke up with a headache that just wouldn't go away. Finally after a second dose of morphine and a good sleep, the headache and nausea subsided enough to have a bowl of soup and watch some of the Olympics.

Today the headache is gone and the nausea is a back under control. He had his first dose of methotrexate yesterday and will have another tomorrow.

Still outpatient and that has been really nice. Much nicer to be in your own bed and have the right snacks close by. The morning in the outpatient area is just long enough to get some fluid (staying ahead of any potential hydration issues), blood tests and review Eric's current status and identify anything that will help him feel better.

The hardest days are yet to come - but we are going in the right direction, so we'll keep putting one foot in front of the other.

This can be a very lonely and scary journey. Thanks to all of you who have left comments of support and been in touch. It really means alot to both Eric and myself.

Kathy

Day + 1

Without further ado or fanfare, the cells arrived as expected and were transfused by 6pm last night. Eric passed the time playing video games and having dinner.

Now we watch carefully and wait. Wait for Eric's old cells to die out (white counts and platelets are dropping daily) and then wait for the new marrow to begin to produce cells. This timeframe is one of the key risk points and all will carefully monitor blood counts, temperature, overall wellbeing, etc. Part of the reason that Eric will remain outpatient as long as possible is to reduce exposure to the serious germs in hospitals. Surprisingly, his doctors are far more concerned about the normal bateria in his body and the hospital environment than anything he will run into at home or outside. Of course, if you are sick -- have a cough, sore throat, cold -- STAY AWAY!!

So What Will Happen?

Tomorrow is transplant day. Eric is still well enough to be an outpatient so we are to be at the hospital for 9 tomorrow morning. He will have another session of plasma exchange to further lower the level of A antibodies in his blood. Today he went from 32 to 8 - the target number is 4 -- he should hit that tomorrow. During the plasma exchange, Eric's blood is circulated through an apherisis machine (like a centrifuge). The plasma is removed and all other blood components are returned to him with an artificial substance to replace the plasma. This process helps ensure that the A antibodies in his system are reduced so that they will not attempt to fight the donor's A- cells.

He will receive his new marrow sometime after 12 noon (48 hours after his last chemo treatment). No surgery or fancy process as with most transplants. The cells are administered like a blood transfusion; they then make their way to the bone marrow to start the engraftment process. And how long will engraftment take? Everyone is different. We hope that blood tests will show cells in about 3 weeks. Complete engraftment will take months.

The donor is anonymous. We hope that a year from now we will have the pleasure of meeting this most generous stranger (if both Eric and the donor wish to open the file). I remain in awe of all who have given such a gift and those who have volunteered to join the bone marrow registry. You have no idea what it means to us.


Interesting bit of info... the marrow will be delivered from the airport to the hospital by the RCMP (Royal Canadian Mounted Police). Apparently the BMT unit treated an RCMP member a while back and at that time, the local force chose to initiate the tradition of delivering the marrow. I trust they are using a cruiser and will not be on horseback!

Again, thanks to all for your prayers, positive thoughts and support.

Last Chemo!

Eric finished his last high dose chemo today -- yes, the LAST CHEMO EVER. It started out as a bit of a rough day. I think I saw the nurses retreat to draw straws as Eric arrived carrying a bucket.... yeah... it was a bucket day.

It was a very long day but he's feeling much better tonight. We went for a walk to the beach and stopped at the Dairy Queen on the way back.

Day -4

Six down and two more chemos to go.... Eric is coping extremely well with both the Fludarabine and Busulfan chemo drugs. Busulfan is definitely harder and has several side effects for which he is taking additional medications. By the time he takes the anti-nausea meds, the anti-seizure meds, pills to protect his liver and another to protect his kidneys (AND the chemo), he just feels kinda blah....

By Tuesday the days will get longer. As chemo completes, he will have plasmapharesis to help prepare his system for his donor marrow (the plan is to remove his A antibodies as the donor is an A- blood type)He will also start ATG to help prevent or lessen GVHD (Graft vs Host Disease).

As always, positive thoughts and prayers most welcome.

Day -6

Eric had his fourth and final infusion of Fludarabine this morning. All is well -- these infusions are fast and he has been fortunate to have no side effects.

Tomorrow he starts the Busulfan as well as several drugs to help counter-act the more serious side effects of this chemo. The Busulfan is given over 3 hours so we will have longer stays in the Day Unit as well.

This week he has also had a chance to meet with the supporting members of the BMT team including the Pharmacist (Harry and Eric have become good friends!), the dietician and the social worker. While meeting with these people, I realized what a blessing it was that we could not proceed to a transplant earlier in the year. During this waiting period, Eric has been able to improve his health, figure out disability insurance and stabilize his finances. Through improved nutrition, he has put on a much needed 25 pounds, then added a few more so that he is entering his SCT with some padding! An Allo transplant is very hard on the body and mind. We are glad that Eric is in good shape to take on this challenge.