What do you do when nothing tastes good?

Well, today was better than yesterday. She felt a little better but she still isn't eating much. Nothing tastes good to her. She has completely kicked her diet coke habit! We tried several different things today but nothing really worked. I got some rice and mashed potatoes so maybe they will taste good. She does eat a Gobstopper or two (small jawbreakers)! She even facebooked a little this evening. She and Dad are getting ready for bed because they have to be at the hospital at 7. She will have bloodwork, an echo cardiogram and the dreaded bone marrow thing.
I am leaving in the morning but Rae will be here in the afternoon. The Mr. and I will be back on Saturday to spend some time with them and to have church services if Mom isn't up to going.

21 Days

21 days or 3 weeks have passed since we were told that Mom had leukemia. Isn't it amazing how quickly life can be turned upside down. But this journey has really only just begun. I pray that the end is how we want it.
Mom had a rough day today. It seems that on the days she has to be at the hospital early (like an appointment at 7:00 am early) leads to a very rough day. Between having a hard time getting her medication on the right schedule, nerves, having to move at a quicker pace and tiring out easily just makes her sick. Tonight she has a portable IV because she is dehydrated. The only thing she was able to keep down today was 1/2 of a chocolate milkshake. I hope that tomorrow is better for her. There are no appointments so she will get to sleep late and can stay in her pj's if she chooses! Friday she has to have a bone marrow biopsy which is painful and she does not like having these (no one does). She was feeling a little better when I got here about 9 pm but wasn't looking forward to getting the rest of her meds down. She did, she is such a trooper.
After I got here, she went to bed and she and I spent about an hour looking at the cards I had brought from home (she enjoys all the cards. . .keep 'em coming!) and the Christmas ABC catalog. We even got a few Christmas gift ideas. I told her that she was going to have to do all her shopping by catalog this year.
She and Dad are now asleep and I will be joining the sleep world soon (hopefully I will be!). Thank you for your prayers, notes on FB, comments and cards. We all appreciate them so much. I will be here until Friday morning and then Rae will be here in the afternoon. On Saturday the Mr. and I will be back up here. Becca went home today. I think her family was ready to have her back.

Until tomorrow. . . .give those you love a hug and tell them you love them.

Mom update

Mom had a good day. She went shopping at Marshall's and ate some Panda Express and then took a nap!! She has an appointment tomorrow with her doctor (that would be the 6 ft 7 in doctor from Germany!) and we hope to get a "schedule" so we will know what will be happening next.
I will be heading down there tomorrow or Thursday because Becca is heading home. Rae is heading down on Friday.

A Short Note

It was great to see Mom smile so much today. She had lots of company today and even though it tired her out she really enjoyed it and was so glad to see everyone! I think she really enjoyed seeing her grandkids too, I know they were excited to see her!! She's eating a little more everyday and getting stronger. Tomorrow she has a day full of appointments and hopefully we find out when her next round of chemo starts.

This is from B's facebook update so I thought I would share. I didn't talk to them today since they had so much company. Thank you again and again and again for all of your kind words, prayers, friendship, love and just being there. We have the best friends and family in the world!

She's FREE!!!

Okay maybe not really free because she has appointments back at the hospital almost every day, but she is now asleep in the hotel bed. She feels a lot better and has decided peanut butter tastes really good!! We are in an extended stay hotel for now but hoping that we get a call from church apartment minisries tomorrow so we can get a one bedroom apartment for them to stay in. That's all I have for now, if I think of anything else I will add it later.

It's Becca here and I don't really have any good news to share. Mom has not been able to keep any food down today. They started her on phenagren before lunch. She was able to keep her baked potato soup down for 2 hours before it came back up. I guess you can call that progress. She is still not eating much and now she isn't drinking much either because it all makes her feel sick. The doctors are not releasing her today,tomorrow will be the earliest they will let her go and that in only if she is eating and drinking and keeping it all down. It all is getting to her, she is really down right now. She slept most of yesterday and today. Well, sorry I don't have better news to share. Hopefully that will change for the better tomorrow.

Okay, Mom started the doxorubicin aka red devil last night around 12:30. This morning when she got up and she got real shakey and nauseated but once she sat back down and ate she has been feeling better. There is talk that she is going to be discharged tomorrow so we shall see what happens. Dad is at his second class on how to keep the picc line clean and he has to take a test over it tomorrow... oh what pressure!! We have been so blessed that Mom has not been terribly sick while on all this stuff. The staff here have all been so nice and friendly and it really helps us feel comfortable. God bless!

Oh I also forgot to add that we found out yesterday that they found no leukemic cells in her spinal fluid!! Another blessing from God!

