A Good Week!

I first off want to tell you all thank you so much for your prayers, I know they have helped!

Last Tuesday Sept. 9 mom was scheduled for another MRI.  We were a little worried because she has been really sick and down for the last 6 weeks or so.  Because she has been so sick her depression has gotten really bad.  It was hard to know what to say to her because you just felt so bad for her.  It has been a tough couple of months for us all.  We have all been praying for her to start feeling a little better and to hear good news from the doctors.

Tuesday I went to pick mom up around 10 and I could see a definite change in her.  She was up and dressed and walking pretty well.  I was shocked!  When I saw her the Saturday before she could barely walk two steps by herself and she looked like she had no life in her.  I looked at her and said, "You look great!"   She said I feel so much better today!  I was so relieved and thankful to see her this way.  As we were driving to the hospital she told me that she was laying in bed last night and all of the sudden she just started feeling better.  She said it was a like a switch went off in her.  Her nausea and headaches started going away and she could feel strength coming back into her body.  She said it was the strangest thing but that she just all around felt better.  She woke up the next morning and felt even better.  I was so thankful for answers to prayers that day!  She was acting more like herself and we had a great ride up to the doctor.  She was laughing and joking with my sister and I!  Before her last MRI she was really nervous but before this one she was as calm as could be.

We get her MRI's done at the Huntsman clinic in South Jordan and then we head up to the Huntsman in Salt Lake to meet with her doctors and get the results.  We do this because the South Jordan clinic is usually faster and less busy for MRI's and it also gives them time to get the results and look through them while we head up there to her appointment.

They were behind at the MRI place and we had to wait almost an hour before mom got in for hers.  We were there for quite a while and we knew that it would make us late her doctors in appt in Salt Lake.  So when she finished I hurried out to get the van so I could pick her up at the door while Mel helped her walk out.  I get to the front door and I couldn't see them anywhere.  I was a little confused because they weren't that far behind me.  I then got a call from Mel saying that mom wanted something to eat!  Really?!  We were both shocked since we have hardly been able to get her to eat anything for a while now and she has never said that she was hungry and asked for something!  Mel said as they were walking to the door mom saw someone walking out with a quesadilla from the grill right there on the main floor of the hospital.  She looked at it and said that looks really good, I think I need one of those!  Mel just looked at her and laughed.  So Mel ran and got her one and we headed to Salt Lake.  She ate almost the whole thing and said it tasted sooo good!  We knew she was feeling better!

We finally made it to her appointment an hour and a half late and got her lab work done.  The doctor came in and talked to us for a little bit and said she looked pretty good and asked her how things were going.  We told her that today she was doing great but the last couple months have been horrible.  So we talked to them for a while about everything that had been going on.  So they decided to up her anti-depressant a little and one of her seizure meds since she's still having some of those.  They also tried her on a new nausea med that she had started a few days before her appointment, which is what we think is helping her feel a little better,  and they are going to start taking her off of the steroid. They then told us that the MRI looked great! They said that they didn't see any growing and they didn't see any cells that looked active.  The treatment was working and doing what it was suppose to!  We were so relieved to hear that, our prayers were answered again!! We initially thought that the treatments were suppose to shrink the tumor but it sounds like they're just trying to kill the cells that spread from the original tumor.  They removed a small portion of the small olive sized tumor when they did her biopsy.  There were cells that had spread off of her main tumor and in all it was about the size of an egg.  So they said with this last scan that it looked about the same which means that it wasn't growing and spreading any more.  The treatment has been killing the cells that have spread from her original tumor and so nothing has gotten bigger and nothing is actively growing!  They also said that her labs came back and her levels looked good!  More Great News!

