I created this blog when my sweet little girl, Kristen, was diagnosed with cancer, for the third time. After fighting for almost 3 years Kristen was called home to that same God who gave her life. I've contemplated on many occasions rather I should quit this blog or not. Each time I am inspired that I should not. One of my favorite quotes comes from Neal A. Maxwell- "Those who "plow in hope" not only understand the law of the harvest but they also understand what growing seasons are all about. True, those with genuine hope may see their proximate circumstances shaken like a kaleidoscope at times, yet with the "Eye of faith" they still see divine design." Kristen blessed lives and continues to do so. Her light continues to shine. As for me, I continue to "plow in hope" knowing well that Kristen is mine for eternity. Families can be together forever! This I know. Our family continues to live and to love and this is our story...

Tuesday, December 30, 2008

Christmas


It was rather unsuspected, but we were actually home for Christmas! This past round of Chemotherapy was tough. Kristen had 12 times the amount of chemo she has in round 1 or 2. Things begin to intensify in round 3 then I heard 4 and 5 would be worse. Shortly after her counts hit 0, Kristen developed a fever, a high fever! It was not good for Kristen. The nurse took the blood cultures and then the doctors came in to figure out what anti-biotics she wasn't allergic to. So within a half hour Kristen was being treated with high doses of anit-biotics. Her nose started turning red the night before and no seemed to care. But the next morning when Dr. Afifi came in she was concerned. She took me out in the hall and said we had to act fast. She was concerned that the red nose was due to a fungal infection that spreads fast and could cause major tissue damage. The blood cultures also came back positive, which meant that Kristen had a bacterial infection in her blood stream. None of this was good news as her counts were still 0. The main concern when her blood counts are low is just this, a bacterial infection which is called sepsis, and now we were facing what the doctors fear. Kids with low counts and sepsis can go into sepsis shock and this can be fatal in a short time. This is why we stay in the hospital waiting for her counts to come up. If we were home, we might not make it to the hospital in time and usually when the kids come in with sepsis they are in such poor shape that they go straight to ICU. ( By the way, I hate that place!) A bacterial infection can take the kids in a matter of hours. The doctors wanted a biopsy of her nose. They said it would be a short procedure and possibly done without sedation. I said there was no way Kristen would hold still, so they decided to do a bed side sedation. They said I could even stay in her room with her. They began the procedure and as soon as she seemed to be out, I stepped out as it was difficult for me to watch. This was susposed to be a 15 minute procedure. I was in the hall watching the monitor and 15 minutes turned into 30 then 40. I noticed the alarm on the monitor kept going off saying that her saturations were falling. Normally she is at 100 or 98 % which means she is breathing fine and does not need oxygen. I noticed it kept falling to 80 the 70 and soon 66. I was nervous and peeked in her window. I think I almost threw up. Kristen was coughing and they were suctioning blood out of her throat. I could not beleive that this simple procedure was now something so major. I knew that any minute the doors would fly open and we would be heading to ICU. I pulled myself together and went into the corner of the room. She was still half asleep but was oviouosly in pain. ( Kristen is upstairs receiving iv antibiotics and I have to go change them so I will finish this later.)

Thursday, December 11, 2008

Back to the Hospital!

Some thanksgiving fun...

I forgot to take pictures of Thanksgiving dinner, so later that night I had my 4 children that still live at home pose for a picture. They all thought they would have some fun with it.




