I feel like Katie getting Chicken Pox has been a reminder that I need to be more proactive, I have to be in charge of my daughter's health care and not just leave it up to the doctors. I need to research things on my own and be very vigilant about her health care.
After doing some research, I have come to realize how blessed we are that Katie only had a mild case of Chicken Pox. If she had been on steroids in the past couple of weeks (verses being off steroids for 3 weeks) she most likely would have had a severe case. Chicken Pox and steroids are not a good mix - and can lead to severe complications and even possibly death! I am angry that the on-call doctor I spoke to on Saturday morning did not even ask me about Katie's steroids, that she did not have me bring Katie to the hospital, and that more was not done to ensure my daughter was okay. The doctor that day - and even the doctors on Monday (when I called the clinic acted like Katie was just another kid with Chicken Pox, BUT that is not the case. Katie has Leukemia and her immune system is not like other kids and Chicken Pox could have been life threatening for her.
Like I said, it wasn't until Tuesday that the doctors started reacting to this (they were short staffed and there wasn't a Leukemia doctor working until Tuesday). Even then, we feel like they were more concerned about not infecting the other children, than they were about Katie, because they did not want us to bring her in. In a way I can understand that, but in a way I also resent that. I am angry about how things were handled by them. I am sad and frustrated Katie got the Chicken Pox - period. I am sad and frustrated Katie has to take (more) medication twice a day, for a long period of time, because she got Chicken Pox. I am scared, sad, and frustrated that she could easily get Chicken Pox again or Shingles. It is just one more fear and worry.
We think we found the origin of the Chicken Pox. I am taking turns with other mom's teaching Joy School. Katie is one of 7 children. I was encouraged by our doctor to involve her in a preschool program. Two weeks ago, one of the children was immunized for Chicken Pox, and came to Joy School the next day. This is not anyone's fault - the mother even asked her Pediatrician if it was okay for her child to be around Katie and she was told it was okay. Our doctors at PCH would have told us the same thing. However, it takes two weeks for Chicken Pox to "appear" - and the timing is too exact for it to be a coincidence or anything else. Plus no one else we know had Chicken Pox. It is rare for a child to contract Chicken Pox from another child getting immunized. The theory on this has swung from one pendulum to the other on this topic - the doctors used to not let siblings of patients get immunized for fear of exposing the child with Leukemia - now they say it is okay to be around immunized kids. Unfortunately, Katie is proof that a child with a low immune system can get Chicken Pox from a child who received the vaccination. (Again, we do not blame anyone for this - there is no way any of us could have known to do anything any differently).
I am still worried about Katie. She threw up last night and was very shaky this morning. I am scared, sad, and frustrated!!! Katie goes to the clinic today for a chemo treatment and antibiotics - and to start her 5 days of steroids. I believe the risk of steroids mixed with the Pox is no longer an issue, as Katie is past the worst of it. However, I will be sharing my fears, concerns, and frustrations with the doctor. (Unfortunately, our doctor is still out of the country). I am going to just say it one more time... I am frustrated! I wish things were different. I wish Katie didn't have Leukemia...didn't get Chicken Pox.....
But back to reality, back to dealing with it, and back to looking for the positive. I know I am reacting to what could have happened and not what actually happened (but for Scott and I, this is a terrible reminder of how vulnerable our daughter is, and of all the things that could happen, and how many things can be life threatening for her other than just the Leukemia). However, we do recognize the great blessing we were given this past week, and that things were not worse than they were. I am glad that if Katie were to get Chicken Pox, that she got them 3 weeks after her last steroid treatment and not at any other time. I am glad that she only had a mild case. I am glad she is doing better. I am glad she is responding to her chemo treatments. I am glad her chemo treatments and other medications are available. I am glad she is alive. I am glad she is who she is. I am glad to be her mom.
