Saturday, March 31, 2012

Bone Marrow Biopsy

We went in today for Jose's second bone marrow biospy. If he is in remission they will go ahead and start the next round of chemo. We should hear on Wednesday.

Tuesday, March 27, 2012


   Jose's neutrophils were at 800 today. Plateletes were at 250,000. So excited that he is getting to come home. I learned how to change the bandage and flush his line. That was neat. He is being sent home with 7 medications. Vitamin D, a special multivitamin that has no iron, Atra (oral chemo medication), Acyclovair (aniviral so he doesn't get virus's), Omeprazole (for upset stomach and heartburn). These are what he'll take daily. The other two are just as needed for pain and nausea. Much better than the 5 pages he had prior to this. We still have a long road ahead but at least we can do it from home. For now at least.
   The plan of attack is he'll go in Friday for a bone marrow biopsy and if that comes back that he's in remission he'll stop taking the Atra. They will wait a couple days and he'll start the next round of chemo. He'll take the Atra for 15 days followed by 4 days of chemo. Then have 3 weeks of rest. Then he'll do a 3 day round of chemo and 15 days Atra. Then the last round of 2 days chemo and 15 days Atra. If he is still in remission at this point. He'll go onto the oral chemotheraphy for a year.
    I'm so excited to get my kids back on a schedule and not be up at the hospital so much. Briella has been terrible with sleeping the last little while. Because, i've been gone so much. I'm excited to get her back on track and spend some time with the kids. They have been neglected through all this. We have been blessed around every corner.

Today is the day!
Enjoying his red chair and home!

Monday, March 26, 2012

My handsome bald man.

Good news! Jose's neutrophils were up again today. They were at 400 and his platelets have moved to 191,000. From a 100,000. His body is finally working! I'm so excited. Looks like tomorrow is the day he'll get to go home. It's scary.
On a side note. His hair finally started to fall out. He took a shower yesterday and lost the whole crown of his head. So today I made him shave it off so I didnt' have to deal with it at home. Now I have a handsome bald guy! Love him.

Here is the hair he lost that day, before his hair cut, during his hair cut and after!!

We have neutrophils!!

Finally finally finally! We finally today saw Jose's neutrophils come up to 100 today. They have been 0'd out for weeks. He needs a 500 to go home. So we are hoping to see a jump tomorrow. The Dr's are pretty sure he'll be going home this week as long as the numbers keep going up.

Friday, March 23, 2012

Good signs...... more waiting

The Lord must really want to teach us patience. We are having some good signs though. Yesterday, Jose's platelets were at 81,000. Today with out a transfusion we saw them move up to a 100,000. His hematocrit is holding at 25.9. He still has no neutrophils (immune system). He does how ever have monocytes and those are what turn into neutrophils. So, hopefully we will see those go up soon. Being here has not been good on his mental health. He's just been super down and depressed. Which is completely understandable but it's hard to see. I hope we can get home soo

Children's museum

Valerie came into town for a week and stayed an extra to help with the kids. It was so good to get to spend time with her and for Dominic to see the boys. Leah is a doll. I miss the all so much. Last day they were here we went to the children's museum. It was a lot of fun. Briella loved grocery shopping. Dominic loved building in the construction zone and the climbing wall.  Alyssa LOVED being on TV. I may have a future weather girl on my hands.  It was such a fun day. 

Monday, March 19, 2012

Are We Ready Yet?!

Ugh... everyday the doctors come in and say, "When your levels come up we can work towards going home." So frustrating that everyday they are the same or lower. They have him on 7 different antibiotics acting as his immune system. So, we just wait.....
They are hoping he will be home before Easter.

On a good note! At least he has a little appetite back!

