Quick update

Mom is home and doing great! 

Her doctor said that the chemo will srink the tumor and decrease her symptoms, at the same time the chemo symptoms may rise as we go. He also said that they save the worst for last and round 5 of chemo will be harder. For now she is doing very well with chemo. 

Visit from Great Grandpa Smith

Had a special visitor today, Jerry's Dad from St. George. 

Jerry and Charley came up to Huntsman's and we had dinner together and spent the afternoon. It was fun to see him!

Two diamonds

Today in the hospital her levels of chemo are 1.99 and they need to get down below .05, looks like we still have a couple of days here.

They are doing a chest x-ray today to check for fluid, again. She will be put back on antibiotics if that is the case. However she feels great! 

Of all the things my mom can't wait to do it is drive. She is not allowed to drive and it is hard for her. She wants to drive when and where without relying on others to take her. But that to will come with time as the tumor shrinks. 

Our parents have done some role reversing. They have been out of their comfort zones. It is quite obvious that God wants to apply a little pressure to refine these two diamonds.

"Into every life there come the painful, despairing days of adversity and buffeting. There seems to be a full measure of anguish, sorrow, and often heartbreak for everyone, including those who earnestly seek to do right and be faithful. The thorns that prick, that stick in the flesh, that hurt, often change lives which seem robbed of significance and hope. This change comes about through a refining process which often seems cruel and hard. In this way the soul can become like soft clay in the hands of the Master in building lives of faith, usefulness, beauty, and strength. For some, the refiner’s fire causes a loss of belief and faith in God, but those with eternal perspective understand that such refining is part of the perfection process.

-James E. Faust

Sleepovers with mom are the best!

As adults we don't get one on one time with our mom much and we especially don't get to have sleepovers. I don't know of anyone else who gets to do this, we are so lucky! 

I think we have the most amazing husbands who put our kids to bed and get them off to school in the morning. All so that we can be with our mom and make sure she is protected physically, emotionally and spiritually. We might also bug, annoy, and irritate her at times.

When one of us is there all the other brothers and sisters sleep better knowing mom is good. We feel that our dad is able to go home with the comfort that his wife is not alone.

They started her chemo on Tuesday, we are waiting for her chemo levels to drop and then they let her go home. It's like a DUI they measure your levels and if it is above a certain number then they detain you to keep the public safe. 

Getting ready

Today has been a productive day of laundry and housework for my mom. She is getting ready to be checked back into Huntsman's. I'm not sure how she is feeling about all this because she has such a great attitude. I'm sure she is dreading it! 

Yesterday our family got together at grandma and grandpa's house for a BBQ. It was fun to sit around the table and tease her a little about some of the goofy things she did, texted, or said before and after her surgery. The reason it was fun is because she has improved so much and is not doing thoes things anymore. 

We are grateful for her strong will to recover. You are awesome mom!

BLITZ

Today was the first outpatient chemo. I think we are now getting this chemo schedule down. My friend after she heard my moms schedule she called it a "blitz". To give you an idea of her schedule:

 

Series 1

3/10- chemo inpatient 3-5 days

3/19- outpatient chemo

3/24- inpatient chemo 3-5 days

4/2- chemo outpatient

Series 2-Repeat 

Series 3-Repeat

Series 4-Repeat

Series 5

6/30- inpatient chemo, will be in the hospital through 7/27. That is a long, long stay!

One week inpatient hospital stay tahen the next week outpatient. Alternating every other week. Each series has 4 chemo treatments. Plus she is taking chemo pills. Yeah I'd say blitz!

The amazing thing is how well my mom is feeling. Now I think she is getting board. She feels too great to lay around sick, yet not well enough to climb Mt. Everest. 

We went to lunch today after her appointment, it is so fun to be able to spend time with her and my dad. They have been super busy the last two years serving a full time mission in the summer and vacationing all winter. Today she was trying to plan a vacation around her treatments, ha! 

