Visit Rebekah's Page to get updates, read messages and send messages to Rebekah and her family through comments. This is a public "diary" of a family whose little girl started a battle with inoperable cancer in April 2005. In December 2007 our house burned down. And in September 2009 Mommy was diagnosed with a terminal disease (a genetic form of ALS) that took her to Heaven in July, 2011, leaving Daddy and two young girls to make it on their own. Over several years of ups and downs, you will get into our hearts, minds and souls as we share joys and sorrows. It can sometimes be very difficult to read. We hope it is also uplifting. Please find joy in what you read here.
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Monday, December 12, 2005



Monday Night In The Hospital

I'm going to make this brief, because I'm tired and crabby, I have a daughter who is screaming at the moment because mommy is not letting her have her way and it has been a long day.

Her counts were good enough to be admitted. The hospital ward is full, so they put us in the "isolation" room. This room is small, no room for a rocker chair, and no shower. When we got here, there was a regular adult bed in the room instead of the toddler bed that we usually have, so we had to wait for that to be switched out. They put a blind on the window in the door a month ago, which was broken when we got here. The sink in the ante room doesn't work. The internet connections in the rooms are not working, so I have to use dial up. I can receive email, but I have to go through a bunch of hoops to send email. At 3:00 this afternoon, Rebekah threw up all over everything. We called for housekeeping and they still have not been here.

This morning, at clinic, the Oncologist and I discussed the eye procedure scheduled for this afternoon. They were planning to do it in the room using Versed and Fentanyl. I didn't really think it through to realize that she needed to have an empty stomach and had been feeding her throughout the day. After I got Rebekah cleaned up from throwing up, the Social Worker told me that she was supposed to have been without food. Uugh! She was checking with the eye doctor to see if he was still willing to proceed. We went ahead with it.

The exam went reasonably well. Rebekah cooperated mostly and the doctor was able to do most of the exams that he wanted. The good news is that there really isn't anything that needs corrected immediately. The tear duct can be corrected later, probably after chemo is done. We need to watch for signs of infection, but otherwise it can wait. We know that we will need to have an ongoing relationship with the eye doctor, because of all the potential issues from the radiation.

Chemo wasn't started until 9pm tonight. It needed to wait until after the eye exam and then it was the middle of shift change, so they put it off. Usually, they will try to start each days' chemo 2 hours earlier than the day before, so that we can leave earlier on Saturday. However, 2 hours earlier puts it right at shift change, so I don't know what will happen.

It has just been one of those days where nothing seems to be going well and I've been in tears several times.

17 Shared:

At Monday, December 12, 2005 11:45:00 PM, Anonymous Anonymous Left a thought...

When I read your entry, it brought back bad memories. I have had addmissions like yours and know what it is like. The first day is always the worst. Somehow, the next day always got better. Why is it your responsibility to "remember" to unhook the "food" for sedation when you are in-patient? The nurses CAN hook up chemo during shift changes, they just don't want to. Just think, only a few more visits and you will be done! People used to tell me that and I never really believed it. It will come sooner than you think. It is two weeks before Christmas and you are stuck in the hospital sleeping on a bench. You have been doing it for MONTHS! It is OK to cry and cry and cry. You hate it and your daughter hates it and that is OK. You are doing what you need to do to save your daughter's life and you will look back on it and wonder how you got through it. You are doing it with courage and grace and endless love. I will say extra prayers tonight for you to have a better day tomarrow. We will be in the hospital on Wednesday if you are still there and want visitors.

Fondly, Kathi O'Brien, Madeleine's mom
KLOBRIEN@usa.net
caringbridge.org/visit/madeleineobrien

 
At Tuesday, December 13, 2005 2:43:00 AM, Anonymous Anonymous Left a thought...

Oh, Frances! I'm so sorry your day went so badly. I say "Ditto" to everything Kathi said in her post! Hang in there and know that there are many people thinking of you.

 
At Tuesday, December 13, 2005 3:36:00 AM, Blogger Alison Left a thought...

Frances, let those tears come! Don't keep them in. What you are feeling is sooo real and you need to feel free to let it out. You are exhausted physically and emotionally and yet you continue on.
My prayer is that you will feel encouraged and supported even though those of us far away can do little more than pray.

 
At Tuesday, December 13, 2005 3:44:00 AM, Anonymous Anonymous Left a thought...

I'm sorry you had a bad day!
will be praying that thing go better today!
hugggs
janice

 
At Tuesday, December 13, 2005 6:54:00 AM, Anonymous Anonymous Left a thought...

I can only cry tears of frustration for you dear mommy. I pray that the rest of the week will go so much better for you and the rest of the family. God wrap his comforting grace around you. I pray for a huge portion of God's spirit of peace and mercy to pour out on the staff and the patients at the hospital. That the Spirit of Christmas, His perfect love, prevail in the hearts of everyone.

 
At Tuesday, December 13, 2005 8:19:00 AM, Blogger mommyguilt Left a thought...

