Cancer just SUCKS!!!

I am reminded of that EVER day. Cancer sucks! There really aren't words to describe it: it is scary, terrifying, I am nervous, anxious and just hate it all.  Right when I think I am kind of getting use to our new normal, I realize I am not. 

Just over a week ago John started coughing a lot. He also had a low grade fever off and on. He was so bummed because he was going to go to church Sunday. But could not go with this "cold". We were kind of putting off calling the Dr., pretty sure they would admit him to the hospital and Christmas was right around the corner. He had an appointment the day after Christmas. Turns out he has pneumonia - AGAIN!!! But they did surprise us by saying he could do oral antibiotics at home :) He coughs a lot and is slowly getting better. He finally does not have a fever after 6 days of having one. 

John's parents are in town for Christmas. We had them staying with us for 6 days. It was fun, but hard for John. He wanted to be able to do things with them and can't. It has been snowing a lot and we all went out to play in the snow Christmas Eve and John couldn't :( simple things that most people do not think of. He did not even go to Christmas dinner at his brothers house on Christmas day. He did not go with us to temple square to look at lights. I hate it!!! It is so hard and so not fair. Some times I feel like people are very insensitive to what is going on. But I realized that just because our family of 7 has to live with John having cancer does not mean every one else does. I just think about life so differently now. It is so hard to not be able to do "normal" things.

Christmas was really good. It snowed most of Christmas Eve. Instead of our usual movie out tradition, we had a movie in. Grandma and Papa gave the kids "Brave" and we all sat and watched that. I picked up chinese take out) which is our Christmas eve tradition and we had a good evening. Kids went to bed good and John went to bed early. John's brother Dave and his family stayed the night here and that was super fun. I was grateful for the help from John's parents and Brook and Dave and Abigail. Everything was wrapped, but still took us a while to set everything out. We were super super blessed by others. Several people gave us $$$ and several others dropped off presents!! Kids had more this Christmas than they ever have gotten. It was fun watching them open so many presents. But, John was very low on energy and it was a crazy morning.

John and I were married on Dec. 27, 1996. So we were celebrating our 16th anniversary yesterday. Gratefully a good friend offered to bring us dinner and take our kids overnight. Another thing that sucks, we can't go anywhere!!! So we were celebrating in. It was nice, just different. I can't wait till we can just go our to dinner and a movie :) We played "LIFE" (John's pick of a game), and had dinner and watched "Modern Family". I got to sleep in this morning, but John had to be at the hospital at 8 am.  Life is changing so so much. I don't think I will ever get use to it. 

John and I playing LIFE on our Anniversary.

John and I last year on our Anniversary. I surprised him and took him to NYC for 3 1/2 days. It was a great trip, and I am grateful for the memories.

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Just an update. All is going pretty well.  John is on day 9 of this cycle. He feels ok, but seems to have trouble getting up and moving in the mornings. He goes to work but usually doesn't make it in until about 9 am. His rash is pretty much gone, but he has dry itchy skin. He seems to be eating ok, but having trouble finding drinks that taste good to him. Right now he seems to like ensure clear fruit drinks :)

He had an appointment at the clinic yesterday. It went well. His numbers are all good and for now his cancer cells are at 0%!!! I think the hope is to keep them there until everything is ready for the transplant. His white blood cell count is about 3500, normal is about 5000 - 10,000.  And his used to be over 35,000.  Stem cell transplant should still be after the 3rd cycle which ends in the middle of January.  Then it takes about 3 weeks of collecting and harvesting his stem cells. Then he should be admitted to the hospital about February 10 and be there 3 - 4 weeks.

We are excited for Christmas and to have family here.

It's been a while

Ok - Not a whole lot to report with John. He is feeling ok. He started this new cycle a week ago. His energy levels were really good until yesterday. He kind of hit a wall. He also has a cold :( Luckily it is just a common cold (hospital thought it was RSV or Strep and ran a bunch of tests). It may take him a while to fight it though. His white blood cell count is about half of the low end for a normal person. Which is where they want it. And the cancer count in those cells are pretty low, but still takes him a lot longer to fight illnesses. Let's hope it stays a cold and does not turn into pneumonia.

He is having a hard time with food. Not keeping it down, just that most food and drinks do not taste very good. Once in a while he eats something that tastes really good and normal. But he still has not lost any weight so that is good. He had a bad rash on his torso and they had to change that medication, the rash is almost gone, but his skin is really dry. He is retaining water and his face and neck were swollen this morning. It all could be worse. 

The other day I was with my sister in law Brook in a cute shop and I saw this. I have to donate - although I joked and said I could put it towards my own bills :)

We have been really blessed lately. Our ward had a Christmas party Saturday. As part of the party they had a "Fill the pot for the Philpotts" pot. They had a nice dinner and a choir and a silent auction. I had no idea what to expect, but Sunday the bishopric brought us a check from the donations. It was over $4000.00!!!! They said it was super cute because the bottom was full of coins and they watched kids keep putting handfuls in. It took them 45 minutes to count all the coins.  I just picture every women emptying her wallet of change so the kids could put the change in there. Our home teacher told his family and his wives family and they donated too.  These are people we have never met and have been so blessed by them.  John opened the check and balled and balled. It is a huge blessing that we are so so grateful for.

Then yesterday someone decided to bring some groceries by. I was in Isaiah's class and when Abby got home there were groceries all over the front porch. She brought them in and called me asking where to put it all. I was thinking a few groceries. It was a ton and covered my big kitchen counter. The amazing thing is I had just gone shopping yesterday morning and it was like everything multiplied, I bought milk, they brought milk, I bought cheese, they brought cheese, I bought bread they brought bread, goes on and on with mac n cheese, string cheese, oranges, butter, spaghetti sauce, pasta, cereal, beef, chicken . . . I just stood there in shock and cried. There was one bag that simply said "Merry Christmas".  Both of my big side by side fridge/freezers are totally full. I am so grateful for the kindness and thoughtful people. We are so blessed to have amazing people in our lives.

A visit from Elder David A. Bednar

HOLY MOLY! Yes, this is my family with Elder David A. Bednar in our home!!!! Elder Bednar is one of the 12 Apostles of Jesus Christ. It Bible times he would be Peter, James or John. And he came to visit us. This just does not happen - to any one! Well, to very very very few people. Ever since he was called to be an apostle 8 years ago and first spoke in General Conference he has been one of my favorites! I love his stories. Now he is definitely my most favorite!

So, here is the story: Our Stake Conference is this weekend. It was announced about a month ago that Elder Bednar and Elder Allen (of the Seventy) would be coming because our Stake Presidency was being released and a new one called. Apostles do not always make this change - we are very lucky to have an Apostle coming to our Stake. So, yesterday about 2:15 our Stake President, President Tindall calls John and asked if he and Elder Bednar and Elder Allen can come visit our family. They would be here in 30-45 minutes. AHHHHHH! Yes of course they can come. We were all home except for Abby who was babysitting at Jeff and Rachelle's. John shaves and puts on a suit and asks if kids should change into church clothes. I said no, they were fine.  Then 5 minutes later freaked out and thought more clearly and said "YES, kids go put on church clothes". I was literally in sweats and had been cleaning and organizing all morning. I change fast and get ready and call my sister in law Brook to see if she or Dave can go babysit so I can pick up Abby. I run over to pick her up and tell her to change fast. We are all ready and it had been 28 minutes.

One thing that had happened that morning was Jeff asked to borrow the Suburban to go pick up some couches. I was supposed to take the kids to DI to drop some stuff off and let them do Christmas shopping for each other. But, I thought no big deal, we can go next week and I let Jeff take my car. Gratefully, or else we all could have been gone when that phone call came. 

Also, I firmly believe this is the reason I have kept a clean house my whole life. My house was totally clean. I did not even think, "oh no, we have to vacuum or dust or do dishes or make beds". Every thing was clean and totally fine for an Apostle of the Lord to be in my home. I did not have to hide anything or throw anything into closets, it was clean and I was so glad. I was so thankful in the moment for my parents who taught me to be clean.

The kids got antsy waiting and they came about 3:15. Isaiah was being very shy and kept saying "I don't want to see him". And he covered his eyes. I think he was overwhelmed by the spirit and did not know how to react. He would not even shake Elder Bednar's hand or give him "knuckles". He sat by me and then president Tindall asked Isaiah to come sit with him and he did, he sat in between he and Elder Allen the whole half hour they were here. Elder Allen rubbed his back and tickled him and played with him. It made his day and Isaiah was happy. Now, I do have good kids (for the most part), but they do not like to sit still. OH MY - for half an hour they were perfect. They sat and listened and did not get up once (other than Abby whose contact was falling out). They were reverent and respectful and happy. 

