Katie is doing well. She looks good and is feeling good. Well, she is felling good other than yesterday when she got car sick as we were driving home from Heber. I had given Katie and Conner Dramamine on the drive up, but I had opted to not give it to them on the drive home. I didn't won't to "over" medicate them - unless it was needed. I thought I would just keep an eye on them to see how they were doing, and...that didn't work very well! When car sickness hits - it hits! About halfway home from Heber, Conner grabbed his stomach and started screaming. As I was giving him a Dramamine, Scott asked if Katie should get some too. I told him, "No, she seems okay." A few minutes later we pulled over to let Conner walk around in the hopes he would not throw-up. Katie hadn't complained of feeling sick, so she stayed in the car with me. About five minutes after getting back on the road, Katie threw-up! Okay, so apparently they both need Dramamine every time we make that drive!
Scott's parents recently bought a cabin up in Heber. So we will be making the drive often. It is so nice to have a place to get away! We love going to the mountains. However, this past weekend did not prove to be very relaxing. The first morning we were there, Conner tripped and hit his head on a door post and had to get 5 stitches in his forehead! Later that day he fell from a picnic table and narrowly missed hitting the back of his head on another table. The next day we went fishing by a lake, and Conner slipped on some rocks in the water and scraped up his leg, arm, and hand. He also got sunburned, because he didn't want to put his shirt back on. Later that night he ran into a table and badly bruised his knee. And then there was the drive home (car sickness).... In between all of that though, we had a nice time.
Last Wednesday we took Katie to the clinic for a check-up. Instead of using her port, they poked her in the hand to get the blood they needed to run tests. They easily found a vein and got the blood they needed, but it wasn't any easier than using the port. Katie was very upset (it took 3 of us to hold her while the nurse put the needle in and drew the blood). We were told we will soon be getting Katie's port removed. -- Katie still has a mark on her hand from where they drew the blood. It hurts me to see that, knowing we will be doing that every month for the next year and a half. It is also strange getting used to the idea that we are giving her medication every single day for the next year and a half. There are no breaks from it. Although as I said, Katie is doing very well at taking her medicine. We crush up her medication in a teaspoon, add a little juice, and then suck it up in a syringe. This past week Katie asked if she could give the medicine to herself. So, she now holds the syringe and gives it to herself. We hate all the chemo and medication she has to take, but we are glad she is able to take her medication without a fight or complaint!
A good friend of mine (who lives in California) called me last week, and she said something that hit me hard, and that I had never quite considered in this way. She mentioned how great it was that I had Katie now, instead of having her 20 years ago. I sometimes forget how old I am! I could have had my children 20 years ago - I am 45 years old, 20 years ago, I would have been 25. If I had had Katie 20 years ago, she most likely would have died from the Leukemia. (A doctor told me in the beginning: "If we give your daughter the same medication we gave patience 20 years ago, your daughter would not live.") That is such a strange thing to think about! I don't know exactly what was meant to be or not be. If I had gotten married earlier, maybe my daughter wouldn't have had Leukemia - maybe... But one thing I know for sure is that because I did get married 20 years later, and had Katie 20 years later, she has a 90% chance to live verses a 3% chance to live. That has been such a strange but amazing insight. Maybe there are more reasons to "why" I got married later in life than I have could have ever before possibly realized.... All those painful years I spent alone, now play a huge part in the very reason why my daughter will live - and her living will save me from an even greater pain than what I had gone through before. What was once seen as a huge trial in my life, can now been seen as a great blessing, when viewed from a different perspective... No matter what or when - or what was foreordained or not - I am so grateful for the husband I have and the children I have. I am grateful (that if I were to have a daughter with Leukemia) that I have been blessed to have her now when there is such a great chance of a cure for her.
M. Russell Ballard has said: “My message to you today, my brothers and sisters, is simply this: the Lord is in control. He knows the end from the beginning. He has given us adequate instruction that, if followed, will see us safely through any crisis. His purposes will be fulfilled, and someday we will understand the eternal reasons for all of these events. Therefore, today we must be careful to not overreact....but what we must do is keep the commandments of God and never lose hope!” (“The Joy of Hope Fulfilled,” Ensign, Nov. 1992, 31).
Monday, July 30, 2012
Tuesday, July 24, 2012
Day 258
We are back. We had a nice visit with my mom and family in New Mexico. There have been some highs and lows with Katie since I last wrote. Maintenance hit her hard. Katie looked and acted so sick for the first week after treatments. It was worse than it has been. It was very painful and difficult to see her so sick again. However, after the first week, Katie started looking and acting better. By day 2 of the steroids we noticed the effects, and by day 5 we were seeing the full effects - weakness, hunger, cravings, very emotional, weak, and even her face and tummy puffed up a little. However, the steroids are wearing off now, and she is daily getting stronger. By the end of our trip, Katie was almost back to her "normal" self. I can still sense some weakness in her, but she is happy and doing well.