Thank You!!!

Many have sent cards and they are so appreciated. Thank you!

Coming home has been an easy adjustment. Home is were the grandkids can come and visit because there is no age requirement at grandmas house. 

Jason told my mom that we were all excited because we were going to take her to a hotel that brought room service and had a great view. She didn't think that was funny nor did it sound like any fun. Instead we did a short family party :). 

Home sweet home

Yeah!!!!!! I am on my way home after 17 days in the hospital!!!!

So excited to get her home!

We are all so excited to get mom home but none more than her. We have all pitched in and got her house ready for her to come home. The photos do not acknowledge all of our family members who have done so much. Not everyone takes shameless photos. We just added a few for fun because our mom looks at this blog. 😀

The difference a day makes

Last night about 1:15 they were able to manage her blood pressure and it has been doing great. She is on antibiotics for pneumonia that seem to be working.

This morning she woke up and she has been doing amazing. She is ready to come home and she is sure to make sure that everyone knows it. She is ready to sleep in her own bed. She is sick and tired of being woken up. Not much longer it looks like she will be able to come home on Sunday.

I enjoyed my morning with her so much playing games, talking, eating, laughing and praying. It is surprising to me that great memories can come during hard times.

She is the healthiest I have seen her yet. It is amazing the difference a day makes!

Moving on up to the ICU

The last couple of days she has felt great. She did great with her chemo. 

This afternoon she got a fever, low blood pressure and cough. They moved her to the ICU and are treating her for possible pneumonia. Despite all this she actually keeps saying that she feels great. She has not had much of an appetite and has been sleepy. Tonight she will not get much sleep, that's a bummer. That is today's update.

Thank you to all of you who have shown love and support to all of our families. 

Even ICU has a great view and lots of sunshine.

I AM NOT A LAB RAT

  

I HAVE CHOSEN TO GO THROUGH CHEMO

I am tired of the pain of surgery and all of the needles lines injections hoses in and out.

 

I am tired of the head aches the confusion getting mixed up not knowing weather I am in the Pleasant Grove cancer center or Salt Lake cancer center Number two.

 

I can't remember why all of the machines  are used on me over and over.

I feel bad that my daughters are here instead of with their family I am so glad my daughters are here to stay every night.

 

I am afraid of what will happen I always said that I would never go through chemo I need to do chemo I need to do this. I can't leave my family I love my family.

I am sad I am sad I am sad.  I need to be happy. I hope that I can be happy.

I  need to clean the counter and in the bathroom. I am too tired

 

I agreed to get better.

I hope that I will get better.

I hope that I can get better.

I haven't seen my little grand kids in a long time

I hope that they remember me

 

Tomorrow will be a better day.

 

 

 

 

1st Chemo Treatment

March 10, 2015 It is official, tonight was her first chemo treatment. They were telling us all the precautions because chemo is so dangerous because it causes cancer, seems logical. I guess it takes a thief to catch a thief.

I wish I had more news to share but the chemo started at 6pm ish and it is a 4 hour drip. We are all waiting and praying that it is not too difficult for her.

My dad bought her a blank book to write in, turns out that is exactly what the speech therapist said to do. As I was reading in her book she has been writing down almost daily things that she is grateful for. My mom told me when I was a teenager it is a choice to be happy. I know that she is going through a very hard time right now, both her and my dad, yet she is choosing to focus on the happy and not all the crap. 

Today was not only a first for my mom it also has been a time of firsts for my dad. Dad correct me if I am wrong; first time changing sheets on a bed, doing laundry and handling household expenses. These firsts for my dad were just today. The last 6 months he has been taking care of our mom mostly by himself. Someone who will remain anonymous said "it would be like having Clint Eastwood taking care of you." as funny as that is to all who know our dad it may be a little true. But that is why we are all so impressed with him and his ability to put his wants and needs second.

