Katie's health has continued to improve - and we are glad! She still seems to have a runny nose and she sounds a bit congested. So, we have decided to continue to keep her sequestered for awhile - how long I don't know... But every time the doctors have told us she should be fine to go to school, church, vacations, etc... she has gotten sick. We just want to keep her home for a while longer.
I realized the other day, that Katie had been in the hospital 5 times, in just over a years time. That was more than we (or the doctors) had anticipated. We would like to keep it at 5 - no more hospital time! One of the hardest things about all of this is knowing how much she is missing. She misses playing with her friends, going to joy school, and church. I hate her having to miss out on all the fun and social interaction - but it is not worth risking her life over - it is just too bad it has to be this way. But it won't be forever, just for now.
"Knowing that the gospel is true is the essence of a testimony. Consistently being true to the gospel is the essence of conversion. We should know the gospel is true and be true to the gospel."
(David A. Bednar, Ensign, November 2012)
Sunday, January 27, 2013
Monday, January 21, 2013
Day 441
Last night when I was putting Katie to bed, she snuggled under the covers and said, "It is good to be home!" - Yes Katie, it is good to be home! We are all trying to recuperate. Katie still has a little bit of a cough and runny nose and she gets tired easily, but she is doing much better!
The final consensus by the doctors was that Katie had some type of secondary infection going on - even though they were never able to identify it - they said if it was just RSV, she would have gotten the fever within the first week of being sick - the fact that she got the fever later indicated a secondary infection. Whatever it was, Katie was really sick! As I said, I think she was more sick this time, than she was last month with the pneumonia. We were very fortunate that Katie had just finished her round of steroids, because that boosted her immune system way up, which gave her body something to fight with. It terrifies me to think about what might have happened if her counts had been down this time...we just feel really blessed!
Scott said maybe this will be the worst thing that happens to us in 2013, and we already got it out of the way... We are hopeful that the worst is behind us, and that we are moving on to better days! We are glad Katie is doing so much better! Thank you again for your prayers.
"I may lack the words to describe what occurs to the faithful in times of personal crisis. Let it be said, simply, that there is often a quiet awareness in the midst of chaos that the Lord is there and He is still in control."
(Dr. James Dobson, In the Arms of God).
The final consensus by the doctors was that Katie had some type of secondary infection going on - even though they were never able to identify it - they said if it was just RSV, she would have gotten the fever within the first week of being sick - the fact that she got the fever later indicated a secondary infection. Whatever it was, Katie was really sick! As I said, I think she was more sick this time, than she was last month with the pneumonia. We were very fortunate that Katie had just finished her round of steroids, because that boosted her immune system way up, which gave her body something to fight with. It terrifies me to think about what might have happened if her counts had been down this time...we just feel really blessed!
Scott said maybe this will be the worst thing that happens to us in 2013, and we already got it out of the way... We are hopeful that the worst is behind us, and that we are moving on to better days! We are glad Katie is doing so much better! Thank you again for your prayers.
"I may lack the words to describe what occurs to the faithful in times of personal crisis. Let it be said, simply, that there is often a quiet awareness in the midst of chaos that the Lord is there and He is still in control."
(Dr. James Dobson, In the Arms of God).
Saturday, January 19, 2013
Friday, January 18, 2013
Day 438
Katie hasn't had another fever. One doctor came in this morning and said they would discharge her today. But the the main doctor came in and he seemed to have some concerns. Katie's heart rate is up again today and she is still wheezing. He told the nurse he wanted to wait and see how she does, and he said he would come back and check on her later. I am pretty sure though that we will be going home later today - as long as she still has no fever. We will be glad to get home and be together as a family again. Children under the age of 12 are currently not allowed in the hospital, so Conner has not been able to come and visit - that has made it hard on all of us. It will be nice to be home.
