PTH 1 -34

At 10 am today, Zach received his 1st injection of the parathyroid hormone that his body does not make.  It is called PTH 1 - 34.  It is a subcutaneous injection that we will be giving him 2x per day.  After practicing on a couple of oranges this afternoon, I gave Zach his 2nd injection at 5:30pm.  Zach didn't cry or fuss at either time.  However, he looked at me after I gave him the injection and asked, "am I better now?" 

Over the past couple of years we've been able to meet some pretty extraordinary kids and NIH is no exception. Zach has made several new friends here and tonight I want to tell you about Sean.  Sean is 8 years old and has a blood disease called CGD.  This is a complicated disease and very difficult to treat.  In fact the only way to improve his quality of life is to have a bone marrow transplant.  Last night at 11pm Sean received his bone marrow transplant.  The transplant itself is relatively easy.  They transplant the new bone marrow thru the central line in his chest.  However, the week before this they give them chemo and radiation.  The kids with CGD do not have cancer.  The reason for the chemo and radiation is to bring them to the brink of death so that their body will accept the new bone marrow from the donor. It is unbelievable.

So here at NIH they throw a Birthday Party the day after you have a bone marrow transplant!  Cake, balloons....the works!
Today Zach and Sean played Star Wars and angry birds, they had a blast.  How can Sean do this?  Because his body isn't really sick yet.  In about a week he will not be able to leave his room.  He will loose all his hair.  He will begin the fight of his life. They will be here for at least 100 days.  If the bone marrow doesn't take....it could kill him.
Sean is from Louisiana and is the oldest of 4 kids.  His dad is a youth pastor and his mom is one of the sweetest most grounded women I have ever met.  Please pray for Sean
love t

We are Here

This is where we are!  Its like a labyrinth of brick.

It is amazing and everyone is very nice.  As usual, Zach has made many friends.

We've found out somethings, however there is still more testing to do.

We are grateful for your love and prayers.

Luv t

We are Here!!!!!

We are here....unbelievable.  We started the admission process at 1pm and then they brought us to the ward.  Then at about 3pm one of the pead's endocrinologists came to do the work up.  Then at 5pm Dr. Winer came to see us.  I didn't expect to see her for a few days.  She asked more questions and we discussed the reasons Zach has NOT  as of yet had the appropriate genetic testing...LOL!  She is calling Genetics in Alberta tomorrow, maybe she will be more convincing then me, haha! Everyone has been gracious and kind.  Zach got to have pizza for supper and they told him he can eat as much yogurt as he wants, so he is pretty happy. 
Tomorrow at 8am he is having a CT scan of his head, neck and kidneys.  They are also starting to do continuous urine collection.  Then on Thursday he will be having several bone density tests.  On Friday they will start the PTH injections.
Thankyou, for your prayers and concern for Zach.  We love and miss you xo

"The Greatest Doctor's in the WORLD!"

In a few hours Zach will be on his way "to see the greatest Doctor's in the world!"  This is a quote from Zach just a few weeks ago.  He is excited to go, but is sad to be away from his siblings....tears.  Jake, Olivia and Davey are all a bit on edge.  They are so close and you can tell that they are worried.  Please continue to keep them in your prayers.
Medically, Zach's calcium levels as of Thursday were actually coming back down, which is good.  Over the past couple of days, Zach has been blessed with many visits from his friends.  They have just hung out with him, it has been wonderful.
As for Perry and myself...we have that 90% excited 10% nervous feeling....or is it the other way around.LOL!    This world holds so many "unknowns".  The thing we must remember is to keep our eyes above and not on this earth.  Doing this is a constant, moment to moment struggle for me.  God's plan for Zach's life..for all our lives is quite different than our plans.  His ways are not our ways.  On this earth we will all face trials and struggles. It is through this that we learn that all things happen for one reason...to bring glory to God. 

Romans 11:33 - 36

 ³³Oh, how great are God’s riches and wisdom and knowledge! How impossible it is for us to understand his decisions and his ways!

 ³⁴ For who can know the Lord’s thoughts?
      Who knows enough to give him advice?
 ³⁵ And who has given him so much
      that he needs to pay it back?

 ³⁶ For everything comes from him and exists by his power and is intended for his glory.

All glory to him forever! Amen.

We are so thankful for God's grace.  He has surrounded us with a support system the likes we have never known.  Thank you and God Bless, nighty night, Luv t



Garage Sale at LWCA

So last night and this morning there is a TEAM of women hosting a garage sale at the school to help raise money for Zachy.  These dedicated women who have put so much time and effort to do this for us .......amazing.  God Bless you!  Love P and T XOXOXOXOXOXOXOXOXOXOXO
Garage sale is from 8am till 3pm at Living Waters Christian Academy  in Spruce Grove!

Whats the plan

So much has happened since we came back from the Conference.  The Doctor in Maryland has accepted Zach into her treatment program!  We are so thankful that Zach will be seen by a Doctor who is familiar with his condition.  As long as he is in the clinical trial the cost of  his PTH injections will be covered by NICHD (National Institute of Child Health and Human Development in Bethesda, Maryland, USA).  This is VERY GOOD news as the injections are between $60,000 to $100,000 per year!!!!  What this means for our family it that every 3 months Zach will have to go to Maryland and stay in the hospital for 10 to 14 days.
We also had some other great news.   After 10 months of us fighting and pleading with Zach's Doctors here in Edmonton to send his blood to the US to have it checked for two different genetic disorders.....they finally agreed to do it!  FINALLY!  Amazing what a little pressure will do....LOL!
And still more amazing news!  Zach and I (Tanis) fly to Maryland on June 19th and on the 20th Zach will start his treatment at NICHD!   AND we have been given the FLIGHTS!!!!  Amazing!!! 
Perry and I still just keep looking at eachother and shaking our heads.....God is SO good.  He has provided in ways we could never have imagined.

