Sunday, February 26, 2012

Jose has Leukemia

 Tuesday, February 21st-Wednesday, February 22nd-
Jose had been suffering from bloody noses and bruising easily for a about a week. I finally told him he needed to go in and see a doctor. He went into the UVU clinic because we currently don't have insurance. The doctor looked at him and then decided to do a CBC or blood test. They sent him on his way and told him they would get the results to him the next day.
At 10:00 that night, he got a phone call from the nurse practitioner at UVU saying that we needed to get to the ER immediately. Jose's platelet levels were at 8,000. Which means his blood wasn't clotting. Which was causing the nose bleeds. She was thinking maybe he was having a problem with his spleen. Jose didn't want to go he wanted to wait until morning and go to an instacare. I called Alaina who called the ER doctor she works with and then before she had a chance to get back to me she had to head on a call for work. After thinking about it for a minute I thought to myself the nurse practioner wouldn't haven't called from her house at 10 pm if it wasn't an emergency. So I called my brother told him to come sit at the house and off to Utah Valley Emergency Room we went. When we arrived and were admitted they came in and retook labs. They came and told us they were not sure what was going on but they were going to start platelets and do a CT scan. They did the CT and it showed he had a small brain bleed in his head, yet they rest of his organs where fine. They suspected Leukemia.

They called an ambulance and told us they were transferring us to LDS hospital's leukemia wing. At this point it was 4 in the morning. They wouldn't let me ride in the ambulance. So, I drove up following the ambulance.
We were admitted to room E840.We got to LDS hospital and Jose was swarmed. Taking blood hooking up this and that and test and cat scans and all kinds of tests where going on. All the doctors and nurses and staff were fantastic. The pathologist came and told us he couldn't tell what was going on by blood only. He was sure it was a type of leukemia but they didn't know which one. They needed to do a bone marrow test. At this point it was 5 in the morning. While waiting I text my bishop and another good friend asked them to come up and give Jose a preisthood blessing. They arrived by 6:30 am. Around 9:00a.m they sent the nurse into do a bone marrow test. Jose slept through the whole thing. The bone marrow test came back and told us, yes he had Acute Promeylocytic Leukemia. Dr. Asche came in and spoke with us and even drew graphics on the door explaining what was going on. The aides held my hand and hugged me why I cried. Then they put a plan into action. He'd start his chemo right away and we were looking at a 30-60 day stay in the hospital.
T-normal and Jose's bone marrow. B-FISH test
I started researching this type of leukemia. Acute Promeylocytic  Leukemia. This type of leukemia has a chromosome abnormality called t(15-17 translocation). This chromosome abnormality makes this type of leukemia extremely susceptible to certain medications, one of which is called retinoic acid (ATRA). Studies have shown that when ATRA is given with standard leukemia chemotherapy, there is a much greater chance of resulting in a cure than any of the known leukemia's.
The treatment will be done in 3 phases. The first is induction. He'll have 4 chemotherapy treatments and take the ATRA 2x a day for 30 days. He'll have 2 bone marrow tests to see if the the leukemia is in complete remission.
The next step will be consolidation. We are not sure what consolidation consists of. Because it'll depend on the bone marrow tests. Most likely it will consist of two more rounds of chemo treatments. Where he has chemo for 3 days and then 3 weeks of rest. Plus the ATRA for that same week. After this he'll be on maintenance therapy where he will have oral chemotherapy for a year. It's going to be a long process. But, all in all things look good!

Around 11:00 shortly after the discussion with the doctor they came and took him for a few different things. The first thing to happen was Jose was taken down to cat scan to see if the brain bleed was bigger or smaller after starting platelets, the next thing to happen was they put in a central line. So they can draw blood directly from his heart and not have to poke him so many times.
Then the waiting began. Before they could start treatment we had to wait for a specific test called FISH. This test specifically identified the chromosomal problem. While waiting for this test result and since I hadn't slept in 24 hours I decided I would go home and see the kids and let them know what was going on. I left around 8 or 9 on Wednesday night. Jose's sister Rina stayed with him. So I could go see my kids.
That was the hardest thing I had to do. Tell my kids their dad was sick. They took it fairly well and the social worker had told me that they need to see the progression and be informed. So I made sure to try and tell them on their level what was going on. Alyssa was very worried. I was so exhausted I probably didn't handle it the best but, I didn't want to lie. I couldn't sleep. I was freaking out and my mom finally came over and gave me a sleeping pill. I don't remember anything else.

