Katie has been on Maintenance for 2-3 months now. Her blood levels have been a little bit high each time. The treatment protocol is to have the patience's levels be not too high or too low. Because Katie's levels have been up, the last time we were at the clinic, the doctor increased the amount of chemo we give her (in order to bring her levels down). So, now on Fridays, instead of giving her 1/2 a pill, we give her 2 pills - along with the other 5 pills she takes (of a different type of chemo). There has been a noticeable difference in Katie the past couple of weeks! No one else would probably notice the difference in her, but we can tell a difference. I almost called the clinic 3 times this week because I was so worried about her. Katie will break out in a full body sweat at nap time and at bedtime - she will be drenched in sweat. She has also been more tired, emotional, and weak. A few times this week (including today) I have found her lying in her bed. When I ask her what she is doing, she replies that she is tired and wants to take a nap. She also fell asleep on the floor of her room once this week - she was pretending to put her "babies" down for a nap - and she fell asleep...it was 10:00 in the morning! I keep having Scott check on her - check her heart rate, temperature, etc... Scott assures me it is just the additional chemo "doing it's job...taking her down." It has taken her down - and I don't like it!! It worries me. I don't like to see her feeling bad.
Although Katie may be a little "down," she is not "out." She is going to Joy School on Monday and Wednesday mornings and she is LOVING it. She also loves to go anywhere and everywhere with her daddy (even Home Depot). Whereas Conner loves to stay at home with mommy - he says, "I'll stay home with you mom, so you won't miss me!" Sometimes Conner thinks he wants to go with his dad, and he will get as far as Scott's truck, and then he will turn around and come back inside - he wants to stay with me. Because Conner likes to stay with me so much, it has surprised us that he goes to preschool with no tears and no complaints - he won't even let us walk him to the school door - he wants to go by himself... They are both growing up so fast!....and they are both so very sweet! Katie's hair continues to grow - slowly - but she is loving it (we still can't get a clip or bow to stay in it yet, but we try sometimes anyway).
I read this article "Forging the Soul" this morning, from the Church News (week of September 9, 2012, p.16). I just happened upon it and I hadn't read it yet- and it was exactly what I needed today. I am going to give excerpts of it. - "During the Middle Ages weaposnsmiths faced a challenging dilemma. When crafting a sword, the typical blade could be hardened to hold a sharp edge but it was brittle and prone to shatter when hit by another sword or smashed against a shield or breastplate. Alternately, a blade could be fashioned with soft metal to be almost unbreakable but the material would dull quickly and not hold a sharp edge. It soon became useless in battle.
"For hundreds of years the best sword makers in the world were found in Japan. The reason for their superiority was the discovery of a technique that solved a problem: create a sword that would hold a sharp edge during battle but remain virtually indestructible. The process consisted of combining layers of steel with different degrees of hardness. It was a long and laborious process for the weapons forger because each layer had to be heated again and again, folded back on itself and hammered out thin. After about a dozen times through the process, the steel would contain thousands of paper-thin laminations containing both hard and soft metal. The newly forged weapon had both a hardness that could be sharpened to a fine edge and soft steel that dept the blade from breaking.
"If we relate the development of our own soul to the art of Japanese sword making, we see a powerful correlation. The furnace of affliction with its heat, hammering and sou-folding has the power to create an unshakable spirit. At a moment of great trial and suffering in the prophet Joseph Smith's life, he petitioned the Lord to receive some sort of insight. The Lord said, "...all these things shall give thee experience, and shall be for thy good." (D&C 122:7). The Savior uses trials for spiritual growth.
"President Thomas S. Monson said, 'I bear to you my witness that [Heavenly Father] is there. He does hear and answer every prayer. His Son, the Christ, burst the bands of our earthly prisons. Heaven's blessings await you" ("Miracles of Faith," Ensign, July 2004).
"If we could understand the mind and will of God, we might be eternally grateful for the challenges we faced in mortality because of the growth we received. Some soul growing can be attained by no other means.
"The greatest of all the gifts of God is eternal life, said President Henry B. Eyring. 'For us to have that gift and to be given that trust, we must be transformed through making righteous choices where that is hard to do.' The true test of life is not adversity but 'to see if we can endure difficulty. It is to see if we can endure it well. We pass the test by showing that we remembered Him and the commandments He gave us. And to endure well is to keep those commandments whatever the opposition, whatever the temptation and whatever the tumult around us' (April 2009 general conference, "Adversity").
"...Elder M. Russell Ballard suggested, "Just do the very best you can each day. Do the basic things and, before you realize it your life will be full of spiritual understanding that will confirm to you that your Heavenly Father loves you. When a person knows this, then life will be full of purpose and meaning, making balance easier to maintain" (April 1987 general conference, "Keeping Life's Demands in Balance").