He was up at 6:30am and back at the hospital day after day. Much needed rest for Sleeping Beauty :). I may be grounded for sharing this photo.

It's only in her head, that's a great thing!

Today mom had more tests done. And everything came back good. It is official that it is only in her head, literally! We are so thankful that we know what we are and are not dealing with. 

The type of chemo she will be given is a heavy dosage requiring hospitalization 3-5 days for each round of chemo. She will receive chemo for the next 4-5 months. I am still not very clear about the schedule. I do know that it is intense.

Doctors have told us that the chemo works very well and it will "melt" it away. There is a 50% chance that it will not come back and if it doesn't come back within 5 years then it never will.

I know we have said this before but the dreaded chemo starts tomorrow. 

Today is Good

Saturday, March 7, 2015

I just got back from the night shift at Huntsman. That is a great hospital/hotel. They even do room service for the guests! We still have to pay, but unlike the other hospitals, you don't have to starve until the next person comes so that mom isn't left alone.

Today she felt good.  She has had all her attachments removed so that she can now get into her own p.j.'s!  Once the doc came and she got a shower, dad took us to the Point Bistro on the sixth floor for lunch.  Karen had come for the day, and while on our way, Cody, Hillary & Jason called and met us there.  We had lunch facing the mountains, watching the hikers and bikers on the trail.  She enjoyed getting out of her room for something besides tests!

She was getting tired, so we headed back to the room.  She climbed in bed and visited with everyone for awhile then was ready for a nap.  I love being their with my mom, supporting her.  She has been their many times for me and my family, I am grateful that I am able to be there for her!  Love you Mom.

-Charleen

Jerry's update March 6, 2015

I have stayed in the back ground of the web site an have had thoughts about Barbara's condition. In past years she is the one that has supported me in my back surgery's and knee. SHE IS NOT THE ONE THAT GETS SICK.  We have learned to adjust since last fall and her failing health.  During that time I have been helping her to heal from what was thought to be a stroke.  Now  we are fighting a battle.  I totally reject this invader that has attacked her. " It is from an ill-conceived origion of abnormal shape and irregular size and is inferior to her and lacks genuineness and definitely has no authority."  I guess I am reverting back to my military. The definition I have just written is the That of a  "BASTARD." AND WE WILL NOT LET THE BASTARD WIN.  In this battle, we have some powerful weapons to fight this cowardly thing.  With our faith in Jesus Christ and the Priesthood aided by modern science, the Doctors and all of the Nurses and staff, we will win. 


We are really glad to  have been serving  at the Heber Valley  Girls camp the  last two summers.  Some people have inferred that the things that we did were some what to blame for her condition  and I reject that in the strongest terms.  It was an honour to be there.  Where else could you go and have so many friends with the same goal.  Where else could you go and become closer to your spouse, both day and night with the exception of relief society.


I have a very good friend who lives on the east coast with his wife of fifty years of there about.  Years ago we were laughing about people and he said that his friend had a theory about health.  His theory was that if you drink a quart of whisky every day, be a chain smoker, drink the energy drinks which take you from zero to sixty in one gulp, never get any sleep, drink coffee by the gallons. What  germ would want to inhabit a body like that?

Thank you all for your support with our problems.  I know that you all have your share.

Jerry

March 5, 2015

The scan showed a spot behind her bladder. The lymphoma board meets on Fridays and Dr. Cohen will ask the board about the spot behind her bladder that is 2mm in size (to small to biopsy) but gathering a lot of sugar. He said he is going to ask if there is any other reason that it is using up that much sugar other than cancer. It is important for them to know because it determines what kind of chemo is used.

Chemo is scheduled to begin this Saturday if we get all the information back from her tests.

Today was a busy day and she has not been sleeping well. Tonight her port that they put in was hurting her. But I think we have her feeling better and resting well. 

Tonight my mom came over to the window to enjoy her amazing view from her room. She was able to watch the sun set in the west.

