The little snow bunny turns 17 months old! Today is frigid and snowy - and even Lil Man knows how much his Grammy loves the snow. With a break in the snow showers, I bundled him up in his snow suit, mittens and coat and off we went into the wild blue yonder. We decided to celebrate his birthday with his first sledding trip down the big hill. With Lil Man's great grandparents as onlookers, I sat him on my lap, crossed my leg and away we went on the saucer sled. His big brown eyes grew even bigger as the snow licked his face on the ride down the hill. Great Grandpa and Grandma even took their turns down the icy slope. This same hill had welcomed my winter trips as a child and then the sledding parties of our own daughters. Another generation made his maiden voyage today on his 17 month birthday! In the words of Lil Man, "Brrrrrr!"
He loves snow - he calls it "balls", I interpret that as his shortened version of snowballs! Whenever it snows, I gather a plastic bowl of snow for him and bring it inside. We form little "balls" and make miniature snowmen. Then Lil Man takes a few frigid bites of snow and his tongue tingles with cold. And the snow slowly melts before our eyes.
I told Lil Man that we are true Olympians now - trained and ready to join the US bobsled team for the upcoming Vancouver Olympics! I am certain he would win a gold medal because everything he does is so perfect in the opinion of his Grammy!
Happy 17 month Birthday, Lil Man! Grammy loves you.
Tuesday, February 9, 2010
Thursday, February 4, 2010
An Update & Request for Prayer: February 4, 2010
The stomach virus struck with a vengeance this week. Four family members, including yours truly, have fallen victims. Please pray as I have lost 8 pounds in two days and have not been able to eat or drink since Tuesday.
We have debated if the benefits of being admitted to the hospital for IV hydration would outweigh the risks of exposure to other hospital germs. I am walking a tightrope right now, trying to regain strength and not become severely dehydrated as I battle the bug while still at home. I had some UTI symptoms overnight, so I am waiting on the results of a urine culture.
We have debated if the benefits of being admitted to the hospital for IV hydration would outweigh the risks of exposure to other hospital germs. I am walking a tightrope right now, trying to regain strength and not become severely dehydrated as I battle the bug while still at home. I had some UTI symptoms overnight, so I am waiting on the results of a urine culture.
Monday, February 1, 2010
An Update & Request for Prayer: February 1, 2010
I have always pondered how much pain the human body can endure and I think I might have reached my limit overnight. I was up crying all night. In addition to the "normal" pain from my enlarged spleen/herniated discs/and leukemia packed vertebrae and hips, the lower right leg and foot pain (nerve damaged from herniated disc) peaked.
I have foot drop (dorsiflexion) from the nerve damage from the herniated discs from the steroid use for the leukemia. Isn't it amazing the downward spiral a drug or condition can throw the human body into?
The doctor told me last night week that I was losing one group of muscles in my lower leg. On Sunday morning, my foot locked in the "dropped" position when I awoke -toe pointed out - and Kevin had to literally snap it back into place. Overnight that continued and the foot began twisting sideways in contorted cramps.
Today, my doctor strongly recommended that I make my decision on what pain medicine I am going to begin. It is a battle to select one with my past history of anaphylaxis and complications with NSAIDs and codeine and morphine rashes. She recommended Fentynyl or Oxycontin.
I will have a CBC tomorrow to see if I require Neupogen. It is the first full week I have gone without an injection while on the Vitamin B3 - I think it will be telling if the B3 has improved the neutropenia.
The fevers continue. We are rotating some drugs around for the (assumed) sinus infection. If temperatures do not stop in a few days, I will have to go to Indy to the ENT for a scope to obtain sterile cultures.
I awoke with an infection in my right eye - the doctor prescribed Tobramycin eye drops.
An MRI on my lower leg/foot, a check of my magnesium levels, and a possible pain management consultation are all possibilities on the ever-growing Medical To Do list.
Last week, my unrelenting research uncovered a new drug being studied in very early clinical trials that might benefit me. ISF35 is an immunotherapy drug - thus, it shouldn't induce more immune suppression for me. Cells are removed from my own body, manipulated in the laboratory and reinfused into my body in an attempt to prompt my immune system to attack the leukemia.
