Post Transplant time for Bekah

[maureenreynolds]

Each day is a rough one with the anticipated unpleasant side effects. Being alive is still such a miracle though. I try not to worry about Sharlah tho, carrying such a load down there on her own. I hope she finds time to get some running in but I doubt it. Even tho I'm not a runner I know how much of a stress relief just walking is. Maureen

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+4
In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit Himself intercedes for us with groans that words cannot express. Romans 8:26

This is Sharlah's friend Kate We were fortunate enough to make the trip down to Tucson yesterday and see Bekah and Sharlah. We just missed Rich and Michael on the elevator! Sadly, Bekah was having a yucky day, but we enjoyed seeing her and got to hear a little laughter from her. She is still dealing with high blood pressure, upset stomach, etc. The mouthwash she has been using to prevent mouth sores is actually making her vomit, so they have let her discontinue that because it was obviously counter-productive. She isn't eating right now and I know Sharlah said they will begin IV nutrition tomorrow if that doesn't change. Mouth sores will eventually come and hair loss.

Everyday is a challenge, but each day is also one day closer to the day she will come home. We were able to take Sharlah to lunch and see the Ronald McDonald house where they have home-base. All of your prayers and well wishes mean so much to them! Please continue to pray that Bekah does not encounter gvhd, that these small cells are finding their way successfully to her bones and thriving and multiplying. Please pray for the strength of the family with Richard and Michael being in Phoenix during the week and Sharlah being on her own until they arrive on Fridays. Please also pray for the wisdom of the staff treating her. Most of all please pray for Bekah

On a side note, I was able to take a gift from myself and my mom to the little one next door to Bekah yesterday. Please also pray for her and her family as they fight their battle.

[donna goar]

Thoughts and prayers for everyone! Hope each day brings her a step closer to getting better and coming home.

[connieg]

Thank you for keeping us updated. My heart goes out to Bekah. When Kelly had her double blood cell transplant, she experienced the same things. The mouth wash actually does help with the sores, to bad it makes Bekah sick, maybe in a few days they could try again. Praying for a fast, uneventful, recovery.

[jazzmatazz]

Oh, Maureen. It is so hard to imagine one so young having to endure all this, but I'm praying for strength for Bekah -- strength for the treatment, strength in the recovery, strength of spirit. Thank you for the continued updates. Know you are all being thought of and prayed for.

[susiecw]

This sounds so terrible for her. At least everyday will bring her closer to a full recovery, but it's heartbreaking to know she's going through this right now. Prayers and thoughts are with Bekah and her entire family, and the little girl in the next room.

[THAT-GIRL]

My thoughts goes to that poor, but BRAVE little girl... it terrible what she have to go thru, but just remember IT'S ALL GOING TO BE ALRIGHT and she will put it behind... wishing for all of you stay strong...

[echogirl]

I wish her a speedy recovery in this fight. All my prayers.

[deanie]

Maureen, this must be so hard for you! Prayers all around here for Bekah, her family and the staff!

[maureenreynolds]

Bacon! It makes me laugh to think how important one slice of bacon now is and how much it means to everyone. :-) Maureen

This is Sharlah's friend Kate again. I wanted to let everyone know that Bekah was doing better as of this afternoon She ate a piece of bacon (yeah!) and was in good spirits following a visit from the tooth fairy! Please continue to pray for their strength, protection from gvhd, the multiplication of the stem cells moving through Bekah's body and for the good days to begin to overtake the bad Please also give praise to the Lord that they have made it to day five post transplant!

[maureenreynolds]

Good news is so GOOD, isn't it! Maureen
~~~~~~~~
Bekah had a wonderful day yesterday! The tooth fairy came and left her big bucks ($10...I thought Rich would do it during the weekend, but he didn't have any cash on him.) I told Bekah she was very lucky and the tooth fairy probably felt she deserved it after having to loose it in the hospital. She said..." Yeah, I guess I am pretty lucky." !!!! (What a wonderful attitude she has!) I also told her that I would have to borrow money from her because she had so much. She was NOT falling for that one!

Thank-you COLES Foundation for the balloon! Bekah loved it and it is tied onto her bed. Jaiah, the little girl next door loved hers too. She is leaving today. I guess she is doing good so they are letting her go to clinic during the days- mom was here all weekend getting ready to move her. Yeah for Jaiah! Bekah was kinda sad because she was so looking forward to playing with her, but she understands too and was happy for her.

lots of love~Sharlah

[digigrandma]

Oh, how I admire the strength of Bekah and her family. You do what you have to do, but, such a long and worrisome journey on the road to recovery. So glad whenever there is bits of happy news.


Continued prayers for Bekah's healing.

[AllynD]

Good to hear she is so brave and strong. I pray for her continued strength and progress!

[bluelemur01]

I hope she continues to stay strong and that she improves day by day.

[anke]

what a brave and strong little girl and what a wonderful family! I will keep praying for her recovery! God bless all of them!

[Mary Rogers]

I have been thinking about this sweet girl....so much for anyone to deal with

[maureenreynolds]

I'm sorry I can't post the photo attached to this update. Dick said he would not have recognized her, she is so swollen from the steroids. I guess they decided to shave her head rather than just let the remaining hair fall out. Our surgeon friend said he couldn't think of any reason to 'have to.' It's hard to believe that there is a 3month 'recovery' time to go through all these bits of unpleasantness but if the final result is positive, then that's what matters. Maureen
~~~~~~~~~

Psalms 43:5
Why are you downcast, O my soul? Why so disturbed within me? Put your hope in God, for I will yet praise him, my Savior and my God.

