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...
Monday, March 30, 2009
Wednesday, March 25, 2009
I decided long ago that being impatient and maybe a little stubborn are two traits that are intertwined to chromosome 21. And being that Kristen has an extra #21 chromosome she got an extra dose of impatience and stubbornness. Once Kristen has made up her mind about something, it usually doesn't change. I think "immovable" is a good word. I'm not sayin that she isn't the sweetest little pumpkin out there, I'm just saying that she knows what she does or doesn't want and getting her to come over to your side hasn't always been easy. When Kristen had leukemia when she was 3 years old, if she didn't want to cooperate with procedures or vitals it wasn't to hard to sit her on my lap and hold her down. Well now that she is 22 and weighs about 85 pounds holding her down isn't really an option. You see Kristen has a life, she has a routine, oh does she have a routine! Getting her out of her routine doesn't sit well with her. So 7 months ago when she was diagnosed with leukemia, I knew it was going to be hard... Hard to get her to the doctor, hard to get her to pack her suitcase and leave home for the hospital for a months stay at a time, Hard to leave the comforts of her home and her "Stuff" and Oh does she have stuff! I thought many times...only if she could be a little more manageable, a little more understanding, a little less stubborn and a lot more patient. Tomorrow morning starts day 24 in the hospital of this round. Kristen has once again touched my heart. She is manageable, she is understanding, she is less stubborn and she has learned patience in a huge way! And she has taught me the meaning of the word patient. I found that is best to tell her exactly what is going on and what is supposed to happen next. When the nurse comes in for yet another set of vitals and she hides under her covers, I say, "Kristen, we just want you to get better because we love you," she pops her head out from under the covers and she says, "Oh!" and then she proceeds to lift her arm up for the cuff. When she sits in that bed day after day and yells, "I want to go home!" I just have to tell her that we still need a little more medicine and it will be a few more days, she again replies with, "Oh!" I've kept a chart of the last 7 months. The green is home and the pink is hospital. I have also put her blood counts on each day and other important information. I taped it together so it is on one page and it is hanging on Kristen's bulletin board. Every day I color in the day. Kristen asked me what that was for and I explained it to her. It wasn't long and I noticed her jump out of bed, marker in hand, and she went to the chart and colored in the next day pink. The next day she did the same thing only she colored the day green and she said HOME! I took a picture of the chart, you really can't see the info, but the days are clear. We have been in the hospital more than we have been home. I'm not really sure when her counts are going to start coming up so we can break out of this place. Nothing is happening yet, so it could be a while. For now she waits patiently and she continues to fight this in true Kristen style full of dignity and hope. I am so thankful she is such a little fighter and has such a will to live! Her main goal is to go HOME!
Friday, March 20, 2009
That seems to be the word of the week...waiting. Kristen's white count is still 0 and her anc is still 0. One good thing is that she has been fever free. She is completely wore out and I don't expect her to get any strength back any time soon. Her legs are hurting and she can barely walk to the bathroom. Her platelets are really low 12,000 and they are waiting one more day to transfuse her, unless of course she starts to bleed. So once again we sit and wait...Say a little prayer for her!
Sunday, March 15, 2009
It has been a week since we finished the chemo and things seem good so far. The Doctor was just in and I was saying how well Kristen seems, He was quick to remind me that her total white count is .0 and her ANC is also 0. He said things happen fasts and reminded me why we are here waiting and waiting. He reminded me that it is common for these AML kids to seem great one minute and the next minute they are in ICU. He said not long ago and AML patient was happy and even playing basketball in his room, then about an hour later he got a page and the boy had been taken to ICU to be treated for sepsis shock. Thanks, as if I wasn't already paranoid enough! Kristen got platelets yesterday, and by the looks of things, she will need blood and more platelets in a day or 2. It is only 11am and she has already told me twice, "I wanna go HOME!" I have been rather upset by a couple of articles I have read recently. 2 weeks ago in the Deseret News there was an article titled, Down Syndrome; A modern-day death sentence. It states that at least 90% of babies diagnosed with down syndrome are being aborted in what he calls one of the most ruthlessly effective extermination programs in modern times. There is also an article in April 1, 2009 edition of 'Woman's Day" titled "Would you like fries with that baby?" In this article is states that this year as new noninavasive tests come available, down syndrome can be diagnosed with 100% accuracy in the first trimester. It suggests that the down syndrome population could be eliminated altogether! Are you kidding me? Just because our kids have been labeled as "marginally productive" they don't have the right to be born??? Somedays I'm marginally productive, did someone want to take me out back and shoot me? All I can say at this point is that having a child with down syndrome has been nothing but a blessing in my life. She has taught me the meaning of life and every day she reminds me why I am here and helps keep me grounded. She has touched more lives that I can even begin to mention. She has a spirit about her that you could find no where else. I thank God every day for sending her to me. She is truly a miracle and an angel among us. And now she needs your prayers...Say a little prayer for her.