I can not describe the feeling and the only way I can is to say that the spirit was stronger than being in a temple. We all felt it and felt the peace. Elder Bednar shook all the kids hands and asked them their names and ages, Elder Allen shook their hands and asked their names and Pres. Tindall shook their hands and gave each of them a compliment. Then Elder Bednar chose to sit on the piano bench right across from John and I so he could face us. He looked at John and said, "so, how goes the battle?" John told him how it is going and how his side effects have been minimal and how he feels like he is being refined for whatever the Lord needs. Elder Bednar asked him about the prognosis and John said that with a couple of stem cell transplants he has a 1 in 3 chance of being around long term. He asked John if anything has surprised him about him and what he has been able to do. John talked about his faith being strengthened. He then looked at me and asked me the same question. I said I have been amazed at the strength I have been blessed with to do everything I need to. He then talked about the atonement and how it is not just for bad to be made good. But for the good that is true grace. 

President Tindall talked for a minute and thanked us for letting them come and said we are blessed. Elder Allen then looked at me and said, "Noelle, I can't stop thinking about you". He said sometimes we don't know who we really are and our challenges make us who we are. He said I was a choice daughter and I can do this. I was crying the whole time as he was looking in my eyes talking to me. Then Elder Bednar looked John and I in the eyes and said, " The Lord knows you and is aware of you and mindful of you".  Elder Bednar then said a prayer - a long prayer. Blessing our family. As they were leaving I could not let the moment go by and asked Elder Bednar if I could take a picture of him with the kids. He said definitely. But then Elder Allen said let me do it so you and John can be in the picture. He even knew how to use my iphone :) We shook hands and said good bye and that half an hour went by way too fast.

After they left the kids went to go change (well Elder Bednar actually told them they could) and John and I sat on the couch. I did not want to lose that moment. The Spirit was still so strong, we sat there in awe and peace and feeling so so so blessed and had never felt so close to the Lord. 

Last night I went to our adult session of Stake Conference. Elder Bednar was saying that Elder Holland was in Africa this weekend creating the 3000th Stake. He said with the current membership of the church and the amount of Stakes we have, that we might have an Apostle in our Stake every 27-30 years. But with the growth of the church it will most likely never happen again in our lives in this Stake. And he came to my home!

I think Abby knows what that meant but I don't know if the other kids really really know who Elder Bednar is. They know he is an Apostle and that he speaks in General Conference, but I am not sure if they really understand what an Apostle is. I am so glad I grabbed that picture and some day the kids will understand the greatness of that moment. We have been so blessed and once again experienced a miracle.

Hmmmm - Living with Cancer

Living with cancer . . . It sucks! What else can I say? John has been on chemo treatments for 6 1/2 weeks. His body is responding pretty well to it all. But that does not make it easy at all.  We are both really starting to realize how much our lives have changed; what we can and can't do. Life is very different.

John is still able to work most days. Still no hair loss, still gets hiccups on the steroids, has dry eyes and dry mouth, gets the metallic taste in his mouth, he eats pretty good but food tastes different, and just last night he noticed his skin is very dry and flaky and has some rashes, he also had very swollen ankles last night. I think he is sleeping a little better, he has not hurt any more bones - gratefully - but also has some anxiety and depression setting in :( He has less patience that ever and at times is very grumpy. It is HARD on all of us and all in a different way. John is really really getting tired of going nowhere. Literally he only goes to work, he can't go to the store, out to eat, to church or any where. Just work. And when he walks around he has to wear his mask. It is hard and he is getting frustrated with that.  His energy level seems to depend on where he is in his chemo cycle. First few days seem to be ok, and last few days seem to be ok, but middle is not good. Some days he only works a half day and is completely exhausted when he gets home. He usually rests all weekend.

Kids seem to be doing ok. I think for them life is somewhat normal. John is working, they go to school, I stay home and clean and run errands, and their daily life is not affected too much by it.  Other than I usually always put them all to bed and do most of the parenting.

I am also starting to feel overwhelmed and more and more like a single parent. When John is able to work, it is great - but it takes almost all his energy. He tries to do more at home, but gets frustrated and loses energy. I am having a hard time right now because I feel like life is going on, but our lives are kind of standing still.  Once a year my sisters and I try to have a sisters weekend. I was REALLY looking forward to it this year and really needed to few days of a break. At first it was maybe only going to be Emily and I. We picked a date and planned to go to Palm Springs. I have not been there since a kid and was so excited to see the sun and relax for a few days. Well, this was all planned a few months ago before we knew John had cancer. Because of expenses and John not being able to watch the kids I can no longer go. And all my sisters are getting ready to go next week. I am just having a very hard time with that. And in general realizing how much my life is changing. Right now I am a mom and a wife and that is about it. I take the kids to church alone, I go to Stake Conference alone, I run errands alone and can not ask John to stop and pick things upon his way home from work, I stay up late cleaning and getting kids school stuff ready each night, I get up early to get up with Abby. It is just hard right now.

I know we are blessed with many many friends and love and support. I am so so glad for that. It does make it easier. The plan and hope is still for John to have a stem  cell transplant in January. We hope and pray that goes smooth. Thank you for all your prayers.

I HATE STUPID CANCER

First of all, nothing has changed - just having a bad day and need to get it out. I hate cancer. I hate that it has no consistency and any one can get it. Any one can get it and it makes no sense. Your body can give it to you and your body can choose to fight it or not.  It is awful. This is why I hate cancer:

• Because my kids live in constant fear.
• Because my no matter what, our lives have changed forever.
• Because John can't be who he wants and do what he wants.
• Because it makes me cry all the time.
• Because most of the time I feel like a single mom.
• Because I can not go with my sisters on our annual "sisters weekend".
• Because my kids do not get the Christmas they deserve.
• Because we are constantly worried about John getting a fever and an infection.
• Because John breaks ribs just by bending over.
• Because I constantly think about how John's body will respond to the transplants.
• Because it took my Dad's life, John's biological father's life and 2 of my Grandparents lives.
• Because I can't sleep at night.
• Because John can't go to church ( or the grocery store or out to eat, or the movies . . .)
• Because of the bills it is giving us.
• Because John does not have much energy.
• Because it is scary. 

Hand Sanitizer, paper towels and a conference room

Yep, that just about sums it up :) Hand sanitizer all over our house - constantly all of us washing hands. John has to use paper towels too to dry his hands.  But, that is how we can hopefully stay more healthy this winter. Other than Isaiah just got over another fever and now Abigail has it :( How does that happen?? They all just got flu shots Saturday? Trying to keep them away from John is so hard and so sad.

And the conference room: So, John has been able to work a lot of the time, since being out of the hospital. We feel so blessed with his job and his company, they are being fabulous and super understanding. Before all this happened John and I met for lunch every Wednesday - our favorite place to meet is Kneaders and there is one right up the street from his office. Well, that has not happened for a while :( When he is at work and walking around the building he has to wear his mask. At his desk he can take it off. He  can not go any where public like a grocery store or a restaurant. So, today I said I would bring him lunch and we could eat together - but where?? Too many germs in the "kitchen" area at his work. So, he asked if we could use the conference room since no training is going on right now :) So, for today we get to meet for lunch.

Today also marks day 29. Which means cycle #2 is starting. One of his medications is changing. Only because it was the one they wanted to start with but it takes longer to order it in and they wanted to start chemo right away. He is also switching to a 21 day cycle. It is hard to know how he will feel with the new med and not being in the hospital. But, he will probably have way low energy levels for a week or so. We will see - and hopefully NO fevers for him.

A Harp Recital

Last week at church a lady in our ward asked if John might like it if she came and played her harp for him! Definitely!! John was so excited. So she came over yesterday and gave our family a little recital. It was gorgeous and so peaceful. John really enjoyed it.

FLU shots!!

AHH - I hate shots. But, it was super important for all of us to get flu shots this winter. So, we did. John got his early last week, then I went and got mine at Walgreens. It really wasn't bad :) Then I made an appointment to take all the kids in Saturday morning. I didn't tell the kids because they get so anxious. So, they did not know until Saturday morning. They actually did ok. I had Abby go first and she did fine. All the other kids could choose leg or arm. Michael chose leg and did ok, but freaked out and tensed up a lot. Emma chose arm and did a fine. Jenna and Isaiah were not so thrilled. One nurse had to hold them while the other one did the shot. But, in the end they survived :) And now we better  not get the flu :) A flu definitely puts John in the hospital.