Since her appointment mom has continued to do good.  She still can't be up a lot and she gets tired really easily but at least she's able to get up and do a little bit here and there.  I spent a good couple of days with mom last week.  She called me up on Thursday and said she wanted to go shopping.  I was happy to hear her want to get out and so we went to pick up her meds and do a little shopping.  She wanted to throw a birthday party for my nephew because she wasn't able to see him on his birthday.  We went to one store and then she was done.  She was tired so we took her home to sleep.  She was so much more like herself and it was great to see her up and around a little bit.  The next day she called me again to go shopping.  I was again surprised but happy to take her where she wanted to go.  We went to one store and she barely made it 10 min. because her legs felt really weak.  She was sad because she wanted to go to a few more stores.  So we decided we would go to one more store quickly to get the rest of the groceries for the party and head home. As we went into Costco she said she didn't think she could make it.  So I told her to go sit down and I would go get her a riding cart or a wheelchair.  Side note: every time mom as been sick or tired I've tried to get her to use one of those and she always refuses!  She says it't too embarrassing and that she can just walk or not go.  Well I was going to make her use one whether she liked it or not! :) So I ran to get a mobilized cart but they were all gone so I grabbed a wheel chair and a shopping cart and we had a great time just walking around Costco.  I was pushing her wheelchair dragging a cart behind me!  It was awesome!  We originally tried just having mom hold the groceries on her lap thinking we only needed a few things until she was covered in groceries and we still needed more.  We had a good laugh about that, so I ran to get a cart and we made it work! We finished and made it to the car and she said thank you for getting the wheelchair.  She said she wouldn't have made it walking and she was happy to still be out.  She decided she wanted to go to one more store so we headed to Wal-mart.  This time there was no arguing about getting a riding cart!  I think she finally realized that it wasn't so bad and she can be out and doing a lot more rather than trying to walk everywhere.  We did have a good laugh though when she was trying to figure out how to drive it!! :)  Then halfway through our shopping trip the battery died and she was stranded in the clothing section until I finished getting a few more things and ran back to get another riding cart.  I got some pretty funny looks riding that thing when I looked completely normal!  Oh well, it was all worth it!  We had a great couple of days and it was so nice to spend a little time with mom and seeing her smile and joke a little bit again.

So thank you all again for your continued prayers and support through all of this.  We truly were blessed with great news and a great week after a rough couple months.  Her headaches are almost gone, her seizures are getting better under control, she's eating more, and she's able to get up and do a few things here and there!  Her short term memory is being affected by the tumor because of where it is but I think were all getting used to that!  She asks us every 10 min what day it is but we have a good laugh about it!  If that's all we have to deal with we'll feel very blessed!  She starts another round of chemo again today and they're still taking her off of her steroid which we're hoping she will handle better this time, so keep your prayers coming, we can definitely feel them.  They give all of us such peace and comfort and I know that it means a lot to mom!  She loves you all!

Her next scan won't be for two more months so she'll just keep on her chemo treatments and hopefully the tweak in her meds will make her feel even better!

A rough month

Sorry for the lack of updates, it's been crazy getting kids ready to go to school and now having 3 in soccer!

I was able to go and visit with my mom for a little bit on Monday.  I haven't even had a lot of time to go and be with her which I feel bad about.  I'm so thankful to all of you who have come and visited and called, it helps her to not be so lonely especially when we can't be with her as much as we would like to.

It has been a rough month to say the least for mom.  After she finished her radiation treatment in June she started doing a lot better.  She was getting up and doing things around the house and going to the store here and there but things started going down hill the last 5 weeks or so.  While she was doing her radiation they had to put her on a steroid because there was a lot of swelling in her brain.  This actually helped her a lot!  Her headaches were better, her nausea was better and she was actually eating a lot!  All around she just felt better.  Well the week after she finished her radiation they decided to start slowly taking her off of the steroid.  After a few days of a lower dose we noticed she wasn't doing well.  Her headaches got really bad and she wasn't hardly eating anything.  We were really worried about her.  So we talked to the doctors and they decided to wait a little longer to start taking her off of the steroid.  So she did ok for the next few weeks.  We met with the doctors in July and they said that they really wanted to try and get her off of it because it wasn't good for her to be on that high of a dose for that long.  So again they decided they were going to start taking her off of it over the next month or so.  We thought that she was far enough out from her radiation treatments that she would do ok this time.  Well that hasn't been the case.  Once they started taking her off again she started getting bad again.  On top of that she had to do another round of chemo as well.  She takes chemo pills 5 days out of every 28 for the next year or so.  So she finished her five days and didn't feel very well.  We've talked to the doctors on and off for the last month and they're still trying to figure out what to do to help her feel better.  Mom is really struggling right now.  Because she was starting to improve a little bit after radiation and was able to do some things, now that she is getting worse and hardly able to get out of bed she has become very depressed.  They think the depression make be causing some of her symptoms so they started her on an anti-depressant a week ago.  She's been handling it pretty well which is a plus since she hasn't been able to take them in the past.  They made her kind of crazy!  So because it takes a few weeks to notice if it's helping we wont know for another week or two if it's really helping.  If it is they're hoping they can start taking her off of her steroid.  They said that because she has been on the steroid for so long it is causing severe weakness in her legs and that's why she having troubles walking and standing.  This is really frustrating to her because she spends a lot of time in bed when a month ago she was actually getting her strength back and getting out of the house a little bit.

