Isaiah 58:8
Then your light will break forth like the dawn, and your healing will quickly appear; then your righteousness will go before you, and the glory of the Lord will be in your rear guard.
On Kaylee's birthday we found out that she is in remission. She could not have had better results from her bone marrow aspiration. They found 0% minimal residual disease in her marrow. So the induction phase of her treatment was successful. She also had 'favorable' genetics, which means that her chromosomes are responding very well to the treatment and are the type that will actually help her treatment from here on out be effective. So, she is still in the 'standard' (low) risk category and her prognosis is good. At least 85% cure rate.
So, you may be wondering, if she is in remission, why is she still getting treatment? Well, with Leukemia being a disease of the blood, it is pretty much everywhere in the body. So even though she had 0% MRD, she still has Leukemia cells in her body. Blasts are baby cells that are supposed to mature and eventually die. Everyone has them. In a Leukemia patient, there is an overproduction of blasts and for some reason they stop maturing and dying. From what I understand, the continuation of treatment is to kill remaining Leukemia cells in her body and to basically re-teach her blast cells how to mature and die. That is why her cytogenetics test was important. And why it was good that she was found favorable. I'm not 100% sure about that, but that is my understanding at this point. So, on to the treatment plan...
Kaylee is now in the Standard Consolidation phase. This phase lasts for 4 weeks and we will go to the clinic every Monday. She is now taking an oral chemotherapy drug called Mercaptopurine once a day. Ryan has to give her this medicine because it is not safe for me to handle any chemo drug. He even needs to wear gloves himself. But she is taking this in pill form that Ryan cuts into quarters, so she takes 6 of those in the evenings. Yesterday she got her single dose of Vincristine through her port. She will not need that again during this phase. She also got a spinal tap and a dose of Methotrexate into her spinal cavity. She will have spinal taps and Methotrexate the next two Mondays. Day 28 is the last day she has to take her oral chemo and the end of this phase (Sunday 11/25).
Next is her first Standard Interim Maintenance phase. This phase lasts 8 weeks and she only needs to visit the clinic every 10 days. At each clinic visit, she will get a dose of Vincristine and a dose of Methotrexate; both through her port. During her visit on day 31 (should be around 12/26) she will also get a spinal tap and a dose of Methotrexate in her spinal cavity. This phase will last through January 6th give or take a few days. Since it is every 10 days, some of those days fall on weekends, so the dates could be a bit off from here on out. I will come back and edit as needed.
Beginning January 7th is the Standard Delayed Intensification phase. This phase is also 8 weeks and I can see why it is named 'intense.' She will begin taking Dexamethasone (her steroid) again, but only in bursts on days 1-7 (1/7-1/13) and 15-21 (1/21-1/27). She will also go to the clinic on the first three Mondays for Vincristine, Doxorubicin (another chemotherapy) given through her port (January 7th, 14th, and 21st). On days 4, 5, or 6 (Jan. 10, 11, or 12) , she will get shots into her muscle of PEG Asparaginase (a chemotherapy she has gotten once before through her port when we were in the hospital at diagnosis). On day 29 (2/4) she will go to the clinic to get a dose of Cyclophosphamide (another chemotherapy) through her port. Also beginning on day 29 she will get Cytarabine (yet another chemotherapy) through her port as well. She will get this drug 4 days in a row on days 29-32 and then again on days 36-39. Since this is the case, they may send a nurse to our house on the days following day 29 so we don't have to run to the clinic 4 days in a row for two weeks (2/4-2/14). Also on day 29 she will begin taking a different oral chemotherapy called Thioquanine. She will continue these until the end of the 8 weeks (2/17). She will have spinal taps and intrathecal (spinal cavity) Methotrexate on days 1 and 29. After this intense phase she will repeat the previous phase, the Standard Interim phase for the next 8 weeks which will take us to March 31st.
On April 1st she will begin the Standard Maintenance phase. This phase should be the easiest. She will go to the clinic once every 4 weeks to get Vincristine into her port. She will take her Dexamethasone (steroids) twice a day only 5 days each month. She will take oral Methotrexate once per week. She will take the oral chemo that she is taking this month, Mercaptopurine, once a day every day. And finally she will get intrathecal Methotrexate and a spinal tap once every 12 weeks. This phase lasts 12 weeks and just keeps repeating for 2 years. The two year time period will not start until she begins her first Interim Maintenance phase on November 26th. So, she should be completely done with treatment (barring any complications or relapses) November 26th, 2014! But most of that time will be the Standard Maintenance phase, so it shouldn't be too bad. I think she will also routinely have bone marrow aspirations, but we don't know of any specific dates at this time.