Thursday, February 23rd
Alyssa's countdown and artwork for Dad.
I slept for 14 hours and had a whole new perspective the next day. I knew everything would be alright. I got the kids dressed and ready. I took them up to see there dad. They seemed to be a lot less worried afterwards and Dominic was very excited his Dad could walk. I took them back home with my mom who had been watching them this whole time. She has been amazing I don't know what we would do with out her. After the visit with the kids I ran them home and came back to the hospital to wait for the FISH test results. As we suspected it came back positive.
Once the Fish test was back the chemo was ordered and for some reason they had forgotten to do a heart echo. So then we had to wait for a cardiologist to read that. Here it is Thursday night and finally all was done and they told us we would start the chemotheraphy first thing on Friday morning. Jose has a terrible night. Moaning, whining, his head hurt.

Friday, February 24th 
Jose's port,first chemo treatment with Sam

Friday morning we had to do another CT scan to make sure his bleed wasn't larger. Because of the night before.They took him down for that and we waited all day for the Neurologist to come in and let us know. Around 4 o'clock she came in and all was well the bleed had actually gotten smaller. They came in and gave him some Zofran for nausea and administered his first Idorubicin treatment at 6:00 on Friday night.
Idorubicin is the type of chemotherephy Jose is recieving. He'll have four treatments this first round every other day. It is injected directly to the central line. It looks like Mountain Dew code red. It takes 15 minutes to administer. After it is administered he can have symptoms for up to 2-3 hours after the treatment. The biggest side effects of this type of chemo is hair loss and nausea. Each treatment will be different as his immune system drops. The nurse that administered it Sam has been our favorite so far. She comes in to just hide in our room.
After his treatment. I ran home to shower and get some clothes so I could stay for a while. Checked on things and came back. We both had an uneventful night and slept.

Saturday, February 25th
Jose's platelet level was holding and the neurologist came in to let us know that not only had the brain bleed not gotten bigger it had actually gotten smaller. It was also in the sub-arachnoid space of the brain in what is called the blood brain barrier and not actually effecting the brain. That it should resolve itself as long as his platelets stay up.
Dominic's get well card, his awesome fire bug!
Jose's boss Mark also stopped by to let us know that everything would be fine at Jose's office. They would take care of things until he was back on his feet.
Jose was in a negative pressure room that is for patients who are in isolation. It was all they had open when we arrived. Because of him being on the chemotheraphy they moved us rooms to a positive pressure room. We are now in Room E808. My mom brought up the kids and Alaina had spent the day helping out at my house. She printed a bunch of pictures to put around his room.  Jose had a really good day. It was an exhausting night though with nursing staff bugging him every 3-4 hours for blood or other things. It is like having a newborn.

Sunday, February 26
Today has been exhausting. Jose had a good visit with his Aunt Elizabeth this morning. He has been having chills and a little big of an upset stomach. From the Atra i'm thinking. He's also starting to get grumpy just from not feeling good which is understandable. He had his second chemotherephy treatment at 6:00. He will have two more and 3 weeks of rest. If things look good afterward he'll get to go home as an out patient for the next phase of treatment. Consolidation. I sure hope things look good soon. I'm ready to take him at home. Although i'm sure i'll miss the help at the hospital when we are gone.
We had a great nurse today named Nan. She was so great about printing me a list of his medication and what is prescribed and what is just PRN or as needed. It's so nice to know a little bit of what they are giving him. It's crazy a person can go from taking just a multi-vitamin to taking. Two pages of medication.

1 comment:

Unknown said...

We are keeping you all in our prayers. Just know that you are not alone! Let us know if we can help in any way.