Thursday, January 17, 2013
Day 437
Katie's last fever was at 2 pm yesterday. So she is getting better! She still has "junk" in her lungs and a really bad cough, and her heart rate is still a little high. The doctor who came in this morning said Katie's cough could last for a couple more weeks, but they would probably let her go home when she has 24 hours without a fever. - Katie's main doctor just came in and said they will stop the antibiotics and see if she can go 24 hours without a fever, and then we could go home. Hopefully tomorrow! We are glad Katie is feeling a little better! Thank you for all the prayers.
Wednesday, January 16, 2013
Day 436
It has been a long night, long day, and long night. Katie has been fighting her fever day and night. Her fever got up to 104.7 yesterday. Even on Tylenol her fever stayed up, so they gave her Motrin, even though she isnt suppoed to have Motrin. The Motrin helped, but she can only have it once or twic a day, otherwise it will lower her platelet count too much.
The doctors aren't sure if this is still a bad case of RSV or if it has turned into pneumonia. Yesterdays x-ray was inconclusive. Katie will probably get another x-ray today. But basically, the doctors are saying, "Time will tell." Katie is on an antibiotic just in case it is pneumonia. Today the doctor asked me how this compares to last month, when Katie was in the hospital, and I told him this is worse - she is worse this time.
Katie is having trouble breathing. She got an albuterol treatment yesterday and another this morning. She also has oxygen. She has had a hard time of it. Thank you for your prayers! We are glad Scott's parents live nearby to help with Conner and Nathan. Please keep praying for our Katie girl!
The doctors aren't sure if this is still a bad case of RSV or if it has turned into pneumonia. Yesterdays x-ray was inconclusive. Katie will probably get another x-ray today. But basically, the doctors are saying, "Time will tell." Katie is on an antibiotic just in case it is pneumonia. Today the doctor asked me how this compares to last month, when Katie was in the hospital, and I told him this is worse - she is worse this time.
Katie is having trouble breathing. She got an albuterol treatment yesterday and another this morning. She also has oxygen. She has had a hard time of it. Thank you for your prayers! We are glad Scott's parents live nearby to help with Conner and Nathan. Please keep praying for our Katie girl!
Tuesday, January 15, 2013
Day 435
Katie is back in the hospital. We took her to the clinic yesterday morning because her cough and breathing were so bad. They took an x-ray and we were told it wasn't pneumonia, just a bad case of RSV. We were told not to worry unless she developed a fever - and then they sent us home. Well...last night she developed a fever. We spent the night in the ER. Katie's heart rate is very elevated and her breathing laborious.
They brought us to a room around 5 am. Katie and I fell asleep. When I woke up a couple of hours later, I immediately asked the nurse to check Katie's temperature. Her temp was 104.5! I had the nurses hopping, "I need ice packs, I need a wash cloth - she needs Tylenol and a drink!" The doctors seem at a loss as to what to do for her. Katie will be getting another x-ray this morning. We could use prayers! Please pass on the word... We are glad for our family and friends.
They brought us to a room around 5 am. Katie and I fell asleep. When I woke up a couple of hours later, I immediately asked the nurse to check Katie's temperature. Her temp was 104.5! I had the nurses hopping, "I need ice packs, I need a wash cloth - she needs Tylenol and a drink!" The doctors seem at a loss as to what to do for her. Katie will be getting another x-ray this morning. We could use prayers! Please pass on the word... We are glad for our family and friends.
Sunday, January 13, 2013
Day 433
We have reached another milestone. On January 13, 2014, exactly one year from today, Katie will be done with her treatments! (Katie will get her last chemo treatment on January 12th). Yay! Just one more year to go! We have come a long way. Another year still seems long and daunting, but reaching this point once sounded far away and daunting. We made it here, one day at a time...and we will get there, one day at a time.
After next January, Katie will still have to go in monthly for blood draws, but no more chemo. We have been told some parents ask for "just one more treatment...just in case, just to be sure." I understand that request and that feeling. I don't know if anyone will remember my posting last year about Todd White, a man in Utah, battling his 2nd battle with colon cancer... But I was recently told he completed his chemo treatments and that his wife expressed how hard that is. (Chemo is hard, but ending treatments is also hard in another way). I was told she said, "At least when Todd was getting the chemo we were doing something...now all we can do is wait and see." Yes...that wait and see period...where you just wait and see if the cancer comes back.