She is supposed to also keep taking her Lovenox (blood thinner) for at least 6 weeks. That takes us up to the last week of November. They will do another ultrasound to see if the clot is gone and if it is she may get to stop taking the Lovenox. But it is also possible that she will take it intermittently throughout her treatment. It all depends. But this is the plan...
Jeremiah 17:14
Heal me, Lord, and I will be healed; save me and I will be saved, for YOU are the one I praise.
Malachi 4:2
But for you who revere my name, the sun of righteousness will rise with healing in its rays. And you will go out and frolic like well fed calves.
We are still going strong, trusting God's will and faithfulness; trying to use this situation to bring Him glory; excited about the work He is doing in all of us through this trial!
Tuesday, October 30, 2012
Sunday, October 21, 2012
Always Watching Over Us
I had a rough mental/emotional night last night. As we were getting ready yesterday evening to take Kaylee out to dinner, she was just standing in the family room and her legs gave out and she fell down on her back. She got really scared and was having trouble breathing. I got her calmed down, but I also noticed that the swelling on her arm was as bad as it was this past Tuesday. So, with the weak legs and increased swelling, I had Ryan put a call in to Riley. They instructed us just to watch her and have her move around more during the day...that the shots of blood thinners she's getting can make her weak if she doesn't move around a lot. They also said to watch her arm for increased swelling, discoloration, and heat. Kaylee really wanted to get out of the house, so we took her out to dinner. The whole situation was very frustrating to me and that night as we were going to sleep I kept asking why? Why is Kaylee having to deal with this? She is a really great kid who has a great way with others. She is so good at making people smile and I miss her personality and energy that she had before her diagnosis. I worried about her childhood being taken away from her...I was upset because she was supposed to have a week without any medication and now she's having to get shots twice a day...it was just a rough night of asking why. I never doubted that God is in control of this situation or that He will help us through this...just why?
If there had ever been any doubt in my mind that God listens and cares about our pains, fears and doubts that was completely erased this morning. I really like watching In Touch with Dr. Charles Stanley. I got up late, so I didn't catch this morning's whole episode, but I caught enough. His topic today was "Wisdom for Life's Trials" and I'm going to be quoting a lot of what he said, so here is the link to give him the credit: http://www.intouch.org/broadcast/this-week-on-tv/utm_source/itm/utm_medium/web/utm_campaign/home_top_slider
I immediately got the answer to why: 2 Corinthians 1:3-4
3 Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, 4 who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.
Amazing!
Dr. Stanley also pointed out several sources of the trials that we go through. They can be a result of poor decisions we have made, some can be caused by others, and sometimes painful things happen just because we live in a fallen world. He goes on to explain that ever since creation was corrupted by sin, sorrow has been one of the many consequences. And of course, some trials are brought on by the devil to make us question our faith. And sometimes the trials are allowed or brought on by God as a result of decisions we've made that were out of His will, or because we are already obedient and God does not want us to be stagnant in our belief. He always wants us to grow in our faith. However, regardless of the source of our pain and suffering, God ALWAYS promises that good will come of it. "As children of a sovereign God, we are never victims of our circumstances; our heavenly Father is in absolute control of everything that concerns us. With this in mind, trials should no longer be a source of anxiety or frustration for us because we understand they are His way of accomplishing His will in our lives."
Here are the other great points from his lecture:
"Understanding God's Purpose"
If there had ever been any doubt in my mind that God listens and cares about our pains, fears and doubts that was completely erased this morning. I really like watching In Touch with Dr. Charles Stanley. I got up late, so I didn't catch this morning's whole episode, but I caught enough. His topic today was "Wisdom for Life's Trials" and I'm going to be quoting a lot of what he said, so here is the link to give him the credit: http://www.intouch.org/broadcast/this-week-on-tv/utm_source/itm/utm_medium/web/utm_campaign/home_top_slider
I immediately got the answer to why: 2 Corinthians 1:3-4
3 Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, 4 who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.
Amazing!