The odd thing is that Saturday night Isaiah got a fever :( He has had a fever for 2 days. What is it with him and fevers??

This week

This week, so far, as actually been somewhat "normal". John has been working, kids have been at school and I have been organizing :) I have been cooking and cleaning and picking my kids up from school and trying to enjoy each moment. It is weird though: Life seems kind of normal (when John is not in the hospital), BUT he is still fighting for his life every second of each day. The cancer is still there. There are days we don't really talk about it, BUT it is still there. Life goes on, BUT cancer is still there. Sometimes I kind of feel like it is the elephant in the room in an odd way. We are trying to live life, but it is HARD. No matter how good we all seem, or how well John is doing, we are still just beginning the fight of our lives.

Good news is John is doing very well.  He had an appointment this week for blood work. It went great. His numbers are all fabulous and Dr. Ford said they could not have hoped for a better response during the first round of chemo. Interesting thing is that John has not lost his hair at all. It was supposed to happen between days 14 - 21 of first round. Today is day 22 :) Not that it really matters, it is just hair. But good that he does not have that side effect.

 John is doing great with his PICC line. Apparently this should be good for 6 - 12 months. Right now we do not have any at home IV treatments - antibiotics are done. But here is Abigail one night flushing his PICC line. I told her she needed to learn in case I am not here one night :) She was nervous at first, but did great and now likes doing it. She got mad when I did it the following night :) John can talk her through it, but because of the angle he can not do it. Right now since we are not using it at home, the clinic did a heparin flush which is good for one week.

Yesterday we had a surprise phone call from Dr. Smith. He was John's voice teacher at BYUH. He has retired and served 2 missions. They now live in Alpine - about 45 minutes south of us. He and his wife Linda were up in Taylorsville yesterday and called to see if they could come visit and bring dinner. It was wonderful to see them and for them to meet our 4 youngest. The last time we saw them was 7 years ago when John and Abby and I went to Hawaii and they were still in Hawaii.  It totally made John's day to see them. Thank you so much for coming Smith's.

Next week John starts his 2nd round of chemo. One of his medicines is changing because it is the one they wanted to start with but could not get in time. So, we will see how well his body does and the side effects of it. These past 3 weeks have gone by very fast and I can not believe that Thanksgiving is in 2 weeks. I am grateful for every moment we have as a family and grateful that John is a fighter :)

Boy Scout Calling and cancer

I realized something today . . .

John's cancer was found when he hurt his should and went to the Dr. and ended up with an MRI, Which led to the orthopedist finding abnormalities in his bone marrow. We keep saying we are thankful for the shoulder injury. But, today I realized it goes deeper than that:

We moved into our new home and our new ward July 7. We did not know why THIS house or THIS neighborhood. I was dead set against it at first. But, once I walked in this house I knew it was mine :) In our church it is typical to have a "calling" or a way to serve in our congregation. John and I have both had callings with the little little kids, with bigger kids, with the youth, with the adults - we have both served everywhere and love serving. Shortly after we moved here John was asked to be the 11 year old Scout leader for our ward. He has never been in the scouts before and was not so sure about it. He is a great man though and will do whatever the Lord asks. Our Bishopric had a hard time deciding which calling for John as many people wanted John to work with them. They really debated and in the end they knew he needed to be in the Scouting program. John really struggled with this too, but came to understand the Lord needed him there. The Bishop even came over one night to talk to John about it and told him he did not know why the Lord needed him there, but he did.

Today I put 2 and 2 together. The Lord needed him in Scouts because that was where he would hurt his shoulder which would lead to finding out he has cancer. NOT necessarily because he needed to help those 11 year old boys. Because now John can NOT even work with those boys. It was all about a calling. The Lord knew when he hurt all those ribs he would not do anything about it, he knew he needed to hurt his shoulder.

I am so grateful for the gospel in my life and my understanding of our Lord's plan for each of us. The Lord knows all and he knows how to bless us and answer our prayers. We are SO happy to be here in this neighborhood. We have amazing neighbors and friends and feel so so blessed. We really miss our old neighborhood, but are super glad it is only 2 miles away and we have their support too.

Here is to hoping we have a somewhat "normal" week :) I just looked at my calendar and realized I do not have anything on my to do" list tomorrow (other than the typical, laundry, cooking, cleaning). Last time that happened John had a fever and pneumonia and ended up at the hospital. I think I will fill my day tomorrow real quick :)

Doing OK

The past few days have been pretty uneventful (gratefully). John has been feeling ok and even working full days. He comes home pretty tired, but not so tired he goes straight to bed. He went trick or treating with us and has been helping with homework in the evenings :) 

I realized I haven't been putting many pictures on here, I will try to do better about that. John was helping Isaiah with his reading here.

John is excited for the weekend and to rest a little. His PICC line is really helping but also really bothering him, it itches and hurts. But administering his antibiotics has been so much easier. He is on day 17 of his first months cycle and "should" be losing his hair any day (actually be may not). The last 2 weeks of each cycle is less medications so he is supposed to feel better and have higher energy levels.  We have found that to be true so far.

Our trick is to keep him from getting colds, flus, or more pneumonia this winter - that will not be easy. He can not go to church for a while and that will be really hard from him :( He can not go to movie theatres, grocery stores, restaurants, any real public place like that. This will take some getting use to. Some days I feel like I am all of a sudden a single mom to 6 kids (one of which is John who is pretty high needs). Some days seem somewhat normal though. It is hard to plan and still one day at a time.

PICC line

I have no idea what PICC stands for (and I could look it up, but don't feel like it :) ), I do know what it does and what it looks like though. So, after many many failed attempts at trying to get an IV in John for 2 days, it was finally time for John to get a PICC line. It is a more permanent IV, that goes in his arm and a catheter is fed through the vein up to the main artery by the heart. He has 15 inches of catheter running through him. He said it really hurt getting it in, but it is SO nice. There was NO problem getting his antibiotic in him last night. And the hospital can also draw blood from it. It should last 2 - 3 months?? I have no idea how they know when it is done.  Still, one day at a time, and today it is working.

John had a good day yesterday. Stayed home and relaxed until it was time to go to the hospital and get the PICC line in. He also had blood work and a chest xray. He came home and we got to celebrate another birthday yesterday - it was Michael's 11th birthday. John had an ok amount of energy and was feeling pretty good. This morning he got up and ready and went to work. He said he feels good today too. It could be because we are half way through this cycle and there is less medicine he is taking. The first 2 weeks, is crazy with all the meds. If he still feels good, he might even go trick or treating with us tonight - we will see.

I am doing ok. Sometimes I still can not believe my husband has cancer!!! It still feels pretty surreal. It happened so fast and all my days are blending together. I never know what day it is any more - Michael's birthday totally snuck up on me (good thing I had actually birthday shopped over a month ago). I wake up each morning and realize I am not having a nightmare and get moving with my day.  It is HARD! But, I don't have a choice. It is hard to try and keep life somewhat "normal" for the kids, and it is hard to get enough sleep. It is hard to watch John in pain, it is hard to stay on top of house work, it is hard to plan anything, it is just hard.

Too much

Ok - too much has been going on!

So, John continued to feel fine while at the hospital. Friday evening was told that as long as he did not develop a fever AND his chest xray showed improvement with the pneumonia he could be released from the hospital Saturday about noon. Luckily - that is what happened. I went to pick him up about 11 am and he was practically running out of the hospital :) We got home and had plenty of time to get ready for Jenna's baptism at 3 pm. The baptism was amazing and John had the strength he needed (he baptized and confirmed her, he sang a solo and we sang as a song as a family. He left right at the end of the baptism (no socializing for him). He came home and just relaxed the rest of the day. The Aunts and Uncles took our kids to a trunk or treat activity and I stayed home with John and his brother George came to visit for a little bit. It was a pretty good day.

Sunday started out good :) It was my birthday and the kids primary program at church. John came to sacrament for the program and then left. He had to wear his mask and we sat in the back. The mask makes him real sweaty though. We all came home after sacrament meeting and had a family "brunch". It was super fun, we had 2 breakfast cakes and scrambled eggs and OJ AND Rachelle, and Brook and Joy set up decorations all over the house and made it look like a birthday for me :) It was so fabulous and I SO appreciate it. John still seemed to be doing fine. Some of the family left at 1 pm to go to Brook and Dave's primary program. And we were waiting for home health to come and put an IV in John for at home antibiotics. They were running SO late and literally got here 2 hours late. We were supposed to eat dinner about 4 pm and that did not happen.