Two end-stage patients have received minimal residual disease negative (MRD-) remissions (deepest remission with this type of leukemia) with this drug. Unfortunately, the two current trials are in California and Texas - both requiring a great deal of cumbersome travel. Today I heard from a Memgen executive (pharmaceutical company where ISF35 is produced). He told me that more funding has been received for ISF35 trials and more ISF35 trials will open -perhaps one in Indianapolis in late spring. God knows best what I need.
Thank you for your prayers. I don't know if I can make it through another night like last night on my own strength - but I can with God's strength and comfort!
I have foot drop (dorsiflexion) from the nerve damage from the herniated discs from the steroid use for the leukemia. Isn't it amazing the downward spiral a drug or condition can throw the human body into?
The doctor told me last night week that I was losing one group of muscles in my lower leg. On Sunday morning, my foot locked in the "dropped" position when I awoke -toe pointed out - and Kevin had to literally snap it back into place. Overnight that continued and the foot began twisting sideways in contorted cramps.
Today, my doctor strongly recommended that I make my decision on what pain medicine I am going to begin. It is a battle to select one with my past history of anaphylaxis and complications with NSAIDs and codeine and morphine rashes. She recommended Fentynyl or Oxycontin.
I will have a CBC tomorrow to see if I require Neupogen. It is the first full week I have gone without an injection while on the Vitamin B3 - I think it will be telling if the B3 has improved the neutropenia.
The fevers continue. We are rotating some drugs around for the (assumed) sinus infection. If temperatures do not stop in a few days, I will have to go to Indy to the ENT for a scope to obtain sterile cultures.
I awoke with an infection in my right eye - the doctor prescribed Tobramycin eye drops.
An MRI on my lower leg/foot, a check of my magnesium levels, and a possible pain management consultation are all possibilities on the ever-growing Medical To Do list.
Last week, my unrelenting research uncovered a new drug being studied in very early clinical trials that might benefit me. ISF35 is an immunotherapy drug - thus, it shouldn't induce more immune suppression for me. Cells are removed from my own body, manipulated in the laboratory and reinfused into my body in an attempt to prompt my immune system to attack the leukemia.
Two end-stage patients have received minimal residual disease negative (MRD-) remissions (deepest remission with this type of leukemia) with this drug. Unfortunately, the two current trials are in California and Texas - both requiring a great deal of cumbersome travel. Today I heard from a Memgen executive (pharmaceutical company where ISF35 is produced). He told me that more funding has been received for ISF35 trials and more ISF35 trials will open -perhaps one in Indianapolis in late spring. God knows best what I need.
Thank you for your prayers. I don't know if I can make it through another night like last night on my own strength - but I can with God's strength and comfort!
Friday, January 29, 2010
"My Best Days Are Ahead of Me!"
The new Danny Gokey song,"My Best Days are Ahead of Me" is full of encouragement and reminders for us to keep looking for better tomorrows. Gokey, a former American Idol, had lost his young wife shortly before the last season of American Idol. His faith walk was obvious throughout the season of Idol and he always received my votes. I hope you will enjoy this song as much as I have. It is a good reminder for all of us and what a statement of faith: "Our best days are head of us!"
You Tube Link: http://www.youtube.com/watch?v=rMoS2tb4R7s
An Update & Request for Prayer: January 29, 2010
I have been away from the blog for too long. I am reminded when friends e-mail me to confirm I am not in the hospital (aka "the slammer") that it is time to update the blog. It has been a trying week or so. In the natural realm, I see my body crumbling, yet I continue to trust in Him to sustain me. I return over and over to Romans 4:
"God, who gives life to the dead and calls those things which do not exist as though they did; who, contrary to hope, in hope believed, so that he became the father of many nations, according to what was spoken, “So shall your descendants be.” And not being weak in faith, he did not consider his own body, already dead (since he was about a hundred years old), and the deadness of Sarah’s womb. He did not waver at the promise of God through unbelief, but was strengthened in faith, giving glory to God, and being fully convinced that what He had promised He was also able to perform. And therefore “it was accounted to him for righteousness.”
I need Him to give me (and my other leukemia cohorts) LIFE. We need the faith to call those things which do not exist (remission/cure) as though they did. I don't want to grow weak in faith or consider "my own body". We must not waiver at God's promises! And may He overcome our own doubts and fears so that we are strengthened in faith! I believe there are so many spiritual clues for us in this passage.
