change of plans again

monday I went into Huntsman to see to see the genetic councilor and to have labs drawn. The councilor was great and we gained a lot of information. The labs were disappointing. My platelets are still too low and so they rescheduled my treatment from thursday to monday the 30th. It's always hard when we have to stray from the plan of attack but I need to be strong to have the best results with chemo.

A quick update

Marilee has had a pretty good Saturday and Sunday.  Her headaches had lessened and she is feeling pretty good.  Tomorrow she goes down to the Huntsman Cancer Center to meet with a geneticist to do whatever the do and to see if they can track down were it came from and what to look for in future and other things.  She will also get her blood tested and if she needs something extra like blood or potassium they could do that tomorrow with the hopes of getting everything lined out for a treatment on Thursday.

Jenna has also had a couple of good day as the incision heals on the back of her ear and the drainage stops.  She was able to wear her glasses this evening which certainly helps her and makes her feel better.  We were doing some paperwork last night and she got her first glasses when she was two and know she is twenty one so when she doesn't have them on, she does look at little different.

Looking forward to a good and productive day tomorrow.

Blood and Platelets

It is about 5:30 Friday night and we are almost done here at the Huntsman Center. Marilee has gotten one unit of platelets and two units of blood. She said that her headache and neck pains have gone away for the most part so it is good to get these done. As always, Marilee has to test the system so after a couple of hours of taking her blood for typing and matching, the nurse came back and said that since the last blood transfusion that her body had developed an antibody against her blood or something like that and that it would take from 2.5 hours to 2 days to complete the blood testing and matching. After a couple of hours they came in with the blood so it wasn't quite as bad or long as we thought it would. She has gotten her day filled with watching HGTV, one of her favorite. I think that we have watch the same episode at least twenty time. As I write, the nurse is here telling her to get out of Dodge so we are going to do just that.

Thursday Followup

A short followup on the home front situation. Jenna has done pretty good on recoverying from her surgery. She has lost some of her hearing in the ear that had the surgery so she is reading lips as much as she can but her ear is too sore for her to wear her glasses so she is struggling a little bit. We will have to learn to be bit more patient with her inability to hear. We think that she has been using selective hearing anyway. She has a followup visit in a month and they will test her hearing and then we will make some additional plans for the next ear surgeries. Marilee has been doing pretty good the last few days. She has had a headache the last two days and they did drawn her blood this morning. Katie called back and said she thought that she would need to get some blood and soon after Huntsman called and scheduled her for two units of blood and a unit of platelets on Friday morning, so with the blood typing and matching we will have a full days at the infusion center. This hopefully will get her ready for the next chemo treatment that is currently scheduled for next Thursday. Ryan made a quick trip to Monticello today and will go to Manti on Sunday for his cousin's missionary homecoming report and then back to Layton for work. Max somewhat invited himself so go with Ryan so that he could maybe play with Ryan's two large Lego battleships. Both Max and Ryan are addicted to Legos. It is quite a bit quiter without the boys here at Kelli's. Beans doesn't seem to mind being the only child. The storm didn't make much of a lasting effect up here in Layton. It was a rain and snow mix last night but clear and dry most of today. Ryan said that he didn't have any weather on his drive home today. Thanks to everyone for everything that they do including your prayers, thoughts, and all else.

Jenna Update, Etc

It is today that Jenna had her surgery on her other ear here at Primary's Children Hospital. We had anticipated an out patient surgery and have her back at a hotel room for a quick recovery. Surgery took almost four hours and it was more in-depth that we had anticipated. They were going to patch up the permenant hole in her ear drum, some scraping and cleaning of some of the bones and be done. The patch in the ear was disquised by some of the infection and scaring and it was much bigger than the Doctor had thought and which was not picked up by the CAT Scan. In the end it turned out to be much like the previous surgery in November in which they had to remove the two bigger bones in the ear but they are hopeful that they were able to maintain the stirrup bone so she will have some hearing left in the ear. As with the other ear, they will have to go back into the ear in a few months and see what they can do to do to rebuild things. She was such a champion today and is still trying to wake up at this time. She misses everyone and will stay in the hospital overnight. They hope to remove the drain in the morning and then they will see if she can be released. I think we are in the same room that we were in last time so it is almost like home again even though it is not home. The staff is so good and Dr. Munz is so good and kind. When he came into the waiting room to talk to Ryan and me he just sat on the floor with pen and paper and drew pictures so we could understand what he did. He said it was good that we did the surgery when we did because four to six months it wouldn't have been good. We hope that all will work out that in the end that we can her ears fixed up and some hearing restored for her. Marilee has had a couple of pretty good days and I am sure she feels like she should be here taking care of Jenna. She is much better at Kelli's recovery and staying away from all the germs and stuff. She had blood drawn yesterday and the nurse reported back that everything looked pretty good. She has another treatment scheduled in a couple of weeks and one more in February. Jenna has talked to her a couple of times on the phone and will want to do again as she totally wakes up. Pete was able to come back from his month of work in California two weeks earlier than he anticipated. Max and Jillian were so glad to see him come home. They do love their dad.

The week in review

It has been an up and down ride since the last post. We tried a new treatment consisting of a 3 day course of dexamethasone to follow the chemo to aid in the nausea, but it backfired and made me very ill. In the course of the week, I was in the Davis hospital overnight night at the Huntsman Acute unit for a day. I hadn't been able to keep anything down for days and the anti emetics weren't working. Finally that seems to have resolved although I have to be very careful what I eat. I have a great Home Health Nurse named Katie who comes 2xweek or more if needed and gives me fluids and meds here when we can. I am in good hands
There have been good things. My Mom came up from Moab on Thurs and is staying close by. It's fun to have her here to visit and get good back rubs. I love getting cards and texts from friends and family and am so grateful to all of you to pray care for all of us. We have such a wonderful world of friends and family. I wish I could get back to each of you personally.
Jenna is doing well and goes t o Zumba class 3 x a week. She loves it. She is such a big helper and is always checking in on me. She loves to keep things tidy and is a big help.
The grandkids are the life of the party. It has been so fun to be here with them all the time and see how fast they grow up. We have all been celebrating Jillian being an official "big girl" with Princess panties to boot. Max goes to preschool 3 times a week and he is growing up so much. He turned 5 on New Year's Day. He loves that the whole world celebrates his birthday.
Today is a good day. Mom and I are going through some of the cards and letters I've received and then a ride in the car. That's about the extent of my energy for the day.
Thanks again to all of you.

It's Good to have a Plan B

It's the day for my Neulasta shot and we had made arrangements to get it at the Centrville clinic to save going clear in to Huntsman. Calls were made to make sure that they had it and all was a goal. We arrived at the Clinic at 10:00 and after finding the orders they found the shot, but it was expired in Nov. Kelli forgot her phone and address card with all the Huntsman numbers at home. Ryan was picking up Jenna from Zumba class and wasn't home to get the number for us. We decided to head to Huntsman, hoping they could help us quickly and get Kelli back home to work at 1:00. Long story and funny to boot,
I feel great today. I am going to have a nap right now and hope to cont with the good days.
Thank you all for continued prayers and love.
Marilee