I cannot speak from the same experience, but having gone through some horrible horrible experiences and having reached the point of maximum stress, I can empathize. Don't you even fret about letting the tears go more than once. Kathi is right...you and Rebekah are both so tired of this and you are busy being strong for HER too. Let us be strong for you. You take care of Rebekah. There are so many of us here to be your strength. We pray for you and Rebekah all the time.

 
At Tuesday, December 13, 2005 8:43:00 AM, Blogger Corry Left a thought...

Matthew 11:28
Come to Me, all you who labor and are heavy laden, and I will give you rest.

My prayers are with y'all. May you find rest and strength and may all these tribulations be over soon. God bless y'all.

God's Grace.

 
At Tuesday, December 13, 2005 9:30:00 AM, Anonymous Anonymous Left a thought...

Frances,
I just read your entry this morning and I totally understand! I remember so many admissions JUST like that where NO ONE seemed to know what was going on where we were supposed to be and every one blames everyone else! That's one of the most FRUSTRATING things about this whole thing...the BLAME GAME...just once I would like to hear, "Oh, I am so sorry...we messed up! We made a mistake!" That would be music to my ears.

I guess it was better that Josh had a meltdown and we didn't come to visit you yesterday. We will be in on the 19th and maybe we'll see you then. I know Kathi will be in too, so I'd like to see her also. Just like Kathi said, Hang in there. It will ALL be over before you know it. I remember pinching myself and NOT really believing we were DONE with chemo. But then we were consumed with his other problems...esophagus and trachea. Now we are truly at a lull and my emotions are all over the place. But Josh LOOKS AWESOME, he's doing great, he's happy, full of energy, laughing, playing practical jokes and even getting into trouble!!!

My prayers are with YOU and Rebekah this day. I hope it goes MUCH better today.
Love,
Joshie's Mom,
april

 
At Tuesday, December 13, 2005 9:43:00 AM, Blogger Katie Left a thought...

Praying that things will settle down, chemo will go smoothly, and you will get some much needed rest and relief from stress

 
At Tuesday, December 13, 2005 10:27:00 AM, Anonymous Anonymous Left a thought...

Frances- we love you and are praying for you for strength and endurance! The boys ask to pray for Rebekah throughout the day! Kathi is a wise woman who has gone through similar situations. I agree with her statement, "You are doing it with courage and grace and endless love." Hang in there and grasp on to God's word, perfectly stated by Corry, "Matthew 11:28
Come to Me, all you who labor and are heavy laden, and I will give you rest." Restoration will come and you too will experience a lull like Joshie's mom- life has peaks and valleys- it is our consistent relationship with God that gives us strength through it all! Even when we feel alone, remember that beautiful poem Footsteps and know that He is there ALWAYS!
Love to you, Tiff, Mark, Michael and Jacob

 
At Tuesday, December 13, 2005 11:36:00 AM, Anonymous Anonymous Left a thought...

Frances, your strength and presence of mind amazes me. May your flowing tears help ease some of your frustration and pain.

You are carrying so much. Surely it feels like you will break. But you are doing it. You are getting through each day somehow. And you are there for your little girl and the rest of your family.

This is a success story, Frances, and the credit belongs to you and your family. You have made it so. And you will see it through. I know it.

 
At Tuesday, December 13, 2005 11:40:00 AM, Anonymous Anonymous Left a thought...

Hi Rebekah and family
Sending big hugs and hoping for the best for you.you're always in my prayers

 
At Tuesday, December 13, 2005 11:48:00 AM, Blogger steve Left a thought...

Hang in there Francis... there is so many people praying for you and your family. I echo Tiff, He is there walking through this with you guys... ALWAYS... EVERY STEP

 
At Tuesday, December 13, 2005 12:06:00 PM, Anonymous Anonymous Left a thought...

I stumbled across your site a few months back and have read all your posts. I haven't posted until now, but I feel compelled to now. I am so sorry that you and Rebekah had such a hard day. I agree with everything that the first poster said. Of note, I am a RN at OHSU in the neonatal ICU. So speaking from a nurses point of view, the Chemo CAN be started during shift change it just might be a hassle, BUT the pt comes firts not our ease! So stand up for your daughter and demand that it be done. I hope that the rest of the stay gets better. Hang in there.

 
At Tuesday, December 13, 2005 1:53:00 PM, Blogger Di Left a thought...

Just try and be strong.

 
At Tuesday, December 13, 2005 3:13:00 PM, Blogger Aggiema (Michelle) Left a thought...

Just thought I would let you know that my 8 year old daughter has taken it upon herself to be sure that Rebekkah is remembered in prayer everytime our LifeGroup (small group Bible Study on Sunday Nights) There are 33 people in TX praying for Rebekkah and asking for updates every week. God bless you and I hope things get better soon!

 
At Tuesday, December 13, 2005 3:18:00 PM, Blogger JodiTucker Left a thought...

Praying right now....love,Jodi

 

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