The first nurse came and tried twice and could not get John's veins to take the needle. And it was really hurting John. So, she called another nurse to come. We had to wait about an hour and then Tami came. We really liked Tami. Although it did take her about half an hour and 2 more tries to get an IV in. She was so nice and patient. John was not having fun and it was super stressful. The worst part was that she checked John's vitals and he had a darn fever!!!! We both just sat there and cried. She said it was ok, and wait to call the hospital because another few hours would not be a big deal (so we could celebrate my birthday). Problem was neither of us were really hungry :(  His temp kept going up so we knew we needed to call. It got to almost 102 in the next few hours so I finally called the hospital. The PA called me back and happened to be the PA that was there Saturday when John left. He actually said since John was on 2 antibiotics to wait it out if he wasn't feeling sick. He was probably just reacting to something.

So, I liked that :) John got to stay home and watch the Giants win the World Series and his fever broke and started going down at bedtime. He slept great and felt good this morning. He has had a good day today and just relaxed. We went on a walk and watched Modern Family together while the kids were at school.

But, this afternoon we go to do his antibiotic. He starts to flush it and immediately big bubble under the skin and we know the catheter is NOT in the vein. AHHHHHH! It came out!!!! So, we had to call home health nurse again - They are literally down stairs right now trying to find another vein - I left after 2 tries and seeing blood squirt everywhere :(  Problem is his veins are done. The chemo makes them weaker and they are spasming and won't take the IV now. Luckily he does have an appointment tomorrow to get a PICC line in. It should last for months. They go in through an arm vein and feed the catheter all the way through into a main artery by the heart. That will help a lot, I just hope they do not have trouble getting it in. John is REALLY tough when it comes to getting veins poked (I am not). And I am watching him in pain and I just cry. I hate it. Good news is that his temp has stayed down all day and he is feeling good. Hopefully at work Wednesday. I don't think he will go in tomorrow because he has to be at the hospital be 11:45 to get the PICC line in and then do bloodwork and a chest xray to check the pneumonia.

We have had a busy, busy past few days. John's parents were also in town and his brother George came down from Idaho for the baptism and to see John. Tomorrow is a new day!

The Hospital Staff

One thing I have been thinking about is how amazing the staff is at the Hospital. They are AMAZING! I can not believe how much John and I have loved some of the CNA's and RN's and PA's. (There are a very few we have not loved). Most of them really take their time and answer all our questions and help with everything - they are amazing. It is kind of funny to walk to 8th East and know almost every one by name :) And if we pass a Dr. in the hall, he knows John by name. The Dr's - oh my!!! FABULOUS and so so intelligent. They truly care and want what is best for the patients.

I realized something today. So, early Tuesday morning when John was throwing up and then got a fever, we took him to the hospital. And Jeff takes him in and his temp is 97!!! WHAT?? It had been 102 an hour before that. Kind of embarrassing. After a few hours one of the amazing Dr's (Dr. Ford) comes in and says he wanted to do a chest xray just to see if John had pneumonia! It felt so out of no where, but not questioning the Dr., he is amazing. There was no medical reason to think John had pneumonia, other than his white blood cell count started going up (and it had been going down and it should be going down). Going up is usually the sign on an infection. And the super smart Dr. was right - pneumonia (and caught super early). So, my point is that we only took John to the hospital because he had a fever. And that led to the Dr. finding pneumonia. If John had not had the fever for a few hours he would still be home with pneumonia getting worse and worse. I can see the Lord's hand watching over us every day. I know he is there watching and protecting. And I am so glad for todays technology and medicines and medical staff. We love them and know John is at the right place!

On another note - here is an update: John feels totally fine :) Does not feel at all like he has pneumonia. The numbers have been great at the hospital and his body has responded great to every medicine they have given him. I think a lot of the time every one is more cautious with John's case because it is so rare. So they watch him more closely. One Dr. came in today and said he would lobby to get John home today. But he had to clear it with the head Dr., Dr. Peterson. Dr. Peterson said, " Nope, maybe Sunday if he does not get another fever".  Then tonight Dr. Peterson came in and told John if he does not get a fever and if the chest xray is clear tomorrow, he can come home at noon!! At first they were saying they would just give him a "Pass" to come home for a few hours for the baptism. So, we are praying super hard for no fevers and a clear chest xray.

Jealous . . .

I warned you all this would also be my journal for personal feelings :) Here is one of those posts!

Since John first went in to the hospital 11 days ago, he has only been home for 2 1/2 days. I really hope this is not a trend. (although the hospital is great and he has had fabulous care). I just find myself really jealous. I walk through Walmart and look at these people shopping and think to myself "what is your biggest concern right now"? "I bet you don't have 5 kids under 13 (4 of whom have enough issues from spending years in foster care), I bet your husband is healthy and working, I bet you aren't juggling 3 school schedules, church activities, putting kids to bed by yourself every night, and spending every minute possible at the hospital with your husband who is fighting cancer". I get on facebook and get so frustrated with people who are complaining. REALLY - that is your biggest concern right now??

I know it really isn't fair of me to think these things. Every one has hard times in life and people have worse things going on in their life than I do. And every one has a right to complain about whatever they want to on facebook! I do know that - and it's ok. I just have moments that I am so overwhelmed and literally take it one minute at a time.

I am SO SO SO grateful for everything so many people are doing for us. I am grateful for a friend who thought to film Michael getting his Arrow of Light at Pack meeting last night so John could see it (and as I completely lose it on stage balling). I am grateful for every single dinner and every time someone stops by just to say HI, I am grateful for every single hug, I am grateful for a Bishopric that has taken over so many things for Jenna's baptism tomorrow, I am so grateful to have family near by, I am grateful for a friend who mowed my lawn, I am grateful for every single card we have gotten in the mail and especially grateful for the fasting and prayers for our family. Every one is so helpful and supportive and I do not know how I could do this with out each of you in my life.

Some times, it is just plain HARD!

Back at the Hospital

So, I didn't blog yesterday because John has been doing so well. There was nothing to blog. He went to work for 2 days, he's been eating fine, just lower energy. He was thrilled to watch the Giants play in the World Series last night. Everything was going ok :)

Last night I woke up at 1:30 am to John calling my name. He was in the bathroom puking :( I got him some anti nausea pills and that helped a little. But both of us have been up since 1:30 am. John was also developing a fever. The magic number to call the hospital is 100.4. His stayed around 100.1 for a while. Early this morning it got to 102. But he was feeling ok. He was no longer nauseas and wanted to eat. We called the hospital and they wanted him to come in to the out patient clinic. It took some thinking but we decided to see if one of Johns brothers could take him in so I could stay with the kids and get them to school.

So, Jeff comes to get John at 6 am ( and it is snowing). I get kids up and to school and then go to the hospital. John is doing ok. He has no fever an was ready to eat :) They have an iv fluid drip in him and took blood for lab work. They want to make sure he does not have a blood infection, but have to culture it for 24 hours. The Dr came in and said he wanted to do an X-ray too to make sure John does not have pneumonia. So we go down stairs for am X-ray and results come in saying, YES, he somehow came down with pneumonia over night :(

We wait a little longer and find out they do want to admit him. Ughhhh!!! So I make a list and run home to pack for him and to eat some lunch. I go back and unpack for him, take him on a walk and get him some lunch. Then, I had to get home to get kids from school. Now on to do dinner, and Michael has a pack meeting and Abby is babysitting. Oh and the Dr said as long as John is feeling ok he can at least be released for a few hours on Saturday for Jenna's baptism. But best case is he will be home for good.

I HATE CANCER!!! Today has not been a good day.

Family Pictures

Thanks to a fabulous friend, we got some family pictures before John went in to the hospital (about 3 days before, but we did not know that yet). Here are some favorites:

Stem Cell Transplant

OK - the next step. So, right now John is doing chemo, steroids and something else :) His body is doing fine with it and we want it to keep bring down the white blood cell count for as long as possible. Then, he has a choice to make. Auto vs. Allo (those are the short names for types of stem cell transplants).

Auto is where they take out John's stem  cells and freeze them. Then through high doses of chemo and maybe radiation kill all the cells in his body. Then put his that were frozen back in him. It has been explained that it is kind of like a garden and the stem cells regenerate through out his body. He would be in the hospital about 4 weeks and then resting at home about 2 weeks before he could work. Pros are that his body should accept his own cells and there should not be a problem or complications. Cons are that the cancer will come back - could be months, could be a few years.

