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Hope Reigns...Part II: Shwachman Diamond Syndrome and My Five Year Old Grandson

Updated on June 6, 2016

Heston with Libby, a special kitty I have written about here on HubPages

Source

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.

Update....

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....

More Unsettling News...but OUR HOPE REIGNS

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.

Brothers Together....Jay, the eldest, often comforts Heston after a doctor visit

Source



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.

Thinking of Clever Ways to Present His Snacks

Source

Let Me Interrupt Her Sharings for a Moment....We Need YOUR Help

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.

GoFundMe is One Way We are Raising Funds for Heston

What is Shwachman-Diamond Syndrome?

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."

Enjoying Some Relaxing Time at My Friend's Home

Heston and Jay spent Thursday through Saturday with me and we went to my friend's who has a nice comfy hammock (as Heston says).
Heston and Jay spent Thursday through Saturday with me and we went to my friend's who has a nice comfy hammock (as Heston says). | Source

Heston's Momma Continues...



"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."


Dr. Shimamura at Dana Farber

More to Know...

"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."


For More Information Review the SDS Foundation Site

His Momma Adds...



"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.

HOPE Still Reigns....

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.

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    • pstraubie48 profile image
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      Patricia Scott 10 months ago from sunny Florida

      We are hopeful...so much is happening and we are trying to make sense of it all. Our resolve is real and we do remain hopeful.

      Thank you, flourish, for stopping by.

      Angels are on the way to you this evening. ps

    • pstraubie48 profile image
      Author

      Patricia Scott 10 months ago from sunny Florida

      It is a journey, Flourish. Today is a HUGE day for little man...he is at the hospital right now. I will update in a few days.

      We have learned to live our lives as we should: one day at a time, being thankful.

      Again Angels are headed your way ps

    • FlourishAnyway profile image

      FlourishAnyway 10 months ago from USA

      So young to be facing such a difficult battle. My thoughts and prayers are with your family.

    • pstraubie48 profile image
      Author

      Patricia Scott 11 months ago from sunny Florida

      Thank you so very much, RTalloni. We are so appreciative of all of the good wishes that come our way.

      Angels are on the way to you ps

    • RTalloni profile image

      RTalloni 11 months ago from the short journey

      He's a precious little boy and I'm really sorry he is sick. It is so difficult on all the family and I will pray for you all. I thought it might be a good idea to highlight this earlier hub that includes the Go-Fund-Me link since the latest hub is being highlighted more frequently right now.

    • pstraubie48 profile image
      Author

      Patricia Scott 11 months ago from sunny Florida

      Thank you, Rachel. All of the prayers we receive lift him and his Momma up...we know the power of prayers....Thank you thank you...we are feeling a bit overwhelmed but so grateful that we got them to a specialist and to another who flew in from Seattle. We feel it is in God's hands. God's peace and love to you, my friend. Angels and blessings are on the way ps

    • Rachel L Alba profile image

      Rachel L Alba 11 months ago from Every Day Cooking and Baking

      Hi Pat, I was checking in to see how things are going. My heart goes out to your little grandson and all your family. My prayers and thoughts are with your for sure. God be with you all. He will give you strength and grace.

      Blessings to you.

    • pstraubie48 profile image
      Author

      Patricia Scott 11 months ago from sunny Florida

      Thank you , brave warrior. So sorry for the delay in responding...it is a bit of a whirlwind here at this time. Angels are on the way

    • bravewarrior profile image

      Shauna L Bowling 12 months ago from Central Florida

      Pat, my thoughts and prayers are with you and your family. I read this with a heavy heart.

    • pstraubie48 profile image
      Author

      Patricia Scott 12 months ago from sunny Florida

      Thank you, Chitrangata, for your kind words. Our faith remains strong and hope does sincerely reign. God is good!!! In a few weeks now he and his Momma will make the journey to Dana Farber in Boston. Angels are on the way to you.ps

    • ChitrangadaSharan profile image

      Chitrangada Sharan 12 months ago from New Delhi, India

      So very sorry to hear this news through your hub. Hope and prayers keep us strong and give us the strength needed in such difficult moments of the journey of life. Please have faith and I know you are very strong and believe in the 'Supreme.'

      May God bless you and your entire family. I will pray for you and your lovely family.

    • pstraubie48 profile image
      Author

      Patricia Scott 13 months ago from sunny Florida

      Thanks Deb for your kind words. Just please keep sending positive energy and prayers and Angels our way.

      Angels are once again on the way to you ps

    • aviannovice profile image

      Deb Hirt 13 months ago from Stillwater, OK

      Oh, Pat, I truly feel for this dear child and the rest of your lovely family. I will do all that I can for you.

    • pstraubie48 profile image
      Author

      Patricia Scott 13 months ago from sunny Florida

      Thank you so much...his condition is declining so we are eager for the June Dr visit to occur...prayers are so uplifting and welcome. Angels are once again on the way.ps

    • always exploring profile image

      Ruby Jean Fuller 13 months ago from Southern Illinois

      I will share this everywhere. God bless you and your family. Like Bill said, " No words " but do know that we care and special prayers going out.

    • Shyron E Shenko profile image

      Shyron E Shenko 13 months ago from Texas

      Patricia, this hurts my heart, God knows how strong your family is.