Dr. Stanley also pointed out several sources of the trials that we go through. They can be a result of poor decisions we have made, some can be caused by others, and sometimes painful things happen just because we live in a fallen world. He goes on to explain that ever since creation was corrupted by sin, sorrow has been one of the many consequences. And of course, some trials are brought on by the devil to make us question our faith. And sometimes the trials are allowed or brought on by God as a result of decisions we've made that were out of His will, or because we are already obedient and God does not want us to be stagnant in our belief. He always wants us to grow in our faith. However, regardless of the source of our pain and suffering, God ALWAYS promises that good will come of it. "As children of a sovereign God, we are never victims of our circumstances; our heavenly Father is in absolute control of everything that concerns us. With this in mind, trials should no longer be a source of anxiety or frustration for us because we understand they are His way of accomplishing His will in our lives."
Here are the other great points from his lecture:
"Understanding God's Purpose"
- To test our faith
- To test our devotion to Christ
- To purify us (Sometimes in stressful times our ugly sides can come out. This can be a time to realize these flaws and ask God to help us correct them)
- To demonstrate His love
- To produce a Christ-like spirit in us
- To equip us (to help others)
- God controls their length and intensity
- The Father has specific purposes for everything we experience
- The Lord designed each challenge to meet a specific need in our lives
- God will cause our trials to produce good, positive results in us if we respond in obedience
- Through trials, God strengthens our faith
- Difficulties are our opportunities to demonstrate perserverance under pressure
- Through challenges, God develops Christ-like character within us
- The hardships we face help us measure our spiritual walk with God
- The Father will be with us through every situation to accomplish His good
- God will always help us overcome our circumstances if we trust Him
Hurt and pain are inevitable while we are here on this earth, but we can always choose how we respond to them. We can blame others, turn to drugs and alcohol for relief, and throw our hands up in frustration. Or we can respond in the right way and view our trials from God’s perspective. This helps us realize our difficulties are opportunities for spiritual growth. We know that life will not always be easy, but because we have a personal relationship with Jesus Christ, He will see us through.
Thank you Lord!
Saturday, October 13, 2012
Still Going Strong
Philippians 4:13
I can do everything through Him who gives me strength.
Isaiah 40:31
but those whose hope is in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.
Psalm 46: 1
God is our refuge and strength, an ever-present help in trouble.
Psalm 28: 7-8
The Lord is my strength and my shield; my heart trusts in Him and He helps me. My heart leaps for joy and I with my song I praise Him. The Lord is the strength of His people, a fortress of salvation for His annointed one.
Isaiah 12:2
Surely God is my salvation; I will trust and not be afraid. The Lord, the Lord Himself, is my strength and my defense; He has become my salvation.
I just wanted to give a little update. We are almost through the intense induction phase of Kaylee's leukemia treatment. She has been doing extremely well. She has had minimal side effects from the chemo. Here are the side effects she has experienced: swelling in her face and abdomen from the steroids, a few mouth sores, extreme hunger, low energy, petechiae (pinpoint bruising on her skin), high blood pressure, and she has just begun losing her hair over the last few days. She is very self-conscious about her round face and belly. She was feeling pretty good one day last week and I asked her if I could take a picture of her so people could see she was doing well. She said no. She doesn't want people to see how different she looks. I have reassured her that her appearance is temporary. She gets to stop taking her steroids this coming Thursday. She will shrink back down as quickly as she got bigger.
Her blood counts the last couple of weeks have been very good. At our clinic visit yesterday, the doctor said she was pretty confident that her leukemia cells were gone. But we won't know for sure until after her next bone marrow aspiration which is scheduled for Friday, October 19th at 10AM. We will get the results from a special test that looks very deeply into all of her blood cells and checks for any small percentage of leukemia cells that could be hiding. We had the amazing priviledge of speaking with the doctor who pushed this specialized test to be used at Riley. She said that it had been used in Europe for years and she made sure that all her patients had the test done. It makes their following stages of treatment much more personalized instead of just being grouped into a specific category. This test shows how effective which types of treatment are specifically for Kaylee. It's truly amazing!
But Kaylee is doing well. She will get to spend 10 days during her birthday week without any treatments whatsoever. So during her birthday week, she should be feeling really good!
Alexis is doing really well too. She got invited to the Honors Chamber Orchestra at her intermediate school. She just brought home straight A's on her report card. She has a great group of friends. She just finished up her first volleyball season where she improved so much over the season. Now she is preparing to go on a family vacation with the Willman side to Club Med in Florida. It's her first vacation without us, but I am sure she will have an awesome time. We're all a little jealous she gets to go without us!