Allo is a donors stem cells. We are hoping his is matched to either his sister Christy or his brother George. They only test full siblings and then go to a donor bank and do their best to find a close match. They do the same thing and through chemo and radiation kill all his cells and input the donors. He would be in the hospital any where from a few months up to a year. Biggest pro is that he would be cured since it is all new cells of some one else. Con is that bodies do not always accept a donors stem cell. It is a lot more risky.

HMMMMM - ya, well for John only doing auto is not a choice. They can do it a few times, but after 2 - 3 times it stops working and his life may have been extended 5 - 9 years. He knows he will do the allo and take the risk. Just not sure if he will do it first or maybe do an auto once and then the allo when the cancer comes back.

He has great Dr's and they have said it is fully his choice. Don't ask me what I think? I have no idea. It is something that has to be decided, but luckily not quite yet. It will take a lot of prayer to figure it out.

He is HOME!

YAY! We are so happy to have John home. The hospital had to wait until his white blood cells were at a certain level. And then on Sunday his phosphorous levels were low so they put him on a drip for that. Sunday morning I took the kids to church. It was such a busy marathon of a day. Then we came home and Abby grabbed something to eat and then ran back to church for choir practice (I am SO glad the church is literally right across the street). Then I fed the other kids quick and took Jenna back for her baptismal interview with our Bishop. Then we all went to our old ward. Some friends; Tammy and Olivia were singing "I Know the my Redeemer Lives" for John. And since he was still in the hospital I took all the kids and voice recorded it. They did amazing and I cried the whole song, the spirit was so strong. We snuck out after the song so I could take the kids to the hospital (at this point we still weren't sure when John was coming home). We we left the chapel, several people followed me out to give me a hug and asked me to tell John he is in their prayers. I just couldn't stop crying.

I take the kids to the hospital and John was feeling fine and said he could go home in a few hours. My good friend from high schools husband was working as a PA Sunday. So Danielle went to work with him that day. When we got there it was so good to see them. Jim came in after his shift and showed John all his images from his x rays and bone scans. Since Jim knew us, he said he would show John anything he wanted after his shift. It was so nice of him. He spent about 2 hours with John. Danielle and I took the kids outside and let them run around for a while.  Then I took the kids home and Jeff and Rachelle met me at the house. They watched the kids and did dinner with them so I could go get John.

John was almost ready when I got back and we loaded up and left. We stopped at a pharmacy to drop off prescriptions and came HOME!!! Kids were so excited to see him and John was now so exhausted. Luckily it was still before bed time so the kids got to see him. I got the kids in bed and Jeff went and picked up the prescriptions for us. (Right now he "only" has 7 - but 4 are for as needed side effects).

He has to go in to the outpatient clinic at the hospital every 4 days for about 2 hours for chemo and blood work. John rested yesterday and was just low energy. He is feeling ok, except for his hurt ribs. He has 6 broken or cracked ribs and that makes it hard for him to sleep. He still has not had any naseau and we are hoping he doesn't. No hair loss - yet! he may or may not. His hiccups are gone but he has not been taking the steroids - he takes them again on days 8-11 of his cycle. John made it in to work today - got there about 10:30. We will see if he can work the rest of the day. He did not have much energy, but luckily all he has to do is sit and talk on the phone.

I am really trying to get into a normal routine of life with a husband with cancer :) It is so nice when I can pick up kids from school and John can work and we can eat dinner as a family :) Until John has a stem cell transplant, everything is out patient now. Unless he gets anemic, a fever or an infection.

I am doing ok. Frustrated that I can't do everything. Michael had a volcano school project due yesterday that we had totally forgotten about :( And last night Abby was up super late working on a science project that is due today. I forget when bath nights are and life is flying by. One of these days I will figure it out. But, for now I am SUPER grateful for everyones help and the dinners that have constantly been coming in :)

Going home one of these days . . .

AHHH - still at the hospital. Day 5! John is feeling fine, but just wants out of here. I can't imagine if this was for 4 weeks (although it will be when he has his stem cell transplant).  He has been doing fine on the chemo. I think his worst side effect is the hiccups :) It can last for hours. I am getting into an odd routine of getting the kids up and getting us all ready. Then kids to school or a friends house and then I come to the hospital and stay till 3-4 pm each day. John usually showers when I get here, and we go for a walk. I try to bring him real home cooked food for lunch/dinner, we play games, go for a wak and then it is time for me to go home. In between all of this there is typically several visits from the Nurse, the CNA, occasionally the PA, the Dr. once a day, social wokers, John's coordinatior, phlebotomist and that's all I can think of for now.

John started chemo Wednesday night. Dr. wanted to monitor for 4 days or until his white blood cell count goes down to a certain level. Still waiting for that. It is going down though, so now the hope is he  can go home tomorrow. It will be nice to get some normalitiy to life. John should be able to work, although he will have to come to the hospital every 4 days for an IV chemo treatment and blood work.

We have a busy week next week with family and friends coming into town for Jenna's baptism on Saturday. We are all looking forward to that. John should be able to baptize her and confirm her. But I have told him he has to leave and go home and can not stay to socialize at all :) With his white blood cell count coming down he has to be EXTRA careful about germs.

Well, that is an update for now. I am doing good and feeling ok. It is just hard and it sucks, but we will make it through this. We are amazed daily by the love, support, prayers, fasting and help we constantly recieve. Thank you every one for everything. Time to take John on a walk.

Hospitals Stink

Yes, hospitals stink (literall smell), and they just suck. We can't wait to  get John home and I am so glad this is not for 4 weeks!!! Hopefully only 2 more days, maybe 3 till John can come home.

I don't have any thing really new to report. John did actually start chemo last night. They are monitoring him on it and so far not really any changes in any way. He has not had any side effects other than tingling lips and high blood sugar. He feels fine and has normal energy.

I took the kids to the hospital today. They have really missed John, but were all anxious about going to the hospital. I think it was good for them to see that he is normal and not sick in a hospital bed :) They were not so sure about him having to put on gloves, a robe and wear a mask though just to leave his room. The kids and I were there for about an hour and I felt bad leaving. John has movies, books. games, computer, TV, but it is just boring over there. And I still can't believe how often people are in and out of his room checking or cleaning something. We just want him home.

Roller Coaster

Blogging from LDS Hospital - Room 848

OK, so - Tuesday morning: Actually, John had a bad night Monday night and did not sleep much. The bone strengthening injection he had Monday gave him awful bone pain. All night long he was in pain and very nauseas.  Early in the morning he had a fever over 101 so I had to call Dr. Frame. He said to give him tylenol and said he was hoping John would be at the hospital soon. I asked John if he wanted a blessing and he said yes, so I had our new friend Matt Moore (from our new ward) come over. As soon as the blessing was done John felt a lot better, fever was going down and he felt like eating. We were waiting to hear from the hospital though. John wanted to give all the kids a blessing so he did that and I took the kids to school.

As soon I walked in the door from taking the kids to school John said the hospital called. He needed to be there in 1 hour and he should expect to be there for 4 weeks!!!!! OH MY! We packed quickly and headed over to LDS Hospital. What a day we had!!

We got here and it was constant people in and out. Tests and tests and tests. They did an EKG, and took him for a full MRI. There were 2 nurses, a PA, a coordinator, social workers and the Dr. I stayed with John for a ferw hours then went home to shower while they were doing tests. Came back around 2:30 and Dr. Hoda came in. He is great and explained what was going on. Basically John has multiple myeloma that turned into Plasma Cell Leukemia. Only about 2 % of MM patients get this so it is really rare and usually in patients older that 50.

Bascially the plan is to start him on Chemo Monday. It is a 3 drug combo to try and basically get him into a sort of remission. It is a 21 day cycle. Mostly oral pills and he will now come to out patient at the hospital every 4 days for about 1-2 hours of chemo. He should be able to work through most of it as long as his body is responding well and he does not get an infection. Oh and Dr said he would NOT be here 4 weeks, only a few days :)

The long term plan is a stem cell transplant. Long term actually meaning anywhere from 6 months to 2 years. Just depends when his body is ready for it. A stem cell trasnplant can cure him in a way, but has many risks. It is our only hope though and we are positive and know John can beat this. A stem cell transplant is not fun :( and in hospital for 4 weeks then. And it is not always easy to find a match.

We are taking it one day at a time and praying his body is accepting of the chemo treatments. Plasma Cell Leukemia is rare and aggresive and not easy to treat. The Dr's are being aggressive with John and we are hopeful that with him being younger and healthy he will make it through this.