The BIG surprise in all of this is how well Katie has taken her medication. She has taken it daily without complaint!!! It has been amazing! What a blessing - for her and us! I had talked to Katie before hand, and explained to her that she would have to take her medicine every day now. I told her we would be going to the clinic less and not getting as many "pokes," but that also meant she would have to take medicine every day - like a big girl. And she has! She has been such a big girl. There has been a lot of medication to take - especially that first week - but she has taken it without any fight, complaint, or struggle. What a relief that has been!! It just goes to show how much she has changed and matured from when this all started 8 months ago. I am so thankful for this blessing. I am so glad we aren't having to force the medication on her every day.
Another great thing, is that Katie's hair has grown so much in the past two weeks. That has amazed us! We have been told it could still fall out or thin, but most likely it will not. Katie is so excited about her hair - and we are excited and happy for her. She is looking forward to clips, bows, and ponytails.
Life has continued to be a roller coaster, but hopefully Maintenance will bring more of a regular routine into our lives. (Although, I hope the routine won't be that she has such a rough first week every month! That truly was very hard). We go back to the clinic tomorrow for a check-up. No chemo, but she will still get poked. Actually, tomorrow they are going to try using a vein rather than her port. The doctors are anxious to get her port out - and in a way, we are too. Taking her port out will lessen the risk of Katie getting a life threatening infection. (Although I dread the surgery to remove her port!)
We still have almost a year and a half of Maintenance ahead of us. I hope people will continue to pray for sweet Katie and our family. We still need it! However, I am wanting to shift my focus from sickness to wellness. I have decided not to continue posting daily on the blog. Instead, I am going to post once a week. Hopefully, now that we are in Maintenance, there will not be so many ups and downs and not so much to comment on. Hopefully, our life will take on some normality. We are ready for that! My only worry in doing this, is loosing people's interest in Katie. I started this blog in the hopes of "reminding" people about Katie, so people would remember to pray for her. I hope your prayers for Katie will not lessen as my blog writing lessens. Katie still needs as much prayer as she ever did. Please keep praying for our sweet little Katie!
Spencer W. Kimball said: “There is a knowledge that our Father in Heaven wants each of us to have, and that is a personal knowledge that he hears and answers our prayers.” ("Pray Always," Ensign, Oct. 1981, 3).
The BIG surprise in all of this is how well Katie has taken her medication. She has taken it daily without complaint!!! It has been amazing! What a blessing - for her and us! I had talked to Katie before hand, and explained to her that she would have to take her medicine every day now. I told her we would be going to the clinic less and not getting as many "pokes," but that also meant she would have to take medicine every day - like a big girl. And she has! She has been such a big girl. There has been a lot of medication to take - especially that first week - but she has taken it without any fight, complaint, or struggle. What a relief that has been!! It just goes to show how much she has changed and matured from when this all started 8 months ago. I am so thankful for this blessing. I am so glad we aren't having to force the medication on her every day.
Another great thing, is that Katie's hair has grown so much in the past two weeks. That has amazed us! We have been told it could still fall out or thin, but most likely it will not. Katie is so excited about her hair - and we are excited and happy for her. She is looking forward to clips, bows, and ponytails.
Life has continued to be a roller coaster, but hopefully Maintenance will bring more of a regular routine into our lives. (Although, I hope the routine won't be that she has such a rough first week every month! That truly was very hard). We go back to the clinic tomorrow for a check-up. No chemo, but she will still get poked. Actually, tomorrow they are going to try using a vein rather than her port. The doctors are anxious to get her port out - and in a way, we are too. Taking her port out will lessen the risk of Katie getting a life threatening infection. (Although I dread the surgery to remove her port!)
We still have almost a year and a half of Maintenance ahead of us. I hope people will continue to pray for sweet Katie and our family. We still need it! However, I am wanting to shift my focus from sickness to wellness. I have decided not to continue posting daily on the blog. Instead, I am going to post once a week. Hopefully, now that we are in Maintenance, there will not be so many ups and downs and not so much to comment on. Hopefully, our life will take on some normality. We are ready for that! My only worry in doing this, is loosing people's interest in Katie. I started this blog in the hopes of "reminding" people about Katie, so people would remember to pray for her. I hope your prayers for Katie will not lessen as my blog writing lessens. Katie still needs as much prayer as she ever did. Please keep praying for our sweet little Katie!
