Brian Robert & LCH: Update Oct 2015

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.

4 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; October 27, 2015 at 8:35 AM
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 !!!!; June 26, 2017 at 4:01 AM
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.; June 26, 2017 at 6:07 AM
chocolaterose said...: Hi Carrie, I just read the most recent update (from 2015). In 2016, at 7 mos old, my grandson was diagnosed with LCH. He has just completed what we are trusting God is the last week of chemo. Has an MRI on the 15th.

Thank you for sharing Brian's story, but most of all, thank you for sharing your faith and the grace of our Lord...i will share your blog with my daughter. I'm sure it will bless her and help rebuild her faith and relationship with the Lord. God bless you for continuing to share your life and love selflessly. Becky; July 31, 2018 at 2:32 PM

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Brian, BB or "B-ber"

Brian is our seven year old boy. He is the third of four children, all born in just four years. Sept 2009 Brian was diagnosed with Langerhans Cell Histiocytosis. He spent seven months on Chemo and steriods. In April 2010 we had his port removed and celebrated "no more chemo!". His treatment from May forward was oral medicine on the weekends and scans/bloodwork every three months. Brian's firt set of scans/follow up with the oncologist in July were wonderful. We didn't quite make it to his second set of scans three months later in October. In late July/ early August we started noticing suspicious bumps on his scalp and a rash on his private area. On Sept 15, 2010 we took Brian to his oncologist. That appointment revealed the possibilty of more chemo. September 21 we had a biopsy that two days later revealed that Brian's LCH was back. We immediately had surgery to implant a port and in Oct 2010 started a second journey through chemotherapy and steroids for our little Brian. In March 2011 Brian's chemo drugs were changed around as his new protocal was not working. Brian was still presenting symptoms. We went back to the original combination of drugs but this time instead of being on them six months the plan was for twelve months. Brian completed his second round of chemo March 8, 2012. Even though Brian was completing treatment, we started noticing symptoms of Diabetes Insipidus in March 2012. He was diagnosed with D.I. March 22, 2012. His new diagnosis was considered a relapse for his LCH. Brian's third round (or fourth protocol depending on how you look at it) of chemo and a totally different protocol began April 2012. He had chemo five days in a row followed by a three week break for 12 months. He completed that protocol the first week of April 2013. In July of 2013 Brian had his port removed and we were over the moon excited about NO MORE CHEMO. In October of 2013 Brian had a recurrence of symptoms. He took six months of oral chemo. In April of 2014 he had another MRI. It was decided that Brian could stop treatment. By August-September 2014 he started showing symptoms again. October 2014 we are back in Houston to see what the next step will be for treatment of Brian's LCH.