"We must never forget that our Heavenly Father is not out to destroy us by testing us. We have an apostolic promise. "In the school of mortality, the tutor is often pain and tribulation, but the lessons are meant to refine and bless us and strengthen us, not to destroy us," Elder Robert D. Hales said. 'There is nothing that we are enduring that Jesus does not understand, and He waits for us to go to our Heavenly Father in prayer. I testify that if we will be obedient and if we are diligent, our prayers will be answered, our problems will diminish, our fears will dissipate, light will come upon us, the darkness of despair will be dispersed and we will be close to the Lord and feel of His love and of the comfort of the Holy Ghost.' (April 1998 general conference; "Behold, We count Them Happy Which Endure," Ensign, May 1998).
"Let us, as our own souls are being forged, be patient with God, ourselves and others. We are under the training regimen of the heavens. Elder Jeffery R. Holland said, 'It is not without a recognition of life's tempests but fully and directly because of them that I testify of God's love and the Savior's power to calm the storm...They sustain us in our hour of need - and always will, even if we cannot recognize that intervention. some blessings come soon, some come late, and some don't come until heaven; but for those who embrace the gospel of Jesus Christ, they come' (October 1999 general conference, "An High Priest of Good Things to Come," Ensign, November 1999).
"When we endure a trial faithfully without breaking our standing with God, our souls are strengthened, the Lord delivers an equal or greater blessing and we demonstrate He can trust us. President Monson declared. 'Though the storm clouds may gather, though the rains may pour down upon us, our knowledge of the gospel and our love of our Heavenly Father and of our Saviour will comfort and sustain us and bring joy to our hearts as we walk uprightly and keep the commandments. There will be nothing in this world that can defeat us...fear not. Be of good cheer. The future is as bright as your faith" (April 2009 general conference, "Be of Good Cheer")." --End of article.
While I was typing this, I remembered an experience I had with Katie this week. One day, as we were driving in the car, I was commenting about being "mad" about something. To which Katie replied, "Don't be mad mom...today is a happy day...think a happy thought." - Yes, Katie I said, "Think a happy thought." - She is something else that girl! =) I am glad to have her as my daughter... She is my happy thought!...and Conner too.
Sunday, September 16, 2012
Saturday, September 8, 2012
Day 304
Katie went to the clinic three days ago for IV chemo and antibiotics. As we went into the treatment area, we saw Ori and his mom. Ori is a 6 year old boy with Leukemia. He is a sweet sweet boy whose cancer replased a few months ago. Ori loves firetrucks and firefighters, and (if you remember) Scott brought a fire truck to the clinic for Ori and the other children to see one day. Anyway, we almost didn't recognize Ori at first, he is bald now and looked sick. We sat next to him while Katie got her treatment. We learned some new things that day at the clinic...
I asked Ori's mom how she found out that he had relapsed. She told us that Ori had completed his 3 years of treatment (treatment for boys is longer than girls). Six months after his treatments ended, Ori's mom said she was just beginning to relax and think they were a "normal" family again...and then everything changed - again! One day Ori's blood work came back bad (discovered at his monthly check-up). The next day a spinal tap confirmed that his cancer was back. So sad!!! The treatment is much more intense the second time around. Coincidentally, Ori was diagnosed at the exact same age as Katie (2 1/2). He was deemed "low risk" - which means he had the right genetics (triple trisomes) and good results on his "Day 8" lab. "Low risk" means you are at low risk for having a relapse - yet Ori did relapse. His mom said, "Ori doesn't know anything different, being sick and being at the clinic/hospital is all he has really ever known." They are a good family. Ori is a sweet and happy natured child - like Katie. My heart goes out to them!
I have a nagging worry about Katie relapsing. I know I can't live in fear of that happening... but the reality is, the fear is always there, because it is a possibility. The fear is something I have to fight to keep in the back of my mind and not in the front. Scott and I were surprised by a few other things we were told that day. First of all, we were surprised Ori's family found out so quickly about the relapse. We had been told (at the EV clinic) that if the cancer was back, it would take several bad blood tests in a row, over a few months period, before they would know the cancer was back. We were also surprised to learn that after the treatment stops, there is a 3 year "wait and see" period. The first 3 years after treatment is the time when there is the strongest possibility of the cancer returning. The biggest (and worst) surprise of the day was in talking with Dr. Dana about all of this. To our dismay, we found out that Cardon's Hospital (where we started) did not do the lab test they were supposed to do on day 8. Without that test, we do not know if Katie is "low risk" or "average risk" for her cancer to return. We know Katie has the good genetics, but without the "Day 8" test results, we can't and don't know if Katie is low risk or average risk. Dr. Dana said it doesn't really matter at this point, because we have done all we can possibly do. She said, "The rest is in God's hands." She is right! Scott and I did not opt for a (trial) lower level of treatment, even though we could have. We choose to stay on the "standard treatment plan." Because of that choice we made, we have given our daughter a greater chance of not relapsing after her treatments are over.
