Monday, October 26, 2015

Update Oct 2015


Dear friends,
 We are happy to announce that Brian's MRI of his brain did not show any changes from last year's imaging.  This is good news as it means there is no current activity of LCH doing damage in his little body. He's been doing so well we would have been shocked by any other news! He has been growing as he should which, again, is a huge praise as the growth hormone being affected is the next symptom to watch for with Brian's CNS LCH. If interested you can read more HERE
 This past year Langerhans Cell Histiocytosis was recognized officially as cancer. It is a rare disease that isn't that well known (even my spell check doesn't identify the words). In being labeled as a pediatric cancer we hope more pediatricians and other doctors will learn about the signs and symptoms so that diagnosis can be made and proper treatment given.
  While Brian will take medicine for the rest of his life because of his Diabetes Insipidus (secondary diagnosis because of LCH damaging his
 pituitary) we are so grateful to God that Brian is where he is. It could have been so much worse. God is faithful and He is good, even in the hard. We've said it before but it often needs repeating, God's sovereign hand doesn't mean everything is perfect, but He is perfectly working for our 

good and His glory.
 This journey with Brian's illness and treatment has given us a perspective to what is truly important. Our life here on earth is vapor. We don't want to waste it storing up treasures on earth, but we want to be investing in the kingdom and keep an eternal mindset. Some of you may have heard that we started foster parenting this past year. We've been met with mixed responses. Some are so thrilled knowing we have a strong family unit and want to share that with children that come from abuse, neglect or abandonment. Others offer the "you've already been through too much just focus on you" comment. We just don't see in scripture where we are called to a life of comfort and security where we focus on self. We are called to a life of service and love. We feel God has called us and as 1 Thessalonians 5:24 says, "he who calls you is faithful; he will surely do it." HE is the one who equips and sustains us. HE is the one that carried us through four and half years of chemo, surgeries, uncertainties, sickness, financial stress from exorbitant medical bills, etc. During a trial that can tear marriages apart God healed and knit us together. During a time that can lend itself to bitterness and anger towards God, He showed us His grace, mercy and LOVE during the hard.
  He is good and we want to share that love with vulnerable little ones and their family in hopes that we can be an instrument in the redeemer's hands.
 Thank you for your prayers and encouragement for Brian and our family. Please continue to lift us up as we seek to glorify God in all that we do.
 Carrie 
For some reason I can't get pictures to load so I will try later today. :-)

We didn't get pics this year, but here's a picture from last year's MRI. Brian's first 45 minute brain MRI without sedation. Oct 2014


Brian with Dr McClain Oct 2015 



SO very thankful these next images are a part of our past and not our weekly routine anymore!!! God has brought us through so much!!  
  Getting ready for a treatment, but blood work first. 2009


The second port and getting ready for round 2. Fall 2010 


Spring 2012-Fred and Carrie responsible for home infusions.

3 comments:

David and Kate said...

Wonderful news Carrie. I have been thinking and praying for you guys over the last few months and wondering how you all were doing. Praise God from whom all blessings flow.
xoxo
The Van Yperens

Unknown said...

I just found your blog. How is your son now? I am crying whole reading because my son may have the same...he is taking Desmopresin because of diabetes insipitus. please respond! Gog bless you !!!!

The Schreiber Family said...

Hello unknown...I would love to know your email address so we can chat. Our son is doing SO WELL. His last appointment in TX this past fall went so well that now our son only has to go every other year for tests, scans, etc. We still see our local oncologist every six months for blood work and for some eyes on our son. We see his endocrinologist every three to six months depending on how he's doing managing his DDaVP pills. Right now we're in a good rythym so he only goes every six months. We are so thankful for our sons health, but it was definitely a journey getting to where we are now. Having a support system is SUPER important. And it's also very encouraging to talk to someone who has walked a similar path. I'd love to encourage you if you want to chat.