Wednesday, May 19, 2010

Blake's Health Update 2010/05/19

UPDATE: (10:30pm)
After I published this blog post, I checked some messages, and one of them is from a new friend whose husband (Will) has just started receiving Remicade (the miracle medicine Blake received last fall & winter) . First three days were great, then some problems set in for Will..... severe migraines, muscle/joint pain, nausea and hives. His wife is not sure if he's reacting to the Remicade or if it's because of a previous cold he had just before his treatment. (You cannot receive Remicade if you have signs of any fever, cold, etc.). I told his wife that I would ask my friends, many who are dedicated prayer warriors, to pray for Will. Would you please do this for me, folks? Thanks a bunch).


Today Blake and I travelled to Kingston's Hotel Dieu Hospital to receive his first dose of Methotrexate. (More info on the meds in a bit).

I was listening to UCB Canada 102.3 in the vehicle and enjoying the Christian music as we sped drove down the 401. Although I am appreciating more of the music that they play these days, I must confess that I really do wish more hymns were played.

And then, lo and behold, a "new" song came on, and in the bridge of the song they started singing the following words:

Crown him with many crowns,
the Lamb upon his throne,
Hark! how the heavenly anthem drowns
all music but its own.
Awake, my soul, and sing
of him who died for thee,
and hail him as thy matchless King
through all eternity.

What a bursting thrill for my soul! A hymn! I loved it! The bridge of the song was only this one verse, but what a blessing it was to me, all the way down to my boots! Well, ok, I was actually wearing sandals, but you get the idea.

All I could think of was, "Man, I wish my kids heard more of these good ol' hymns!!!!!!" I cannot believe how many of them I can sing along to without having the words in front of me. I love hymns because, (and I may have written this before), they are really the "meat and potatoes", aren't they? (Uh oh, I'm gonna hear it now from the vegetarians out there, as well as those folks who watch their starch intake! haha)

So I just wanted to share the verse of that hymn with you. It's not about us, it's about our Lord. We were put here for Him. Awake, my soul, and sing to the Almighty King!

Mmm-hmmm. Good stuff.

OK, on to information about Blake.

We received our first dose of Methotrexate today around 1:30pm. They kept us until around 2pm, just to ensure he didn't have any immediate reactions to the meds. He seems really tired tonight, so I'm not sure if he's just exhausted because I yanked him out of bed before 10am (that's right... 10am was an EARLY morning for him!) or if it's because the meds are knocking him out a bit.

The nurse said she was talking to one recipient of Methotrexate who reported that she was really tired the next day, but fine after that. I guess everyone experiences different things. Hopefully Blake won't experience anything other than healing!!!! A friend of ours got a severe reaction after her third dose, so I guess anything can happen at any time; but I'll try and remain positive!

Wanna hear something absolutely ridiculous? Of course you do.

Well, you all know that the Remicade (which the government won't pay for until we try the Methotrexate) is apparently $18,000 per year (approx.) if the government pays for it. (It would be over $26,000 per year if WE pay for it, because we have to pay for the use of the clinic and for the nurse to administer it, etc. [ya, I know... insert eye-rolling here]). The Methotrexate is no where near that cost. A three-month supply (that's receiving one injection per week) would be between $250 & $300. When you buy the meds, the box for one month contains four little tiny bottles. However, only HALF of that bottle is used for one injection. And guess what? They don't make the doses in smaller bottles, so guess what happens to the other half of the bottle after the nurse injects the first half into Blake?

Yup. That's right. Right into the ol' gar-bage-i-o. So basically we are paying for twice the amount of medicine we need! How absolutely sad is that!!!!! And most patients receive that same dosage. So anyone getting it by injection is having to throw out the other half!!! Makes you wanna find a Methotrexate buddy and share a bottle or two and split the cost!

Now here's the other thing. Blake applied for, and was accepted by, The Trillium Foundation. For those of you who are not familiar with the organization, they will pay for your drugs in Ontario. So far, some of our drugs haven't been covered, and some have been partially covered. Once Blake meets his deductible each quarter, there is only supposed to be a $2 fee for his meds. Now get this: Methotrexate, which is apparently older than the hills, is not covered when it's by injection.... it's only covered if taken by pill orally! [insert Oh Brother! and shaking of the head here].

Go figure.

And Blake can't take it by pill form right now because the body absorbs it better by injection, and that's what Blake needs right now.

Sometimes I feel like I'm dragging around a dead horse!

Oh well. My son is alive. Skinny! but alive. Who am I to complain? There are so many others out there as ill, or more ill, than Blake. I suppose I'm not really complaining... or maybe I am..... but I guess sometimes it's just so frustrating.

We live in Canada. We have alllll these great "benefits" and "plans" to assist those in need. They dangle them in front of us like a carrot and say, "Now just try and come and GET 'EM!!!" Then when you think you've got things in place to help you out, you're told "Sorry! Not covered!" Grrrrr.

OK, enough grumbling. Shifting gears. I'm going back to the beginning of this post and concentrating on that hymn. It's not about me. It's not about Blake. It's about our Lord. Our King. He is still on the throne. He knows Blake's situation. He knew about it before Blake was even born. He loves us. He cares for us. He's given us so much. And what have we done for Him? We fail to praise Him enough, I think.

We should be thanking Him every day before our feet even hit the floor! We need to fall down on our faces before Him and give Him praise and adoration.


CROWN HIM with many crowns, the LAMB upon His throne!

To Him be all glory and majesty, forever and ever......

.....even when you're battling Crohn's & Ulcerative Colitis..... or cancer.... or Alzheimer's..... or liver disease..... or being a paraplegic...... or stroke....... or depression...... or whatever!

Go read Job in the Bible and THEN try and complain.

God doesn't punish us with diseases or trials or sickness. The enemy, Satan, is responsible for that. But God uses those times to draw us closer to Him. He allows those things to happen so we'll rely on HIM, so we are stronger THROUGH HIM; and we are still under the shelter of His wing, in the palm of His hand, we are in His shadow. He goes before us and only asks that we follow Him.

That helps me to keep things in perspective, helps to keep my focus on the One who watches over us every single minute. He is all-knowing and all-loving. He cares for me; He cares for Blake; and He cares for YOU!

Father, our matchless King, thank you for reminding me once again.

Just a reminder.... please remember to pray for Will! Thanks!

1 comment:

S said...

Oh, sister, you continue to be in my prayers! Sorry I've not been here for an update in a few weeks.
I lay your son (or boyfriend ;-P heheh that made me laugh) at the altar of our Saviour and Healer.

Also, I'm obviously NOT a doctor, but have been doing lots of reading and research about fish oil supplements and noticed that it was listed as an effective anti-inflammatory for Crohn's. And I thought of you guys and our Pastor's wife. She has had a terrible flare up with hers and is struggling. I swear I have nothing to gain by this, but our trainer shared this video with us about the benefits: (the video is on the right side). And here is a link to calculate dosage

I just wanted to pass it along to you. As if you need MORE information, right?
Much love and hugs to you, darling.