Back to the hospital...
So we went home for 2 weeks! We were able to spend Thanksgiving at home. We have been back in the hospital for 9 days. We finished round 3 of intense chemo and now we are waiting for counts to drop and then to come back up. We could be here for at least another couple of weeks, so yes, that means that we might be spending Christmas here in the good ol hospital :( We are hoping that we can go home, but we never know. Kristen received 12 times the chemo that she received in the past 2 rounds, so I am not sure how her body is going to re-act to it. I was able to leave for a couple of hours today while Kamie and Kim sat with Kristen. When I walked in the room after being gone for about 3 hours, the music was blasting and Kamie, Kim and Kristen were dancing to YMCA! It was hilarious! Kristen was doing the dance in her bed and it was the cutest thing I've seen for a while. Then the next song came on and they all started dancing to the macarana. We were all laughing and it was probably really good medicine for Kristen. Kristen has a darling pink Christmas tree that her cousins Kylie, Haylie and Jaylie brought to her. It is the talk of our pod, as all the nurses bring everyone in to see it. They also brought her a bag of about 20 presents so she could open a present each day! Thank You! It helps both Kristen and I to know people care about her. I've got the worst story to tell! The other night the boy right across the hall flat lined and there was a CODE BLUE to his room. I seriously feel like I could throw up thinking about it. I have to run to the parent laundry room and get Kristen's pajamas out of the dryer, so I'll get to the code blue story soon!

Friday, November 21, 2008

Yeah! Kristen is home from the hospital!!!

That means Thanksgiving with family!
Even amidst the storm of the past few months
We have much to be thankful for.

Sunday, November 16, 2008

Wow! Time flies when your having fun...NOT

 We were able to spend 10 days at home then we came back to the hospital. Kristen finished round 2 of Chemotherapy with what seemed to be "flying colors!" She had 8 days of intense chemotherapy. Now we are in the waiting process. Her blood counts all have to bottom out and when I say that I mean hit 0. Her nutrifil count hit 0 on Monday the 10th. She has had a couple of blood and platelet transfusions over the past 3 weeks. She hit a fever last Tuesday, which meant that she was started on high doses of anti-biotics. That is pretty much why we stay in the hospital after the treatments are done. Her blood counts fall to nothing and they tell me that a bacterial infection could take her in just a few hours. So she is here to be protected #1 from germs and #2 so if she gets a fever they can act fast. So we wait and wait and then we wait some more. There isn't a day that Kristen doesn't say at least 50 times, "I wanna go home...NOW!" The other night she started to cry, and she said that she missed Ryan and Ricky. You see Kristen hasn't had many visitors because her counts are so low that if you even think you might be sick or getting sick, then you can't come in. So I pretty much tell everyone not to come. So she starts to miss everyone. I think I will tell her brothers to at least come and wash their hands and put on a mask, then they can at least see her. She spent Halloween in the hospital. Kamie brought her a Hannah Montana wig to wear. She had to go in for a spinal tap, so we took her down stairs to the little surgery room wearing her wig. The doctors got a kick out it! They had trick-or-treating here in our unit, but her counts were too low so she couldn't leave her room, but she still got bags of candy. She is asking for a coke, so I gotta run...Say a little prayer for her.



Sunday, October 26, 2008

9 days flying

 October 17th we finally left the hospital. It was 2 days short of being there for 6 weeks. I knew I only had 7 to 10 days before Kristen and i would have to return to the hospital to start round 2 of chemotherapy. We had a quick family picture taken, also a new niece, Sara, was born on October 21st. Kristen was exited to hold her.

Saturday, October 11, 2008

Still in the hospital!!!

5 weeks this monday! We are still here in the hospital. I get stir crazy at times, but I have been working on taxes, as I filed an extension and it is due this upcoming week. At least I can go for a walk or leave for a couple of hours, But Kristen has been in that bed for 5 weeks! She looks out the window occasionally and there is the walk from the bed to the bathroom about every 4 hours. I can no longer whine that I am still here! Kristen has been pretty good. We are waiting for her white count to come up then we can go home for a few days before starting round #2.

Sunday, September 28, 2008

Life is going on without me!!!


