Appointments

Jon had two appointments this week. One was with Dr. Stinnett, the other with Dr. McDonald.
Dr. Stinnett just wanted to follow up on the chemo to see how Jon responded to it. Jon did very well with the chemo. His white and red blood cells were both very low at his appointment. That is normal for chemo. The counts go up and down. Other than the low blood count, everything looked good. The doc just said because of the low blood counts he is more susceptible to catching illness so if he got a fever we would need to call immediately. Jon woke up early this morning saying his whole body was hurting. So I took his temperature, it was 99.7 which is a little high. Since it was so early I told him to take a tylenol, to see if that helped anything. His temperature went down and didn't come back up. I talked to Dr. Stinnetts nurse and she said it was nothing to worry about especially since it went back down and that it wasn't above 100.4. So hopefully it was just a minor thing that wont come back. The next chemo will be in two weeks.

The appointment with Dr. McDonald also went well. His kidney function is still not normal, but is way better. His protein levels were extremely high before, but have gone down a ton, so that's good news. The swelling is also way down, almost non-existent. Jon has lost 40 pounds since he has been out of the hospital. None of his clothes fit him, they all keep falling off. Also, the lupus had caused a lot of his hair to fall out, he wasn't bald or anything but very thin up top, I went to take a test last week and when I got home he had shaved his whole head. I should take a picture, I will do that.... sometime.

Some more good news is that I finished up summer semester! I even got good grades in my classes. I was taking 15 credits over the summer so I am very proud of myself. I'm not trying to brag or anything, I am just so happy to be done and finally on summer break, for two whole weeks! Then back to school....

We still appreciate everyone and the support they have given us. It feels really good to be getting back to a semi-normal life.

Chemo

Jon had his second chemo treatment yesterday (the first was in the hospital). He will be doing one a month for six months total, so not too bad. He did well. He was just kind of woozy all day yesterday and then he said he could not sleep at all last night. They gave him some anti-nausea medicine before they did the chemo and they gave him some anti-nausea pills to take home. He has had to take a couple of those. But he is doing really well. I think we will continue to see some of the effects of it for a few days. The chemo was administered at the Utah Cancer Specialist clinic, it has been hard for Jon to be sick, but it is devastating to see what cancer patients have to go through. There were four women there having chemo treatments for cancer, and they were all young, like 30s and 40s. I couldn't help notice that they still kept a smile on their face. What a great example! Faye has also been a great example. She is one amazing four year old!

Jon continues to progress. He has worked for two weeks now. It may take a few months to see the effects of the treatment. His hemoglobin levels are still very low at 9.5 (should be around 16), and his platelets are still low at 105 (should be 150). He is hanging in there! We have been discussing vacations for when he is done with all of this. Any suggestions?

Update

Sorry, I would update more if there was anything to update. Nothing has really changed or happened since my last update. Jon starts treatment this Friday morning. We don't know much about it, but I will post more after the treatment. He has been able to go to work everyday, just very tired when he gets home. I think he is doing a little bit better, but he still is in pain often, still has swollen lower legs and feet (he can't get most shoes on still, the ones he can get on for work, but can't tie them, and on Sunday he had to wear flip flops to church because he couldn't even get the shoes onto his feet--- so ward members, don't be offended, at least he was there!) and he is very, very tired. He is far from his old, normal self.

I have to do an update for my kids as well. On Monday I had an appointment at Weber State, so my sister was coming from Salt Lake to help with the kids. She just takes FrontRunner so had asked if I could pick her up from the station. Kaylee asked when we were going to the FrontRunner station to pick her up. I told her that Grandma had called and was going to pick her up instead. She said to me, "Mom did you used to go to the FrontRunner station with your mom a lot when you were a kid?" I said, "the FrontRunner didn't exist when I was little." She acted completely shocked. So when we got in the car to head to Grandmas she said, "Mom, did you have cars when you were little?" I thought it was so funny! I'm not THAT old, but it made me think about the magnitude of development even since I was small. I could go on about everything, but it would take forever! The kids definitely keep me on my feet though. Even though it gets challenging being a mom, especially while Jon is sick, they still bring so much joy to my life!

Treatments

I need to do this post so I don't forget all the information, which has already happened, but I will try my best.