Yesterday, I spent over two hours at the doctor. I have had fevers off and on all week and we continue to be baffled. We restarted another antibiotic with the assumption it is the sinuses causing the fever. Although difficult to discern, the leukemia itself can cause fevers.
The doctor wanted a urine sample and it contained blood so she sent it onto the hospital laboratory for culturing. Gram negative rods (bacteria) grew out on culture, yet the count was more reflective of a contaminant.
I am having shortness of breath and the doctor said my iron levels are now dangerously low, in addition to a low hemoglobin (oxygen carrying blood component). The doctor said I need weekly IV iron infusions, however, "normal" people have serious reactions to iron and she believes it is too risky for me (with my drug reaction history) to try the IV iron infusions. My doctor wrote an appeal letter to the insurance to seek coverage on a prescription iron formula that might benefit me. My blood pressure was also low today.
I was just above the threshold of needing another Neupogen injection (Kevin gave me one on Wednesday). All CBC results were abnormal.
My doctor at the NIH e-mailed me with preliminary findings of their review of my MRI's. It appears that the marrow has been replaced by the leukemia and no normal marrow signals could be found in my vertebrae and hips. My estimation is that a great deal of my pain is coming from this marrow infiltration.
My spleen and lymph nodes have enlarged. My spleen tip is now back below my belly button (how is that for a medical term). I wasn't surprised about the spleen because I have not been able to sleep on my left side this week due to the spleen pain. It doesn't appear that the $160,000 worth of Rituxan treatments last summer gave me much "bang for my bucks"!
My toenail has been damaged from the nerve damage in my foot/leg/back. It had to be removed last night. I didn't want any more chemicals in my body, so I passed on the anesthetic. My daughter said, "Are you nuts, Mom?" That is quite possible .......
I have barely been able to keep going this week, so I initiated a discussion about Provigil or Ritalin to try to improve my strength. It has been used for fatigue in cancer patients (off-label). My doctor is going to do some research to see if either drug is one that I might be able to tolerate.
I have been reviewing a new treatment that is being studied in Phase 1 clinical trials. The agent is known as ISF35 - it is an immunotherapy treatment that will not further damage the immune system. Two end stage patients, like myself, achieved complete Minimal Residual Disease (negative) remissions. This is the deepest level of remission achievable by patients with my type of leukemia. Please pray that this agent will prove to be successful and will advance quickly through the clinical trial process. Currently, the drug is available only at the University of California San Diego and MD Anderson in Houston, Texas. I don't know that I could endure the travel required for the trials. I see glimmers of hope in this drug. May God offer wisdom to these researchers and allow this to be a possible treatment that could benefit me. It is being administered either via IV or as injections into the lymph nodes.
Which reminds me of a funny experience. Early into my leukemia journey, I researched a Canadian drug that was being studied in leukemia. It had to be injected into the lymph nodes in the groin - very, very s-l-o-w-l-y. Always the open minded guinea pig, eager to whip leukemia into the next universe, I decided to give this drug a try. We ordered it from Canada and my Mom was trained to administer the injections. Before the injections, an ice pack was to be placed on the groin to help numb the area. The needle had to be held in the lymph node and the medication dripped in over 7-10 minutes. My ice pack must have been TOO cold and I emerged with a dandy case of frost bite to the groin area. I went to the doctor and she diagnosed the frost bite and said that might be a medical first. Such is life as a human guinea pig..... I am pretty open to novel therapeutic options and perhaps God will open a door for me to this new ISF35 drug.
Thanks for your continued prayers!
"God, who gives life to the dead and calls those things which do not exist as though they did; who, contrary to hope, in hope believed, so that he became the father of many nations, according to what was spoken, “So shall your descendants be.” And not being weak in faith, he did not consider his own body, already dead (since he was about a hundred years old), and the deadness of Sarah’s womb. He did not waver at the promise of God through unbelief, but was strengthened in faith, giving glory to God, and being fully convinced that what He had promised He was also able to perform. And therefore “it was accounted to him for righteousness.”
I need Him to give me (and my other leukemia cohorts) LIFE. We need the faith to call those things which do not exist (remission/cure) as though they did. I don't want to grow weak in faith or consider "my own body". We must not waiver at God's promises! And may He overcome our own doubts and fears so that we are strengthened in faith! I believe there are so many spiritual clues for us in this passage.