Children who are on the trial treatments get less chemo than those on the "standard" treatment plan. On the standard plan, Katie went through one extra round of Intermaintance. In the trial, the doctors are giving less chemo to "low risk" patients to see if they can give less chemo and still have the same outcome. Scott and I could have opted for the "low risk" plan, but we felt very strongly we should go with the proven treatment plan rather than the experimental. Even though Katie got a little more chemo now, it lessened the possibility of her relapsing - and Katie having to go through the treatments all over again. Because we choose that route, it REALLY is in God's hands. We have done all we can do. If Katie relapses, we won't ever have to wonder if it was because we choose the low risk treatment. (Although more chemo now can come with it's own consequences too). For now though, Katie is doing great and she is responding. We may not know if Katie is low or average risk, but we feel blessed Katie is not in the "high risk" category. We are glad Katie has the right genetics which gives her a greater chance for a more positive and hopeful outcome!
Today is Katie's 3rd day of steroids (for this month) and it has brought it's usual results. She is hungry, upset, weak and tired... I hate what the steroids do to her - although I appreciate what they do for her - they are part of the chemo process to help save her life. So we will do whatever we need to do.
Katie is the sweetest little angel there ever was. We love her so much! I try to hold all the fears and worries back and just enjoy each day I have with her - Enjoying her is easy, because she is such a joy!!! Holding back the fears is not so easy. I know it is pointless to worry about things that may or may not come. My focus is my family. I love my husband and I love my children - they give my life meaning and purpose.
It is important to cherish each day we have with our families. President Thomas S. Monson has commented, "Time passes quickly... We cannot call back time that is past, we cannot stop time that now is, and we cannot experience the future in our present state. Time is a gift, a treasure not to be put aside for the future but to be used wisely in the present. ("Dedication Day," Ensign, Nov. 2000, 66).
I asked Ori's mom how she found out that he had relapsed. She told us that Ori had completed his 3 years of treatment (treatment for boys is longer than girls). Six months after his treatments ended, Ori's mom said she was just beginning to relax and think they were a "normal" family again...and then everything changed - again! One day Ori's blood work came back bad (discovered at his monthly check-up). The next day a spinal tap confirmed that his cancer was back. So sad!!! The treatment is much more intense the second time around. Coincidentally, Ori was diagnosed at the exact same age as Katie (2 1/2). He was deemed "low risk" - which means he had the right genetics (triple trisomes) and good results on his "Day 8" lab. "Low risk" means you are at low risk for having a relapse - yet Ori did relapse. His mom said, "Ori doesn't know anything different, being sick and being at the clinic/hospital is all he has really ever known." They are a good family. Ori is a sweet and happy natured child - like Katie. My heart goes out to them!
I have a nagging worry about Katie relapsing. I know I can't live in fear of that happening... but the reality is, the fear is always there, because it is a possibility. The fear is something I have to fight to keep in the back of my mind and not in the front. Scott and I were surprised by a few other things we were told that day. First of all, we were surprised Ori's family found out so quickly about the relapse. We had been told (at the EV clinic) that if the cancer was back, it would take several bad blood tests in a row, over a few months period, before they would know the cancer was back. We were also surprised to learn that after the treatment stops, there is a 3 year "wait and see" period. The first 3 years after treatment is the time when there is the strongest possibility of the cancer returning. The biggest (and worst) surprise of the day was in talking with Dr. Dana about all of this. To our dismay, we found out that Cardon's Hospital (where we started) did not do the lab test they were supposed to do on day 8. Without that test, we do not know if Katie is "low risk" or "average risk" for her cancer to return. We know Katie has the good genetics, but without the "Day 8" test results, we can't and don't know if Katie is low risk or average risk. Dr. Dana said it doesn't really matter at this point, because we have done all we can possibly do. She said, "The rest is in God's hands." She is right! Scott and I did not opt for a (trial) lower level of treatment, even though we could have. We choose to stay on the "standard treatment plan." Because of that choice we made, we have given our daughter a greater chance of not relapsing after her treatments are over.
Children who are on the trial treatments get less chemo than those on the "standard" treatment plan. On the standard plan, Katie went through one extra round of Intermaintance. In the trial, the doctors are giving less chemo to "low risk" patients to see if they can give less chemo and still have the same outcome. Scott and I could have opted for the "low risk" plan, but we felt very strongly we should go with the proven treatment plan rather than the experimental. Even though Katie got a little more chemo now, it lessened the possibility of her relapsing - and Katie having to go through the treatments all over again. Because we choose that route, it REALLY is in God's hands. We have done all we can do. If Katie relapses, we won't ever have to wonder if it was because we choose the low risk treatment. (Although more chemo now can come with it's own consequences too). For now though, Katie is doing great and she is responding. We may not know if Katie is low or average risk, but we feel blessed Katie is not in the "high risk" category. We are glad Katie has the right genetics which gives her a greater chance for a more positive and hopeful outcome!
Today is Katie's 3rd day of steroids (for this month) and it has brought it's usual results. She is hungry, upset, weak and tired... I hate what the steroids do to her - although I appreciate what they do for her - they are part of the chemo process to help save her life. So we will do whatever we need to do.
Katie is the sweetest little angel there ever was. We love her so much! I try to hold all the fears and worries back and just enjoy each day I have with her - Enjoying her is easy, because she is such a joy!!! Holding back the fears is not so easy. I know it is pointless to worry about things that may or may not come. My focus is my family. I love my husband and I love my children - they give my life meaning and purpose.