We met with Dr. McDonald yesterday for a follow-up visit and to discuss treatment. The labs show that nothing is really changing. The kidney function is slightly better, but not great. His potassium is still high, and there is still a lot of protein spewing into his body. So, he prescribed Jon 5 more medications, including a cough syrup because Jons cough is awful! He said plan on being a lot of pills for at least a year. Dr. McD said that we need to start his treatments. The treatment is cyclophosphamide which is the chemo he had in the hospital. He will have it every month for at least four months. The doc said they use cyclophosphamide on lupus nephritis because it has been shown to work in severe cases. Our goal is to get the lupus into remission. The bummer news is that the doc said it will probably be at least 2 to 3 months before Jon starts feeling good. He also wants to have us meet with another specialist-- a rheumatologist-- because they specialize in lupus. We have been seeing Dr. McDonald because of the lupus nephritis, which is a kidney issue. He said he wants to get a rheumatologist involved so we can cover everything and make sure nothing is being missed.

Jon went back to work on Monday. He has done okay, he comes home very tired. Last night he was very nauseated all night and not doing well, I told him he should stay home from work, but he said he needs to go to work because when he has the chemo it could take him down for a few days so he needs to work as much as possible, and plan for days off during treatment. I can't convince him to not worry about it. There is a pride issue with a husband and father providing for his family.

Yesterday my cousin came and took the kids for the day, and then got us pizza for dinner. I really appreciated it, I needed to get things done, I have been starting to feel very overwhelmed. My kids had SOOO much fun. They got home and Kaylee was talking to Jon and I for 20 minutes about what she did and how much fun she had. She told us that they have a fence by their house and on the other side of the fence is a black cow that was very evil. Jon said it almost sounded like The Sandlot. She went on and on about everything. This morning I had to run to the hardware store and it is next to Dominos Pizza where she had gotten the pizza last night. When we were pulling into the hardware store, the girls were so excited because that was where they got the pizza, they even told me exactly where Camille had parked. Also, as Kenzie is growing up she is becoming quite funny. She just walks around screaming. She doesn't cry, she just walks up to you and screams if she wants something. It cracks me up!

We're on the mend!

I didn't realize how many people were actually reading our blog until this weekend when several of you told me you were! Thank you for your kind words and thoughts this weekend.

First things first. Fayes fundraiser was a HUGE success! We made over $25000 for Nick and Stacey. They are so appreciative. It was such a fun event and the amount of people that came and showed their support was amazing!! It even made the news! You can see the story here: http://www.abc4.com/content/news/top_stories/story/Layton-fundraiser-draws-hundreds-to-help-a-child/amk-Ela32kWq4qMsAEWDKg.cspx

Jon wanted to come to the fundraiser to show his support. He just hung out in the Pepsi trailer for most of it, but towards the end, I looked over at him and he was super pale. So I gave him a bagel and made him go inside where he was out of the sun. Before the fundraiser, his swelling had started to go down, but then he was very swollen again afterwards. The swelling is still not down as much as it was before, but it also isn't as bad as it was on Saturday night.

Yesterday Jon decided he wanted to come to Sacrament meeting. He was getting ready and had problems, because of the swelling he had a very hard time getting his shoes on, he had to leave them completely untied, but he made it. It was hard for him to sit there, but this weekend was full of huge steps for him. He was up more than he has been for over a month. It did wear him down a little bit, but he did okay, so that's great news. This morning he went to work. I was very nervous for that. I had to drive him there at 5 am this morning. I just talked to him and he said he is doing okay. His bosses and co-workers are being very supportive and helpful to him. I talked to one of the bosses last week and he said, "I don't want you worrying about him coming back. We will make sure he is taken care of here. I know it's hard for you, but we wont allow him to over-do it." I really appreciate that. He is going to have labs run today, then we are going to meet with Dr. McDonald tomorrow to discuss long-term treatment. I will do another update when we find out what is going on.

The body shop just called. Last week they had called and said it was looking like the car would be totaled which was a big bummer because we just got it in April. They called back today and said we still had enough value in the vehicle that they were going to fix it. I don't know if its a good thing or a bad thing. We don't have to go through the car hunting process again, but we are going to have a ding on the title. We were planning on having the car for a long time anyway (that is why we bought a 2010), we got a really good deal on it.