We had to shave Bekah's hair off. * She was very upset* and asked if we would still love her.* I told her she was my most favorite little girl in the whole wide world. No matter how she looked, I would always love her.* We cried together, her for her hair , me for her hurt.

Once she got used to it, she was happy to pick out different hats that Kathleen had made and put together in a hat box.* What a wonderful idea!* Thank-you!!! Bekah wanted to know if Leah (Kathleen's daughter and Bekah's friend) helped pick out the fabric.*

~Sharlah

[connieg]

Maureen, I know with Kelly, it became a personal choice to shave her head, she just couldn't bare the hair falling out anymore. Kelly had thought about getting a wig from Locks of Love, but the cost, which suprised us all, wasn't in her budget.

[whatnext]

i think of Bekah and her family every day, Maureen. i can't even imagine what every second of their lives must be like. i hope that all this can someday soon be filed away as "Awful Time In Our Past," and that Bekah can grow up to forget that this ever happened.

[maureenreynolds]

Connie, that's right about the hair. It just was a mess. The photo on CaringBridge / prayersforbekah / Welcome is so sad but dear God, sleep is a such a blessing.
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+8

Bekah had a horrible day yesterday. I feel like I am strong as long as she is strong. She slept for most of the day when she did get up she was very sick. The doctor says this is completely normal which helps a little, but I still hate it all.

We had to shave Bekah's hair because her hair was falling out in clumps and was all over the place. They say it could take up to a week for it to come out and it may not all come out. She had hair all over her pillow, bed, clothes. I would touch her hair and huge clumps would come out. So we shaved it to keep it a little cleaner in the process. I don't want her to have to eat her own hair. yuck! I guess I wasn't very clear on that sorry.

Thank-you for all the wishes for Bekah's hair. She is very devastated and for some reason only wants Michael. I think Michael will confirm for her what we, the adults, can only tell her... that she is still the same Bekah. She has cried and written several letters to him. I wish I could whisk him out here today but we have to wait until tomorrow when Rich can bring him down.

Bekah started Neupogen last night to get the white cells to mass produce after en-grafting. She should only be on it for 3 weeks-maybe a month until her white counts go up. Then she goes off and works on them on her own. If the stem cells en-graft, then we hopefully will start to see counts in a week. I know they are en-grafting as I write!

lots of love~Sharlah

[Monique1971]

Hi Sharlah, I feel so sad, her hair...that must have been terrible and she already had so many terrible experiences. Why does such a little sweet girl have to be so sick. I hope she's gonna feel better soon. I admire your strength, it also must be so hard on the whole family and you must feel so worried. I keep thinking of Bekah, Maureen, you and your family. Big hugs!
Monique

[Joey_M]

Maureen, my heart breaks hearing abou sweet Bekah. I will pray for her and her family and you. I am speechless, but know that I will be lifting you up to the Lord.

**Hugs**

[justmp]

Continuing to pray for Bekah and for all of you! Thank you for keeping us updated.

[LauraBean]

Praying for Bekah and the whole family tonight, Maureen. So sad and so hard.

[jonipossin]

My heart and prayers are with you all... across the miles. I love the idea of a hat box full of hats!! What a good idea and fun for Bekah!
Joni

[bluelemur01]

hi Maureen, I just sent another small package to Bekah...I know she's not feeling well but hopefully seeing a few little toys will brighter her spirits even for a minute. I hope she's doing well & that you are, too!

[maureenreynolds]

Thank you so much Jennifer. Sharlah said yesterday was rough. Bekah has a blood infection, feels lousy and Sharlah just wants to hug and kiss her. Bekah wants none of that. I think Bekah is like me and Dick when we feel sick!

At least Rich and Michael arrive tonight after school so having her husband/Daddy will be good for both ladies. Michael will bring his own energy!!

[dugarner]

I wish I knew how to knit, I would knit her a bright rainbow-colored hat to wear. We are all so sensitive about our hair, but I hope she quiets down and understands it doesn't change a stinkin' thing about you to be bald. We have a young girl here in town who has alopecia, and she will never grow hair anywhere on her body. She dances ballet, and dances in front of audiences of hundreds, looking just as beautiful as all the other girls. Your eye goes to her naturally because she does look a little different, but then you just watch her dance, because she's so beautiful.

I'll be praying for the engrafting! Thank you so much for the posts. I think about y'all lots.

[sawdust]

Praying, praying praying for Bekah! She is such a strong little one. Infection will clear. Engrafting will start soon. I am thanking God now for her healing which He is giving her. I'm believing!!!