March 4, 2015

First I'll like to preface that this is all second had information because this all happened after I had left. Charleen and my Dad were there.

Insurance approve for our mom to go into on site PT. We waited around until late afternoon and then they moved her downstairs into her room in the rehab center. Here our some of our family text to update you quickly.

2:38- Nurse just said we ARE moving to PT!! All packed up and ready when they come. I'll fill you in when I get the info.

4:06- We just arrived within the last 10-20 minutes and they are saying that they are moving her to Huntsman to treat the cancer. That is the #1 in importance now!!

4:39- They are waiting to get her in at Huntsman. no one know s too much. Just that they want her to go to Huntsman.

7:58- This is what the Dr. was telling us. He was great. Talked to us for about 1/2 hour.

Lymphoma Cancer of immune system, sometimes they grow in lymph nodes other cases is in the brain. They need to check to see if it is in other parts of the body using a PET whole body scan. They will look specifically in bone marrow (do biopsy from hip) don in room. Look in spinal fluid (lumbar puncture) Eye check, blood tests for liver and kidneys, heart tests, check for infections (this will take a couple of days). Chemo for sure- exact type of chemo they will know after all tests are done. First round done now in hospital. After that every couple of weeks for 3-4 day stays each time. No radiation because it is more damaging to the brain and can cause permanent damage to memory.

Treatments have changed a lot during the past 14 years so DO NOT read info. The more accurate up to date website is UCSF. We do not know what stage we are at but the Dr said even if it was stage 4 lymphoma it doesn't mean deadly as in other types of cancer. This is curable! Treatment for about 6 months.

left photo: shows the size of tumor that was removed from the right side. right photo: shows the whitish marbled around tumor on the left side (this was not removed).

Day 3 Post Surgery

March 3 2015:  Today our mom was approved to be admitted into the University of Utah Rehab facilities. We are very happy because at her current status we as a family were very nervous to take her home. We have been told that being able to stay at the U was the gold standard of physical therapy specialized in neurology. We hope that she will improve quickly there and be able to come home soon. She was hoping to be coming home but she will have to wait just a bit longer. To give her a bit of home my dad brought up Zoe (Jason and Tara's dog) to snuggle with.

The neuro oncologist will meet with his medical board on Wednesday so we will have a better idea of what is our next step to help mom/grandma heal.

In case your wondering, no I have not counted the number of staples because I have a short attention span and yes she still has lots of beautiful red hair. In fact, when we do her hair you will never know where the incision is. She looks younger and is more beautiful than ever.

 Karen made this poster to give mom something to look at. 

We all get quality time with mom :)

Day 2 After Surgery

March 2, 2015:  I can't speak for all but today may be the hardest day so far. Not for mom but for the family.  The happiness of getting through surgery is gone and we are now feeling the sadness of the reality. We are waiting to hear from the doctor who did the surgery and waiting to hear if she qualifies for in patient rehab. I am grateful for my Dad who loves "his Barbie" the way no one else can. He has been a rock but I know this is all starting to wear him down. He as appreciated all the loving emails from friends old and new. 

Our family is grateful that we have the fullness of the gospel. We pray together, play together and we are sealed together. Because of the gospel we have comfort and knowledge that we are here on earth, for this very purpose. 1) We gain a body, 2) we are tested by being asked to follow all his commandments, and we for our benefit are perfected through our trials and our individual hardship. 3) Then we return to our Heavenly Father where our loved ones are there waiting for us and we get to be all together. This we know!

I am grateful for my parents and the missions they have served. I believe that the first mission us kids learned how to work together. The second mission in my opinion  help us/me learn how to be more self sufficient in our own families and venture out. I believe that each mission helped prepare us for what we are dealing with today. I couldn't be more proud of my brothers and sister (that lumps together in-laws). We make a great team.

