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| Happy Holidays! |
Monday, December 23, 2013
Day 775
Merry Christmas & Happy New Year! Katie is doing well. She was able to "participate" in her preschool program this past week (she sat in a chair and smiled - she was too weak to stand - and too shy to sing). But she was happy to be there and we were glad too!
The increase in her high dose steroids (after her treatment) have wrecked havoc on her this week! She has had low blood sugar episodes every day! Once at 3 am - just prior to my alarm going off to feed her, and then all the other episodes have occurred around 6 am (which is so weird because she eats and drinks so much at 3!) It has been unsettling and frustrating. I haven't slept much or well, for worrying about her.
We are excited and ready for Christmas! We will be spending the holidays with my family in New Mexico. I have not been "home" for Christmas since 2005. We have gone to New Mexico each year for New Years, but this will be my first Christmas with my family, since Scott & I got married. We are excited for Conner and Katie to share their Christmas excitement with G.G. (my mom). We have lots of fun things planned - and Katie & Conner are excited to play with their cousins.
We had a dark cloud try and douse our peace and joy this past week...But the "storm" has passed (for now). However, as the week progressed, this talk by Elder Ulisses Saores stood out in my mind:
"Chirstlike attributes are gifts from God. These attributes come as we use our agency righteously....With a desire to please God, we have to recognize our weaknesses and be willing and anxious to improve.
"Meekness is vital for us to become more Christlike. Without it we won't be able to develop other important virtues. Being meek does not mean weakness, but it does mean behaving with goodness and kindness, showing strength, serenity, healthy self-worth, and self-control.
"Meekness was one of the most abundant attributes in the Savior's life. He Himself taught His disciples, ""Learn of me; for I am meek and lowly of heart.""
"....Christ asks us to "take up our cross daily," meaning that it must be a constant focus and desire....and we should instill this feeling in the hearts of our children....that they may learn to behave properly before Him under all circumstances.
"By controlling our reactions, being calm and temperate, and avoiding contention, we will qualify for the gift of meekness.
"...I believe the Savior Jesus Christ is the supreme example of meekness. Even during the last moments of His mortal life, being unfairly accused and condemned, painfully carrying His cross up to Golgotha, being mocked and cursed by His enemies, being abandoned by many who knew him and had witnessed His miracles, He was nailed on the cross.
"Even after the most intense physical suffering, the Lord tuned to His Father and spoke from the bottom of His meek and humble heart: ""Father forgive them; for they know not what they do."" Christ faced extreme physical and spiritual suffering, giving us the opportunity to change our spiritual character and become meek like Him.
"I bear my witness that Jesus Christ is our Savior. I testify to you that, thanks to His love, it is possible to change. It is possible to leave our weaknesses behind. It is possible to reject the evil influences in our lives, control our anger, become meek, and develop the attributes of our Savior. He showed us the way. He gave us the perfect example and commanded each one of us to become as He is. His invitation to us is to follow Him, follow His example, and become like Him."
("Be Meek and Lowly of Heart" Ensign, Nov 2013).
The increase in her high dose steroids (after her treatment) have wrecked havoc on her this week! She has had low blood sugar episodes every day! Once at 3 am - just prior to my alarm going off to feed her, and then all the other episodes have occurred around 6 am (which is so weird because she eats and drinks so much at 3!) It has been unsettling and frustrating. I haven't slept much or well, for worrying about her.
We are excited and ready for Christmas! We will be spending the holidays with my family in New Mexico. I have not been "home" for Christmas since 2005. We have gone to New Mexico each year for New Years, but this will be my first Christmas with my family, since Scott & I got married. We are excited for Conner and Katie to share their Christmas excitement with G.G. (my mom). We have lots of fun things planned - and Katie & Conner are excited to play with their cousins.
We had a dark cloud try and douse our peace and joy this past week...But the "storm" has passed (for now). However, as the week progressed, this talk by Elder Ulisses Saores stood out in my mind:
"Chirstlike attributes are gifts from God. These attributes come as we use our agency righteously....With a desire to please God, we have to recognize our weaknesses and be willing and anxious to improve.
"Meekness is vital for us to become more Christlike. Without it we won't be able to develop other important virtues. Being meek does not mean weakness, but it does mean behaving with goodness and kindness, showing strength, serenity, healthy self-worth, and self-control.
"Meekness was one of the most abundant attributes in the Savior's life. He Himself taught His disciples, ""Learn of me; for I am meek and lowly of heart.""
"....Christ asks us to "take up our cross daily," meaning that it must be a constant focus and desire....and we should instill this feeling in the hearts of our children....that they may learn to behave properly before Him under all circumstances.