As I have posted before, Katie will get regular cancer check-ups until she is 18, checking to see if her cancer comes back. I have been told the greatest chance of it reoccurring will be during the first 2 -3 years after her treatments are complete. That is the wait and see period. Katie's friend, Orie, had his cancer come back - it was found during his check-up, 6 months after his treatment was complete. So, while I am eager for Katie's treatments to end, I know my worry won't end. BUT, it will be great to end the chemo and other meds. It will be a time for celebration. I think we will have a cancer free/chemo free party! And we will plan something with Make-A-Wish. We have saved our "wish" until Katie got better and older - so she would remember it. She has been through so much and she deserves a special wish! We are looking forward and are hopeful that there are better days ahead.
Yesterday and today Katie has said, "Today is a hard day!" They have been hard days for her. She is doing okay, but she doesn't feel well and her cough is really bad, she has a crackling sound each time she exhales, and her breathing is a little laborious. We are worried about it turning into pneumonia. Please pray for her!
We finally got a chance to put away our Christmas decorations yesterday and Katie said, "Christmas was really fun for me. I am happy I will get to have another one!" I am glad she will get to have another one too!
"There is no fog so dense, no night so dark, no gale so strong, no mariner so lost but what the lighthouse of the Lord can rescue. It beckons through the storms of life. It calls, 'This way to safety. This way to home.' It sends forth signals of light easily seen and never failing. If followed, those signals will guide you back to your heavenly home." Thomas S. Monson, "Believe, Obey, and Endure", Ensign, November 2012
After next January, Katie will still have to go in monthly for blood draws, but no more chemo. We have been told some parents ask for "just one more treatment...just in case, just to be sure." I understand that request and that feeling. I don't know if anyone will remember my posting last year about Todd White, a man in Utah, battling his 2nd battle with colon cancer... But I was recently told he completed his chemo treatments and that his wife expressed how hard that is. (Chemo is hard, but ending treatments is also hard in another way). I was told she said, "At least when Todd was getting the chemo we were doing something...now all we can do is wait and see." Yes...that wait and see period...where you just wait and see if the cancer comes back.
As I have posted before, Katie will get regular cancer check-ups until she is 18, checking to see if her cancer comes back. I have been told the greatest chance of it reoccurring will be during the first 2 -3 years after her treatments are complete. That is the wait and see period. Katie's friend, Orie, had his cancer come back - it was found during his check-up, 6 months after his treatment was complete. So, while I am eager for Katie's treatments to end, I know my worry won't end. BUT, it will be great to end the chemo and other meds. It will be a time for celebration. I think we will have a cancer free/chemo free party! And we will plan something with Make-A-Wish. We have saved our "wish" until Katie got better and older - so she would remember it. She has been through so much and she deserves a special wish! We are looking forward and are hopeful that there are better days ahead.
Yesterday and today Katie has said, "Today is a hard day!" They have been hard days for her. She is doing okay, but she doesn't feel well and her cough is really bad, she has a crackling sound each time she exhales, and her breathing is a little laborious. We are worried about it turning into pneumonia. Please pray for her!
We finally got a chance to put away our Christmas decorations yesterday and Katie said, "Christmas was really fun for me. I am happy I will get to have another one!" I am glad she will get to have another one too!
"There is no fog so dense, no night so dark, no gale so strong, no mariner so lost but what the lighthouse of the Lord can rescue. It beckons through the storms of life. It calls, 'This way to safety. This way to home.' It sends forth signals of light easily seen and never failing. If followed, those signals will guide you back to your heavenly home." Thomas S. Monson, "Believe, Obey, and Endure", Ensign, November 2012
Friday, January 11, 2013
Day 430
We were told the IGG infusion Katie got yesterday would make her feel sick... I said, "She already feels sick!" The nurse said, "Yes, well, this will make her feel even more sick (for possibly up to 2 weeks) with flu like symptoms - headache, nausea, body aches." Plus Katie is on her round of steroids right now... So, let the "fun" begin! Plus she got the heavier dose of chemo this time. Our poor sweet baby girl!...