Friday, October 5, 2012
Tuesday, October 2, 2012
Day 328
Well it was confirmed by the doctors today...Katie has chicken pox. We are a bit frustrated because we called the hospital on Saturday morning and the doctor on call acted like it was no big deal - and even yesterday when I called it clinic they acted like it is was only kind of a big deal - now today, the team of doctors got together and decided it is a dig deal. (Our regular doctor is out of the country right now). Today they cancelled her spinal tap (that she was getting tomorrow) and postponed it for a month. They rescheduled us to come in on Friday instead of tomorrow - at which time, she will get her "regular" dose of chemo for the month and her IV antibiotics. The bummer is that because of this delay, Katie will now be on steroids at Disneyland. "Roid Rage" and Disneyland will not go together very well! I had it all planned out very carefully (months in advance) just so Katie would get her treatments and steroids in advance of Fall Break and prior to our California trip/Disneyland. But, I couldn't have planned for chicken pox!!!
That isn't the worst of it though, that is just bad timing, the worst part is and I quote (our nurse), "Katie is not a normal kid - because she is going through chemo she doesn't have the immune system of a normal kid." Now that Katie has been "exposed" she is susceptible to getting chicken pox again or getting shingles. So the doctors have decided put her on a medication twice a day for the next year and few months until Katie is through with her treatments (Jan 2014). The medication is to try and help prevent any additional outbreaks of chicken pox or shingles - it isn't a guarantee, just a way to help try and prevent outbreaks. Scott and I understand the need for this, but it is very upsetting. We hate the thought of adding another medication to her long list (and mix) of medications. It is worrisome to think about the lasting effects of taking so many medications. - Plus Katie always has a rash now, some days worse than others, now I am going to worry all the time if it is just a rash - or shingles - or chicken pox coming back. And yes, I know, worrying won't help anything, but it is hard not to worry!
On the "glad" thought for the day... Scott's aunt gave us a puppy on Sunday. It just happened to be the kind of puppy we had talked about wanting - she is a Morky - a mix of Maltese and Yorkie. She is a tiny ball of fluff - she is white with a little bit of apricot color to her. Conner has insisted her name is "Peaches" and he will not let us name her anything else. So, yesterday we gave up trying to come up with another name. Peaches it is. She has already brought much joy into our home - a type of joy that has been missing since our dog Cozy passed away about 10 months ago. I wasn't really ready for another dog - if I had my way, we wouldn't have ever gotten another one (it was too hard loosing Cozy) - but Scott felt the kids needed a dog. And she is a sweet little thing - we are all in love with her already - I am probably the most attached!
Dieter F. Uchtdorf said: "Patience—the ability to put our desires on hold for a time—is a precious and rare virtue. We want what we want, and we want it now. Therefore, the very idea of patience may seem unpleasant and, at times, bitter...Nevertheless, without patience, we cannot please God; we cannot become perfect."
That isn't the worst of it though, that is just bad timing, the worst part is and I quote (our nurse), "Katie is not a normal kid - because she is going through chemo she doesn't have the immune system of a normal kid." Now that Katie has been "exposed" she is susceptible to getting chicken pox again or getting shingles. So the doctors have decided put her on a medication twice a day for the next year and few months until Katie is through with her treatments (Jan 2014). The medication is to try and help prevent any additional outbreaks of chicken pox or shingles - it isn't a guarantee, just a way to help try and prevent outbreaks. Scott and I understand the need for this, but it is very upsetting. We hate the thought of adding another medication to her long list (and mix) of medications. It is worrisome to think about the lasting effects of taking so many medications. - Plus Katie always has a rash now, some days worse than others, now I am going to worry all the time if it is just a rash - or shingles - or chicken pox coming back. And yes, I know, worrying won't help anything, but it is hard not to worry!