Last night I had a hard night. I got home to get the kids around 5 pm and a friend brought dinner. Kids were pretty hyper. When I get anxious I have a hard time eating. I was eating ok yesterday and even ate dinner. I felt nauseas though and my dinner did not stay down. I was just freaking out about everything and shouldn't let my self do that. I slept from about 10-3 and then could not go back to sleep. Finally got up about 6:30 to get Abby ready for school. I was still feeling nauseas and could not eating this morning (isn't John supposed to be the nauseas one). I had been praying all night for peace. I am just freaking out and cancer has taken so many people from me and I am not ready for it take take my husband. (Just pased to play Phase 10 with John)

I got the kids all to school and came home to shower and cry. I try really hard to not cry in front of the kids. I got ready to come to the hospital and was getting in the car.  All of a sudden I had this instant sense of peace come over me. It was just what I needed and has stayed with me all day. I was able to eat and am feeling fine.

John is doing good. They gave him a sleeping pill last night but then woke him up all night to check vitals and take blood. His bone pain from that injection is gone, he did have a fever at some point last night though. Not sure what is causing that. Dr. Hoda came in again and said he changed his mind after talking to his board. They are starting John on chemo today and doing one 28 day cycle with a different drug. Then will start the 21 day cycle after that. They want to monitor him for the first 4 days of chemo so now he is here through Saturday/Sunday. We all can't wait for him to be home. Dr. says he should be able to work through most of the chemo.

Dr. also said John could go for a walk out side  and we were about to go. But, they just came to get him to take him for a bone survey. It is basically x rays of all his bones. I think it is kind of funny that he needs permission to go out side. He feels totally fine and is not "sick".  When we get him home this weekend he can go out all he wants :)

He hopes to be at work Monday or Tuesday and Dr. said he should be totally fine to baptize Jenna next Saturday. Every thing is one day at a time, but John will be fine.

I hate this

OK - here goes:

Well, first off - Saturday was kind of busy. But, a good day. Around 4 pm we met my friend Melina and she took family pictures. I am so excited to see them. The kids were pretty hyper, but I am sure we have some good ones. Then we ended up having Rachelle's birthday dinner at our house because they lost power. It is so nice to only live 1 mile apart :) It was a little later night for the kids but it was fine.

Yesterday was great. We had a very nice Sunday and John sang in church and did amazing. We had a birthday dinner for Jenna with family and it was so nice. She wanted BBQ hamburgers and chips and jello :) It was kind of crazy, but it was fun. And fun to celebrate Jenna's birthday early. Abby reminded me today that last year we moved on Jenna's birthday - poor Jenna!!! Next year she gets an extra special birthday :)

So, this morning we got the kids to school. John was scheduled for his first chemo treatment at the Dr's office. It was supposed to be for 8 hours and some one was supposed to stay with him. So, we were packed for the day :) Books, movies, lap top, games, food.  We were ready. First we meet with Dr. Frame. He comes in and talks to us. He tells us that after getting the results of the tests from last week things have changed. John does not have Chronic Lymphocytic Leukemia. He has multiply myeloma and probably also has Plasma cell leukemia.!!!! I was not surprised to have a different diagnosis, because he did not have much to go off of to guess the CLL. They needed to do more tests to figure out what was going on. This diagnosis made more sense because John has been breaking his ribs so easily and that is what happens with multiple myeloma (MM). The only good news we got was that the CT Scan came back perfectly fine. Still waiting on bone marrow biopsy results. This type of cancer is somewhat similar to CLL, but different chemo treatments, pretty much same side effects. So today was just a 20 minute IV injection of bone strengthener. We were home by noon, which was nice. I was able to get some things for Jenna's birthday. John was scheduled to start the new chemo treatment in a week. Mostly oral pills but in the office twice a week for a 1 hour IV chemo treatment.

Well, we were home and John had a question for Dr. Frame. He calls and leaves a message. About an hour later Dr. Frame calls him back. He said there was a change of plans. He is referring us to a specialist at LDS Hospital. The hospital would be calling us tomorrow morning and to tell us when to come in for a consult tomorrow. AND very likely John will be admitted to the hospital tomorrow for in patient hospital treatment!!!!! The cancer is more advanced than they first thought and we need to start aggressive treatment NOW!

It is not easy to hear this with all your kids right there.  John and I were both trying to hold it together. We have no idea what this means. All we know is that it is bad enough to need a specialist and he needs to be treated in the hospital. We have no idea for how long yet.  After dinner we told the kids. It is hard to tell them with so many unknowns!! Abby and Michael are having a hard time. Abby is NOT herself and is very quiet these days. Michael says he cries at bedtime. I HATE this!! All I can tell them is it isn't fair, it is ok to cry and we will be ok.

An interesting thing is that I have a friend from high school that lives about an hour south of here. Her husband as a PA and works for this new Dr. Dr. Peterson.  He says he is the best and it is great that he specializes in this.

Yes, today has been a roller coaster and now John will be admitted to the hospital tomorrow or possibly later this week. Tomorrow we will find out more.

Bone marrow biopsy

Hmmmm - ya, John had a bone marrow biopsy. They kind of make it sound like it is no big deal!!!

We get the kids off to school and John has his appointment for 9:30 am.  We get there right at 9:30 and he checks in. They call him back pretty quickly. The nurse asks if I want to come and I am like "no thank you". I would not do well watching something like that :(  After about 15 minutes, a lady comes to ask me if I want a free massage. We just happen to be there on free massage day :) I felt bad getting a massage while John was getting a biopsy!! It was just a 15 minutes massage, but was relaxing. After I go sit down again, a nurse comes to get me and says John is asking for me. I go back and they are done with the biopsy. But, John did not take it too well.  He almost threw up and almost passed out - good thing I wasn't in there. He was very pale and had a rag on his head. One of the nurses went to get him some juice. It took about 10 minutes, but eventually he was ok to get up and walk.

I told him they were giving free massages and he could ask them to just do his shoulders. So, we are walking over there and we run in to Pres. Wakefield. He is our old Stake President. He looks at us and says, "what are you doing here"? John tells him what has been going on. It was so good to talk to him. He is the Director of Radiation for Salt Lake Cancer Specialists. John went to get his massage and I talked to Pres. Wakefield a little longer. He told me if we needed anything to call him and he gave me a card and put his cell and home number on it. That office we were at for the biopsy is not the regular office where John's Dr. is. But, we think we are going to switch over there after his first round of chemo. We have been there several times this week and really like that office and the staff and nurses. And it helps a ton knowing Pres. Wakefield is there too :) He also told me some Dr.'s we could switch to over there.

I get John home and he is just kind of tired, not talking much. He is doing fine, but has been just relaxing today. They said he would be a little down for about 24 hours. He says he is not in pain though, so that is good. Results from the biopsy take about a week.

And that was a day in our house.

Feeling Loved

Today was quite a day. John went to work, kids went to school. I have really been feeling the need to go to the temple. So after taking the kids to school I was able to go to the Jordan River Temple. It was nice to just feel the peace from being inside the temple.  After that I met a friend from our old ward for lunch. We just sat and talked for 2 hours. It was SO nice, I really needed it. Today was a day of giving. This is what happened:

• First Richelle paid for my lunch - made me cry.
• Next, I came home and a friend from our new ward came over. She hugged me and I just cried and cried, and then she brought dinner, and then said she would watch my kids Monday and then said she would take treats to Jenna's class Monday for Jenna's birthday - I cried.
• Then, had a message from a car pool friend saying she wanted to drive my car pool mornings. - I cried.
• Then someone else from our ward said they would have dinners brought in next week - I cried.
• Then another friend offered to make Jenna a birthday cake Monday - I cried.
• Then, another friend from our old ward called and said she was bringing a dinner - I cried.

We feel so blessed to have such great friends near by that are so thoughtful. This is all on top of already having 3 dinners brought in this week, friends watching my kids yesterday, friends bringing books by, lots of phone calls, lots of emails and lots of hugs.

We really are going to be ok. Thank you every one, we love you.

a Port???

Today John and I had a chemo class.  In a weird way it was kind of neat to learn a lot and what to expect. We watched a video with general information. Then they went over a lot of stuff to do with eating and drinking and diet. Then went over stuff about infections and what to avoid. They talked about the free classes they offer - even a free massage therapy (that I can go to).