Katie is a trooper though! Although, yesterday almost did her positive attitude in! She was NOT happy about going to the doctor, 2 days in a row, for pokes and IV's! (And the nurse had to poke her twice, because the first vein blew out). Katie cried the entire way to the hospital, she cried in the waiting room, she cried (and screamed) while getting her IV put in and every time they put a new medication in the IV. And she was crying when we left (because it hurts when they take out the IV). However, soon after getting into the car, Katie flashed me two of her sweet sweet smiles, before drifting off to sleep. She is sweet and she is strong!
Katie has been through so much. These past few months have been especially rough. In October she had that crazy bought with the Hand, Foot, Mouth virus for a month - which was terrible, and landed her in the hospital for a couple of days and stopped her chemo for two weeks. Then last month she got a Rhino virus which turned into pneumonia - which put her in the hospital for a week, and on antibiotics for another week. She got a yeast infection from all of those antibiotics, and is currently on an anti-fungal medication. And now she has RSV - another virus. Katie is doing okay, but she is weak and...sick. This all started shortly after we entered "Maintenance" - when they told us this would be an "easier" time for Katie.... But, it didn't work out that way. It has been a struggle. However, we are hopeful that the IGG infusion she got yesterday will help. Dr. Dana said it would also help if we moved to a private island where there were no viruses...but we don't have any hopes of that happening! =) So, we will just hope this infusion helps her.
The IGG infusion Katie got yesterday is derived from humans and it is very expensive. We were told her infusion yesterday cost $10,000. So, today we are glad for insurance!! We were also told Katie will probably need more of these infusions - which makes us even more glad we have insurance! Please keep Katie in your prayers.
I think I posted this quote by President Monson once before, but it is worth repeating. "So much in life depends on our attitude. The way we choose to see things and respond to others makes all the difference. To do the best we can and then to choose to be happy about our circumstances, whatever they may be, can bring peace and contentment... We can't direct the wind, but we can adjust our sails. For maximum happiness, peace, and contentment, may we choose a positive attitude." (Living the Abundant Life, Ensign, Jan 2012).
Katie is a trooper though! Although, yesterday almost did her positive attitude in! She was NOT happy about going to the doctor, 2 days in a row, for pokes and IV's! (And the nurse had to poke her twice, because the first vein blew out). Katie cried the entire way to the hospital, she cried in the waiting room, she cried (and screamed) while getting her IV put in and every time they put a new medication in the IV. And she was crying when we left (because it hurts when they take out the IV). However, soon after getting into the car, Katie flashed me two of her sweet sweet smiles, before drifting off to sleep. She is sweet and she is strong!
Katie has been through so much. These past few months have been especially rough. In October she had that crazy bought with the Hand, Foot, Mouth virus for a month - which was terrible, and landed her in the hospital for a couple of days and stopped her chemo for two weeks. Then last month she got a Rhino virus which turned into pneumonia - which put her in the hospital for a week, and on antibiotics for another week. She got a yeast infection from all of those antibiotics, and is currently on an anti-fungal medication. And now she has RSV - another virus. Katie is doing okay, but she is weak and...sick. This all started shortly after we entered "Maintenance" - when they told us this would be an "easier" time for Katie.... But, it didn't work out that way. It has been a struggle. However, we are hopeful that the IGG infusion she got yesterday will help. Dr. Dana said it would also help if we moved to a private island where there were no viruses...but we don't have any hopes of that happening! =) So, we will just hope this infusion helps her.
The IGG infusion Katie got yesterday is derived from humans and it is very expensive. We were told her infusion yesterday cost $10,000. So, today we are glad for insurance!! We were also told Katie will probably need more of these infusions - which makes us even more glad we have insurance! Please keep Katie in your prayers.