It is important to cherish each day we have with our families. President Thomas S. Monson has commented, "Time passes quickly... We cannot call back time that is past, we cannot stop time that now is, and we cannot experience the future in our present state. Time is a gift, a treasure not to be put aside for the future but to be used wisely in the present. ("Dedication Day," Ensign, Nov. 2000, 66).
Friday, August 31, 2012
Day 296
We are going to my In-laws "cabin" this weekend, to help them paint and hopefully for some R and R. I wanted to do something nice for my family, so I decided to make cookies to take with us this weekend. As the first batch of cookies were baking, a little nagging thought kept trying to come to the front of my mind... About a month ago my husband "helped" me by cleaning out my spice cabinet. Today as I was mixing up the dough, I wondered where the salt was, as couldn't find it in the cabinet, I ended up opening a new one. As I watched my cookies baking, I began to wonder why they didn't look quite right... All of the sudden it hit me like a lightening bolt...The salt! My husband had poured the salt in one of the canisters on the counter... I only put sugar in the canisters... So today, I made Salt Cookies! I used salt in place of the sugar! (SIGH.....) I threw away the baked cookies and the cookie dough and began again. When Scott came home, I asked him to please not put salt in the canisters anymore. He agreed, and then he said, "You know, if this is the worst thing that happens to us today, then it is going to be a good day!" Scott and Katie are a lot alike! They look for the good and positive. I love that! I hope Katie always retains her happy positive attitude through out her life.
Katie's tape came off her incision today - with a little help from Scott. It looks good. Scott says that when she is an adult it will be a small scar. The reminder will always be there though. I wonder what other kind of "scars" Katie will have from all of this. I know this will have some effect her in some ways. I hope it helps her to have more compassion and concern for others. I hope it "softens' her rather than "hardens" her. She still has so much to go through. It has been a long hard journey, and there is still a lot of road ahead! It has finally all caught up to me I guess. My body seems to be revolting. My body is out of balance. I am not sleeping at night...at all. Scott was the first to notice. He told me I wasn't sleeping very well, so I started to pay attention at night. I noticed I was awake and aware a lot of the night. After we talked about it however, it was like the power of suggestion got to me... I stopped sleeping all together. I haven't slept at night or even been able to nap during the day. I have tried multiple sleeping pills (natural to prescription) and I have had two blessings. Last night I tried a new "pill" and slept at least part of the night. Thankfully!!! I hadn't had any (REM) sleep in a week or more and I was barely able to function yesterday - physically and mentally. I am still dragging today, but I feel better with having had a little sleep. - But no big surprise that I mistook salt for sugar! (I might have done that anyway, even if I wasn't tired!)
Katie is doing well, we go in for treatments this next Wednesday. We love to see her hair growing. It makes us all smile! Scott is going back on "shift" (24 hour shifts) at the fire station. He has been working "days" since Katie got sick and we are grateful to the Department for allowing Scott to do so! It has been such a help and blessing to have Scott home every night. I worry a little about him going back on shift, I certainly will miss having him home every night! I am grateful to Scott for being willing to work a desk job and sacrificing for Katie and our family. He is a good dad and husband and I am grateful! I have felt the "worry" lately of wanting to be a good parent. I recognize the importance and responsibility of teaching my children, yet I do not want to be "weighed down" by the worry, and let that rob me of today's strength and joy. Thank goodness for the grace of God! Oh, how I rely upon that power, and I feel I need to draw upon that power more and more each day.
"Should there be anyone who feels he is too weak to do better because of that greatest of fears, the fear of failure, there is no more comforting assurance to be had than the words of the Lord: 'My grace is sufficient for all men that humble themselves before me; for if they humble themselves before me, and have faith in me, then will I make weak things become strong unto them' (Ether 12:27)." (, "Our Sacred Priesthood Trust," Ensign, May 2006, 57).
Katie's tape came off her incision today - with a little help from Scott. It looks good. Scott says that when she is an adult it will be a small scar. The reminder will always be there though. I wonder what other kind of "scars" Katie will have from all of this. I know this will have some effect her in some ways. I hope it helps her to have more compassion and concern for others. I hope it "softens' her rather than "hardens" her. She still has so much to go through. It has been a long hard journey, and there is still a lot of road ahead! It has finally all caught up to me I guess. My body seems to be revolting. My body is out of balance. I am not sleeping at night...at all. Scott was the first to notice. He told me I wasn't sleeping very well, so I started to pay attention at night. I noticed I was awake and aware a lot of the night. After we talked about it however, it was like the power of suggestion got to me... I stopped sleeping all together. I haven't slept at night or even been able to nap during the day. I have tried multiple sleeping pills (natural to prescription) and I have had two blessings. Last night I tried a new "pill" and slept at least part of the night. Thankfully!!! I hadn't had any (REM) sleep in a week or more and I was barely able to function yesterday - physically and mentally. I am still dragging today, but I feel better with having had a little sleep. - But no big surprise that I mistook salt for sugar! (I might have done that anyway, even if I wasn't tired!)