The odd thing was that the nurse was telling us John would have his chemo administered through a port. She had gone over every ones files and asked John if he had his port in yet. We told her NO, but the Dr. had told us that his chemo would be done in the office. She said it must have changed and he needed to get his port in?? We were so confused. So, after the class we asked her to check his records again.  Good thing we did - we were right. They had the wrong info on his paper.  I think it is kind of funny, but am glad we had her check.

We will see how right she is about John's hair?? Apparently he should start losing it right around my birthday and it would all be gone within a week of that. Usually about day 14 after you start chemo. When his starts to fall out, he is letting the boys shave it all off :) We are really hoping chemo does not affect him too badly. They say you really should be able to carry on a normal life style. Just with out as much energy. You should have fatigue, but it should be level. Also, super important is to get John to exercise 30 minutes every day!!!!

We do not have any results from the tests yesterday. Although the Dr. does have them. Not sure when we will get them. Maybe not until Monday when we go in for his chemo.  One day at a time.

Abby's turn

At first John and I were most worried about Abby and how she would take her Dad having cancer. When we told everyone she was pretty calm and did not seem very upset. Later that night she said she was nervous about the unknown and she thinks she will really learn responsibility now :) She has been very helpful with the other kids and not showing much emotion. But, I know all the kids are sensing the stress of John and I. And several kids have been sick, including Abby. Her throat is so sore and she has very little voice.

This morning Abby got up late and was rushing to get ready. She isn't feeling great, but there was something else. I asked her what was wrong and she said, "I'm just stressed, tired and I don't feel good". She was supposed to be leaving for school in like 3 minutes - and we were driving car pool today. I finally sent John to pick up the other car pool kids and he said he would be back for her in 5 minutes. She was ready for school, but kind of distant. So, I went to talk to her and she just started crying and crying. I asked if she was worried about Dad and she said "kind of". So, I called John and told him to not come back for Abby, that I would take her later.

So, I have her home with me. She really doesn't feel well, but I know there is more to it. I think she needs a little break. So much of this process is reminding me of what I went through as a kid finding out my mom had ALS. Difference is ALS is terminal and no remission or cure of any sort. I just never thought my kids would have to go through what I went through. I figured I had had enough for all of us :)

This is just the beginning . . .

No child should . . .

I am sure this will be the first of many: We were having dinner tonight and Jenna was asked to say the prayer. Her birthday is in one week - day 1 of John's chemotherapy treatments. In her prayer she says, "please bless that Dad will not have too much cancer and will be able to have some energy for my birthday"!!!!! I had to hold back those tears. It broke my heart. No child should EVER have to worry about her Dad having enough energy to be able to celebrate her birthday :(  I can not believe this is happening.

Tests

As I am writing this, John is at LDS Hospital getting a bone scan and CT Scan today. He was able to go to work for a few hours this morning. All I know was that he had to go having been fasting for 4 hours. When he got there, they hooked him up to an IV and he had to drink this radioactive lemonade stuff.  8 oz every 20 minutes for 1 1/2 hours. He was first going to have the CT scan, which I am pretty sure was for most of his torso. They need to see if the cancer is in any of his organs. Then the lemonade stuff is for his bone scan. The radioactive stuff makes it easier to see the bones on the scan. He should be home in about 2 hours.

It is odd to me that in our every day conversations we talk about Chemo, medications, CT scans, bone scans, Doctors, white blood cells. . . And I am sure that list will grow as time goes on. I will forever be grateful his cancer was found when it was, but I still feel like I will wake up one morning and realize it was all a bad dream. It just does not feel real that this is happening to us. It is hard and we are just beginning.

Every one asks how I am doing. I am doing ok, but I can be folding laundry and just start crying out of no where. And when my 6 year old is acting out and then tells me he is nervous about Dad's cancer, it is so hard to not cry and instead to comfort him. Our kids have so much faith and pray for John like crazy. They are amazing. We all have faith and feel like John will be around for a long time :) Right now we are taking everything one day at a time though.

Word is out

After telling the kids, there was no holding back. And what's the point? Every one is going to find out. We had told all our family and close friends. I texted a few people because I did not want them to find out on facebook. John put it on his facebook Friday night. I did Saturday. I think the world knows now :) We have amazing friends and support. We had friends and family bring dinners Thursday, Friday and Sunday nights! It was so nice to not have to worry about dinner this past weekend - thank you everyone. Our old Bishop called John last night once he had heard. Every one is SO supportive and helpful. I am so grateful for that.

Here is John and I at City Creek after lunch before Conference.

This is in the Conference Center before Conference. Abby is in about the middle of the picture in the choir loft. On the aisle of the sopranos 4 rows from top.  

Saturday we had a nice day. It was a busy morning as we were getting Abby ready to sing in General Conference!! John and I got ready and took the kids to Jeff and Rachelle's. Then picked up Abby's friend Aija and went to the Stake Center to pick up more girls. We were helping car pool kids to the Conference Center. They had to be there by 10:45am. So we dropped them off and had a few hours. We went to City Creek and had lunch. It was so nice to sit in the sun and relax a little. I don't think we will have too many days like that in the near future. We went to the Conference Center before 1 pm and got our seats. We were on the floor and had great seats. It was AMAZING to be at General Conference. The Choir did fabulous and the talks were perfect.

Telling the kids

So, we had decided to tell the kids Friday night at dinner. John was real nervous and wanted me to tell them. I wasn't too worried about it. I told them our lives are changing, that Daddy's body isn't working right. We explained that his blood is not doing what it is supposed to and he has a disease called leukemia. We told them it is a type of cancer, but Daddy has not done anything wrong.We told them that he has to take lots of medicine to fight the bad cancer cells. That he will probably get really sick when he has chemo treatments. We also explained that we won't have any extra money for things like eating out or going to the movies. That we will have a lot of Dr bills and Daddy won't be able to work as much. I told them I would need their help.

Every one seemed ok. I think it is good that they don't have a bad connection to cancer. They asked a few questions, and seemed ok. Later that night Michael had more questions. He is the one that is the most worried. All we can say is that Dad should be ok and we all need to have faith and pray and fight.  Abby seems ok. She says she is nervous about not knowing and she has a feeling she will really learn responsibility now. Isaiah has been acting out all weekend and maybe this is why. He just does not know how to express his worries. Jenna has actually been sick with a fever all weekend, but has not said much about John. Emma has been pretty quiet, but said there is a girl in her class whose Dad died from cancer this past summer. So, I am sure she is worried.

Life shouldn't be too crazy this week. But, John starts chemo one week from today. We are SO hoping he does not get super sick. We will see.  John and I go to a chemo class this week to learn more about what to expect.

AHHHHHHHH!

John and I met with Dr. Frame today. He is our Oncologist. We liked him. He is pretty sure that John has chronic lymphocytic leukemia. We are in for a fight and it won't be easy. It is possible it has spread to some of his organs.  I sat in that office pretty much knowing John has leukemia, but I think hearing it, it feels different. I am glad to know and to be moving forward and full force, here we come.

Next week John has a bone marrow biopsy, a bone scan, an xray, a CT scan and more blood work.  Then Monday, Oct. 15 is his first day of chemo. He will have 3 days on 25 days off for about 6 months. In a few months the Dr. wants to do a bone marrow transplant. I can't believe I am saying all these things. I am kind of in shock. He has a good chance of fighting this, but it will be a fight and a long one. It can take 1- 2 years to get it under control.  It can be "cured" in a way, can also live decades with it totally under control. First step is to start fighting.

John went back to work after his appt to talk to his boss and his HR. We need to see what they have for disability. His 3 chemo days each month are definite chemo days and he won't be able to do anything else.  Then usually he will be pretty weak and sick for another week or two. Then he might have 1 or 2 weeks each month he could work. We won't know until we start.

Right now I am totally overwhelmed with all the appointments and picturing how our lives are changing. I know it will be ok. We are fighters and have no choice but to fight. We will tell the kids tomorrow. We are worried Abby will have the hardest time with it. I am going to really need her help. We have great kids though and they will be fine.

Here we go!

Tomorrow

So, in a weird way I am almost excited for John's appointment tomorrow.  This anxiety of not knowing is awful.  His appointment was changed to the morning. Which is good because all the kids are in school and they can do all their tests that they want to. Which hopefully means results will be in Friday.

I am grateful for the Dr. who ordered the MRI of John's shoulder, so this was randomly found. I keep thinking worst case, but reality is that just because he has a hight white blood cell count, he does not necessarily have cancer.  He could have one of many infections. But, the oncologist has to figure out what it is. A lot of things are leading to leukemia, but he does not have any of the typical symptoms.  I REALLY just want to know what it is and how we move forward.