      Angels with blessings and prayers are on the way to this day.

      Sharing on my fb page. ss

    • pstraubie48 profile image
      Author

      Patricia Scott 13 months ago from sunny Florida

      Thank you Peggy. We are so blessed to have so many to lift him up. It is so crazy that we must raise money...his Daddy has insurance but as you know insurance does not cover a LOT...their co-pays are 4359$ is that insane???!!! Anyway thank you for sharing..please know Angels are in the way to you and yours.

    • pstraubie48 profile image
      Author

      Patricia Scott 13 months ago from sunny Florida

      Fait thank you for your kind words. The illnesses are not environmental...wish we could blame it on that...my grandson's both have illnesses that are genetically passed...my daughter just was like soany others...she got sick. We really are not unique...many families climb mountains every day. We just do not hear about them. I am sharing so that many can pray for him. We know God is in the house. God's peace and blessings to you. Sweet Friend...please pass this on...we do need help. Know that many Angels are on the way.ps

    • pstraubie48 profile image
      Author

      Patricia Scott 13 months ago from sunny Florida

      Blossom. God is good to us each day..He has carried us through so many difficult times...we know He will do so this time. Angels are on the way to you.please pass this along so others may know.

    • pstraubie48 profile image
      Author

      Patricia Scott 13 months ago from sunny Florida

      Thank you Ms. Dora..God is good...He will bring Heston and each of us through this....please share this hub so that others may know. And thank you. Know that many Angels are on the way. ps

    • Ericdierker profile image

      Eric Dierker 13 months ago from Spring Valley, CA. U.S.A.

      All our prayers and thoughts are with you. You inspire.

    • Peggy W profile image

      Peggy Woods 13 months ago from Houston, Texas

      So very sorry to hear this news Patricia. Obviously you have my prayers. Will definitely share. May God bless you and your entire family.

    • Faith Reaper profile image

      Faith Reaper 13 months ago from southern USA

      Dear PS,

      I cannot imagine all that your precious family has been through with all of these serious diseases. Makes me wonder about the environment in which you live for so many dear family members to become sick.

      I have a five year old grandchild too, and it burdens my heart so much to think he is suffering with such a disease.

      Please know you and your family are always in my prayers.

      Peace and many (((Hugs)))

    • BlossomSB profile image

      Bronwen Scott-Branagan 13 months ago from Victoria, Australia

      Devastating is the only word for it, but in spite of it all your faith shines through. I'm praying for each of you, that He will see you through such a difficult time.

    • MsDora profile image

      Dora Isaac Weithers 13 months ago from The Caribbean

      Pat, as we say sometimes, "You have your hands full." My prayer is for God to intervene in the lives of each family member, for them to receive proper care, to obtain financial help, and for you and all to experience His favor. Please lessen the anxiety (as much as you can) by trusting in Him!

    • Frank Atanacio profile image

      Frank Atanacio 13 months ago from Shelton

      prayers and hope will always be in your path.. I hope and pray for your family and be strong with Faith... bless you all... Frank

    • pstraubie48 profile image
      Author

      Patricia Scott 13 months ago from sunny Florida

      Thank you Paula...things have taken a more serious tone in the last 24 hours. We clinging to hope that Dr S will have the cure. It is possible to cure SDS if it is caught at the right time.

      Once again Angels are on the way to you ps

    • pstraubie48 profile image
      Author

      Patricia Scott 13 months ago from sunny Florida

      Thank you for stopping, DDE, and sharing your thoughts. We do remain hopeful that we find a cure for him

      Angels are on the way to you this afternoon. ps

    • fpherj48 profile image

      Paula 13 months ago from Beautiful Upstate New York

      ps......My heart is heavy. Thoughts & prayers are with you & your precious family. I admire your strength. Paula

    • DDE profile image

      Devika Primić 13 months ago from Dubrovnik, Croatia

      This is new to me! Thank you for sharing this hub. Hope keeps us strong and hope and prayers are with you. No disease is a good one.

    • pstraubie48 profile image
      Author

      Patricia Scott 13 months ago from sunny Florida

      Thank you, bill...we DO so believe in the power of prayer and we do hold onto to the hope that Dr. S can help...thank you for caring. Angels are on the way. ps

    • billybuc profile image

      Bill Holland 13 months ago from Olympia, WA

      No words PS. Only hugs and prayers coming your way.

      bill

    • pstraubie48 profile image
      Author

      Patricia Scott 13 months ago from sunny Florida

      Thank you, Rachel. We had not heard of it either. We are concerned as you can well imagine but DO remain hopeful that Dr. S can help

    • Rachel L Alba profile image

      Rachel L Alba 13 months ago from Every Day Cooking and Baking

      Hi Pat, SDS is one disease I never heard of. How devastating for all of you, especially that precious little guy. He has a sweet face. I would love to help you out, but with my husband retired and he just went under surgery himself and there is a lot we will have to pay for, I am strapped myself. But in my prayers you will be. I will also put this on Face Book and hope and pray someone will be able to help out. Nothing is impossible with the Lord. So we will keep praying for all of you. Remember how Jesus loves the little children, your grandson is precious to Him. God bless you all.

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