[maureenreynolds]

Boy, getting out of bed is a big thing now! I was so glad to hear about that. I'm thinking that every bit of movement is good and keeps Sharlah hopeful for more of the recovery stage. btw, lots(!) of smiley faces removed...well over the DD limit...which is a good thing. Maureen
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+13 (days since BMT)

"For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind." 2 Timothy 1:7 Rich and I get through one day at a time and try not to be fearful of what might be but have strength in what is.

Bekah is doing ok. They took her off of TPN because she was eating and what do ya know??? She stops again! She does try though. She ate a half a baby carrot... Poor thing. So they might put her back on again. They had to change around some thing in the TPN because of what it was doing. SO they did fix that. Sorry...Never updated that! (I think I am pretty bad because I forget to add alot of info in the pages.)

Bekah isn't feeling really sick but she isn't herself either. I can't figure it out. I don't know if it is she is depressed or if she just feels yucky. ??

Still no counts yet, but very hopeful some will soon come! I don't have any other real news to report. Oh...she did walk yesterday. They have magnetic chart and ask the BMT patients to walk 16 laps around the nurses station. That makes a mile. So we made a magnet with "Bekah" on it and bribe her $1 for every mile. Yes...we are horrible - bad parents and result to bribery for what we want! So far, her magnet has been used by other people. Not sure why...I mean are there other Bekahs on the floor? lol...so we just remember and put it back to where it was. Since she has been here she has earned $4 to go with her tooth fairy money. Yeah! We really only do 5 laps a day. Some days more other days less.

She still is fighting her blood infection. (That may be why she is yucky too.) My grandfather is home and recovering from his surgery so he thinks he will be feeling fine and is planning on coming to see Bekah this weekend! Yeah! My Uncle Stew, from Missouri, is flying to grandpa's house and they will both be coming out together. yeah!!!

I want to thank-you so much for your support. It gets so tiresome living in the hospital. I can't believe we have been there 21 days already. (Not to mention, we practically lived at Banner for 3 1/2 months as well!)

Thank-you for the gifts sent for Bekah. I went to the restroom and came back and someone from the hospital had brought Bekah a card, email message and a package. Everything was torn apart and opened. I know Bekah loved opening them all... and was busy playing with them! I always read the cards she gets and hang them on the wall. She has also received a couple crafts at the Ronald McDonald house mail that I have taken to her. Thank-you so much. I promise you that they all have been used and done! We can only do so much in a room all day and she absolutely loves them. So thank-you!!!

We are always thinking of our other CB friends out there. I hope you all are doing well and I am sorry I haven't been able to sign your guestbook on a regular basis since we have been in.

Lots of love~Sharlah

[maureenreynolds]

Ah some real life happens, and it's so nice to hear about the juggling that parents have to do. Not easy, but part of the normal life. Normal is good. Maureen (again, smileys deleted)
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+14

Bekah was doing well yesterday. At first it started out a little crummy but by evening she was talking and moving around some. Yeah! (She only wanted to do 3 laps though.
but she did eat some!)

I have two stories to tell you....

1st...Last night Bekah had to use the restroom and I was talking on the phone with my step mom. So she pulled her HUGE IV pole into the bathroom all by herself. (She has done this a few times on her own before.) The wheel got stuck and the entire pole with 2 brain controllers and 8 attached med dispensers and all the meds hanging came crashing down on her. I could see it in slow motion.....it landed on her head! Thank the LORD that Bekah had just received platelets! The Dr ordered another platelet count and it was 110 still. Hopefully, no eternal bleeding. She was fine after a good cry. I know it scared me so I am hoping it scared her more then hurt her. I did get lots and lots of hugs!!!!! (always a favorite thing for mommy.


2nd... They are having a hospital party in the clinic for Halloween on Friday. So I talked to my mother inlaw and asked her to please bring Michael up for the day. Bekah was so excited! She kept talking to Michael on the phone about the party and what they were going to wear. So happy on the phone. Anyway, Little did I remember, Michael's preschool class is having a pajama party that same day and the preschool was going to go around ASU campus and go to some of the parent's offices. So Rich (hubby) had emailed his co-workers saying that ASU preschool would be making a trick or treat trip on his floor (because that's where Rich's office is) for those wanted to participate. Michael was so excited they were going to go by his daddy's office. (I think Rich thought it was pretty neat too.) So here I made all these plans for Michael, and now I have to tell Bekah that I forgot and dad and I had to discuss this. You should have seen her! She sat there with a very nervous look and took each index finger and crossed them held them up to show me and said .."Oh.. I hope he can come. I amd crossing my fingers!" How could we not??? So Michael will be coming here and Bekah is thrilled. Michael is a little sad to miss his PJ party, but happy to go to Bekah's Halloween party. We are family after all, we all have to help eachother out!


Still waiting and praying for those counts....

We are so blessed with all your prayers and constant support. Thank-you so much. Bekah has received several gifts in the mail and I want to give a very big thank-you for those, but please know it is your prayers and support that mean the most to us...an even BIGGER thank-you! We truly feel so blessed and loved as we go through this process. I just know that the Lord is healing Bekah and helping our family grow closer in the process! Thank-you all so much for helping us get through this...There are so many people who have reached out to us during this difficult time! May the Lord bless you all- as you have us...lots of love ~Sharlah