Post Transplant for Bekah Part 2

[maureenreynolds]

Well more than two weeks have passed since Bekah had the bone marrow transplant. Dick and I know there is nothing we can do for Bekah from this distance except pray and send little sillies but it is the adults we have worried about more. Thinking of things to make their life easier is the only way we can help. It has been especially hard for Dick as he and his son are both introverts (tho Dick is a Chatty-Cathy compared to son Rich!) and my engineer is a big-time problem solver. This 'problem' just needs time to resolve, not any solutions he can offer.

The strain on a marriage can be brutal and we don't want to see theirs crack. A lot of mothers go through this but we have been hard pressed to lighten the load much for Sharlah. This post CaringBridge / prayersforbekah / Welcomereally got to me with the loneliness of Sharlah and Bekah being in Tucson while Rich, Michael and home are in Mesa. Day 18 has a 'nice' picture of Bekah sitting up and playing, which is great to see.
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Hi. I am sorry it has taken a few days for me to update Bekah's web-page. The computers here have been having problems. I get on and then it shuts down while I am in the middle of working.

Bekah is in relatively good health considering the circumstances, but still we do not have cell growth. Please keep praying!

I have been lucky to meet 3 other BMT families here at the Ronald McDonald House. Their children are at different stages of the process, but it is nice to talk with them. Some of their stories are overwhelming. I try not to think that some of these same things could happen to Bekah, but it is a very real possibility. Please, please keep praying for Bekah's health to return.

I think I am emotionally drained. I know Rich is tired and drained too. I feel badly because we really don't even get to see each other. It's like we pass each other and take turns with Bekah when he is here. Michael has a cough so he didn't get to see Bekah this weekend. Bekah was so sad, but understands that if he gets her sick it means a longer stay IN the hospital. I am here alone so much of the time, that when my grandpa and uncle stew got here, I just cried. It felt so good to have a huge hug! That's just what I needed! I know they are only here for a few days, it is so wonderful to have them here supporting us. It is the boost I needed to keep my spirits up.

Thank-you Sage, Jennifer & Isabelle, Gayle & Steve, Michelle A. and Shannon A. Bekah got your gifts and loves them! (That was so nice of you.) I also have hung up each of the cards she has received from everyone on her hospital wall. I read each card she recieves- to her and she always asks..."Do I know them?" How wonderful it is that she is so loved! While Bekah really does love these (and we are grateful too!), the real gift to us is your constant prayer. I know that it makes a difference in her as well as us.

[earlofoxford]

Maureen, you're so right that the strain is not limited to the physical aspects of this experience. I am praying not only for Bekah's return to good health, but also for strength, comfort, and peace for Sharlah and Rich.

[Chris]

I wish I knew words of comfort, or just even words to say. Just prayers and thoughts in my heart for the whole family.

[sawdust]

Running on nervous energy is not good for anyone, but what else can you do right now. Expecting great news any day. We all continue to pray for all of you.

[maureenreynolds]

+20 almost 3 weeks now...
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It is day 20 after the transplant. Bekah has 100 white cells! Dr, Graham says not to get excited, but it is a start. He is still planning on doing the bone marrow biopsy tomorrow if she is the same and doesn't show any improvement. Please pray she will start to have cell growth and not get any sickness or infections while we wait. She is incredibly vulnerable to serious infections.

Grandpa and Uncle Stew left yesterday morning. I was so sad to see them go. It was wonderful to have them here. Grandpa is doing pretty good - considering he just had one of his kidneys and tubes removed.
lots of love~Sharlah

[cstaff]

Well... 100 is sure better than zero so... we continue to pray... go Bekah!

[maureenreynolds]

Even better news!!!
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Bekah has 500 White cells! whoo-hoo, whoopie, or 'Hot Dog' (as Michelle would say)! I am hoping her ANC is coming up too, but I wouldn't be surprised if it is at 0 still. Doesn't matter yet.... white cells up!!! yeah!

I will use Travis's quote today...." I can do ALL things through Christ who strengthens me. " Philippians 4:13 I know this battle isn't over yet. I know that Graft v. Host could set in now or there could be other complications, but I feel so happy the Lord has heard all of our prayers and blessed Bekah. She is in such good spirits. You wouldn't know everything she has gone through just from looking at her. It is so amazing! What a blessing, one that I am so very grateful for. Thank-you God. Sharlah

[quilter422]

jumping up and down and cheering for Bekah and all of you! we continue to keep you in our prayers.

[katie pertiet]

such good news Maureen!! Thanks for the update!!

[earlofoxford]

Oh, this is good news, Maureen -- I'm so glad to hear it. Prayer is powerful.

[digigrandma]

I'm so glad you keep us posted about Bekah so we are reminded to keep her and her family and you and your dh in our constant prayers. I know you feel helpless at times, but, what you are doing to keep the prayer vigil going is important, Maureen.

So happy for the 500 white cells!

[Cassie Jones (1gr8muggle)]

This is wonderful news! Praying for continued improvements for little Bekah!

[Aino]

So happy to hear your updates. Words seem so futile under such circumstances. I wish Bekah and her family continued health and recovery in all areas of life. God bless.

[sawdust]

Making a "Joyful Noise" and doing my "Thanksgiving Dance" Woowee! I am thrilled!! Praise God. Expecting and looking forward to even bigger counts!!

[KerryMac]

Such good news for the family! I'm so happy to hear this and am sending positive thoughts their way for continued improvement.