On the "glad" thought for the day... Scott's aunt gave us a puppy on Sunday. It just happened to be the kind of puppy we had talked about wanting - she is a Morky - a mix of Maltese and Yorkie. She is a tiny ball of fluff - she is white with a little bit of apricot color to her. Conner has insisted her name is "Peaches" and he will not let us name her anything else. So, yesterday we gave up trying to come up with another name. Peaches it is. She has already brought much joy into our home - a type of joy that has been missing since our dog Cozy passed away about 10 months ago. I wasn't really ready for another dog - if I had my way, we wouldn't have ever gotten another one (it was too hard loosing Cozy) - but Scott felt the kids needed a dog. And she is a sweet little thing - we are all in love with her already - I am probably the most attached!
Dieter F. Uchtdorf said: "Patience—the ability to put our desires on hold for a time—is a precious and rare virtue. We want what we want, and we want it now. Therefore, the very idea of patience may seem unpleasant and, at times, bitter...Nevertheless, without patience, we cannot please God; we cannot become perfect."
"Patience means active waiting and enduring. It means staying with something and doing all that we can—working, hoping, and exercising faith; bearing hardship with fortitude, even when the desires of our hearts are delayed. Patience is not simply enduring; it is enduring well!"
Saturday, September 29, 2012
Day 325
Still using the iPad... So this will be shorter than usual. As I said, I took Katie to the clinic on Tuesday and they put her on antibiotics. That night was another long night. Katie's fever maintained and she got a rash and began itching. I thought she was having an allergic reaction to the antibiotics, so I watched her close through out the night. The next morning when she woke up, she threw up. I called the clinic when they opened. They thought it was probably an allergic reaction as well or a combination of things (chemo, antibiotics, fever), so they prescribed a new antibiotic for her. Katie's fever went down that day so we did not feel a need to take her back to the clinic. Then yesterday a thought kept nagging at me... Katie could not get her 2 year immunizations because of the leukemia and treatments (she cant get immunized until her treatments are completed)... And her "rash" was no longer looking like just a rash... And now today I know it is not just a rash! I don't know for sure what it is, but it is not just a rash! After researching on the internet, my best guess is chicken pox!!! The clinic is closed on the weekends (of course) so I had to call the doctor on call at the hospital. Her guess is it is chicken pox or a virus that acts like chicken pox. But since Katie doesn't have a fever anymore and is acting fine, she said I didn't have to bring her to the ER unless she gets worse. I check her every few minutes! Poor girl!
Tonight I gave her an oatmeal bath to help soothe her - Conner hopped in there with her. I think I need a soothing bath too! It has been a stressful and tiring week. The blog isnt working, my new dishwasher isn't working right, sick kids, husband at work - today Conner plugged up the toilet and it overflowed (more than once) and he didn't tell me... And then Katie shattered a jar of pickles all over the kitchen floor, I had to mop like 5 times to get all the sticky juice and specks of glass up.... Just to list a few...but really, in perspective it is all good.
I had a strange thought this week. Scott and I recently purchased some more food storage. We have always felt it is important to be prepared for any type of emergency that may arise, so we have planned and prepared. However if there is some type of local, national, or world catastrophe - even something as small or as simple as a transportation strike - could mean that my daughter's chemo and other medications would not be available to us. So no matter how much we prepare, that would be something totally out of our control - and how utterly devastating that would be!!! So, like I said, in perspective - broken pickle jars, overflowing toilets, and even chicken pox, is not that big of a deal. I am grateful every day that the medications my daughter needs to stay alive are available to us. How blessed we are for the advantages we have in this country, and to live in this day and time. What a blessing my sweet children are to me. I love them so!
Tonight I gave her an oatmeal bath to help soothe her - Conner hopped in there with her. I think I need a soothing bath too! It has been a stressful and tiring week. The blog isnt working, my new dishwasher isn't working right, sick kids, husband at work - today Conner plugged up the toilet and it overflowed (more than once) and he didn't tell me... And then Katie shattered a jar of pickles all over the kitchen floor, I had to mop like 5 times to get all the sticky juice and specks of glass up.... Just to list a few...but really, in perspective it is all good.