Katie is doing well, we go in for treatments this next Wednesday. We love to see her hair growing. It makes us all smile! Scott is going back on "shift" (24 hour shifts) at the fire station. He has been working "days" since Katie got sick and we are grateful to the Department for allowing Scott to do so! It has been such a help and blessing to have Scott home every night. I worry a little about him going back on shift, I certainly will miss having him home every night! I am grateful to Scott for being willing to work a desk job and sacrificing for Katie and our family. He is a good dad and husband and I am grateful! I have felt the "worry" lately of wanting to be a good parent. I recognize the importance and responsibility of teaching my children, yet I do not want to be "weighed down" by the worry, and let that rob me of today's strength and joy. Thank goodness for the grace of God! Oh, how I rely upon that power, and I feel I need to draw upon that power more and more each day.
"Should there be anyone who feels he is too weak to do better because of that greatest of fears, the fear of failure, there is no more comforting assurance to be had than the words of the Lord: 'My grace is sufficient for all men that humble themselves before me; for if they humble themselves before me, and have faith in me, then will I make weak things become strong unto them' (Ether 12:27)." (, "Our Sacred Priesthood Trust," Ensign, May 2006, 57).
Sunday, August 26, 2012
Day 291
Conner and I are sick with the flu. So far Katie hasn't caught it and hopefully she won't!....Never mind... I just heard her coughing, so I think she has it. Bummer! Katie still has bruising on her chest (and sterrie strips and dissoluble stitches) from getting her port removed. The sterrie strips should start to come off this week. Overall Katie has been doing well. Although she has had a rash on her back and neck for the past month or more - from her medication. She also gets a rash around her mouth that comes and goes. She is still doing a super job at taking her medication daily. We are so glad, that has been such a blessing and relief! However, it has been challenging to not let her eat for an hour before or for two hours after her medicine (every evening). We are getting it done though.
Katie goes in for her next treatment on September 5th. We go to the clinic monthly now instead of weekly. It has been really nice not having to go to the clinic as often. Katie's hair is growing in - it isn't long enough yet for a bow or barrette - but it is growing. Last week Scott said, "We need to cut the hair over her ears, it is starting to stick out." I laughed and reminded him that she is a girl and that her hair needs to grow over her ears or she would always have a boy haircut! So, no, we didn't cut her hair. =) When Katie was completely bald, I guess people assumed she had cancer, and they just wouldn't say anything. However, now that she has a little hair, we keep getting strange comments from people - "Does her hair just grow slow?" "Why is her hair so short?" "Is her hair just not growing in?" - she has also been called a boy a time or two. We get a lot of strange looks - stares. So, it will be nice when her hair grows in a little more.
Katie will be starting "joy school" soon with some children in our ward and neighborhood. She is very excited. After the mom's and kids met to plan the school year, Katie has been putting on her backpack and playing school. I am excited for her to live a "normal life" and I hope her treatments won't hold her back from being able to participate. We are happy she is doing so well! It is so fun to watch her and Conner play together. Life has gotten better/easier since we entered the maintenance phase. Things are good
Elder Joseph B. Wirthlin has said: "Each of us will have our own Fridays--those days when the universe itself seems shattered and the shards of our world lie littered about us in pieces. We all will experience those broken times when it seems we can never be put together again. We will all have our Fridays.
Katie goes in for her next treatment on September 5th. We go to the clinic monthly now instead of weekly. It has been really nice not having to go to the clinic as often. Katie's hair is growing in - it isn't long enough yet for a bow or barrette - but it is growing. Last week Scott said, "We need to cut the hair over her ears, it is starting to stick out." I laughed and reminded him that she is a girl and that her hair needs to grow over her ears or she would always have a boy haircut! So, no, we didn't cut her hair. =) When Katie was completely bald, I guess people assumed she had cancer, and they just wouldn't say anything. However, now that she has a little hair, we keep getting strange comments from people - "Does her hair just grow slow?" "Why is her hair so short?" "Is her hair just not growing in?" - she has also been called a boy a time or two. We get a lot of strange looks - stares. So, it will be nice when her hair grows in a little more.
Katie will be starting "joy school" soon with some children in our ward and neighborhood. She is very excited. After the mom's and kids met to plan the school year, Katie has been putting on her backpack and playing school. I am excited for her to live a "normal life" and I hope her treatments won't hold her back from being able to participate. We are happy she is doing so well! It is so fun to watch her and Conner play together. Life has gotten better/easier since we entered the maintenance phase. Things are good
Elder Joseph B. Wirthlin has said: "Each of us will have our own Fridays--those days when the universe itself seems shattered and the shards of our world lie littered about us in pieces. We all will experience those broken times when it seems we can never be put together again. We will all have our Fridays.
"But I testify to you in the name of the One who conquered death--Sunday will come. In the darkness of our sorrow, Sunday will come.
"No matter our desperation, no matter our grief, Sunday will come. In this life or in the next, Sunday will come.
"I testify to you that the Resurrection is not a fable. We have the personal testimonies of those who saw Him. Thousands in the Old and New Worlds witnessed the risen Savior. They felt the wounds in His hands, feet, and side. They shed tears of unrestrained joy as they embraced Him." (, "Sunday Will Come," Ensign, Nov. 2006, 30).