Becca

I spoke with my Dad this afternoon to check on Mom and she was sleeping. She finally ate 1/2 of a smoothy. She may be discharged tomorrow but will have either a bone marrow aspiration on Tuesday or another spinal tap chemo treatment on Wednesday. Becca and Rae took a road trip to the beach this evening but Becca may have another update later. Mom has had some company besides her husband and kids and son-in-law. . .my dad's sister, her daughter and my friend Amy have been by to see her. I have to say, we have got incredible family and friends because they are surrounded Mom in prayer and are available for us if we need them! Thanks everyone. We love you all.
Hope the next update is that Mom is out and will be home later in the week. Stay tuned to find out!! ~Giggles

What day is it??? I am losing track....

Okay, so I (Becca) stayed with Mom in her room last night because we thought she was going to start the "red devil" and we didn't. Found out after 1:00 am that she wouldn't get that until 1:00 am tonight, gotta love it. Anyway,this morning's been okay. Mom was washing her hair in the sink and giving herself a sponge bath when she started feeling nauseous. She didn't get sick but it was a close call. She is realizing she can't do a lot and that is getting to her. I just reminded her that once she is done with all this chemo she should start to feel a little better. Right now she is eating some breakfast which is good. Some foods aren't tasting so good to her anymore but the one thing that she has eaten every day is cantalope. Well as today progresses if anything else goes on I will let you know. Hope you all have a great weekend and God bless!

To send Mom a message

If you would like to send my mom a message, go to www.mdanderson.org, go to the Contact Us tab, look at the section labeled Patients, Friends, & Family, select send a message to a patient, then complete the rest of the info. Mom's patient # is 796664 and her birthdate is 04/27/1951. The message will be printed and taken to her room.

Okay, it's Becca here. I am sitting in Mom's room with Dad and Rae listening to Mom talk to Aunt Diane on the phone. The day consisted of getting her picc line, which she says feels much better than the iv she had, an x-ray to make sure the picc line went where it was supposed to go, and the a spinal tap this afternoon. She was a little out of it after the spinal tap because they gave her a sedative, which is always fun! Tonight she will start on a new chemo drug. The ones she has been on have only lasted 3 hours but tonights will last 24 hours. Right now she has to be flat on her back for 2 hours, and she is not liking that! Well that is the update for right now. I will try to update moe later otherwise you will hear from me tomorrow. Thanks to everyone for the prayers!

Good Morning - Day 2 of treatments

Day 2 of Treatments UPDATE:

Tonight Mom is starting an additional chemo. They call it the "red devil". It will take 24 hours for her to get finished with it. Please pray that this chemo will not make her too sick. So far she has been feeling good but we are afraid that might change tonight. Thank you for your prayers. Don't know if she has had her spinal tap yet. Last time I talked to her at about 4 they were getting close to doing it.

I just got off of the phone with my Mom and she sounded good. I went down to MDA yesterday and spent the day with them and I had a surprise with me! Lou Ellen went with me and Mom and Dad were both surprised to see their #4 daughter. We had a good visit but it so hard to see Mom stuck in bed with all of those bags of meds hanging around. She has already had her PICC line put in this morning and will be getting her first spinal tap with chemo sometime later today. Hopefully that won't be as bad as the bone marrow test.
Well, that is all for now. I am sure B will post more later or maybe Rae since she is going down there for a few days. Thank you all again for your thoughts, prayers and concern for my Mom. She is such an amazing woman and it is so wonderful to know that so many people love her as much as we do!!

Good afternoon all!! It's Rebecca again. We are sitting here in mom's room keeping her entertained. I asked her if she would like to say anything and she said, "I keep waiting for the hammer to drop and so far so good." She is still feeling good, even after the second round of chemo. We did find out today that she has what's called Philadelphia chromosomes and that means they have to add another medication to her regimen, at least it is taken orally. If anyone in the Houston area would like to donate blood, MD Anderson is needing blood.If you want more info just let me know and I can get it too you.

Well it's Rebecca here. I am sitting here with Mom and Dad and they have finally got her an iv going. Right now it is saline, nausea medicine and something to help protect her kidney. They will start chemo in an hour.She is trying to get some rest now so we are going back to the hotel.Will let you know how she is feeling in the morning.

We Finally Know What We Are Fighting

The diagnosis finally came today it is is Acute Lymphoblastic Leukemia or ALL. This means that there does not have to be any isolation! She will have eight treatments that will last 4 - 5 days at a time and will be every 3 to 4 weeks and will take around 6 - 8 months. She will then have some additional treatments that will be over the course of 2.5 to 3 years. This will include two "HOT series (not sure exactly what is included in this) and 2 spinal taps which will include chemo to keep the disease from going to her brain. She was more upbeat this afternoon when I spoke to her. They admitted her into MD Anderson so they could begin the first round of treatments. Remission for this strain is 80 - 90%.



Several of you have ask about an address for sending cards. Since she will be in the hospital for such short lengths of time, please just send cards to their home address. When she is having treatments, we will get them to her.



