Saturday, July 21, 2012

The past 11 months

I didn't realize a picture of brownies has been on the main page since September. Sheesh! I think it's time for an update! (note--this post was first written May 27th, but I'm finally posting it)

To say it literally, I've barely survived the past eleven months due to these things:

1-D went to Warsaw, Poland to study composition with Pawel Lukaszewski at the Chopin Academy on a Fulbright grant. There weren't enough funds for our whole family to live there, so I stayed in Utah with my in-laws and our three children. D left Sept. 11, 2011, and came home once for Christmas. He arrived back home for good on my birthday, April 6, 2012. (The perfect present!)

2-On January 3, 2012, two days after D left once again for Poland, I went to urgent care (at the request of D) for a few blood tests. I'd been bruising for months and, although I thought it was normal (I've always bruised easily), the dr. called and informed me that I needed to be admitted to the Huntsman Cancer Hospital. Something was seriously wrong.

-They explained that the blood tests had shown my platelet count at 3,000. Normal counts range from 150-300,000 per unit of blood. After bringing my kids to my aunt's house and packing up for them to stay at my parent's for the weekend, my mom drove me to Huntsman in Salt Lake.

-I was told that I had either ITP (Idiopathic thrombocytopenic purpura) or TTP. TTP is much more serious, but as they weren't sure which type was causing my low platelets (ofttimes it's caused from a bad virus such as strep but I'd had nothing of that sort), they'd need to do a bone marrow biopsy to confirm the type, as well as to rule out possible leukemia.

-There I was, at one of the best cancer hospitals in the area. My husband had just left for another 4 months, and I'd just been told the words: "You may have cancer." Surprisingly, I felt peace. Still, I gripped my mother's hand as tight as I could while trying to relax through the pain of the biopsy. It was torturous. They began giving me platelet transfusions for the next two days in the hospital.

-I was diagnosed with ITP, an auto-immune disease, which was much better than cancer or TTP!

ITP is a bleeding disorder in which the immune system destroys platelets, which are necessary for normal blood clotting. Persons with the disease have too few platelets in the blood. Platelets help your blood clot by clumping together to plug small holes in damaged blood vessels.
The antibodies attach to the platelets. The spleen destroys the platelets that carry the antibodies.
In children, the disease sometimes follows a viral infection. In adults, it is more often a chronic (long-term) disease and can occur after a viral infection, with use of certain drugs, during pregnancy, or as part of an immune disorder. Sudden and severe loss of blood from the digestive tract may occur. Bleeding into the brain may also occur. 
-They began treating me with Prednisone, a corticosteroid, and sent me home once my platelet count went up. I felt weak and overwhelmed, but felt the prayers of many on my behalf. I knew all would be okay.
3-Thus began the next few months of being a single, sick mother of sorts on steroids. :) Every time I tried to wean off of them, my platelet count would drop. I was deemed "failure to thrive" and was advised to get my spleen removed. Although they don't know why, if the spleen is removed there's an 80% chance ITP will go away completely and forever.

4-In one last attempt, I received 4 weekly infusion treatments of Rituximab (a biotherapy, much lower dose but similar to chemotherapy treatments). If they didn't work, I would get a splenectomy. I sat by other patients at Huntsman Cancer Hospital--most chemotherapy patients--and felt inadequate being there. Here I was, thinking my life was so hard, when others around me were there with cancer, yet acting like chemo was "normal". I felt so grateful that this was not a long-term illness.

5. Unfortunately, the treatments didn't work. Prednisone didn't either. Nothing worked. So here I am, two days after surgery. They performed a laparoscopic splenectomy and fixed my umbilical hernia (caused by genetics as well as having 3 children!) at the same time. I have 4 incisions across my abdomen and 1 below my belly button.

And let me tell you, surgery SUCKS.

I admire the nurses who helped me move around. I appreciate the ease with which I used to go up stairs and sit up and down and lift my 20 month old. I have learned that I can't do it alone, and don't have to. I appreciate my husband more than ever, who has become full-time mom and nurse to me. So  many have helped me, and continue to do so. I tear up every time I think of that (as well as every time I move...).

6. Now, 7 weeks later, I feel more like myself then ever before. I still have sudden pangs of pain where my 4 incisions were made, but it's less often now. I see the world with a more clear perspective. As of two weeks ago, I am off of Prednisone and am cured of ITP. Although no one know exactly why, removing the spleen for ITP patients usually works when other treatments fail. 

Words cannot describe how blessed I feel. I have been given a new life. My husband home, my health normal again, and no chance of ITP ever occurring again. Although I NEVER would have asked for such trials, I see now what I've learned:

I have such appreciation for single mothers, for doctors who know how to treat for specific illnesses, for our bodies which can be mutilated and torn apart, yet can heal again. ESPECIALLY for my husband and family, who helped me and my family when I could not.  

How fragile life is. What's truly important is so simple when you have a clear mindset. I have learned that through these trials. Life is about family, about love, about enduring, and about coming closer to God.

Monday, September 26, 2011

Fun Food

Z learned about fall during preschool today. He got to make an acorn out of a Hershey kiss, mini nilla wafer, and pretzel. Such a yummy, cute idea! Also, I made mint brownies with the BYU bakery recipe. Ohhhh my. A bit of heaven on earth.

Sunday, September 25, 2011

Primary program

The kids had their primary program today. I'm still not used to such a large ward- there were so many kids that I could hardly see Z! The songs were beautiful and the kids sang so well! A received her first CTR (choose the right) ring from her primary teacher afterward. She was so excited. Aunt Mary says CTR stands for "clean your room". :)

Halloween Snowman

Grandma Pew has been decorating for the holidays indoors, so the kids decided they wanted to decorate outside. Here's our Halloween snowman/bat.

The weekend

My mom and I performed on Saturday in the orchestra with the University of Utah youth piano concerto competition winners. It was so fun to be stand partners with my mom and to play challenging, delightful music. The winners ages were from 7 to 17, and incredible players! It was nice getting paid well, and having free babysitting thanks to my family. I'm absolutely loving being with family-but it feels like a blessing and a curse at the same time, with Doug gone. Here's to one more day closer to seeing him!

Thursday, September 22, 2011

A photo a day

For D (mostly) and your enjoyment..let the photo a day series begin! Today we put C in a forward facing carseat. She loved it! Especially watching her siblings' expressions.

Wednesday, September 21, 2011

We are in Utah

So, it's time I keep this blog updated. D received a Fulbright grant to study in Poland and finish his doctoral dissertation. There weren't enough funds for our family of 5 to go without getting into more debt-not to mention D wouldn't be able to get a job there due to strict Fulbright rules. After a lot of prayers, we decided it'd be best for the kids and I to stay with family in Utah while D is in Poland for 7 months. D has only been gone 11 days and so far we're surviving. Everyone is so helpful! I will be updating with photos of the family often. Check out D's blog at