I had a strange thought this week. Scott and I recently purchased some more food storage. We have always felt it is important to be prepared for any type of emergency that may arise, so we have planned and prepared. However if there is some type of local, national, or world catastrophe - even something as small or as simple as a transportation strike - could mean that my daughter's chemo and other medications would not be available to us. So no matter how much we prepare, that would be something totally out of our control - and how utterly devastating that would be!!! So, like I said, in perspective - broken pickle jars, overflowing toilets, and even chicken pox, is not that big of a deal. I am grateful every day that the medications my daughter needs to stay alive are available to us. How blessed we are for the advantages we have in this country, and to live in this day and time. What a blessing my sweet children are to me. I love them so!
Tuesday, September 25, 2012
Day 321
Conner has been on antibiotics since Sunday night. Now it is Katie's turn. She cried off and on throughout the night last night - but no fever - until this morning. I called the clinic and they told me to bring her in (and to be prepared for a possible hospital stay). Thankfully though, Katie's blood levels were all good, so she doesn't have to be admitted. (If she still had her port in, she would have had to stay in the hospital no matter what because she has a fever - so we are glad she got her port out!). Katie will continue with her chemo regimen even though she is sick and on antibiotics.
As of a couple of weeks ago, Scott went back on shift at the fire station, so he can't take off from work like he used to when he was working "days" in the downtown office... And he is working today... so he couldn't be at the clinic with us - that was hard on him and us! We have scheduled as many of her "regular" appointments as possible on days when Scott isn't working so he can be there too. Everything is easier and better if Daddy is there.
As of a couple of weeks ago, Scott went back on shift at the fire station, so he can't take off from work like he used to when he was working "days" in the downtown office... And he is working today... so he couldn't be at the clinic with us - that was hard on him and us! We have scheduled as many of her "regular" appointments as possible on days when Scott isn't working so he can be there too. Everything is easier and better if Daddy is there.
Sunday, September 23, 2012
Day 319
The blog is giving me trouble again - I have been trying to post off and on tonight without much luck. Very frustrating! I am doing this on the ipad, because it wont let me do this from our home computer. So (for many reasons) this is going to be short... Speaking of which - Conner got his hair cut yesterday, and for the first time since this began, Conner's hair is shorter than Katie's! We are very glad and excited about that!
Yesterday was my 45th birthday. Conner started getting sick yesterday afternoon/evening. He has a high fever. At one point today it reached 103.7 (as the Tylenol wore off) he doesn't have a cough or runny nose and he has no complaints - just a fever. Very concerning - doublely concerning because of Katie. Katie woke up again this morning drenched in sweat and she was very thirsty. She was also very pale and shaky. I am going to call the clinic in the morning - it is too long to wait until her next appointment. Thankfully she hasn't gotten Conner's fever ... Yet... Hopefully she won't! I Have taken her temperature 100 times today (seems like).
--- Conner just told me his throat hurts. Scott checked it and we are pretty sure he has strep. They are now at the Urgent Care. It will be a miracle if Katie doesn't get it! If she does get it, she could possibly end up in the hospital (if her levels drop). Please keep them in your prayers.
Yesterday was my 45th birthday. Conner started getting sick yesterday afternoon/evening. He has a high fever. At one point today it reached 103.7 (as the Tylenol wore off) he doesn't have a cough or runny nose and he has no complaints - just a fever. Very concerning - doublely concerning because of Katie. Katie woke up again this morning drenched in sweat and she was very thirsty. She was also very pale and shaky. I am going to call the clinic in the morning - it is too long to wait until her next appointment. Thankfully she hasn't gotten Conner's fever ... Yet... Hopefully she won't! I Have taken her temperature 100 times today (seems like).
--- Conner just told me his throat hurts. Scott checked it and we are pretty sure he has strep. They are now at the Urgent Care. It will be a miracle if Katie doesn't get it! If she does get it, she could possibly end up in the hospital (if her levels drop). Please keep them in your prayers.
Sunday, September 16, 2012
Day 312
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.
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.
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).
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