Spencer W. Kimball said: “There is a knowledge that our Father in Heaven wants each of us to have, and that is a personal knowledge that he hears and answers our prayers.” ("Pray Always," Ensign, Oct. 1981, 3).
Thursday, July 12, 2012
Day 246
We are officially in Maintenance. Yesterday was long, but everything went fine. Katie took a chemo pill last night and she will start taking her (twice a day) dose of steroids today. She takes the steroids for 5 days each month. We are told to expect to see the "effects" of the steroids monthly. Katie will take the chemo pill (6MP) daily for the next year and a half. Also, On Friday's Katie will take 5 additional chemo pills (Mexotrexate). We asked to get any or all these in liquid forms, but the doctors said no. So we are crushing and putting them in a syringe with a tiny bit of juice. I told Scott I didn't want to try and "hide" any of the pills - there are too many to try and hide anyway - and especially since they can't be taken with food, milk or citrus - there is no way to hide it!
We had planned on giving the chemo pills to her in the morning, but they told us it needs to be evening, because it absorbs better into her system in the evening. We think evening will be more of a challenge than the morning, because she has to take it two hours after food, and an hour or two before food. My kids like a bed time snack - that isn't going to work anymore, because she would have to wait two hours after dinner to take the pills and then wait another hour or two before she could have a "bedtime snack". (So if we ate dinner at 6 pm, she would take the pills at 8 pm and couldn't snack until 9-10 pm - and she is in bed by then). I guess I could try moving dinner up to 5 pm...but we would have to eat right at 5 pm in order for her to get a snack at 8-9 pm. We will just see how it all goes, and we will do whatever we need to do. I told Katie the same type of thing, "You are a big girl now, and you are going to have to take medicine every day, morning and night. We have to do this to get rid of the cancer. So you are just going to have to do it. I know you can, because you are a big girl now." She took it fine last night - so we will see how that goes too.
We are going out of town today for awhile. It will be nice for us to get away. I will not be posting while we are gone. The 24th of July, Pioneer Day, is approaching and I wanted to recognize and honor their lives and sacrifices.
We had planned on giving the chemo pills to her in the morning, but they told us it needs to be evening, because it absorbs better into her system in the evening. We think evening will be more of a challenge than the morning, because she has to take it two hours after food, and an hour or two before food. My kids like a bed time snack - that isn't going to work anymore, because she would have to wait two hours after dinner to take the pills and then wait another hour or two before she could have a "bedtime snack". (So if we ate dinner at 6 pm, she would take the pills at 8 pm and couldn't snack until 9-10 pm - and she is in bed by then). I guess I could try moving dinner up to 5 pm...but we would have to eat right at 5 pm in order for her to get a snack at 8-9 pm. We will just see how it all goes, and we will do whatever we need to do. I told Katie the same type of thing, "You are a big girl now, and you are going to have to take medicine every day, morning and night. We have to do this to get rid of the cancer. So you are just going to have to do it. I know you can, because you are a big girl now." She took it fine last night - so we will see how that goes too.
We are going out of town today for awhile. It will be nice for us to get away. I will not be posting while we are gone. The 24th of July, Pioneer Day, is approaching and I wanted to recognize and honor their lives and sacrifices.
Gordon B. Hinckley shared this: "Every man and woman in this Church knows something of the price paid by our forebears for their faith. I have been reminded of this whenever I read the narrative of Mary Goble Pay, my wife's grandmother.
" 'We arrived in Salt Lake City nine o'clock at night the 11th of December 1856. Three out of four that were living were frozen. My mother was dead in the wagon. . . .
" 'Early next morning . . . Brigham Young . . . came. . . . When he saw our condition, our feet frozen and our mother dead, tears rolled down his cheeks... .
" 'The doctor amputated my toes . . . [while] the sisters were dressing my mother for her grave. . . . When my feet were fixed they [carried] . . . us in to see our mother for the last time. Oh how did we stand it. That afternoon she was buried. . . .
" '[I have thought often of my mother's words before we left England.] "Polly, I want to go to Zion while my children are small, so they can be raised in the Gospel of Christ for I know this is the true church" ' (A Pioneer Story: Mary Goble Pay, 1856, Archives of The Church of Jesus Christ of Latter-day Saints, 2–4, 10).
"I conclude with this question: Should we be surprised if we are called upon to endure a little criticism, to make some small sacrifice for our faith when our forebears paid so great a price for theirs?" , "Pursue the Steady Course," Ensign, Jan. 2005, 6–7).