So the doctors are still trying to figure out meds.  Hopefully they'll be able to figure something out soon to help give her some relief.  She still has headaches and doesn't eat a lot because of her nausea.  She's learned how to cope with the little seizures she is still having so that has been one good thing.

On Sept. 9th we have an appt. to meet with the doctors and they will do another MRI to see how the tumor is responding.  We're hoping for some good news then!

Thank you all again for your love, support, and prayers during this challenging time.  Please continue to pray for my mom as she is struggling right now.  We just continue to pray that the doctors will be able to figure out some solution to help her.

Update

Sorry it has taken me so long to post I had a rough month of not feeling well but things are better now.

Here is what mom wanted to share with you all:

I got home from having my MRI at the Huntsman in SLC on Tuesday and thought I would update you all.  They said that the tumor hasn't got bigger and there has been slight improvement.  I will go back on my chemo Tuesday.  I'll get labs done and meet with the doctors monthly, as well as have an MRI every other month to track how its doing.  I'm so glad there was some positive news.  I still have quite a journey ahead of me but I am working hard to get stronger and I'm thankful every day that I'm still here.  I have to go through some more med changes and that always gets interesting but it is what it is and I can do it.  I feel strength through everyone's prayers.

Mom is doing so much better than she was a month ago!  It's slow progress but at least it's going in the right direction!  She finished her last radiation and chemo treatment on June 23rd and handled it all really well.  She has just been taking it easy at home since then.  They told us that she would probably feel even more fatigued after treatment and she has.  She has been VERY tired but is still able to get up here and there to do things.  She is getting around pretty good by herself now and we even can get her out of the house now and again to go to the store.  She doesn't last long because her legs are still really weak and sometimes it can bring on her seizures but at least it's something.  Her seizures are better under control but she still as a few everyday.  We're just so thankful that she's doing as well as she is.

Thank you all for your prayers and concern on moms behalf.  We have all felt your prayers and we are very grateful for wonderful friends and family.

Treatment

Sorry it has taken me so long to post again.  Mom started her radiation and chemo treatments almost 2 weeks ago.  She is doing very well with the treatment, which we are so grateful for!!  Everyday we take her up to the South Jordan Huntsman clinic and she receives her radiation treatment.  It is very quick and painless and she seems to be handling it really well.  She takes a pill form of chemo every night and will continue to do that with her radiation treatments.  She has had 10 radiation treatments out of the 33, so we're almost half way.  Mom is starting to seem more like herself lately too.  She's happy and optimistic and very grateful that she is handling the treatment so well.  The first night she took her chemo she said she woke up in the middle of the night and was so excited because she wasn't throwing up!  She thought maybe the more she took it the worse she would get but that hasn't been the case.  Some mornings she feels more nauseous than others but overall she is handling it all really well!!  When I talked to mom yesterday she was so excited, she said that she walked from the car, into the clinic and back to her appt, all by herself!!  Mom hasn't been able to walk for long distances without help since this whole thing started, so this was a great accomplishment for her!  She was so proud of herself and we're all so proud of her as well for her positive attitude and determination!!

