Day 54 for Bekah...things are not so good

[maureenreynolds]

Since her Bone Marrow Transplant, there have been good days and not so good days. It's a roller coaster ride with hope and sadness. I truly don't know how Sharlah is surviving this with the constant variation and handling the medicine she gives Bekah every 4 hours. Most nights they can still stay in the RonMcD House but not with a full night's sleep.

Rich and Michael's visits on the weekend have been upset because of a cough or sniffle. That's what has happened lately and so Sharlah is still shouldering the full burden. Even if he could take time off now, Rich had the cough last weekend.

By contrast, we had dinner with another grandchild last night - 3 year old Lotus who is seriously verbal, speaking to us in complete sentences and with an amazing vocabulary. Such contrasts make our hearts go out to Bekah all the more.

Right now, I ask nothing but prayers and good thoughts for Bekah and her family. And a reminder to tell those you love that you love them - today.

~~~~~~~~~~~~~
From Sharlah
+54

Don?t you be afraid, for I am with you. Don?t be dismayed, for I am your God. I will strengthen you. Yes, I will help you. Yes, I will uphold you with the right hand of my righteousness. Isaiah 41:10
This is my verse of the day. I need strength because I am on the verge of breakdown. I really thought that I was ok and doing pretty good as we have gone through this journey. Today, Dr. Graham told me that Bekah probably does have a case of GVHD. Graft vs. Host Disease. This is where her new cells attack her body. He believes they are attacking her esophagus and her stomach. This is why she has stopped eating and throws up all the time, (bile-because there isn't any food.) has a temp and a rash around the neck area. The treatment is pretty easy- steriods. Sounds great right?? That's what I said. "oh -good, let's do that then." "No"... Dr. Graham says that the steroids could cause the CMV virus to grow out of control. (Remember, they have been struggling to get control of this virus for a month now since it reared it's ugly head. Bekah is unable to fight it because she has no immune system and what is there is suppressed.) So basically Bekah is struggling with a double edged sword: the GVHD that can be controlled by steroids, if left untreated, the GVHD will continue to attack her body. If the GVHD is treated then it could cause the CMV to escalate causing serious injury to her body as well. So then what do we do?

So Dr. Graham is scheduling the anoscopy as soon as he can get a Dr. to do it. (Wed or Thurs) to see if this is really the case of GVHD. He doesn't want to start steroids unless he absolutely has to, but if it is infact GVHD, then he has no choice because it is the worse of the two evils.

I don't know if this makes sense, but I do know we will get through this. Bekah is such a strong young lady and so very giving. She isn't angry at anything that is happening, but only wants to get better so we can be a family again.

So I ask the Lord for strength. I pray to the Lord for Bekah's health to return and to give the Dr's knowledge of what to do and how to help Bekah beat this. I also pray to the Lord for me to not be frightened of the possibilities that are there- no matter how real, but to help Bekah through this. Please Lord help us as we cross this next mountain in Bekah's treatment.

lots of love~Sharlah

[HeatherPrins]

your strength is so beautiful! hugs to you.

[Joey_M]

Oh my stars this makes my heart heavy. I will keep you all on my prayer list. I will hug my kids and tell them how much I love them. I will be more patient, more loving, more Chirst-like. Your message urges me to be a better person as our time here is short. Thank you for this update, and know that you and your family are being lifted up!

Praying.......

[jazzmatazz]

Sharlah is a remarkable lady, Maureen. You can certainly be proud of her and of yourselves as her parent. Her strength and Bekah's are such a wonderful testimony to their faith. Continuing to lift prayers for healing to the Great Physician ...

Peace,

[Lynn Grieveson]

So sorry to hear about the bad days. I hope they become fewer and fewer, and that Sharlah's amazing strength continues.

[Julie DeGuia]

So sorry your family is going through this... especially during this season that is supposed to be filled with hope and joy. You will continue to be in our thoughts.

[earlofoxford]

I hope the doctors are able to treat Bekah's conditions successfully, and I will continue praying for your whole family.

[Cassie Jones (1gr8muggle)]

Saying a prayer for Sharlah and Bekah. Hugs to all of you.

[THAT-GIRL]

So sad to hear about what that little girl going thru... my prayers and god's blessings to Bekah and all family... it WILL GET BETTER !!!

[cstaff]

Such sad news but I continue to pray for healing and for strength for all the family and medical staff. There is a reason... and we'll find out... praying with you all...

[ValerieP]

So very hard-you, Sharlah and of course Bekah are in my thoughts...

[digigrandma]

My heart just sank and feels so heavy as I read this. I'm sorry......It's like Sharla is trying to be strong for all of us reading this. Please know I am praying for Bekah's recovery and strength and courage for her mama, papa and all of your family.

[connieg]

I was just wondering how Bekah was doing, so sorry to hear things aren't going so well. Will continue to pray for her and your family and a speedy recovery.

[readstoomuch]

Maureen, I am so very sorry that little Bekah is having to go through all of this. My prayers are with Sharlah and Bekah and your entire family.

[esther_a]

Oh, this is so tough! What difficult decisions to have to make.

[whatnext]

an unimaginable trial for everyone, but especially for that little love. wish there was something i could do to make it all right. so much stress. so much heartache. how brave and strong everyone is being. such amazing people. God help you all.

[kathleen.summers]

Originally Posted by Joey_M

Oh my stars this makes my heart heavy. I will keep you all on my prayer list. I will hug my kids and tell them how much I love them. I will be more patient, more loving, more Chirst-like. Your message urges me to be a better person as our time here is short. Thank you for this update, and know that you and your family are being lifted up!

Praying.......

Couldn't have said it better. I am keeping you and your family in my prayers too, Maureen.

[quilter422]

you all continue to be in my prayers.

[Aino]

Oh this is so so sad. I shudder at the horrific situation they are in and admire how they are dealing with it. I will say a prayer for Bekah and her family.

[KerryMac]

Oh my. No one should have to endure such things. Especially not a precious little child.
My thoughts have been and will be with you and your family, Maureen.

[katie pertiet]

I'm so sorry to hear this Maureen, I hope things turn for the better this holiday season.

[Scrapbird]

Maureen, I think about Bekah and your family so often, and I hope that things go better soon.

[Chris]

This is sad. My prayers are for Bekah and all of you.

[justmp]

Continuing to pray for Bekah, her family, and those that are taking care of her.

[annaaspnes]

In my prayers Maureen!

[deanie]

I'll continue to pray for little Bekah, the doctors and particularly her Mom. It is very difficult having to shoulder the burden of the day to day care. Kudos to her.

[DebbieHodge]

Oh, Maureen, My thoughts are with you and Bekah and Sharlah and the rest of your family.

[maureenreynolds]

Thank you all so much.

As many of you here know only too well, some of the hardest part for the family is that feeling of helplessness as someone you love suffers. It really is a lesson in patience, and a reminder to us that there are reasons for everything, even when we can't see them.

I've often been reminded of the tapestry analogy...all those dark threads to add depth to a masterpiece. In digi-speak, somehow in this saga, I don't like these heavy 'drop shadows' right now.

[Shannamay]

So distressing Maureen, I am so hoping that the next few days bring better news for this little family.

[echogirl]

Maureen, I am so very sorry for all your family has had to endure. My prayers are with Bekah and your family right now.