I am grateful for my pioneer ancestors who paid the price of faith, and who left such a exemplary legacy for us to follow! Our Katie has some of that "pioneer stock" in her. She is strong, hearty, and determined! Elder Oaks said, "It is not enough to study or reenat the accomplishments of our pioneers. We need to identify the great, eternal principles they applied to achieve all they achieved for our benefit and then apply those priciples to the challenges of our day. In that way we honor their pioneering efforts, and we also reaffirm our heritage and strengthen its capacity to bless our own posterity and 'those millions of our Heavenly Father's children who have yet to hear and accept the gospel of Jesus Christ' We are all pioneers in doing so." ("Following the Pioneers," Ensign, Nov. 1997, 72).
Wednesday, July 11, 2012
Day 245
We still notice some weakness in Katie, she climbs up the stairs on all fours (plus uses her head), or she asks us to carry her. She has also been complaining of foot pain this past week - all due to the chemo. It is hard to take her back...but, we are off to the clinc this morning. We are glad there are treatments available to cure Katie's cancer.
"The enabling power of the Atonement strengthens us to do and be good and to serve beyond our own individual desire and natural capacity." (David A. Bednar, "The Atonement and the Journey of Mortality." Ensign, April 2012).
"The enabling power of the Atonement strengthens us to do and be good and to serve beyond our own individual desire and natural capacity." (David A. Bednar, "The Atonement and the Journey of Mortality." Ensign, April 2012).
Tuesday, July 10, 2012
Day 244
"A quality life is God's greatest wish for us. Life is to be lived well in whatever circumstances we find ourselves. There should not be a waiting period." , "Be a Quality Person," Ensign, Feb. 1993, 64).
We are back at the clinic tomorrow. Katie will get a spinal tap and chemo in her port. We are glad to be able to enjoy today.
We are back at the clinic tomorrow. Katie will get a spinal tap and chemo in her port. We are glad to be able to enjoy today.
Monday, July 9, 2012
Day 243
Back to the present... Things are good. Katie is doing well. We have two more days until we begin Maintenance. Katie is loving her new found freedom. She loves to go out! It doesn't matter where we go - just as long as we go! Every day she says, "let's go...I want to go." She has really enjoyed being able to go back to church and nursery. It has been nice for both of us to get out of the house more!
"The Prophet Joseph . . . explained that 'faith is not only the principle of action, but of power also, in all intelligent beings, whether in heaven or on earth' (Lectures on Faith, 3). Thus, faith in Christ leads to righteous action, which increases our spiritual capacity and power. Understanding that faith is a principle of action and of power inspires us to exercise our moral agency in compliance with gospel truth, invites the redeeming and strengthening powers of the Savior's Atonement into our lives, and enlarges the power within us whereby we are agents unto ourselves (see D&C 58:28)." , "Ask in Faith," Ensign, May 2008, 95).
"The Prophet Joseph . . . explained that 'faith is not only the principle of action, but of power also, in all intelligent beings, whether in heaven or on earth' (Lectures on Faith, 3). Thus, faith in Christ leads to righteous action, which increases our spiritual capacity and power. Understanding that faith is a principle of action and of power inspires us to exercise our moral agency in compliance with gospel truth, invites the redeeming and strengthening powers of the Savior's Atonement into our lives, and enlarges the power within us whereby we are agents unto ourselves (see D&C 58:28)." , "Ask in Faith," Ensign, May 2008, 95).
Sunday, July 8, 2012
Day 242
I am still in a reflective mood today... It was hard in November (and even a little hard now) to know I didn't "catch" Katie's symptoms sooner than I did. Scott noticed something was wrong with Katie before I did (which is hard as a mom). Getting Katie in sooner would not have made a difference in her Prognosis - but her poor little body would not have had to work so hard for however long it did. I know it is a pointless matter now, and like I said the doctors told us we did catch it "early."
I guess the hardest part is just remembering our circumstances at the time. That time period, leading up to Katie's diagnosis was the most painful and difficult time in my life (this was not just your "run of the mill" kind of stuff). Our family was going through things the average person will never go through. Our life was so intensely overshadowed by some events on the peripheral of our life that it made it difficult to focus on the interior of our life. Maybe that is why I didn't see Katie's symptoms sooner. Or maybe I just couldn't even comprehend (or deal with the fact) that our daughter had something so wrong with her that she needed to go to the hospital. Whatever the reason...like I said, it was a blessing we got her in when we did, and it was a blessing we took her to the hospital rather than the Pediatrician's office. Katie's outcome would not have been as favorable if she had been diagnosed later. So really, Scott says things worked out for the best - the way they needed to.
