Hope Reigns...part Ii: Shwachman Diamond Syndrome and My Five Year Old Grandson

My grandson, Heston Wayne, will turn 11 in a few short weeks. He is like his brother and Momma-- he is a fighter. Despite feeding tubes he still struggles to keep his weight at a level that is close to 'normal'. And the search for a bone marrow donor continues in earnest. Despite being very ill herself, his Momma has attended two events ( social distancing was observed) this spring. Two were Powwows which is special for us since we are part Cherokee. Heston Wayne was honored at each event. We continue to pray that a donor will come. YOU can sign up to be a donor---just go to DKMS.com to see how easy it is to do. And like Heston Wayne says..."If not a donor for me, then maybe donor for someone else". There are numerous articles on my pages about my family's fight to continue to be survivors.

My grandson today is now 7. His life has been one doctor visit ....one hospital stay after another...for the last 2 full years.

Today he is undergoing a surgery to try to determine motility in his colon. He continues to lose weight even though he has a gj tube. We are desperately seeking answers to help make him stable.

We continue to seek a bone marrow match for him as well so please go to dkms.org to find out how you can become a donor.

To look at him in the photo, you might want to say: O he looks so good.

And he is cute...no doubt about that....of course I will say as his Nini.

But he is so thin and feels so rotten...it is heart breaking....helping me with Libby brings a smile to his face.

So much is happening that I am unable to come to HubPages to visit with my friends here...to reconnect and to enjoy the postings.

In less than one week Heston will travel with his Momma to Boston to receive the medical care he so badly needs. A specialist is there (more info is about here in the paragraphs below) and a second specialist from Seattle is being flown in to examine and advise on Heston's illness.

We had a sixth birthday party for him and he had a good time although his endurance is very short and his energy level is at its lowest ebb. He was pumped up by the kids who came to enjoy the very large slide that was provided for their entertainment. We were just so happy he had a good time but after not too many hours he said, to me, privately, "I had fun but they can all go home now...I need to rest." Bless his heart....

And his Momma has had two more MI's within the last four weeks....all of the stress is definitely not good for her but she is very proactive about her children and is seeing to it that Heston gets the care he must have.

We are still raising money for the expenses that the insurance which takes a huge chunk out of his Daddy's pay check does not cover.

Just wanted to let you all that have been supporters all of these years what is up..

Sending Angels and positive energy to each of you....

Since I first posted this, Heston's condition has worsened. It is very possible that he may have to have a bone marrow transplant.

It is not a definite at this point but I feel they just wanted to give us fair warning.

So again I am asking for more prayers and Angels and positive energy.

And I do not like to share my own postings but want to keep Heston lifted up.

And thank you so much.

My grandson has tentatively been diagnosed with Shwachman-Diamond Syndrome, SDS,(more about the diagnosis aspect to follow)....and is in bone marrow failure.

Not too many weeks ago I submitted a hub entitled "Hope Reigns" here on HubPages....really an ode of sorts to remaining positive when the stuff that comes, keeps on coming.Those of you who have read my writings know that both my daughter and eldest grandson are battling cancer and have been for years. Now my baby grandson who will be six in May is sick with another rare disease.

We are trying to raise much needed funds through GoFundMe...the link is provided below.

The trip to Boston from Florida is costly and thankfully the air fare has been paid by a precious family member.

The room is not paid for; since he is out-patient he may not be able to stay in the facilities one would often use that are much less costly than a hotel. So a motel room for eight days is a huge expense.

The co-pays are in excess of four thousand dollars...things his Daddy's insurance do NOT cover.

Please help by giving a donation. If you are unable to give, please share on twitter, G+, facebook, gmail, and other venues.

We are trying to get him the help he needs so badly.

And thank you in advance.

Heston’s Momma becomes totally immersed in understanding the illnesses of her children.

(If you have read my writings you know that my eldest grandson also suffers from a rare health condition). She has made it her business to know what the condition is, what to expect, and how to help Heston LIVE with it.The following is some insight into this condition in her own words:

“Lil’ man (that is what we often call Heston) has been sick for some time now and we have seen many doctors in an effort to find out the cause of this illness.

Sadly in January of 2016, were given the clinical diagnosis of Shwachman-Diamond Syndrome."

"While his new doctors give us some insight into his previous medical problems, we are devastated by this news. This is something I never dreamed I would face ever again. As most of you know, my eldest son, Jay, and I have multiple, serious medical conditions. Both his Daddy and I were hoping Heston would dodge the bullet...as it happens, he has not."

"SDS is a disease filled with mystery and is often fatal. It affects multiple areas of the body including the pancreas, bone marrow, skeletal system and can affect other areas as well.

In some cases but not all, SDS can lead to lukemia, bone marrow failure, and other potentially fatal blood disorders."

http://www.shwachman-diamond.org/

"I am on a mission rightt now to get our son the best care possible. Nemours Hosptial in Orlando, Florida, has been wonderful and has pointed us in the right direction. The SDS community is also providing much-needed support.

The road is leading us to Boston to Dana Farber Cancer Center and to the helping hands of Dr. Aiko Shimamura, MD, PHD, Director, Bone Marrow Failure and Myelodysplastic Syndrome Programs, Dana Farber/Boston Children's Cancer and Blood Disorders Center.

Yes it does...we remain ever hopeful that our efforts for Heston as well as for his Momma and brother will bring the healing we have prayed for all of these years.

We are so very thankful to each of you who have walked this walk with us and who continue to walk with us.

Truly, as John Donne so eloquently stated it: "No man is an island entire of himself."

The prognosis is grim if Lil' Man does not receive the care of Dr. S at Dana Farber.

He did travel to Dana Farber in Boston. And they did set him on the course to getting his feeding tube...first a gtube and later a gj tube when the gtube failed to produce results that are desired.

After the surgery today there will be another on Friday and then we wait for results of what is gleaned from the studies that are conducted. A trip is planned to Dana Farber again and to Atlanta ....so fund raising is a priority. The family has insurance but there is much not paid by insurance. His formula alone is $1800 a month...and while his father works the income is not enough to support normal living expenses plus frequent doctor and hospital stays and his formula. So please help in any way that you can. Please share this article so that others may know...and thank you. You can read more about Heston Wayne at

The-Fight-of-His-Life-Continues-My-Six-Year-Old-Grandsons-Continues-His-Fight