I have to share something funny that happened the other day while I was texting my mom.  She was cracking me up.  Here's our texts back and forth:

Mom:  will you text me so I can see if my phone makes a sound
Me:  How are you feeling?
Mom: do it again
Me: K
Mom: oh my gosh now it announces your name! I need help! :)  I'm doing better as the day goes on.  I washed my hair this morning and I'm exhausted! Lol
Me:  Lol!  glad you're feeling better.
Mom: Now I did something and it doesn't do anything!  This phone is so different now I don't even know how to work it.
Me: Did they do something to your phone?
Mom: They had to do something with the call forwarding and I don't know how to reset it.
Me: Oh ok.
Mom:  Now it makes no sound!  You're going to have to help me! :)
Me: I can look at it when I come over again.
Mom: ok, no worries.
Me:  I'll see you in a little bit.
Mom:  I got it to beep, yeah!!!!
Me:  Lol, you're cracking me up!! :)
Mom:  I know it doesn't take much to excite me! Lol!

I don't know if any of you find this funny but I was cracking up the whole time.  It's so good to have mom back and in good spirits!  Love her so much and continue to pray everyday for a miracle!  Thanks to all of you for your continued prayers and support, we love you all!  We'll post again in another week or 2.

A day that changed our life

On Monday March 31st all our lives were turned upside down.  Our mother, wife, sister, friend, and nana was very sick and we didn't know what was wrong and the doctors didn't know what was wrong.  We waited and waited and waited for more and more tests with still no answers.  After nearly a month of not knowing what was wrong we finally learned last week that she has a primary brain tumor called anapalasticastrocytoma.  It was heartbreaking and came as a shock.  Life has been so different for everyone these last  4 1/2 weeks but especially for our mom and nana.  I have never seen anyone as brave as my mom has been this last month.  She has endured so much pain and discomfort and has always continued to be more worried about everyone else.  

Anapalasticastrocytoma is basically a cancer of the brain.  The doctors said it is a primary brain tumor which means it started in the brain and it will stay in the brain.  It can't spread to anywhere else in her body which is good, the bad thing is though it has already started spreading in her brain. The main part of the tumor was about the size of an olive but has spread to about a 2" diameter.  When she had her biopsy the surgeon said he removed most of the main part of the tumor.  They didn't want to remove too much because they felt like that wasn't the best way to treat it.  It could create more harm than good.   With cancer they rate them from stage 1-4, moms is in stage 3.  They did 3 different tests on her biopsy and none of them showed the abnormalities of a stage 4 cancer which was good.  They did say however that she has a very rare tumor and they are going to treat it like a stage 4.  They don't know a lot about it and they don't have a lot of data on how to treat it.  In most cases with tumors studies have shown that the best form of treatment is to start off by doing radiation and chemo right from the beginning.  So starting May 7 mom will begin doing radiation and chemo.  The radiation will be everyday for the next 6 weeks and we will take her to the Huntsman South Jordan Clinic for that.  Along with the radiation she will take a pill form of chemo.  She'll do both of these for the next 6 weeks and then will continue the chemo pill after her radiation treatment for at least a year.

As far as her prognosis goes they can't really give us one.  Her tumor is so rare and people respond so differently to treatment.  They did say however that there's a 1% chance of curing her of it.  There hope with the treatment is to kill as many cancer cells as possible and shrink it as much as possible.  Many people can live many years with brain tumors if they can keep it from growing.  So were hoping that the chemo and radiation will kill most of it and she'll be able to get back to a normal life and have many more years here with us!  They said the treatment isn't too bad and she will continue to have scans every few months to see how the tumor is reacting to the treatment.  The radiation will make her tired and she will lose her hair but it should grow back and with time she will hopefully feel more and more like herself.

Right now mom is at home and slowly getting stronger everyday.  One of the main side effects of this type of tumor is seizures.  She is still suffering from small seizures and the doctors are tweaking her meds to hopefully get that under control.

We want to thank you all for the many prayers, cards, flowers, phone calls, and visits.  Mom is amazed at the amount of love and support she is receiving through all of this.  It means so much to her and to all of us.  We are very blessed with wonderful friends and family!

This blog will help us to document all of moms journey as well as keep everyone up to date on how she is doing.  We ask for your continued prayers as mom begins her battle.  We're continuing to pray for a miracle that she will be cured of this and she will have many, many more years here with her family!