Tuesday, 21 April 2009

Goodbye PICC!!!

There are bits and pieces of this journey that became tolerable only because the alternative was intolerable.

Since January 2008, Eric has had a PICC line in his arm. It was a Godsend for hundreds of blood draws, countless transfusions, endless bags of fluid and many rounds of chemo. It saved his veins and prevented complications.

But, it meant that Eric had to wrap and tape his arm before every shower, he has not been able to swim, lift or exercise. In the summer, long sleeves don't cover it and people stare - Eric stares back.

That PICC got pulled out today and while it truly is miniscule in the context of the last 18 months, it is a huge victory for Eric.

So, we celebrate another milestone. Today, I am grateful again for our donor, our medical team and the Canadian health care system.

I just read this article posted by Duane on his blog and thought, there but for the grace of God go I...... With Son in Remission, Family Looks for Coverage . I realize that universal medical care is a topic that can cause heated debate amongst some of my American friends. But I am grateful that I can look around my office or neighbourhood and know that everyone is able to get the same remarkable medical care that Eric receives.

And because you've asked.... family portraits turned out awesome! But you will have to wait a bit to see them.

Tuesday, 14 April 2009

No News is Good News!

Not alot to talk about - Eric has moved to visiting the BMT clinic every 2 weeks now - I don't think we have gone this long without seeing a doctor since last June. April did call him to say she wanted to see a blood test at some point to make sure tacro levels remain stable - but that's just a blood test! Other than that, we are down to waiting for eyebrows to grow in and the end of a runny nose (probably no nose hair - eww - things you didn't want to know!).

Eric surprised me last week with the news that he has signed up for the summer semester at university. Of course we are thrilled that he feels well enough to go back to school. When you have been tied to doctors and hospital visits for as long as Eric has, even school in summer sounds like a welcome break.

Family portrait scheduled for next weekend so maybe I'll have some cool pics to share then.

In the meantime, best vibes, positive thoughts and prayers to all fighting this crappy disease. Hoping for great scans for Adrienne, continued good chemo response to Bekah and a special shout out for a much needed dose of good news to Jake, Jessica and Marsha. Too many people fighting this 'good cancer' for way too long.....

Saturday, 4 April 2009

Mmm Mmm Good....

What a great feeling to see an excited doctor instead of those looks of concern...

Friday's appointment brought more good news with all blood counts increasing, tacro levels stable and potassium finally within a normal range. The balancing act is working! The change in tacro dosage seems to have allowed this graft to take off and do what we have been waiting for! Eric is now back to being a 'normal' Allo BMT patient. After the roller coaster of the last 8 months - that is fabulous news for us.

Morgan - hope you had a fantastic birthday party last night! You deserve it! (and you'll have to give me the goods on Eric's party planning skills...)

Wednesday, 1 April 2009

Stringing Together Good Weeks

Not that long ago, I was writing about having 2 good days in a row. Now that we are seeing good WEEKS in a row, it seems unbelievable. So what is a good week like? Eric still has low blood counts, but they are stable and slowly rising. He has not had Neupogen or Procrit to boost his counts and his last transfusion was about a month ago. A recent chimerism test (looking at the DNA of his blood) shows that he is 96% donor. He has a good appetite and can pretty much do whatever he wants. It feels like nothing short of a miracle considering how he sick he was through the winter.

Interesting situation when Eric went to pick up a prescription on Wednesday. He is covered by Ontario Drug Benefits (comes with ODSP and homecare). Some of his drugs are very expensive (this particular drug is $3000.00/month). Those spendy prescriptions do get an extra layer of approval and that has never been a problem. However, there were delays at the pharmacy on Wednesday. Turns out that the Ontario government (Ontario Drug Benefits) are a little tardy paying their bills! They had not paid their bill with the pharmacy for the last 2 prescriptions so there was a balance of $6000.00 owing in spite of the extra approvals. WOW -- no wonder there are pharmacies who are wary of dealing with Ontario Drug Benefits.

So, I guess they used this latest prescription as a bit of leverage to ensure payment. They are classy though and to ensure that Eric wasn't impacted, they delivered the prescription to his door once they had dealt with the government and it's lagging payments.

And in other news -- Dexter... He just keeps growing! Nothing is safe. Now that the counters need to be cleared (to make sure HE doesn't clear them), he has learned to take things OUT OF THE KITCHEN SINK! And if you notice we frequently wear mismatched socks... well, I refuse to buy more until he stops eating them. Sure glad sandal weather is almost here.