"By controlling our reactions, being calm and temperate, and avoiding contention, we will qualify for the gift of meekness.
"...I believe the Savior Jesus Christ is the supreme example of meekness. Even during the last moments of His mortal life, being unfairly accused and condemned, painfully carrying His cross up to Golgotha, being mocked and cursed by His enemies, being abandoned by many who knew him and had witnessed His miracles, He was nailed on the cross.
"Even after the most intense physical suffering, the Lord tuned to His Father and spoke from the bottom of His meek and humble heart: ""Father forgive them; for they know not what they do."" Christ faced extreme physical and spiritual suffering, giving us the opportunity to change our spiritual character and become meek like Him.
"I bear my witness that Jesus Christ is our Savior. I testify to you that, thanks to His love, it is possible to change. It is possible to leave our weaknesses behind. It is possible to reject the evil influences in our lives, control our anger, become meek, and develop the attributes of our Savior. He showed us the way. He gave us the perfect example and commanded each one of us to become as He is. His invitation to us is to follow Him, follow His example, and become like Him."
("Be Meek and Lowly of Heart" Ensign, Nov 2013).
Friday, December 13, 2013
Day 765
Katie had her LAST spinal tap (lumbar puncture) this week!... It didn't exactly go smoothly, but it is over... Our appointment was at 7:30 a.m. and while we were still in the waiting room, Katie told me she wanted a chocolate milk. (She was fasting for the procedure and couldn't have anything). She kept saying she wanted a chocolate milk - "Please Mommy, Please!" And then she told me she was having a low blood sugar. I asked Scott, "Do you think she is really having a low blood sugar, or do you think she is just saying that because she wants a chocolate milk?" - We weren't sure because she wasn't symptomatic (yet) - but Katie told me a couple more times that her blood sugar was low. Thankfully Dr. Dana walked through the waiting room right then. She wasn't working in clinic that day, so our appointment was with another doctor, however she stopped to talk to us. She asked how we were doing...I told her I thought Katie might be having a low blood sugar, but we weren't sure...we talked a little more about some other things...then Katie told me again she was having a low blood sugar. I told Dr. Dana I thought Katie's sugar must be low. Dr. Dana immediately took us in and told the nurse and doctor to start an IV stat! As one nurse was getting the IV ready, another nurse took Katie's blood sugar - and it was low! Katie was right, she knows her body and she knows when her blood sugar is low. Katie was extremely upset and very symptomatic at this point, and it took them awhile to get the IV in. It was very stressful and upsetting! (As always) I felt so helpless! Katie lay in my arms screaming, crying, and pleading "Please Mommy Please! (chocolate milk)... No Mommy No! (poke and IV)..." She was so upset and I seriously thought her blood sugar was going to drop so low that she was going to go unconscious. It was terrible! (I was so glad Scott was there with us). They gave Katie 450 cc's of Dextrose (which they said was a lot) - and then they disconnected her from the IV and sent us over to the hospital for Katie's procedure. I told them the last time they let us walk over with the IV, and we kept Katie on the IV the whole time. Again, they told me, Katie had gotten a lot of the Dextrose and they were sure she wouldn't need anymore. - Well, they were wrong.
Katie's procedure was supposed to start at 9:30, but we were still waiting at 10:30. I don't know why - Katie was supposed to be first because of her hypoglycemia. I just know that Katie started telling me she was "so hungry and needed to eat... Please Mommy Please!" And then she started acting upset and lethargic. I told Scott, "I think her blood sugar is dropping again." I asked Katie if her blood sugar was low and she told me it was. We got the nurse - and they tested her - and her sugar was low - again. So, it was another rush to get the IV hooked up. It was upsetting and stressful! (If this wasn't our last time, I would have voiced my concerns and frustrations about how things went - but doing so at that point wouldn't have made a difference one way or the other - what was done was done). The nurses were amazed that Katie can tell us when her blood sugar is low.
After the procedure they let us go back and sit with Katie while she was waking up. I made the mistake of sending Scott back to the clinic (to get some things they had forgotten to give us). In all the times we have done this (which has been a lot), we have never had a problem like this with Katie waking up. But right after Scott left, Katie started coughing, she was still under the anesthesia, and she couldn't clear her throat. She kept coughing and coughing, but she wasn't able to inhale. I called the nurse over and told her, "I don't think she can breathe....She can't breathe!" The nurse took Katie's oxygen mask off and turned on a long suction tube, and started sucking out Katie's throat. When she stopped, Katie started coughing again, and it was obvious Katie was still struggling to breathe. I told the nurse, "She still can't breath... She can't breathe!" I felt the panic rising in me. (How I wished Scott was there!) The nurse suctioned out Katie's throat again...and then all was well...(except for my emotions and my heart!) We also experienced something else that we hadn't before, several of the other children waking up had difficulties, and there was a lot of crying and moaning going on. Overall, it was a very stressful day.