Thank you so much for your prayers, concerns and well wishes. I am going to see her tomorrow and I will pass on your messages.

Tuesday

Not much to report today. Dad has found temporary housing and he and Mom are staying there tonight. Mom's appointment tomorrow is at 2:30 pm. She said that she is still feeling ok, just tired. They were both ready to go to bed before 8:00 this evening!
Tomorrow we will find out for sure what strain we are dealing with and what isolation means in MD Anderson terms.

Thank you for your continued prayers and for following our blog. I chuckled this evening when I saw that Mom's blog has more followers in just a couple of days than I have on my blog!!

Good night all:)

Good News

Today Mom went to MD Anderson for more testing and more information. The doctors have changed their thoughts on what strain of leukemia she has. They are now leaning towards Lymphoidal Leukemia which has a higher chance of remission and a shorter initial treatment. She will be admitted on Wednesday and at some point on Wednesday, we will get confirmation. Tomorrow she doesn't have to be at the hospital so hopefully she and Dad will rest. They are staying with my Aunt K's (who passed away in May) sister.

Her tests today showed that the oral chemo has already started doing what they wanted it to do, her platelets had stayed level and the red blood count was up. She sounded more upbeat when I got to talk to her this afternoon. I pray that God continues to answer everyone's prayers.

That's it for now. Have a great night.

The Beginning

Mom went into the hospital on July 6th with a blood clot in her leg. On Wednesday we were told that she had leukemia and that we would be going to MD Anderson on Friday. This came a huge shock to us because my mom is hardly ever sick and she is such a strong woman (you have to be if you run a farm single handed). She was discharged on Thursday afternoon and she and my dad headed to Houston because her appointment was at 7:00 am the next morning. Later Thursday evening, my sisters and I headed there ourselves. Friday was a long day which unfortunately for my mom included another bone marrow aspiration (?) which are very painful. Leukemia was confirmed but the strain is still not 100 % sure but they are thinking that it is Acute Myeloid Leukemia or AML. She will be in isolation for 28 to 30 days while receiving treatment. We are waiting to see how visitation will be. We know that there can be visitors and you will have to put on a gown, mask, hair cap, and gloves before going in. She was given a list of meds that she would have to take in addition to the blood thinners that she gives herself. One of those is oral chemo which she began on Saturday. We finished up at the hospital on Friday at about 3:00 or so and my dad and I got finished (well almost) at the pharmacy at about 6:15 after being there since 4:40 waiting on her meds. Dad ended up having to get the chemo on Saturday. Saturday morning we got up and headed home. We stopped at ate breakfast/lunch at IHOP. The girls and I stopped at the VF Factory to get mom some more lounge clothes and/or sleepwear for her hospital stay. We worked on getting some loose ends wrapped up, my middle sis headed back to her family for a few days and we all hoped to get a good nights sleep. The last thing didn't happen for at least two of us!

This morning we all went to church, parted ways for lunch and met back up at my parents home (travel trailer because if you read my blog, you know that they are moved out of their house while the foundation was being fixed). We got all of her stuff together and got them on the road. It was really hard to say good bye. They got to their hotel and will start out tomorrow at 8:15 with more tests and to find out when she will be admitted. It will be Monday, Tuesday or Wednesday.

This blog will be written by myself, Giggles and my two sisters (they will have to tell you who they are when they are writing). We hope that we can keep you up to date on our mom and dad and that whenever you read this, you will say a prayer for mom (and us).

Hope you have a good night.

How Did You Come Up With Your Title?

Well, years ago we were on vacation in Colorado in my grandparents suburban and trailer. We took a scenic route my mom found on the map and as we started up we stopped and ask some road workers if we could get through with our rig and of course they said yes. Off we went on a 60 mile trek that took 3 hours or so!! It was such a bad road that when we got to the end, my dad pulled off on the side of the road, turned off the suburban and got out for a breather! Well, the road consisted of switch back turns where at times if we were meeting a car, they had to back up until we could pass. There were no guard rails, it was gravel, there was a trestle bridge that was not straight and it at one time had been a railroad route. We did find Cripple Creek which at the time was not a place to gamble. It was a really neat town where we went down into a gold mine called the Molly Kathleen Gold Mine and a really neat store called the Brass Ass which we have always called the Brass Donkey. We had a really good time visiting even if the trip was a little (ok a whole lot) nerve wracking. Now we tease my mom about our scenic tour quite often. When my sisters and I talked about doing this blog, we all agreed on the name because this journey we are beginning is like our trip down Phantom Canyon, we don't know how the trip will be but we have faith that we will make it all the way through and come out OK on the other side.

We want to keep you up to date on what mom is going through (and us too) and to ask you to pray for my mom whenever you read the blog.