Sunday, August 19, 2012
Day 284
Katie had her port removed on Friday, and all went well. The doctor made only one incision (verses the two when they put it in). She has stitches on the left side of her chest. Thankfully, she did not need platelets this time, so we did not have to worry about her having an allergic reaction. Now that the surgery is done, it is a relief, and we are glad to have the port out. This is a milestone for us. We plan to celebrate by going to California during Fall Break. Katie will now be able to swim in public pools and play in the ocean. Hopefully all will continue to go well and she will continue to respond to treatments. We have been really blessed, and we feel so grateful for all the tender mercies we have experienced.
Last night, Scott got a big smile on his face and he said, "Katie is so sweet." Almost on a daily basis, one of us will make this comment about Katie, and then we recount the events of the day that brought on this comment of sweetness. Katie finds sheer joy in living. She has such a naturally sunny disposition. She lightens and brightens the mood in our family and home. I am amazed at how one little girl can bring the rest of us "up" the way she does, but she does. We are learning from her!
This week we have been reminded how fragile and precious life is. Some friends of ours had a son pass away a few days ago. He went running with friends on the high school track and had a heart attack. This was completely unexpected, as he was healthy, and there we no known problems. He was 36 years old. He had a wife, a 3 year old, and a new baby. His parents, who are our friends, have offered their continuing support to us during this difficult time with Katie - and now it is they who have lost a child (not us). When I spoke with our friend, she said, "you know, it doesn't matter if you loose them when they are 5 or 36, it is so painful." I have gotten a glimpse of that type of pain, and I hope not to know if fully. Opposition is meant to be part of our earthly experience so we can learn and grow. As a result, life can be full of unexpected twists and turns. This has been is a humbling reminder of how fragile life is - that God is in control - and that all things are in His hands. We should not take anyone or anything for granted.
Dallin H. Oaks said, “As children of God, knowing of His great love and His ultimate knowledge of what is best for our eternal welfare, we trust in Him. The first principle of the gospel is faith in the Lord Jesus Christ, and faith means trust.” (“Healing the Sick,” Ensign, May 2010, 50).
Dieter F. Uchtdorf said, "There are those among you who...have already suffered a full measure of grief and sorrow. My heart is filled with compassion and love for you. How dear you are to the Church. How beloved you are of your Heavenly Father. Though it may seem that you are alone, angels attend you. Though you may feel that no one can understand the depth of your despair, our Savior, Jesus Christ, understands. He suffered more than we can possibly imagine, and He did it for us; He did it for you. You are not alone." ("Your Happily Ever After," Ensign, May 2010, 126).
Last night, Scott got a big smile on his face and he said, "Katie is so sweet." Almost on a daily basis, one of us will make this comment about Katie, and then we recount the events of the day that brought on this comment of sweetness. Katie finds sheer joy in living. She has such a naturally sunny disposition. She lightens and brightens the mood in our family and home. I am amazed at how one little girl can bring the rest of us "up" the way she does, but she does. We are learning from her!
This week we have been reminded how fragile and precious life is. Some friends of ours had a son pass away a few days ago. He went running with friends on the high school track and had a heart attack. This was completely unexpected, as he was healthy, and there we no known problems. He was 36 years old. He had a wife, a 3 year old, and a new baby. His parents, who are our friends, have offered their continuing support to us during this difficult time with Katie - and now it is they who have lost a child (not us). When I spoke with our friend, she said, "you know, it doesn't matter if you loose them when they are 5 or 36, it is so painful." I have gotten a glimpse of that type of pain, and I hope not to know if fully. Opposition is meant to be part of our earthly experience so we can learn and grow. As a result, life can be full of unexpected twists and turns. This has been is a humbling reminder of how fragile life is - that God is in control - and that all things are in His hands. We should not take anyone or anything for granted.
Dallin H. Oaks said, “As children of God, knowing of His great love and His ultimate knowledge of what is best for our eternal welfare, we trust in Him. The first principle of the gospel is faith in the Lord Jesus Christ, and faith means trust.” (“Healing the Sick,” Ensign, May 2010, 50).
Dieter F. Uchtdorf said, "There are those among you who...have already suffered a full measure of grief and sorrow. My heart is filled with compassion and love for you. How dear you are to the Church. How beloved you are of your Heavenly Father. Though it may seem that you are alone, angels attend you. Though you may feel that no one can understand the depth of your despair, our Savior, Jesus Christ, understands. He suffered more than we can possibly imagine, and He did it for us; He did it for you. You are not alone." ("Your Happily Ever After," Ensign, May 2010, 126).