Day 1 after surgery

March 1, 2015, yes my mom knows what the date is! This was a tricky question because at midnight the month changed. She woke up and became very alert and aware of what was going on around her. She physically is doing really well. She is not in a lot of pain and the nurses are managing really well as needed. She was able to sit and stand up and walk around. She was so hungry this morning. She ate a great breakfast.

She is able to talk but she is saying very funny things. Our family was hoping that she would be better after surgery but she is worse and the dr. says this is normal due to swelling from the surgery. Today She drank a coke and ate popcorn while watching their own ward sacrament online. She also had a slice of chocolate cake from heaven. It was the perfect Sunday!

The short of it.

Last summer:  Our Mom/Grandma & Great Grandma while serving a full-time mission for the Church of Latter Day Saints began to show subtle signs of not being well. Us kids were concerned that while serving at Heber Valley Girls Camp and staining cabins she was getting very sick from the paint fumes. We also noticed apatite changes, weight changes, and she begain to have some mild infections.

When our parents came home from working at girls camp in October they were so excited to go to Mexico with Charleen and Bobby's family. While in Mexico, Char & Bobby were able to watch her eating habbits and became concerned. Also, our mom tried to ride a bike and because of her poor balance could not ride a bike and actually crashed the bike hitting her head on a tree- twice. When they got  home Charleen and I were talking about mom and her health. Worried, we told her to go back to the doctor.

November 13: I met my mom at IKEA and when we first met she seemed normal but as we were shopping she began to act differently. She was taking a long time to pick things out, walking funny and was very agreeable. I asked her if her feet, hips or back hurt trying to figure out why she was walking funny (like a limp). She said that she was feeling good and didn't realize that she was walking different. I pulled her aside in the store and very firmly told her that I was tired of her not feeling well and that she needed to tell her doctors and figure it out. She of course agreed in a very calm way (love you mom but red flag). After shopping, I kissed her good bye and she drove away. I called my dad and told him that something is wrong with mom. Because my Dad had been with my mom all day every day, it was difficult for him to notice the subtle changes during the past months. When my mom got home she had worsened and he noticed her one side shaking. He took her to the ER where they did an MRI (without contrast) and diagnosed it as a stroke.

After being released from the hospital she was improving, but lately she started to worsen. This up then down was a very gradually thing. But when my husband Chad and I went out on Valentine's Day with my parents, we realized just how much worse she had become. They left to go to St. George for 10 days and while they were gone we were getting phone calls and text that were not normal. Initially, I thought she was having another stroke and felt like she needed to go back to the doctors office.

Wednesday February 25th:  My parents had gotten home from their vacation so I started making phone calls to her doctors. Charleen and I went down and met our mom and dad and took my mom to have a MRI done (with contrast). This time we got a new diagnosis: tumor. The neurologist explained that she never had a stoke but was a tumor all along. The tumor size had grown very quickly and had all of the characteristic of glioblastoma and because of her age and the growth rate it would not be good. The secondary possibility listed on the MRI report was Central Nervous System Lymphoma. I never though I'd be cheering for Lymphoma but that is where we found ourselves.

Thursday February 26: We met with Dr. Randy Jensen at Huntsman Cancer Institute to go over the results of the MRI and to figure out our next steps. As he viewed her MRI he said it could be a couple of different types but did not lead us as to what types. We would have to wait to get the pathology back. Shout out to our Neurologist for getting us an appointment at Huntsman the very next day and also to Neuro Oncologist who saw her not on his normal schedule and did everything he could to get her into surgery two days later. We are all so grateful!

Friday February 27, 2015: We checked into the U of U hospital.

Saturday February 28:  At 10:30 am mom/grandma went into surgery. At 2:00 pm she came out and surgery had gone well and preliminary pathology report said that it is CNS Lymphoma. This is obviously not good news but it was the best case of the worst possibilities. She was able to sleep comfortably all that day and night.

Thank you for so many who love and care for our Mom. Thank you for keeping our family in your thoughts and prayers.

-Missy Collard