We are both so stressed and anxious and the kids are sensing something is up. I worry about the kids, but they are amazing and strong kids. We will all be fine.

Miracle #1

So, honestly yesterday I was having an emotional day.  Most of the time I really am optimistic. I know what ever is supposed to happen WILL happen. John and I both really feel all will be fine and he will be ok. We just need to get started.

So, I stayed home with Isaiah yesterday since he had a fever. I always miss church when I can't go. I need the spiritual upliftment each Sunday. But I know John needed it more. So, it's the end of the day, the 4 younger kids are in bed and John went to pick up Abby and her friend Aija from Choir practice.

A few months ago Abigail was invited to sing in a youth choir for General Conference. AMAZING opportunity. The 9 Taylorsville Stakes were invited, but each ward could only have 5 youth. We had just moved, and our Bishop knew John sang. So he asked us if Abby did too. So, the Bishop recommended her. The Stake Presidency makes the final decisions and she was chosen. She has had a ton of music to memorize and had rehearsals 1 - 2 times a week for a couple of months. As soon as we found out, we asked our Bishop if he could get us 4 tickets to that session of Conference (we wanted to be able to take Michael and Emma). He said he would do his best. In the end, our ward was not given any tickets for that session. We found out that Abby would receive one ticket for a family member. I had decided that John should go. We asked around and were hoping for another ticket so I could go, but have not had any luck.

So, last night, it is like 8:30, kids are in bed, I am in my pj's and John went to pick up Abby and Aija. There is a knock at the door and I open it and have no idea who it is. She knows me and introduces herself. She is the choir manager for this choir that Abby is in. She told me she had one extra ticket and she really felt like she was supposed to give it to me!!! She drove to our house to give it to me and was so so nice about it. We totally felt our prayers were answered. But, the story continues because we found out, this was not an EXTRA ticket. It was HER ticket.  I totally started crying and wanted to give it back to her. But, I couldn't because I know I need it.  I don't know why, but John and I really feel like we are both supposed to be there for a reason. And not just to see our oldest sing :)

This is just the beginning of knowing the Lord is watching us and will bring us miracles!

A fever

So, yesterday Isaiah (6 years old) came down with a fever of 102.  Not a huge deal, if we knew what John had. If he does have leukemia, he needs to do his best to avoid any infection or virus. So, I am trying to keep Isaiah and John apart. Not so easy. They both love each other :) And Isaiah does not understand WHY? We just told him that Dad isn't feeling well either and we don't want them to get each other sick.

I had John go out yesterday and buy a nice recliner rocker. He found a great one for under $300.00.  I was home with the kids and told him he could not lift it. His bones are weak from bone marrow abnormalities and he has already done something to at least 3 bones in his torso. Luckily Abby and Michael were able to help me and we got it in the house and in the bedroom and all set up. It is super comfy and John loves it. The hope was that if he slept in it, he would sleep better. That did not exactly happen. He tried to last night. It is comfortable, but John is just in constant pain under his ribs. My theory is it is his spleen. Which can swell and cause pain with leukemia. He does not  think that is it. Hopefully we will know soon. And hopefully a Dr. can give him something so he can sleep comfortably.

Yesterday John said he was not feeling well. I think he was over doing it. He got up to let me sleep in; he did chores and ran errands with the kids. Then took Michael out to lunch, then went to Target, Kohls and Big Lots. I just think he needs to take it easy. His body is not working right and I think he should slow down.

I am doing ok. It really depends on the moment. I am exhausted and not sleeping well because of anxiety. And I have lost 4 lbs this week (which is actually ok, but not if I keep losing that much every week). My stomach just hurts and I do not feel like eating much.

We are so ready for the appointment on Thursday. But, I don't think we will find out anything new. Pretty sure he will say John has lymphocytosis and they need to run a bunch of tests to figure out what is causing it. But, we are ready to move forward.

I think this is the waiting game

It would be so nice if we actually had real information. John spent a lot of the day yesterday on the phone with Cancer offices. He was referred to a Dr. but we would rather go to a Dr. that we know someone recommends. Jeff and Rachelle have an ex Bishop who has leukemia so we have his Dr.'s name. John was trying to get in to the Huntsman Cancer Center too.

He really liked the people at Huntsman. They were super nice and understanding. They even requested his blood work and had a Dr. look at them. That Dr. said John has lymphcytosis.  Basically that means, yes, his white blood cell count is high due to an infection of some sort. Most likely leukemia, but it could be many other things too. We now need to figure out the why!

We have an appointment with Dr. Frame on Thursday afternoon. Not sure how much more he will tell us.  Probably that we need to do more tests to figure out what is going on for sure. But he can at least read the results and we will see what he says. If John is diagnosed with any form on cancer, we will switch to the Huntsman. We can't go there until we are for sure what it is.

So, for now we still wait and pray and have faith.

Another day of waiting

I don't have a whole lot to add.  But it does help me to sit and get my feelings out. Actually the blood results are in. Dr. Hansen (who is simply an orthopedic Dr) called John.  He said he can not diagnose anything because that is not his job. But said the white blood cell count is really high and his pathology is abnormal. He is referring us to an oncologist and he will send John's records over to them. The fact that he is sending us to an oncologist tells us he has cancer. From our research we are still pretty certain it is leukemia. He has an appointment with an oncologist but it is 11 days away!!!!! TORTURE!!!!!!

John is still looking for another great oncologist that could get us in next week so we can get moving with this. I keep looking to the future and wondering what it will bring. My biggest concern is finances. We are fine as long as John can work and we can keep our health insurance. We do now someone else with leukemia who takes chemo pills and in 3 years has only missed a few days of work. We are hoping John can follow in that category.

We have not told our kids yet. We are wanting to wait until we have more information to tell them.  It is so hard to try and remain normal for them. All I want to do is cry. John and I did have priesthood blessings. They were very comforting and we are grateful for that. I was told that the Lord has prepared me for this. I am trying to be strong for John and the kids.  But, honestly am having a hard time. I constantly feel like I want to throw up, so as a result I am eating very little. It takes me forever to fall asleep every night and I only get a few hours of sleep. John is very uncomfortable with his ribs hurting so he tosses and turns all night.

I am so glad to have family near by and to have the support we do.

Our lives are changing

Yesterday was a day that has changed our lives. About 6 weeks ago, John was raking and pulled a muscle (or possibly cracked a rib). It started to heal after a few weeks and was almost better. Then, one morning woke up with a very sore left pectoral muscle (as far as he could tell, that’s what it was). Then about a week after that, he was doing a push up and heard a pop and hurt his left shoulder somehow.  THEN, a week ago he was holding his nephew Calvin and went to lay him down and hurt his left rib. It all kind of became comical at how often he was getting hurt.

His shoulder pain was bad so he went to the Dr. for that.  2 Dr.s, including one bone specialist could not figure out what it was. So, an MRI was ordered for him. He was so not excited about that and it was starting to feel better. He went in for the MRI anyways. He really did not want to pay another specialist co-pay so he called to cancel his follow up appointment and asked to have the Dr. call his with the results. Dr. Hansen called him and said he was not sure about the shoulder, he could not tell from the MRI. But, they did see lots of irregular bone marrow in all of his bones they could see on the MRI. He ordered another MRI to be done and blood work.

That phone call came yesterday. This morning John went in and had the blood work done, we will have the results by Friday. A few months ago he had his physical and his blood work was real messed up, his white blood cell count was WAY high. The Dr. said it was most likely because of stress and we had just moved. 

First thing the Dr wants to do is rule out lymphoma. That is worst case. If he has lymphoma, that means he has cancer that started in lymph nodes, spread to organs and finally to bone marrow. He would have stage 4 cancer and not much can be done. He does not have any of the signs of lymphoma other than irregular bone marrow. So, we are praying that is not what it is. Good chance he has leukemia. Not sure if the blood work will tell us that or not. I HATE the waiting game. I don’t think there really is a “good” situation. No matter what the results show, they will be bad.

I have had every emotion possible in the past 30 hours and probably cried more than I ever have my whole life. Worst part is that we don’t even know what it is yet!!!! All I know is that we are in for some trials. I wish we knew, so we know what is next. It may be a week or longer until we know more. 

I really don’t feel like it is time for John to return to his Heavenly Father. But, every one probably says that. I NEVER thought this would be something I would face again in my life. I lost my Dad and my Grandma and 2 Grandpa's to cancer and it will not take my husband!