I am amazed, as I think back to last November. I was so emotionally drained, prior to getting the news of Katie's diagnosis, that it is a miracle I was able to carry on and be strong for her after her diagnosis. I can testify of the Lord's power to give us strength beyond our own. At that point I had already gone beyond my own capabilities to cope. I can clearly remember receiving strength in the days, weeks, months following Katie's prognosis. I actually felt stronger after Katie's prognosis that I had felt prior to it. There is no "logical" explanation to that - other than the tender mercies of the Lord and ministering angels. The power of prayer has been such a HUGE part of this whole process for us. We KNOW Katie has been blessed - she hasn't had to go through a lot of the negative side effects she could have gone through. Scott and I have felt strengthened - it has been real and tangible! Scott and I have reflected on that many many times over the past 8 months. I am so grateful for those who have "stayed with us" throughout this whole process with Katie. Your prayers have made a difference for Katie and our whole family. I am grateful for my family and the joy and happiness they bring to me. I am grateful for such a good and supportive husband. I am grateful for the help of extended family and friends - most especially Scott's mom. I am grateful for our Savior and his healing power. I can testify there is "Balm in Gilead!"
"When sore trials came upon you,
Did you think to pray?
When your soul was full of sorrow,
Balm of Gilead did you borrow
At the gates of day?
Oh, how praying rests the weary!
Prayer will change the night to day.
So, when life gets dark and dreary,
Don't forget to pray."
(Did You Think to Pray, Hymn #140).
Just as the Balm of Gilead (an aromatic gum or spice used for healing wounds), can heal physical wounds, I testify that Christ can heal our emotional and spiritual wounds, if we will go to him in prayer. I am so grateful for that knowledge and that blessing. Prayer has blessed and saved our Katie, and prayer has strengthened the rest of our family - physically, emotionally and spiritually. We are glad for all the blessings we have received through all the difficulties we faced in this past year, but we are even more grateful to be moving forward!
I guess the hardest part is just remembering our circumstances at the time. That time period, leading up to Katie's diagnosis was the most painful and difficult time in my life (this was not just your "run of the mill" kind of stuff). Our family was going through things the average person will never go through. Our life was so intensely overshadowed by some events on the peripheral of our life that it made it difficult to focus on the interior of our life. Maybe that is why I didn't see Katie's symptoms sooner. Or maybe I just couldn't even comprehend (or deal with the fact) that our daughter had something so wrong with her that she needed to go to the hospital. Whatever the reason...like I said, it was a blessing we got her in when we did, and it was a blessing we took her to the hospital rather than the Pediatrician's office. Katie's outcome would not have been as favorable if she had been diagnosed later. So really, Scott says things worked out for the best - the way they needed to.
I am amazed, as I think back to last November. I was so emotionally drained, prior to getting the news of Katie's diagnosis, that it is a miracle I was able to carry on and be strong for her after her diagnosis. I can testify of the Lord's power to give us strength beyond our own. At that point I had already gone beyond my own capabilities to cope. I can clearly remember receiving strength in the days, weeks, months following Katie's prognosis. I actually felt stronger after Katie's prognosis that I had felt prior to it. There is no "logical" explanation to that - other than the tender mercies of the Lord and ministering angels. The power of prayer has been such a HUGE part of this whole process for us. We KNOW Katie has been blessed - she hasn't had to go through a lot of the negative side effects she could have gone through. Scott and I have felt strengthened - it has been real and tangible! Scott and I have reflected on that many many times over the past 8 months. I am so grateful for those who have "stayed with us" throughout this whole process with Katie. Your prayers have made a difference for Katie and our whole family. I am grateful for my family and the joy and happiness they bring to me. I am grateful for such a good and supportive husband. I am grateful for the help of extended family and friends - most especially Scott's mom. I am grateful for our Savior and his healing power. I can testify there is "Balm in Gilead!"
"When sore trials came upon you,
Did you think to pray?
When your soul was full of sorrow,
Balm of Gilead did you borrow
At the gates of day?
Oh, how praying rests the weary!
Prayer will change the night to day.
So, when life gets dark and dreary,
Don't forget to pray."
(Did You Think to Pray, Hymn #140).
Just as the Balm of Gilead (an aromatic gum or spice used for healing wounds), can heal physical wounds, I testify that Christ can heal our emotional and spiritual wounds, if we will go to him in prayer. I am so grateful for that knowledge and that blessing. Prayer has blessed and saved our Katie, and prayer has strengthened the rest of our family - physically, emotionally and spiritually. We are glad for all the blessings we have received through all the difficulties we faced in this past year, but we are even more grateful to be moving forward!
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