Yesterday, I spent over two hours at the doctor. I have had fevers off and on all week and we continue to be baffled. We restarted another antibiotic with the assumption it is the sinuses causing the fever. Although difficult to discern, the leukemia itself can cause fevers.
The doctor wanted a urine sample and it contained blood so she sent it onto the hospital laboratory for culturing. Gram negative rods (bacteria) grew out on culture, yet the count was more reflective of a contaminant.
I am having shortness of breath and the doctor said my iron levels are now dangerously low, in addition to a low hemoglobin (oxygen carrying blood component). The doctor said I need weekly IV iron infusions, however, "normal" people have serious reactions to iron and she believes it is too risky for me (with my drug reaction history) to try the IV iron infusions. My doctor wrote an appeal letter to the insurance to seek coverage on a prescription iron formula that might benefit me. My blood pressure was also low today.
I was just above the threshold of needing another Neupogen injection (Kevin gave me one on Wednesday). All CBC results were abnormal.
My doctor at the NIH e-mailed me with preliminary findings of their review of my MRI's. It appears that the marrow has been replaced by the leukemia and no normal marrow signals could be found in my vertebrae and hips. My estimation is that a great deal of my pain is coming from this marrow infiltration.
My spleen and lymph nodes have enlarged. My spleen tip is now back below my belly button (how is that for a medical term). I wasn't surprised about the spleen because I have not been able to sleep on my left side this week due to the spleen pain. It doesn't appear that the $160,000 worth of Rituxan treatments last summer gave me much "bang for my bucks"!
My toenail has been damaged from the nerve damage in my foot/leg/back. It had to be removed last night. I didn't want any more chemicals in my body, so I passed on the anesthetic. My daughter said, "Are you nuts, Mom?" That is quite possible .......
I have barely been able to keep going this week, so I initiated a discussion about Provigil or Ritalin to try to improve my strength. It has been used for fatigue in cancer patients (off-label). My doctor is going to do some research to see if either drug is one that I might be able to tolerate.
I have been reviewing a new treatment that is being studied in Phase 1 clinical trials. The agent is known as ISF35 - it is an immunotherapy treatment that will not further damage the immune system. Two end stage patients, like myself, achieved complete Minimal Residual Disease (negative) remissions. This is the deepest level of remission achievable by patients with my type of leukemia. Please pray that this agent will prove to be successful and will advance quickly through the clinical trial process. Currently, the drug is available only at the University of California San Diego and MD Anderson in Houston, Texas. I don't know that I could endure the travel required for the trials. I see glimmers of hope in this drug. May God offer wisdom to these researchers and allow this to be a possible treatment that could benefit me. It is being administered either via IV or as injections into the lymph nodes.
Which reminds me of a funny experience. Early into my leukemia journey, I researched a Canadian drug that was being studied in leukemia. It had to be injected into the lymph nodes in the groin - very, very s-l-o-w-l-y. Always the open minded guinea pig, eager to whip leukemia into the next universe, I decided to give this drug a try. We ordered it from Canada and my Mom was trained to administer the injections. Before the injections, an ice pack was to be placed on the groin to help numb the area. The needle had to be held in the lymph node and the medication dripped in over 7-10 minutes. My ice pack must have been TOO cold and I emerged with a dandy case of frost bite to the groin area. I went to the doctor and she diagnosed the frost bite and said that might be a medical first. Such is life as a human guinea pig..... I am pretty open to novel therapeutic options and perhaps God will open a door for me to this new ISF35 drug.
Thanks for your continued prayers!
Saturday, January 16, 2010
What Do I Know of Holy?
Holy is defined as "devoted entirely to the Deity or the work of the Deity". The lyrics of this Addison Road's song, "What Do I Know of Holy" reverberate though my soul. The only means for us to "know holy" is to spend time in God's Word and in His presence. Only there can we learn how to hear His voice through the Holy Spirit or how and why we should fear God. Strolling through life, occupied by the trappings of this world, will never, ever allow us to "know holy". Only through His Word and the Holy Spirit operating in our lives are we able to know Him when He speaks.