Luke 12:27-31

²⁷Consider the lilies, how they grow: they neither toil nor spin, yet I tell you,  even Solomon in all his glory was not arrayed like one of these. ²⁸But if God so clothes the grass, which is alive in the field today, and tomorrow is thrown into the oven, how much more will he clothe you, O you of little faith! ²⁹And do not seek what you are to eat and what you are to drink, nor  be worried. ³⁰For all the nations of the world seek after these things, and your Father knows that you need them. ³¹Instead, seek his kingdom,  and these things will be added to you.

Anxiety is a word that pretty much describes how we feel on any given day.  However God has shown us time an time again just how much He cares for us.  He continues to bless us with love and support from the most unexpected places.  I think that's the point.  My idea of what I think we need and how God chooses to show Himself to us are two very different things.  There is still alot of uncertainty medically and financially in regards to Zach's care, but one thing is certain.  God Knows.  Love P and T



Link to Global Television Edmonton

http://www.globaltvedmonton.com/video/index.html?releasePID=0UXL3ho3A8FSKudfHvLY06NZHMHTMb_6

Hi!  Here is the link to the interview that was done at LWCA by Global TV.  Those kids are so  amazing.  We are so thankful for our school! XOXOXO

Light

I have been starring at my computer screen for a long time trying to figure out what to say about these two women who have given so much time and effort to help us.  They are generous and kind. Loving and thoughtful.  Selfless and compassionate.  Determined and possibly more stubborn than me...LOL!

Thankyou  xo

It only takes a little time
To show someone how much you care
It only takes a little time
To answer someone's biggest prayer

 Light your world
Let the love of God shine through
In the little things you do
Light your world
And though your light may be
Reaching only two or three
Light your world

Mathew 5:14

You are the light of the world. A city set on a hill cannot be hidden

Amazing

The students at LWCA raised over $500!!!!

Thank you!!!!

XOXOXOXOXOXOXOXOXOXO



Big Day

Hi!  So tomorrow is going to be a very special day.  The Children at LWCA where our kids attend school is putting on a fundraiser to help Zach and our family.  Global TV will be there to do a story on Zach's rare condition as well as to show the amazing love and support the school has bestowed on us.  It is to air on the 6pm news tomorrow night.  For those not close by, you should be able to view it on line.  We will post pictures and the link tomorrow.

This whole journey that we are on can at times be all consuming.  I am so thankful for the amazing friends and family that help keep me grounded to the truth....that all of this is part of God's plan.  We are humbled by your care and generosity.....God Bless.  Luv T

Proverbs 3:5-6

 ⁵ Trust in the LORD with all your heart,
   and do not lean on your own understanding.
⁶In all your ways acknowledge him,
   and he will make straight your paths.



Conference

Dear Friends and Family,                                                                          June 5, 2011

We are flying home and my brain is full of information.  We took pages and pages of notes and had the opportunity to talk face to face with the Doctors and researchers who study and treat Hypoparathyroidism.  We also were able to meet and visit with other people who have this disorder.

I will share some of what we learnt:

We have been trying to figure out just how “rare” Zach’s condition is.  Well, it’s hard for them to speculate because most Doctors in the world don’t even know what it is or how to test for it.  A safe guess in Zach’s case is 1 in a million.  Unreal.....

We also found out why there will never be a home blood test for Zach to check his calcium levels and why we have to go to the Stollery to do the test.  The test has to be done in a lab because it requires the use of radioactive material (not just any lab can test it).  Can’t you just see all the Klassen kids glowing in the dark.......LOL!!!!!

Hypoparathyroidism is the most difficult Endocrine disorder to treat.  It is an unpredictable disorder.

 PTH is the hormone excreted by your Para glands.  Zach’s do not work.  The lack of this hormone has a direct impacted on your bones, your GI system and your kidneys.

The number one question in our minds since Zach was diagnosed with this disorder is “why”?  At the conference there were about 40 to 50 people.  Most of those in attendance have Hypopara due to the removal of their Thyroid and the Para glands were taken out in the process.   We met a girl from Iceland who has been in a research program at The National Institute of Health since she was 6 years old.  She has been receiving PTH injections for 17 years.  She is beautiful.  She is in University.  She was the first child to be treated with PTH.  It was amazing to see her with our own eyes.

Zach’s current treatment address’s the lack of calcium in his body by giving him loads of Vitamin D.  However, it doesn’t address the real issue.....the lack of PTH in his system.

Thank you to all of you for your prayers and support.  God has provided for us in ways we could not have imagined.  We will keep you up to date with what is going on.

Love, P and T

International Hypoparathyroidism Day!!!!!!!

June 1st, 2011

Is the first ever

International Hypoparathyroidism Awareness Day

They've chosen the color Green as the color to show your support.

That's just great!

Go Riders Go!  LOL!!!!