So all the things that i thought mattered so much, like a clean house, laundry finished, errands ran, lawn mowed, dinner at 5:00, the flower beds weeded and watered... well guess what? The things that seemed to consume my every waking moment didn't really matter at all. Tomorrow will be 3 weeks since my fears were confirmed. The leukemia had returned, and Kristen's pale skin, unexplained bruises, loss of appetite and loss of energy were all the symptoms I tried to ignore. September 8th we got the news that the blood tests concluded that she did indeed have leukemia. Up until 3 weeks ago my life was consumed with being the perfect wife and mom and grandma. It has been three weeks since I have watered the flowers that I love so much that surround my yard. 3 weeks since I made dinner for my family. 3 weeks since I dusted the piano, vacuumed the living room, or mowed the lawn. I left the hospital for a hour or two yesterday and just so you know...my family isn't starving, the lawn is mowed and the flowers are the prettiest they have been all summer! Yeah, I have the most amazing husband and children! And yes, i have taught them to cook, clean, do laundry and work in the yard. One of those moments in life that pays off for a mom...I walk into the house after being gone on and off for three weeks and the dishes are done, the living room dusted and even the toilets are clean! Up until three weeks ago I thought I was the only one that could keep my flowers alive! But I was wrong! Somewhere we have to let others step up to the plate and swing the bat for us. It might be a very hard thing to, but they need the opportunity to hit the ball and run the bases and feel the prize of accomplishment! Richard, Katy, Rick, Kamie, Kim & Ryan.....You make a great team! Love your most adoring cheerleader, mom

Friday, September 26, 2008

longest elevator ride of my life!!!!!

Kristen is on the 4th floor of the childrens hospital in Salt Lake City. After being here with her for many days, I got the chance to leave for a few hours today. My daughter, Kamie, came to sit with Kristen while I ran home to pack my suit case with clean clothes. I got on the elevator and 3 people followed me, an older woman (who am I kidding? she was probably my age!) and girl and a boy in their early 20's. The boy reminded me of my nephew Ty, only he was shorter and a little more stout. He was a nice looking boy, maybe an earring, somewhat spiked hair, so maybe a little rough. The guy said to the lady that was probably his mom, "I've never felt like this in my whole life!" Then the tears came. His mom replied, "I know, but that is why your family is kicking in." The guy continued to sob. Then off course me, thinking of my own plight, with my suit case full of dirty clothes, my daughter deathly ill down the hall, I began to cry. Yeah I really did, right there on the elevator, tears were rolling down my face. I was crying for myself, but also for the guy in the elevator. It was obvious that he too had a child that was here in the hospital that was suffering, i felt for a moment that we had a connection. A connection that I wish neither of us had. We each had a child laying in pain. And there was nothing we could do about it! NOTHING!!!!! It is the worst feeling in the world! He said it right when he said, "I've never felt like this in my life!! and i hope I never feel like this again! And i wish no parent ever has to feel the pain me and the stranger in the elevator feel today.

Thursday, September 25, 2008

Finally out of ICU

Kristen has had a hard few weeks. She was admitted to the hospital on Monday, September 8th, Her central line was put in on Tuesday and on Wednesday chemo began. By Thursday night she was in ICU, Because they gave her so much fluid to help with the chemo, she started to retain it. Her lungs were filling up with fluid fast. She was sent to ICU to have chest tubes put in. She seemed uncomfortable at times but she was also on a lot of drugs for nausea and I think she was almost in a sedated state for about 4 days. After 5 days in PICU we went back to the ICS unit. The tubes stayed in for about 10 days. It was such a relief to get those tubes out. She seems to be doing a little better each day.
Reality finally hit as I leaned over to hug Kristen. She had been crying because she wanted to go home. I put the side rails on the bed down to hug her and as I pulled away my black jacket was covered with Kristen's hair. She sits in bed and tried to eat a cup of orange jello and she is soon pulling a piece of hair out of her mouth. The hair is down her back and down her chest. I keep trying to brush it away cause I think of the discomfort when I get one piece of hair down my shirt, I have to pull over when I am driving to get it out. Now she has a bald spot on the back of her head. The reality...Cancer...and now it is staring at me every day. Where once was darling brown hair with brightly colored bows, now it is strands of hair with baldness underneath. I think I will go shopping for some hats...lots of them! In every color!

Sunday, September 21, 2008

She is Our Angel

Kristen is our angel! She is our princess!! Most days I forget that she even has Down syndrome.  She is the light in the darkness. Kristen is a happy girl. She had had some medical problems in the past but I will get to those later. What brings me to create a blog....cancer, leukemia to be exact. This is not the first time or even the second, but the THIRD. Yes the third time Kristen has leukemia.