The lyrics also impart to us the truth that so many people know something "about" God yet do not KNOW GOD. Head knowledge of a few Bible stories from childhood or a casual glimpse at the words of the Bible are not all that is required to be saved or to know Him. We only can know God in His entirety when we spend time worshipping Him, praying to Him, spending time in His presence, and studying His Word. Once we do these things, we catch "that glimpse of who He might be" and that is life transforming. When that occurs, our hearts become tender toward Him. We do not want to dishonor Him. We do not want to bring grief to Him.
I rejoice that He transformed my life and I have savored a taste of His holiness. He is the Lion of Judah, roaring with fire and fury against the one who turns from Him and He is the Lamb of God, tender and beautiful to His children.
I made You promises a thousand times
I tried to hear from Heaven
But I talked the whole time
I think I made You too small
I never feared You at all No
If You touched my face would I know You?
Looked into my eyes could I behold You?
(CHORUS)
What do I know of You
Who spoke me into motion?
Where have I even stood
But the shore along Your ocean?
Are You fire? Are You fury?
Are You sacred? Are You beautiful?
What do I know? What do I know of Holy?
I guess I thought that I had figured You out
I knew all the stories and I learned to talk about
How You were mighty to save
Those were only empty words on a page
Then I caught a glimpse of who You might be
The slightest hint of You brought me down to my knees
(CHORUS)
What do I know of You
Who spoke me into motion?
Where have I even stood
But the shore along Your ocean?
Are You fire? Are You fury?
Are You sacred? Are You beautiful?
What do I know? What do I know of Holy?
(CHORUS 2)
What do I know of Holy?
What do I know of wounds that will heal my shame?
And a God who gave life "its" name?
What do I know of Holy?
Of the One who the angels praise?
All creation knows Your name
On earth and heaven above
What do I know of this love?
(CHORUS)
What do I know of You
Who spoke me into motion?
Where have I even stood
But the shore along Your ocean?
Are You fire? Are You fury?
Are You sacred? Are You beautiful?
What do I know? What do I know of Holy?
What do I know of Holy?
What do I know of Holy?
LISTEN TO THIS SONG: http://www.youtube.com/watch?v=N6J5TzSE_18
The lyrics also impart to us the truth that so many people know something "about" God yet do not KNOW GOD. Head knowledge of a few Bible stories from childhood or a casual glimpse at the words of the Bible are not all that is required to be saved or to know Him. We only can know God in His entirety when we spend time worshipping Him, praying to Him, spending time in His presence, and studying His Word. Once we do these things, we catch "that glimpse of who He might be" and that is life transforming. When that occurs, our hearts become tender toward Him. We do not want to dishonor Him. We do not want to bring grief to Him.
I rejoice that He transformed my life and I have savored a taste of His holiness. He is the Lion of Judah, roaring with fire and fury against the one who turns from Him and He is the Lamb of God, tender and beautiful to His children.
I made You promises a thousand times
I tried to hear from Heaven
But I talked the whole time
I think I made You too small
I never feared You at all No
If You touched my face would I know You?
Looked into my eyes could I behold You?
(CHORUS)
What do I know of You
Who spoke me into motion?
Where have I even stood
But the shore along Your ocean?
Are You fire? Are You fury?
Are You sacred? Are You beautiful?
What do I know? What do I know of Holy?
I guess I thought that I had figured You out
I knew all the stories and I learned to talk about
How You were mighty to save
Those were only empty words on a page
Then I caught a glimpse of who You might be
The slightest hint of You brought me down to my knees
(CHORUS)
What do I know of You
Who spoke me into motion?
Where have I even stood
But the shore along Your ocean?
Are You fire? Are You fury?
Are You sacred? Are You beautiful?
What do I know? What do I know of Holy?
(CHORUS 2)
What do I know of Holy?
What do I know of wounds that will heal my shame?
And a God who gave life "its" name?
What do I know of Holy?
Of the One who the angels praise?
All creation knows Your name
On earth and heaven above
What do I know of this love?
(CHORUS)
What do I know of You
Who spoke me into motion?
Where have I even stood
But the shore along Your ocean?
Are You fire? Are You fury?
Are You sacred? Are You beautiful?
What do I know? What do I know of Holy?
What do I know of Holy?
What do I know of Holy?
LISTEN TO THIS SONG: http://www.youtube.com/watch?v=N6J5TzSE_18
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