It seems that we have got over the slump. Everything is improving and it's great! We still appreciate all of you! We thank you that supported Fayes fundraiser. We decided that was the best way people could do something for us, by supporting Faye! Jon was so concerned when he got sick that he would take away any focus from Faye. That was his biggest worry. We don't have the same needs as them, we have excellent insurance, Jon doesn't have to be in the hospital for six months, and the hospital isn't two hours away, but we thank all of you for the love and support.

Catch Up

There are a lot of pictures here! We turn our blog into a book each year to keep record of our life. I find it's the easiest way to keep a scrapbook and journal because I don't have very much time right now to do things. So, I am putting everything that has gone on in our life so we can remember it all and be thankful for our blessings each and every day! Please don't feel bad for us, it has become quite comical of everything we've been through! We are laughing about it all, I promise!!

 

Abbie just finished her first year of preschool. This is her with her teacher Mrs. Jensen at her end of year program. We loved Mrs. Jensen, she did an amazing job with her preschool!!



Kaylee played T-ball for the first time this year. She did a great job and had lots of fun. Her team was The Rockies.

The girls best friend moved away the day after Jon went into the hospital. It was hard, she was like a daughter to me and the girls loved her to death! They were an amazing family, and we will definitely miss them!

This photo is pretty self explanatory..... Jon in the hospital feeling awful!

This is the rash on his face which is a huge sign of lupus as well as hair falling out.

Jon's sister Heather really did a lot for us, she visited, brought food, and made sure things were taken care of. We really appreciate all she has done to help us through this all.

He didn't want me to take this picture, but I had to because he was very stylin'!!!

The girls came to see their daddy! It was a short visit because they didn't behave very well in the hospital. We were soooooo thankful to my mom for taking care of the girls for us through all of this!

This was one of Jons nurses, Ralla, she was with him a lot of the days he was in the hospital. She is from the Philippines, so we wanted a picture because that is where my brother is serving his mission and she was also great! In fact all of the staff at Ogden Regional were amazing!

Jon with Dr McDonald, he always wear these crazy ties, so I asked if I could take his picture, they totally staged it.

Jons twin, James and his wife, came and spent a day with Jon, he also gave blood to Jon. We were thankful for his help!

James, Liz, and Jon.

I stayed by his side, except for when his dad came and he stayed with him so I could spend time with the girls. It was difficult to watch him struggle each day, but I wouldn't be anywhere else.

His dad was there for three days, then headed back out for his mission. We are thankful to them for serving a mission.

Kenzie turned 1 this week! She is such an adorable blessing in our life! She was helping grandma do work.

They were rinsing spinach, she is always happy and a wild child, but such joy, as are our other girls!

She was so excited for her very own cake.

She was loving the frosting!

She definitely had her cake and ate it too!!



Jon has a lot of swelling in his legs and ankles...

and face.

This is Jons car that I was driving home on Thursday..... he decided to go back home on Thursday and after we got home we realized we forgot his medications at my moms. I left the girls home with him since I was only going to be gone 20 minutes. As I was turning into Uintah traffic was backed up so the cars in both lanes stopped to let me turn and a car went to go around them in the emergency lane and hit me. I am okay! Just sore. I am very blessed that I wasn't hurt badly and that the kids weren't with me.

Another angle.

On top of all this, our radiator needs replaced on our other vehicle and we had $900 fraud charged to our debit card. The money can be refunded, and then again, it's just money. We have learned the importance of relationships and living life to its fullest no matter what challenges come our way! Like I said in the beginning, it is quite comical. But in all honesty, with everything we have been through, I have never seen more blessings flow our way. A lot of our blessings have come in the forms of each of you. The calls, the notes, the cards, the visits, the blessings, the meals, the help with our kids and flooding and mice problems and yard and clean-up, and the prayers! It would be difficult to get through this without all of you and our Father in Heaven and Savior standing by our side and protecting us. It is miraculous that even though we have been through a lot, we have been sent protection and comfort. On June 1st I celebrated my 27th birthday. Little did I know the challenges the month would bring.... and yet we are still alive and getting through, what more could a person ask for?