OT- asking for prayers for a little girl with DIPG

Submitted by beef supreme on
A little girl in my church family has recently been diagnosed with DIPG, the same as Chad Carr. There is still no cure or verified treatment, but they are going to try some experimental treatment. As I am not the parent of this little girl, I will not be releasing any identifying information about her, but I will tell the parents about #ChadTough and hope that it gives them strength. Please pray for this little girl and her family.
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Cranky Dave

April 19th, 2017 at 11:57 AM ^

I don't know how people cope with pain of children being seriously ill. My wife and I have been involved with Mak-a-Wish and they do great things for kids and their families. If your friends aren't aware of Make a Wish already let them know

Joined: 09/08/2012

MGoPoints: 26240

sammylittle

April 19th, 2017 at 12:34 PM ^

Make-A-Wish is an excellent organization!

Before opening MGoBlog this morning, I phoned my 8 year-old son's physician to request he be transferred to hospice. I, then, came here to get away from my thoughts. I opened and closed my browser three times before deciding to comment. I chose to do it as a reply so as not to hijack the thread.

My son's disorder, junctional epidermolysis bullosa, is painful and progressive. We have spent an average of 14 weeks in the hospital the last four years and attempted a bone marrow transplant in December, 2015. His suffering has reached a point where he would rather have his life end than attempt to continue to grit it out. It is heartbreaking as a parent.

I responded to your post because I want to commend you for being caring enough to help families in our position. The strain of a having a longterm sick child at home is indescribable. It neagtively impacts sleep, family communication, recreation, spiritual pursuits, exercise, travel, finances, and work.

If you know someone with a severe ill child, offer them help. Because life becomes difficult and confusing, they may not know what they need. Be persistent! They will eventually recognize they have needs you can assist them with. We have only survived the last 8 years because of the support of friend, family, and our community.

Joined: 09/29/2008

MGoPoints: 7825

DOBlue48

April 19th, 2017 at 1:02 PM ^

You will also be inclueded in my prayers.

I will openly admit that your post brought more than just a pesky tear to the corner of my eye.  It was waterworks here for a bit as your story hit very close to home.  I, too, had to make the excruciating decision to replace our son's physician team with hospice.  We had him with us for just 9 months, but his battles were more numerous and bigger than most people face in a normal lifetime.

May you find peace for your son, your family and yourself in due time.

Joined: 10/21/2015

MGoPoints: 2156

yossarians tree

April 19th, 2017 at 1:48 PM ^

My heart and prayers go out to you. There is nothing more disheartening and soul-crushing as watching someone in the fullness of youth have to go through a long, potentially fatal illness. Often, QUITE often in fact, there ends up being permanent damage done to those close to the tragedy as well, in the form of broken marriages, alcoholism, or just long term broken hearts. Family and community can help, definitely, but in the end one is forced to make peace with a thing that offers no comfort. That cold look at the harshness of reality is not a thing that I envy for anyone.

Joined: 08/19/2010

MGoPoints: 22293

SoDak Blues

April 19th, 2017 at 2:03 PM ^

God bless you and your family. JEB is a horrible condition. I cannot imagine what you are going through, and I hope I never have to experience such a tragedy with my own children. You are a strong man and parent to have endured this, and I hope that your little guy experiences immense peace.

Lotta onions in my office right now... 

Joined: 09/24/2015

MGoPoints: 17693

Cranky Dave

April 19th, 2017 at 2:36 PM ^

The pain you feel. However being involved with Make a Wish has given me some appreciation for the things families go through with severely ill children. We went to the Wish Ball earlier this year and it's heartbreaking and I may or may not have cried.... giving kids and their families something fun and amazing in the midst of a horrible life makes me feel like we've helped in some small way.

Joined: 09/08/2012

MGoPoints: 26240

LSAClassOf2000

April 19th, 2017 at 12:25 PM ^

Sending good thoughts in your direction.

I cannot even begin to imagine what parents go through in these situations, where a child has a serious illness. 

Cranky Dave suggested Make-A-Wish - I second that. We've done it as a group at work and it is incredible to see the results.

Joined: 01/07/2011

MGoPoints: 130603

bhinrichs

April 20th, 2017 at 10:33 AM ^

 

And Luke 18:9-14 is an encouraging parable here as well.  Just quoting the end of it:

 

13 “But the tax collector stood at a distance. He would not even look up to heaven, but beat his breast and said, ‘God, have mercy on me, a sinner.’

14 “I tell you that this man, rather than the other, went home justified before God. For all those who exalt themselves will be humbled, and those who humble themselves will be exalted.”

Joined: 01/17/2016

MGoPoints: 314

DOBlue48

April 19th, 2017 at 12:44 PM ^

If only upvotes could cure those in need.

This young child and family will be in my thoughts and prayers.  Will be hoping for a future post telling the MGo family that the treatments have spawned a miracle.

Joined: 10/21/2015

MGoPoints: 2156

amphibious1

April 19th, 2017 at 1:02 PM ^

You can donate to the ChadTough Foundation with every Amazon order if you use smile.amazon.com/ and select Chad Tough as your organization. Any little bit helps fight this awful disease!

Joined: 09/02/2009

MGoPoints: 12657