I was going through a closet full of memories a couple weeks ago from the time Isaiah was in treatment.  I've kept every card ,gift poster that we received and once in a while I like to go through them to be reminded of God's love and grace he showed through people!  So I decided it was time for another update and thankfully this is not coming at any urgent request. 🙌 .  A new year and hopefully we are praying for the first year without any urgent medical trips.  Wow! every year we've had some urgent issue with Isaiah since 2014.  I keep telling him he just loves going to the hospital too much! 😂 Lets just go visit as outpatient😉 .  Time has flown by since Isaiah's last big MRI scan which was thankfully clear once again.   Since you've faithfully followed Isaiah's journey for so many years I wanted to share some areas that we continue to work on and we could use prayer for.  

As many know that with radiation and chemo come harsh side effects that linger for years to come especially in a growing child. So for years since treatment Isaiah's health has been monitored with various doctors and alternative therapies to try to build back his immune system and work on the areas that were damaged.  

One of the areas that were severely damaged from radiation was the pituitary gland which releases growth hormone.  Isaiah is 13 years old now but he is the height of my 10 year old.  He has grown about 3 inches in 5 years.  In 2016 after much prayer we started him on growth hormone which is a daily injection.  It has been a rocky road with the growth hormone.  We started at an extremently low dose initially and after 3 days he had a severe migraine which we assumed was the hormone and so we stopped it.  We waited and restarted again at the advice of the endocrinologist who said he should be fine the second time around.  He tolerated it longer but after a couple weeks the migraine resumed.  It has been an ongoing trial and error test of stopping and restarting.  Our doctor was really surprised and really hasn't seen this happen before.  The migraines that he gets on the GH is unbearable and so with his history of cancer and bleeds which all have symptoms of headache this is not a viable road for him let alone he can't function with them. The height issue hasn't been a huge issue in his early years but now he is beginning to see his 10 year old brother pass him in height and kids his age are like a foot taller.  Being a bald kid and now a really short bald kid is starting to once in a while bother him.  He's asking whether he'll ever have hair and ever be a normal height.  Also being 13 Isaiah is becoming the age of entering puberty and so this is also an unknown area for whether his body has been damaged so much from treatment that puberty may not happen and so finding the right medications to put him on for that as well is beginning to be an area we need to look at.  

He is also currently having to wear a foot brace on one leg at night to try to stretch out the muscle at the back of the calf which most likely attrified from numerous hospital visits. In order to avoid surgery he is wearing the foot brace to sleep in and then the pressure which pushes the foot forward is adjusted every month to slowly stretch that muscle and allow his foot to gain 20 degrees past 90.  The lack of muscle movement in the leg has contributed to his balance issues and falling or tripping because it causes him to walk on the foot toe first instead of heal first.  Surgery would put him out of commission physically for up to 3 months with casts and wheelchairs and we both do not love that prospect.  

My constant search for answers for various health issues has led me to a local functional medicine doctor that agrees he has some strange things going on that we need to find answers to.  She also would like us to get a second opinion on why he is so prone to brain bleeds.  I've never felt like we've ever gotten a great reason if any to why he can hit his head and have a bleed but that would not affect another kid. Many blood tests have been run at UVA over the years and everything has come back negative.  One bleeding disorder they have tested for is called Von Willa Brand Disease.  It is typically hereditary however we do not have it.  He actually was tested for this after his very first bleed and the test came back negative.  In August of 2019 they tested again and his numbers came back in the gray area which is not typical for someone who definitely has this bleeding disorder.  So we are uncertain of whether he truly has this disorder.  

Another area of concern to her is Isaiah's bloodwork always shows high inflammation.  This new functional medicine doctor has been a blessing because she is truly on a mission to help us and Isaiah figure all of these areas out and is on a mission to find someone who can if she can't.  She read his full 356 page (literally a book) medical history that UVA Medical Center sent to her and condensed it into one page with timelines.  She has calls out to find the top doctors that can help give us some second opinions.  And so cancer with a child is never over in a year of treatment it becomes a continuous journey try to heal areas that were broken because of the treatment that saved his life.  

Isaiah's cancer has changed our life permanently and in so many ways for the better.  Many of you may not know that I went to school for Interior Design and I officially opened Ruth Truman Interiors in 2016.  About a year ago I stumbled upon a National Non Profit organization that is based out of San Diego, California called Savvy Giving by Design.  Their mission is to transform children's rooms who have a medical crisis such as cancer.  Having gone through cancer treatments with Isaiah I know first hand how many hours in medical crisis spend in their rooms and research has shown that your space contributes to 30% of the healing process.   I contacted the non profit and applied to be the Virginia Chapter President.  So in October of 2019 I officially launched Savvy Giving by Design in Virginia.  Three amazing friends have volunteered to be on the board to help me with this massive undertaking.  I am so excited to be able to give back by using my design experience and especially because I have first hand experience with what these families are dealing with.  We not only make the rooms beautiful but make them meet the specific medical needs of that child.  We remove allergen carpets and install hard surfaces.  We give them hypoallergenic bedding.  Our motto is that we are turning "Go to your Room" into a good thing for these kids. Because most of their time is spent in their rooms we want them to be inspired and have a space that meets their medical needs.  Another amazing thing is we not only make over the room of the child who is sick, but we also do all the siblings rooms.  There are currently 14 states that have Chapters.  Each chapter runs independently without any paid members.  Each Chapter raises their own funding to do these rooms at completely no cost to the families.  We are currently fundraising for our Virginia Chapter.  Sadly the need is great!  Just locally we've already heard of 3 different families with kids who could benefit from what we do.  


God is using Isaiah's life and experience for His Glory.  I would have never imagined 6 years ago that I'd be heading up a 100% volunteer run non profit, yet here we are where I believe He wants me to be.  I wanted to share with you about this because this is part of Isaiah's story.  Firstly I'd like to ask for prayer for Isaiah's continued health issues with growth, puberty, bleeding, immune issues and his foot and then also for this new non profit venture.   Secondly, we are trying to spread the word about our non profit especially if you are local to Virginia so would you share about us on Facebook if you are on there and by word of mouth.  Thirdly if you are able to give financially we would greatly appreciate your donation, knowing that 100% will go to a child's room makeover who is in medical crisis.   Below are some links if you'd like to keep up to date on Savvy Giving by Design Virginia and see what we are doing. If you're on Facebook join our group below.  We post all the needs and the room makeover reveals there.  You can also go straight to our Virginia website.

So once again we are blessed to have you for so many years following our story. Thankful for your years of praying.  I will continue to update as we hopefully get some more answers to some of Isaiah's issues.