Sunday, August 12, 2012
Day 277
Katie went to the clinic on Wednesday for her monthly dose of chemo and antibiotics. Putting the IV in her hand verses the port is not going to be any easier. Right now, it is actually harder - I hope it won't always be harder. Katie is terrified! She starts crying as soon as she learns we are going to the doctor (which is nothing new). She will eventually stop crying, but she stays upset and clingy. When the nurse comes into the room Katie starts crying again. Scott and I hold Katie's body, arms and legs, while one nurse puts the IV in her hand and another nurse holds her arm down. It takes 4 of us to get the job done. Afterward, the nurses always say, "Wow, she is really strong!" Then they look at us and say, "Are you guys okay?" (We never are). It is hard on all of us. Throughout the process Katie always cries, "No mommy, no mommy, no...!" It is heartbreaking. Even Scott gets emotional. I can not even begin to describe what it feels like to go through this. It is hard, it is difficult, it is painful, it is not normal... That is what I thought this last time. "This is not normal." Our daughter is going through things that are not normal for a child to have to go through. She is not having "a normal childhood." A child should not have to experience the kind of terror and pain and sickness Katie is having to go through.
Katie will be getting her port taken out this Friday. Scott is anxious to get it taken out - and I am just anxious about getting it out! Hopefully all will go well. Katie has done better this time around with her treatments than she did last month. Her tummy hurt on Wednesday and Thursday, but she did not get as sick as she did last time. Today is her last day of steroids for this month, and that too has not seemed as bad this time. We are glad she was able to tolerate it better this month. Par for the course, she is weaker than usual and hungry because of the steroids and a little moody, but it hasn't been overly extreme. I don't know why it was so much harder last month than this month, but hopefully it will stay like this every month (which isn't great, but better than bad).
I always seem to make a connection with a mother in the waiting room prior to going in for our appointment. They are women who I would never have dreamed I would connect with - they are so totally different from me, different lifestyles - yet in those briefs moments in the clinic, I have felt such a deep connection to them. They know and understand things about me and my life that no one else can - and vice-a-versa. This last time, there was a mother with her son, who was about 8 years old. Her son was fussing and she was getting frustrated with him. I "recognized" her frustration. She got a little short with him and then she looked over at me (embarrassed by her reaction). I did not feel critical of her, I felt compassion for her. When she looked over at me again, I said, "It is hard isn't it?" She said, "It is hard!...very hard!!" Our eyes teared up and we both connected. She looked at me again later with a look of deep gratitude. Her mood changed with her son after that, she was now comforting him rather than being harsh with him. It was like the pressure had been relieved a little, just by being able to acknowledge how hard it is - with someone who understands. Nothing else was said between us, and I will probably never see her again, but I will always remember her. This is hard!
Katie can always seem to find the joy and good in everything. A couple of days ago, I found a scorpion in my shower. I wanted Katie to see it and know what it is, so she would not touch one if she ever saw one. As I am trying to explain to her that it is a bad bug, Katie sees the scorpion move and says to me, "Oh! It is a sweet bug!! (giggle, giggle). Even after I explained to her what it is and what it does, she was still looking at it (and talking to it) affectionately. And again last night, we were walking outside and there were a group of flies flying around us, the rest of us were shewing them, saying things like, "Stupid flies," "Go away flies." Katie started giggling and said, "They are sweet flies, they tickle me!" She is the sweet one! She maintains her sweetness and joy amidst such adversity and pain. At the clinic, after her IV is in, Katie always seeks to comfort us, as we are trying to comfort her. She is such a good girl. I love her so much! I hope she will always be able to maintain her loving, sweet, compassionate, and joyful nature!
Katie will be getting her port taken out this Friday. Scott is anxious to get it taken out - and I am just anxious about getting it out! Hopefully all will go well. Katie has done better this time around with her treatments than she did last month. Her tummy hurt on Wednesday and Thursday, but she did not get as sick as she did last time. Today is her last day of steroids for this month, and that too has not seemed as bad this time. We are glad she was able to tolerate it better this month. Par for the course, she is weaker than usual and hungry because of the steroids and a little moody, but it hasn't been overly extreme. I don't know why it was so much harder last month than this month, but hopefully it will stay like this every month (which isn't great, but better than bad).
I always seem to make a connection with a mother in the waiting room prior to going in for our appointment. They are women who I would never have dreamed I would connect with - they are so totally different from me, different lifestyles - yet in those briefs moments in the clinic, I have felt such a deep connection to them. They know and understand things about me and my life that no one else can - and vice-a-versa. This last time, there was a mother with her son, who was about 8 years old. Her son was fussing and she was getting frustrated with him. I "recognized" her frustration. She got a little short with him and then she looked over at me (embarrassed by her reaction). I did not feel critical of her, I felt compassion for her. When she looked over at me again, I said, "It is hard isn't it?" She said, "It is hard!...very hard!!" Our eyes teared up and we both connected. She looked at me again later with a look of deep gratitude. Her mood changed with her son after that, she was now comforting him rather than being harsh with him. It was like the pressure had been relieved a little, just by being able to acknowledge how hard it is - with someone who understands. Nothing else was said between us, and I will probably never see her again, but I will always remember her. This is hard!