I think I posted this quote by President Monson once before, but it is worth repeating. "So much in life depends on our attitude. The way we choose to see things and respond to others makes all the difference. To do the best we can and then to choose to be happy about our circumstances, whatever they may be, can bring peace and contentment... We can't direct the wind, but we can adjust our sails. For maximum happiness, peace, and contentment, may we choose a positive attitude." (Living the Abundant Life, Ensign, Jan 2012).
Thursday, January 10, 2013
Day 429
Things didn't go quite as expected yesterday....We took Katie to the clinic for her spinal tap and IV chemo. I expressed my concern about her going under anesthesia when she has such a bad cough. We were told the need for the chemo outweighed the concern. Katie's numbers came back fine, so we proceeded. We were bumped to the last patient though (even though we were first) because Katie was sick and they did not want to "contaminate" the procedure room. - Which made for a very long fasting day for Katie!
While Katie was under, they did a nose swab to test for viruses. When we arrived home from the hospital, we got a call that Katie's swab test had come back positive. She has RSV (virus). They also tested her immuno gobulin level. The normal IGG level is between 600 - 1000, Katie's is 375, which might explain why she keeps getting so many viruses.
Later in the day, Katie developed a fever of 102, and she got a lot more sick than she has been. We are headed back to the clinic this morning. They want to give her a 5 hour immuno gobulin infusion. We are sorry she is so sick, and sorry she has to get another "poke," but we are glad there are medications available to help her! - We are off to the clinic!
While Katie was under, they did a nose swab to test for viruses. When we arrived home from the hospital, we got a call that Katie's swab test had come back positive. She has RSV (virus). They also tested her immuno gobulin level. The normal IGG level is between 600 - 1000, Katie's is 375, which might explain why she keeps getting so many viruses.
Later in the day, Katie developed a fever of 102, and she got a lot more sick than she has been. We are headed back to the clinic this morning. They want to give her a 5 hour immuno gobulin infusion. We are sorry she is so sick, and sorry she has to get another "poke," but we are glad there are medications available to help her! - We are off to the clinic!
Sunday, January 6, 2013
Day 425
We have been out of town since December 25th (we just got home last night, January 5th). Scott worked on Christmas Eve, so we spent Christmas Eve evening together at the fire station. Scott got home Christmas morning around 7:30 a.m. Unfortunately, Conner got a high fever Christmas Eve night - and I was up most of the night caring for him. I had us all packed for our trip and thought, "Well, here we go again, another trip canceled." I didn't see how we could possibly go - with Conner sick and with the risk of Katie getting sick and needing to go to the hospital (and concern about getting others sick). However, when Scott got home Christmas morning he said we were going. We knew we could come back from Heber to the hospital if needed - or drive to Albuquerque's Children's hospital when we were in New Mexico.
So, on Christmas morning, when Scott got home, we opened our presents and then drove to Scott's parent's cabin in Heber. We spent Christmas day and the next day with his family, and then we drove on to New Mexico from there. Conner's fever continued Christmas day, but then it broke. However, his cough and stuffed-up nose lingered on. When we got to New Mexico, Scott took Conner to an urgent care (and explained we had a 3 year old with Leukemia and a 86 year old "grandma" and we didn't want to take any risks - we needed an antibiotic). The doctor declined us! That was so frustrating - to pay the money for urgent care and then have the doctor refuse to give any medication! Conner was sick our entire trip (he is still sick). Thankfully, Katie never got a fever! Although, she did come down with a cough and runny nose on the drive home yesterday. She has a very bad cough today. (My mom, my brother, and my nephews are sick, and Scott is tryign to fight it - and I am left wondering if everyone else could have been "spared" if the doctor had just given us an antibiotic...maybe...maybe not).
