A Long Week, Already

It has been a long week already and it's only Wednesday. Yesterday was especially long. Rebekah was pretty sleepy before our appointment at clinic. She would doze off and then wake up a little while later kicking and jerking around and screaming and then settle back down and doze off again. After her blood was drawn at clinic, she wanted to be in Mom's arms most of the time. She was very wobbly on her feet. She wanted to drink water from a regular cup, but wasn't doing it very well - she spilled a few times, once all over mom.

When doc came in, he checked her ears first. Rebekah insists that he check her ears first. He has never had a kiddo who actually wanted his/her ears checked always - most of the time they don't want them checked. When he looked in her mouth, he hurt for her. Her mouth is pretty sore - she has quite a few sores (ulcers) on her tongue and throughout her mouth (especially on the left side where the radiation is hitting most). He wanted to know how the morphine was working for her and ordered her some for her while we were there. He said that after looking at how sore her mouth was he HAD to do something for her. He suggested that we keep the morphine scheduled - giving it to her every 4 to 6 hours whether it looks like she needs it or not.

Her Hemoglobin was low enough that he wanted to give her a blood transfusion. That takes at least another 4 or 5 hours. At that point, we knew that Grandma M was going to have to leave home for her appointment before Mom would get home. Dad knew that he could take care of her if he had to. He talked to Grandma A and she came out for a few hours. Sarah slept for part of the time.

We took the paperwork over to "Day Treatment" where they do the transfusions and then went to get something to eat. It wasn't even 11am, yet, but it is tough to get away once started and it takes about an hour or so before the blood comes up from the lab. Rebekah really didn't want to eat and continued with the dozing and then screaming and flailing around cycle. Pastor Dale, who had been trying to make it out to pray with us had talked with Dad about coming to the house in the afternoon, but changed his plans and came down to the hospital instead. His visit was appreciated.

During the transfusion, she spent much of the time resting or snuggling with Mom. She played for a little while, but her energy level was definitely low. She wouldn't eat or drink much either, despite how much Mom tried to get her to eat or drink. She was fighting a sick stomach too.

Grandma C stopped in just as we were getting ready to leave. Rebekah felt so bad that she didn't even want loves from Grandma. That is feeling pretty bad.

Once home, Grandma A was still at our house. She had brought Rebekah some books and Rebekah wanted Mommy to read some of them to her. Despite how tired she seemed to be, her eyes lit up with some of the books and for a few minutes she looked happy and her normal perky self. That quickly faded and we put her down for a nap a little before 5pm.

At 8pm, she was still asleep. We got her meds ready and gave them to her in bed and let her go back to sleep. Sarah went to sleep before 9pm. It was sure nice to have both girls in bed and asleep before 9pm. Mom and Dad were able to get to bed before too late.

She woke up once during the night (a little before 4am) and both Mom and Dad loved on her for a few minutes and she went back to sleep.

Today was a Radiation only day. She wanted to be in Mom's arms or the anesthesiologists arms or the radiation tech's arms. She is still not feeling too well. Mom gave her an anti-nausea med before leaving the house, so that she wouldn't have problems with an upset stomach.

After treatment today, the anesthesiologist mentioned that she may want to prescribe a medication for Rebekah to help dry her mouth up a little (she has too many secretions and she's concerned that it is becoming a problem) that we would give to her before heading to the hospital for radiation. Unfortunately, the radiation can dry her mouth, so there is a little bit of a fine line. She was going to do some checking and decide for sure what to do. We probaly won't have it for tomorrow, but maybe for Friday.

She really didn't want to wake up this morning from the anesthesia. We had to hang out a little longer than usual until the nurse could see some eyes and some purposeful movements. She slept most of the way home and wanted to go to sleep once home. As I type, she is still sleeping.

Also, as I type we have drywall going up in the new room. It is really cool to see. It is looking much more like a REAL room. We are getting more and more excited about it.

Tomorrow morning they will do a cat scan after radiation. We'll have to walk over to the hospital for the scan and it will take a little bit more time than normal but not much more than an extra hour (if even that). The cat scan will be used in preparation for the last 6 radiation treatments which are "boosted" and directed at the area where there was any sign of tumor remaining at the time of the second round of scans (after 9 weeks of treatment).

Thank you for all the prayers and the comments. It is helping and encouraging us.