Saturday, March 17, 2012

St. Patrick's Day

        To day has definatley been a lucky day. We had a little leprechaun who reaked havoc on the house all day. He died the cupcakes green and even peed in the toilet. Alyssa had a blast playing leprechaun and creating and doing a treasure hunt with all the kids. By all I mean Nolan, Xander, Koya, Kycee, Briella and Dominic. They hunted and followed clues all around the house until the found the rainbow and some treats and coloring books. She's going to be an awesome teacher one day.
           Jose was feeling pretty good today. So I brought the kids up to visit since the last time they were up he was not feeling well at all. The kids have more fun drawing on the board to decorate the room.
           We are a little worried that his levels are not going up at all. By levels I mean his immune system. His neutraphil count is holding at 200. We need it to be around 5000. They are staying stable. Just not showing improvement. I sure hope it happens soon. I really want him to start feeling better. The steriod is definatley doing it's job and keeping the Atra sydrome away. Now we just need his body to kick in and create some blood cells.
           I was having a bad day. I don't know why. Just feeling slightly sorry for myself I guess. I just miss my life. I know that is selfish but, it is what it is. I'm trying so hard to juggle everything I guess I feel overwhelmed. I'm so greatful for everyone's help. I don't know what I would do without all the help. Thank you again. Please keep us in your thoughts and prayers. They are still very much needed!

Thursday, March 15, 2012

Update on Atra Syndrome

So early this morning Jose had another fever. They took him down for a chest x-ray and that came back clean. They started him on the steriod and he is already feeling a little better. The headache has subsided and even though he's still super tired at least he can rest and not be in pain. Only problem is the steroid messes with his blood sugar. His blood sugar was 195 tonight. So he was given a little insulin. Poor guy's med list just keeps getting bigger and bigger!

Wednesday, March 14, 2012

Atra Syndrome

Dr. Asch came into day to talk to us. Jose has been having symptoms of Atra syndrome. He had an unexplained fever early this morning. Running about 101.6. The doctor said if he has another one they will be taking him down for a chest x-ray and doing blood cultures to see what is going on. If those come back inconclusive. They will then start him on a steriod dexamethasone to treat it. They are pretty sure that this is what is going on. He has been having a super red face, headaches, and now the fever.
It is basically caused by pathophysiologic consequences result from the release of inflammatory cytokines from malignant promyelocytes. In other words the baby blood cells that are cancerous with graunuals are tricked into becoming mature blood cells. When this happens those granules are released into the blood stream and build up. Causing unexplained fevers, red face, headaches, and can cause fluid to build up in the lungs. Luckily we have not seen any breathing problems. Jose's levels are still staying the same. We have seen no improvement in him producing his own blood cells.

Saturday, March 10, 2012


We had a fun day today at McDonalds with all the grandkids. 
Grandma and my babies! 
Grandma and all her grandkids. 

Ky and Dominic stuffing their faces. 


Customer Service

Jose was a admitted to the hospital on February 21st. We were supposed to leave on a 5 day cruise to the Bahamas on Friday, February 24th. Well as you can see we were not able to go. So, I drove out to the airport and United Airlines was fantastic. I asked if we could recieve a voucher for our tickets to use in the future. They told me no and then gave us a full refund. They now have new customers for life! I can't say nicer things about the manager at United Airlines.
Carnival on the other hand... Informed me that I had to request a voucher in writing. They refunded my tax and gratuity. So, I wrote them a letter just asking for a voucher. Knowing that I would probably not get a refund. This was my letter to carnival and their response.

Friday, March 9, 2012

Happy Birthday Jose!

Jose celebrated his 35th birthday in LDS hospital. I brought the kids up to see him and Kristi made him an awesome Xbox cake. He was not feeling good at all. He'd just got his nose to stop bleeding and his head was killing him. He has been suffering from headaches, and just not feeling well at all. Doctor Peterson said it was ok to bring the kids. Since he can't shave for at least a year with a normal razor. Due to potential bleeding problems. I decided to get him a nice razor for his birthday. I really hope he can come home soon. Happy Birthday Jose. We love you. Here is to hoping the next 35 years will be hospital free!

Thursday, March 8, 2012

Jose Update

Jose is doing well as to be expected. He's on the road to remission. He has been in the hospital for three weeks now. He probably has a month longer to go. The group up at LDS hospital is amazing. They have been so wonderful. All the doctors and nurses are patient with me and all my questions. They are taking such good care of Jose. He has to be monitored very closely since his blood levels are not normal. He is constantly getting red blood cells when his hematocrit drops below 24 and his platelets drop below 75,000. Since Jose is O+ he can have platelets from different donors. He is on a six different antibiotics so he doesn't get infections since he has no immune system. His poor lips have been so blistered and sore. His tongue is sore since the chemo kills all the cells that regenerate quickly. Such as hair, nails, skin, and mucous cells in the mouth. He isn't making new bone marrow and cells yet. We are hoping by the end of the week.

Platelets, blistered lips, and red blood cells.