We had a very nice trip though. We were able to spend a lot of time with my mom and we were very thankful to have that opportunity. (I hope she is still thankful, even though we made her sick!) Katie is due to go in on Wednesday for IV chemo and a spinal tap of chemo. I am not sure what will happen due to her cough. I guess we will find out on Wednesday. It has only been 2 months (not the typical 3 months) since her last spinal, but they are trying to put us back on schedule (Katie was a month behind because of the delay with her chemo due to the "Chicken Pox" Hand Foot Mouth illness in October). It has been a rough few months (to say the least). At our last visit (in the hospital) Dr. Dana said, "You guys just can't get a break can you?...This was supposed to be the "easy" time, but nothing has turned out to be easy for Katie...Hopefully, now it will get easier!"
That is our hope for 2013 - an easier year for Katie! Through it all though, we know we have been remarkably blessed! So many times, things could have been so much worse, but things always turned around and Katie has done very well. We acknowledge those blessings and we are glad for them!
My nephew Jeff sent us a really nice letter just before Christmas. In that letter, he quoted from a talk by President Monson, entitled "Consider the Blessings." President Monson spoke of looking back and recognizing all the blessings large or small we have been blessed with. President Monson went on to say, "I would recommend this same exercise to you - namely, that you take an inventory of your life and look specifically for the blessings, large and small, you have received....My brothers and sisters, the Lord is in all of our lives. He loves us. He wants to bless us. He wants us to seek His help. As he guides us and directs us and as He hears and answers our prayers, we will find the happiness here and now that He desires for us. May we be aware of His blessings in our lives" (Ensign, Nov. 2012).
So, on Christmas morning, when Scott got home, we opened our presents and then drove to Scott's parent's cabin in Heber. We spent Christmas day and the next day with his family, and then we drove on to New Mexico from there. Conner's fever continued Christmas day, but then it broke. However, his cough and stuffed-up nose lingered on. When we got to New Mexico, Scott took Conner to an urgent care (and explained we had a 3 year old with Leukemia and a 86 year old "grandma" and we didn't want to take any risks - we needed an antibiotic). The doctor declined us! That was so frustrating - to pay the money for urgent care and then have the doctor refuse to give any medication! Conner was sick our entire trip (he is still sick). Thankfully, Katie never got a fever! Although, she did come down with a cough and runny nose on the drive home yesterday. She has a very bad cough today. (My mom, my brother, and my nephews are sick, and Scott is tryign to fight it - and I am left wondering if everyone else could have been "spared" if the doctor had just given us an antibiotic...maybe...maybe not).
We had a very nice trip though. We were able to spend a lot of time with my mom and we were very thankful to have that opportunity. (I hope she is still thankful, even though we made her sick!) Katie is due to go in on Wednesday for IV chemo and a spinal tap of chemo. I am not sure what will happen due to her cough. I guess we will find out on Wednesday. It has only been 2 months (not the typical 3 months) since her last spinal, but they are trying to put us back on schedule (Katie was a month behind because of the delay with her chemo due to the "Chicken Pox" Hand Foot Mouth illness in October). It has been a rough few months (to say the least). At our last visit (in the hospital) Dr. Dana said, "You guys just can't get a break can you?...This was supposed to be the "easy" time, but nothing has turned out to be easy for Katie...Hopefully, now it will get easier!"
That is our hope for 2013 - an easier year for Katie! Through it all though, we know we have been remarkably blessed! So many times, things could have been so much worse, but things always turned around and Katie has done very well. We acknowledge those blessings and we are glad for them!
My nephew Jeff sent us a really nice letter just before Christmas. In that letter, he quoted from a talk by President Monson, entitled "Consider the Blessings." President Monson spoke of looking back and recognizing all the blessings large or small we have been blessed with. President Monson went on to say, "I would recommend this same exercise to you - namely, that you take an inventory of your life and look specifically for the blessings, large and small, you have received....My brothers and sisters, the Lord is in all of our lives. He loves us. He wants to bless us. He wants us to seek His help. As he guides us and directs us and as He hears and answers our prayers, we will find the happiness here and now that He desires for us. May we be aware of His blessings in our lives" (Ensign, Nov. 2012).
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