[maureenreynolds]

Another good report with a fun outing planned. I hope they made it today! I've been over in the Chat Room all day and my eyes are saying No More.
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+24 (after transplant)

Photo of Bekah holding her courage beads. They would only give Bekah a handful of some of the beads because she needed too many. (example hospital stays...one a month instead of our 17 times. lol! I wish!) However, they did let Bekah have all of her transfusions beads...to date 55. Holy cow! We only count red cells and platelets, I haven't counted IVIG-even though, that too, is a blood product. Transfusions are the small red beads. All the other beads stand for the other things she has gone through- chemo, surgeries, radiation, biops, tests, pokes, sickness, good and bad days- and more. I have a list. She is so so so proud of her courage beads. What a wonderful idea!

Bekah has 700 white cells!!!! I think I am in shock. She has hardly had any white cells and a zero ANC since June. Wow! The power of the Lord! I feel so blessed that we still have our Bekah. A normal white cell count is around 15,000 and ANC is 3,000. So we are moving in that direction! I can't stop thanking the Lord.

I was talking to Caterina, from COLES Foundation, and told her that there are so many times I wish that we could go back when Bekah was healthy, but then I think of how close we have become with God and I wouldn't want to change that. I would like to think that I would feel the same way no matter what the outcome, but I guess I wouldn't really know unless it was different. I praise God it isn't and thank him for the gift of our daughter.

My friend Kate is coming out today with her Aunt. Kate is the one who set up this website for me. Michael still has a cough so he won't be able to see Bekah again. So we plan to take the kids to the little zoo here. I haven't told Bekah because I don't want her to be sad. On the other hand-------Great news!!! The Dr's think that Bekah will be discharged on Monday to come live at the Ronald McDonald House! whoopie! We still have clinic 9-4ish everyday, but eventually it will ween off as she needs less and less blood products and meds in the next 2 months. What a wonderful thing! (Still can't stop thanking the Lord- you may get sick of me saying it!) lol.

[cstaff]

what grand news... we continue to pray!

[Vanilla Scraps]

I'm so pleased her white cells keep going up - so exciting. Hopefully the ANC count will do the same soon.

[sawdust]

Such wonderful news! Watching each day for her new increased count! God is good. I am offering prayers of thanksgiving as well as prayers for continued growth!!

[justmp]

Continuing to pray for sweet Bekah and all of you!

[digigrandma]

Saying a prayer of gratitude for Bekah's good news and she will continue to be in my thoughts and prayers.

[connieg]

How wonderful Maureen, so glad Bekah is making progress!!!!! I will continue to pray for her and your family.

[maureenreynolds]

Bekah has now moved out of the hospital and into the Ronald McDonald House. How great is that!! She still goes to the hospital daily but they kind of now have a home in Tucson.

[earlofoxford]

This is wonderful news, Maureen! I know they are glad to have a little respite from the hospital and be in a homier environment.

[maureenreynolds]

This may be the last one for a bit since things seem to be progressing now...God willing. It's so good to hear some humor from Sharlah. But think of it...an entire night's sleep ( at the Ronald McDonald House), Sounds like having an infant with the accompanying sleep deprivation, doesn't it.
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We are at the RMH. Yeah! Bekah and I had a very hectic day yesterday with discharge and getting all her meds and home health. But we were able to sleep the entire night free of interruption! Wahoo!

She is still doing well. I talked with Stephanie again and her daughter is doing slightly better, but still pretty bad. I have so much faith in the Lord, but sometimes, when I talk with other people, it is hard for me to express it. I think it is easier for me to write about it, which is not necessarily a good thing. I need to be more open about how much I feel the Lord has heard and is helping to heal Rebekah.

The panty story..... I did some laundry last night, and had to hurry and get it out of the dryer before we went to pick up prescriptions. I dumped the laundry onto the bed, glad to be done with it. (Have I ever mentioned how much I HATE doing laundry?!) Anyway, Bekah was hooked up to her little pump on the IV.. I was carrying the bag because it is a little heavy. As soon as I walk out, I see..... my pink panties on the ground! They had fallen out of the basket (It was so full, it was hard for met to see over it. The basket was so full.... I didn't see anything fall out.) Sure enough, some guy had to step right over my pink panties to get into the laundry room! I sat there...then ran over to pick them up. Bekah yells..."Mom! Your pulling me! Stop!!!" oh, oops.... Forgot I was connected with her Hickman-Broviac. So I have to walk over real s-l-o-w to pick up my pink panties. They guy had heard Bekah yell, so he is watching me. The humiliation! So I throw them in our room. Totally embarrassed. Leave to go pick up the meds of the Px and McDonald's for food on the way back. Low and behold, who is sitting in the eating room when we get back????? I tried really hard not to look at the guy who stepped over my panties. I may have walked real sexy like if they had been sexy panties, but no.... not quite... just regular mom panties size large! LOL! I am no super Victoria supermodel!

[Chris]

That is good news Maureen, so happy for dear Bekah, such a strong child! I hope Michael is well.

[maureenreynolds]

Dick is flying out on Saturday so I hope he can do some father-son-grandson time and give Rich a spell. I think the pre-school has been the saving grace for Michael.

[jazzmatazz]

Maureen,

I've been a way for a bit, but am so delighted to hear how well Bekah is progressing! Truly a blessing from His hands!! Thank you so much for keeping us posted, and I look forward to the time when all this is just a faint memory for the whole family!!!