Later that night, Scott told me, "In some respects this is harder on us, than it is on her." - In some respects it is - But boy, she has it the hardest! The doctor increased Katie's steroids for this month (and next) - and the effects are very evident. It is hard. I told Scott, "I know this was her last spinal, and she only has one more chemo to go through, but that doesn't make this any less difficult." However, it does intensify my gratitude that we are almost through.
As we were waiting for Katie to wake up from her procedure, we met a mom who has a 4 year old son, who was diagnosed with the same type of Leukemia as Katie. However, he doesn't have the right number of chromosomes and so his prognosis of survival is only 50-70% (whereas Katie's is 85-90%). It is hard to fathom how something so small can make such a difference. It almost makes me feel guilty in some ways. There are so many children and parents out there who are not as fortunate as we are and my heart aches for them. Katie has the right number of chromosomes. How blessed we are! How blessed we have been! We are very hopeful and have every reason to believe that Katie will recover from this and live a full life. We had some real scares along the way, however we are out of the woods and are moving into the light. Almost as symbolism of this, Katie's hair that had started falling out a few months ago, has started to grow back in. She has little hairs covering her head and filling in all the bare spots. She (and we) are progressing and moving forward. Katie is going to be fine and we are GLAD!
Katie's procedure was supposed to start at 9:30, but we were still waiting at 10:30. I don't know why - Katie was supposed to be first because of her hypoglycemia. I just know that Katie started telling me she was "so hungry and needed to eat... Please Mommy Please!" And then she started acting upset and lethargic. I told Scott, "I think her blood sugar is dropping again." I asked Katie if her blood sugar was low and she told me it was. We got the nurse - and they tested her - and her sugar was low - again. So, it was another rush to get the IV hooked up. It was upsetting and stressful! (If this wasn't our last time, I would have voiced my concerns and frustrations about how things went - but doing so at that point wouldn't have made a difference one way or the other - what was done was done). The nurses were amazed that Katie can tell us when her blood sugar is low.
After the procedure they let us go back and sit with Katie while she was waking up. I made the mistake of sending Scott back to the clinic (to get some things they had forgotten to give us). In all the times we have done this (which has been a lot), we have never had a problem like this with Katie waking up. But right after Scott left, Katie started coughing, she was still under the anesthesia, and she couldn't clear her throat. She kept coughing and coughing, but she wasn't able to inhale. I called the nurse over and told her, "I don't think she can breathe....She can't breathe!" The nurse took Katie's oxygen mask off and turned on a long suction tube, and started sucking out Katie's throat. When she stopped, Katie started coughing again, and it was obvious Katie was still struggling to breathe. I told the nurse, "She still can't breath... She can't breathe!" I felt the panic rising in me. (How I wished Scott was there!) The nurse suctioned out Katie's throat again...and then all was well...(except for my emotions and my heart!) We also experienced something else that we hadn't before, several of the other children waking up had difficulties, and there was a lot of crying and moaning going on. Overall, it was a very stressful day.
Later that night, Scott told me, "In some respects this is harder on us, than it is on her." - In some respects it is - But boy, she has it the hardest! The doctor increased Katie's steroids for this month (and next) - and the effects are very evident. It is hard. I told Scott, "I know this was her last spinal, and she only has one more chemo to go through, but that doesn't make this any less difficult." However, it does intensify my gratitude that we are almost through.
As we were waiting for Katie to wake up from her procedure, we met a mom who has a 4 year old son, who was diagnosed with the same type of Leukemia as Katie. However, he doesn't have the right number of chromosomes and so his prognosis of survival is only 50-70% (whereas Katie's is 85-90%). It is hard to fathom how something so small can make such a difference. It almost makes me feel guilty in some ways. There are so many children and parents out there who are not as fortunate as we are and my heart aches for them. Katie has the right number of chromosomes. How blessed we are! How blessed we have been! We are very hopeful and have every reason to believe that Katie will recover from this and live a full life. We had some real scares along the way, however we are out of the woods and are moving into the light. Almost as symbolism of this, Katie's hair that had started falling out a few months ago, has started to grow back in. She has little hairs covering her head and filling in all the bare spots. She (and we) are progressing and moving forward. Katie is going to be fine and we are GLAD!