Tuesday, March 10, 2009
Usually it takes a week to 10 days after chemo for Kristen's counts to fall, so this morning when the nurse practitioner came in and said, "We are going to give Kristen 2 units of blood today," I said, 'HUH?" Just a day and half ago her white count was 2.3, her crit was 29 and her ANC was still up at 2300. Well today her white count was .1 that's right .1, and her crit was 22 and her ANC big fat 0! Are you kidding? Get me a copy of those counts! I told the nurse and she was right! So It took 6 hours to get both units of blood in and Kristen did great. Now I'm thinking, it must have been the new chemo that made the counts drop practically over night. I am now wondering, Hummmm, how long till they come up? In the past when she is hit with intense chemo the bone marrow is suppressed longer. I give up trying to figure it out. All I can say is we will be here until her counts come up. Kristen has not felt good for the past 2 days. Her stomach is way sick, if you know what I mean. She has had a few visits from her sisters and even 2 of her nieces. They make her happy. Ricky, Lisa, Jordan and Sara have been here too. Ricky always brings me Dr. Pepper and my favorite candy. Ryan made the baseball team at Alta! He is so excited. Now he just has to keep his grades up. They practice every day after school from 3 until 7. All I can say is Wow! By the way, I have the most amazing family ever, Kristen and I could never do this without all their support. Thanks!
Saturday, March 7, 2009
It's been a long week. We left home on Tuesday in route to the hospital for our last round of chemo! Yeah! We stopped at Kmart so Kristen could choose a new movie and whatever else she wanted to bring to the hospital. This was only like the 2nd time she has been in a store since last August. She was thrilled to push the cart up and down the aisles. First she saw a yellow purse and she picked it up and put it into the cart. Anytime she sees a yellow purse she wants to buy it. Next we came to the toy aisle. She was looking at the Hannah Montana stuff. She soon saw a High School Musical doll that came with a microphone. Kristen loves microphones so I knew this would be a keeper. Next we headed to the school aisle where she picked up some markers and of course, post its. She loves those! Soon we came to the movie aisle and she wanted High School Musical 3 and Beverly Hills Chihuahua. So 20 minutes and 90 bucks later we were back in the car headed to the hospital. We arrived at the great PCMC around 1 and after a few hours of fluids, the chemo started. I was told it would be intense. Kristen is getting high dose Cytarabine also known as Ara-C. She has received this with all 5 of her rounds, but in different doses. She has had her lifetime limit of Daunorubicine, because it causes permanent heart damage, so there is a limit, so this time they are giving her Clorfarabine. This is usually used in patients that have Acute Lymphocytic Leukemia (ALL) and who are not in remission after the first 30 days. Well Kristen has Acute Myelogenous Leukemia (AML), but since she has had her limit on the Dauno, and she is allergic to L-Asparaginase they had to bring in something to finish up her treatment. Dr. Fluechel felt good about the Clofarabine so that is what she is getting. I had do do some research on the drug because even Dr. Afifi (she is the chemo doc on this week) hasn't used the drug for 6 months and even most of the nurses say they hardly ever use it. I was concerned even more when I found out that every 15 minutes of the 2 hours that the drug is going in they have to check her vitals, and she has to be pre-treated with benadryl, tylenol and hydro-crotisome. Kristen actually did well so far. She got her last dose about an hour ago and the only problem so far is a red rash from head to toe. She has been on benadryl every 4 hours for about the last 48 hours. I wonder how she manages to stay awake. In about 15 minutes the last dose of Ara-C will go in!!!!! Then we start to play the waiting game. We wait for her counts to drop, usually 10 to 14 days and then we wait for the counts to go up, another 10 to 20 days, then.....drum roll......WE GET TO GO HOME!!!! In a day or two the chemo will really start to catch up with Kristen and I describe it like a being hit by a truck, a large one! We hope that she won't get an infection or a fever. She has already had a decrease in appetite. She continues to be a little fighter! She amazes me every day! She just called me a stinker! I think she wants some attention, so I will go now. Thanks to everyone that is praying for her and thinking about her and visiting her. Say a little prayer for her!
Monday, March 2, 2009
Tomorrow we are due to be at Primary Children's Medical Center to begin round 5 of chemo. We were susposed to go in last week but of all things, the pharmacy didn't have the drugs and couldn't get them until tomorrow. Must be some drug. I'm not looking forward to this at all, but one good thing...this is our last round of treatment! I was told to plan on 4-6 weeks in the hospital as long as Kristen doesn't get a fever or an infection. We are hoping all goes smooth. Kristen is not excited to be going back. I think I will have to bribe her and stop at Target on the way in and let her pick a couple of movies. Usually when we go to the hospital she chooses a movie called "Summer Magic." It is an old Disney movie with Haley Mills. It is a cute movie, but Kristen wants to watch it every night before she goes to sleep, I think I have it memorized word for word. It's funny that she never watches it when we are home, just when we are in the hospital. I best go pack and i'll let you know how the new chemo goes. Say a little prayer for her!