Katie can always seem to find the joy and good in everything. A couple of days ago, I found a scorpion in my shower. I wanted Katie to see it and know what it is, so she would not touch one if she ever saw one. As I am trying to explain to her that it is a bad bug, Katie sees the scorpion move and says to me, "Oh! It is a sweet bug!! (giggle, giggle). Even after I explained to her what it is and what it does, she was still looking at it (and talking to it) affectionately. And again last night, we were walking outside and there were a group of flies flying around us, the rest of us were shewing them, saying things like, "Stupid flies," "Go away flies." Katie started giggling and said, "They are sweet flies, they tickle me!" She is the sweet one! She maintains her sweetness and joy amidst such adversity and pain. At the clinic, after her IV is in, Katie always seeks to comfort us, as we are trying to comfort her. She is such a good girl. I love her so much! I hope she will always be able to maintain her loving, sweet, compassionate, and joyful nature!
President Monson has said: “None of us makes it through this life without problems and challenges—and sometimes tragedies and misfortunes. After all, in large part we are here to learn and grow from such events in our lives. We know that there are times when we will suffer, when we will grieve, and when we will be saddened. However, we are told, ‘Adam fell that men might be; and men are, that they might have joy.’
"How might we have joy in our lives, despite all that we may face? Again from the scriptures: ‘Wherefore, be of good cheer, and do not fear, for I the Lord am with you, and will stand by you.’ ” ...“My beloved brothers and sisters, fear not. Be of good cheer. The future is as bright as your faith.” (“Be of Good Cheer,” Ensign, May 2009, 89).
Sunday, August 5, 2012
Day 270
Katie caught a cough and cold this past week. We have been watching her closely - if she gets a fever over 100 we have to take her to the hospital. We are glad she hasn't spiked a fever. We will be taking Katie to the clinic on Wednesday for chemo (which means she will also start her 5 days of steroids). It is hard to believe it has been a month already!
Katie is scheduled to get her port removed on August 17th. I have mixed emotions about that... but I know it is best if we get it removed. I just worry about her going through the surgery. I asked about platelets (which she is severely allergic to) and I was told she will only get platelets if absolutely necessary. When Katie got her port put in she went into severe encephalitic shock and the doctor had to do chest compressions on her during the surgery. Hence my worry about taking it out. Although I have been told the removal of the port is much easier than putting it in. So, I will try to control my worry.
Other than her cold, Katie seems to be doing well. Her hair is growing - it has lightened up in color - and she is very excited about getting hair. Conner keeps getting hurt somehow. Is it just the age? Or just part of being a boy? Whatever it is, it is stressful! We got great news this week for Nathan. We have been working (fighting) with the school district for a year and a half, trying to get appropriate services for Nathan because of his Dyslexia. We met again on Friday and they finally agreed to pay for a one-on-one Dyslexia tutor for him during the school day! It has been a long hard battle, but this will completely change his life and we couldn't be more pleased! - Blessings are flowing and we are grateful!
Susan W. Tanner has said: "I delight in the Lord's mercies and miracles (see "Bless Our Fast, We Pray," Hymns, no. 138). I know that His tender mercies and His miracles, large and small, are real. They come in His way and on His timetable. Sometimes it is not until we have reached our extremity. Jesus's disciples on the Sea of Galilee had to toil in rowing against a contrary wind all through the night before Jesus finally came to their aid. He did not come until the "fourth watch," meaning near dawn. Yet He did come. (See Mark 6:45-51.) My testimony is that miracles do come, though sometimes not until the fourth watch." ("My Soul Delighteth in the Things of the Lord," Ensign, May 2008, 83).
Katie is scheduled to get her port removed on August 17th. I have mixed emotions about that... but I know it is best if we get it removed. I just worry about her going through the surgery. I asked about platelets (which she is severely allergic to) and I was told she will only get platelets if absolutely necessary. When Katie got her port put in she went into severe encephalitic shock and the doctor had to do chest compressions on her during the surgery. Hence my worry about taking it out. Although I have been told the removal of the port is much easier than putting it in. So, I will try to control my worry.
Other than her cold, Katie seems to be doing well. Her hair is growing - it has lightened up in color - and she is very excited about getting hair. Conner keeps getting hurt somehow. Is it just the age? Or just part of being a boy? Whatever it is, it is stressful! We got great news this week for Nathan. We have been working (fighting) with the school district for a year and a half, trying to get appropriate services for Nathan because of his Dyslexia. We met again on Friday and they finally agreed to pay for a one-on-one Dyslexia tutor for him during the school day! It has been a long hard battle, but this will completely change his life and we couldn't be more pleased! - Blessings are flowing and we are grateful!
Susan W. Tanner has said: "I delight in the Lord's mercies and miracles (see "Bless Our Fast, We Pray," Hymns, no. 138). I know that His tender mercies and His miracles, large and small, are real. They come in His way and on His timetable. Sometimes it is not until we have reached our extremity. Jesus's disciples on the Sea of Galilee had to toil in rowing against a contrary wind all through the night before Jesus finally came to their aid. He did not come until the "fourth watch," meaning near dawn. Yet He did come. (See Mark 6:45-51.) My testimony is that miracles do come, though sometimes not until the fourth watch." ("My Soul Delighteth in the Things of the Lord," Ensign, May 2008, 83).
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