Monday, December 9, 2013
Sunday, December 8, 2013
Day 760
We had another fun week together. We had the opportunity (from Hopekids) to go to the Nutcracker Ballet, and we loved it. I wasn't sure Conner would like it, but to my surprise he seemed to enjoy it more than Katie did, he was mesmerized by it. At one point during the ballet, Katie leaned over to her dad and asked, "Dad, why is that man a ballerina?" Of course Scott chuckled and said something like," I don't know, men shouldn't be ballerina's should they..." So then Katie leaned over to me and asked me the same question, and I told her, "Because he is a good dancer - look how high he can jump and how many turns he can do in the air." Katie still seemed perplexed by the idea. The music was wonderful, the lighting and costumes beautiful, and the dancing enchanting. It was a very nice night out.
We have also been busy getting everything ready for Christmas. Scott hung the outdoor Christmas lights yesterday, and we made sugar cookies together as a family. Katie and I made the dough, Scott rolled it out, and Katie and Conner helped cut out the cookies and decorate them - and then we all enjoyed eating them! Last night we went to a toy train display, saw Santa Claus, and then we went out to dinner. Zach is in town, and he joined in on our festivities. It was another fun day together.
However, our fun is going to come to a screeching halt this week. Katie is getting a spinal tap and IV chemo on Wednesday. I had the foresight to ask the doctor to have an IV of fluids ready for Katie upon our arrival at the clinic. We do not want her blood sugars to drop like they did last time (if we can possibly avoid it). Katie is always scheduled first thing in the morning due to her hypoglycemia... This round of chemo is extra hard on her - and it is especially hard if she needs to get an IGG infusion as well (we won't know if she needs that until they do her blood tests). BUT this will be her LAST spinal tap! We are so GLAD!!! (Just one more IV chemo next month - and then she is done!)
"Christmas is the spirit of giving without a thought of getting. It is happiness because we see joy in people. It is forgetting self and finding time for others. It is discarding the meaningless and stressing the true values. It is peace because we have found peace in the Savior’s teachings. It is the time we realize most deeply that the more love is expended, the more there is of it for others."
(Thomas S. Monson, "Christmas Is Love", 2012 First Presidency Christmas Devotional, December 2012)
We have also been busy getting everything ready for Christmas. Scott hung the outdoor Christmas lights yesterday, and we made sugar cookies together as a family. Katie and I made the dough, Scott rolled it out, and Katie and Conner helped cut out the cookies and decorate them - and then we all enjoyed eating them! Last night we went to a toy train display, saw Santa Claus, and then we went out to dinner. Zach is in town, and he joined in on our festivities. It was another fun day together.
However, our fun is going to come to a screeching halt this week. Katie is getting a spinal tap and IV chemo on Wednesday. I had the foresight to ask the doctor to have an IV of fluids ready for Katie upon our arrival at the clinic. We do not want her blood sugars to drop like they did last time (if we can possibly avoid it). Katie is always scheduled first thing in the morning due to her hypoglycemia... This round of chemo is extra hard on her - and it is especially hard if she needs to get an IGG infusion as well (we won't know if she needs that until they do her blood tests). BUT this will be her LAST spinal tap! We are so GLAD!!! (Just one more IV chemo next month - and then she is done!)
"Christmas is the spirit of giving without a thought of getting. It is happiness because we see joy in people. It is forgetting self and finding time for others. It is discarding the meaningless and stressing the true values. It is peace because we have found peace in the Savior’s teachings. It is the time we realize most deeply that the more love is expended, the more there is of it for others."
(Thomas S. Monson, "Christmas Is Love", 2012 First Presidency Christmas Devotional, December 2012)
Sunday, December 1, 2013
Day 753
We had a nice Thanksgiving with Scott's family. Katie still has a cough, but she is feeling better. We had a fun weekend together as a family - playing games, playing in the yard and at the park, and going to Peter Piper Pizza.
Katie gets her big dose of chemo next week and so we are getting in the fun while we can. We have much to be thankful for and we feel very blessed. Our lives and home have taken on a newfound sense of peace - and we are glad!
"A grateful person is rich in contentment. An ungrateful person suffers in the poverty of endless discontentment." (David A. Bednar, "The Windows of Heaven")
Katie gets her big dose of chemo next week and so we are getting in the fun while we can. We have much to be thankful for and we feel very blessed. Our lives and home have taken on a newfound sense of peace - and we are glad!
"A grateful person is rich in contentment. An ungrateful person suffers in the poverty of endless discontentment." (David A. Bednar, "The Windows of Heaven")
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