We also got to see our new little baby on October 5th. Kaylee got to come along for the ultrasound. We found out we are having a little boy! We are getting close on a name...I think we've narrowed it down to a couple of choices. We have decided that we are going to bank his cord blood because his stem cells would be the perfect thing to use should Kaylee have a relapse. Just another instance where God's timing is perfect! I will have another ultrasound on November 5th to check on a low-lying placenta. It will most likely move up as I get bigger, but the worst case scenario is a C-section. I am confident that things will be fine no matter the outcome on that.
Thank you all for your continued prayers, love and support. We are continually amazed by all the love you all have shown to us. It truly means so much to us!
God is in control...He is giving us strength!
I can do everything through Him who gives me strength.
Isaiah 40:31
but those whose hope is in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.
Psalm 46: 1
God is our refuge and strength, an ever-present help in trouble.
Psalm 28: 7-8
The Lord is my strength and my shield; my heart trusts in Him and He helps me. My heart leaps for joy and I with my song I praise Him. The Lord is the strength of His people, a fortress of salvation for His annointed one.
Isaiah 12:2
Surely God is my salvation; I will trust and not be afraid. The Lord, the Lord Himself, is my strength and my defense; He has become my salvation.
I just wanted to give a little update. We are almost through the intense induction phase of Kaylee's leukemia treatment. She has been doing extremely well. She has had minimal side effects from the chemo. Here are the side effects she has experienced: swelling in her face and abdomen from the steroids, a few mouth sores, extreme hunger, low energy, petechiae (pinpoint bruising on her skin), high blood pressure, and she has just begun losing her hair over the last few days. She is very self-conscious about her round face and belly. She was feeling pretty good one day last week and I asked her if I could take a picture of her so people could see she was doing well. She said no. She doesn't want people to see how different she looks. I have reassured her that her appearance is temporary. She gets to stop taking her steroids this coming Thursday. She will shrink back down as quickly as she got bigger.
Her blood counts the last couple of weeks have been very good. At our clinic visit yesterday, the doctor said she was pretty confident that her leukemia cells were gone. But we won't know for sure until after her next bone marrow aspiration which is scheduled for Friday, October 19th at 10AM. We will get the results from a special test that looks very deeply into all of her blood cells and checks for any small percentage of leukemia cells that could be hiding. We had the amazing priviledge of speaking with the doctor who pushed this specialized test to be used at Riley. She said that it had been used in Europe for years and she made sure that all her patients had the test done. It makes their following stages of treatment much more personalized instead of just being grouped into a specific category. This test shows how effective which types of treatment are specifically for Kaylee. It's truly amazing!
But Kaylee is doing well. She will get to spend 10 days during her birthday week without any treatments whatsoever. So during her birthday week, she should be feeling really good!
Alexis is doing really well too. She got invited to the Honors Chamber Orchestra at her intermediate school. She just brought home straight A's on her report card. She has a great group of friends. She just finished up her first volleyball season where she improved so much over the season. Now she is preparing to go on a family vacation with the Willman side to Club Med in Florida. It's her first vacation without us, but I am sure she will have an awesome time. We're all a little jealous she gets to go without us!
We also got to see our new little baby on October 5th. Kaylee got to come along for the ultrasound. We found out we are having a little boy! We are getting close on a name...I think we've narrowed it down to a couple of choices. We have decided that we are going to bank his cord blood because his stem cells would be the perfect thing to use should Kaylee have a relapse. Just another instance where God's timing is perfect! I will have another ultrasound on November 5th to check on a low-lying placenta. It will most likely move up as I get bigger, but the worst case scenario is a C-section. I am confident that things will be fine no matter the outcome on that.
Thank you all for your continued prayers, love and support. We are continually amazed by all the love you all have shown to us. It truly means so much to us!
God is in control...He is giving us strength!
Monday, October 1, 2012
Do Not Worry
Romans 8: 17-18
And since we are His children, we are His heirs. In fact, together with Christ we are heirs of God's glory. But if we are to share His glory, we must also share His suffering. Yet what we suffer now is nothing compared to the glory He will reveal to us later.
2 Corinthians 12: 9-10
But He said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.
1 Corinthians 13: 7
Love never gives up, never loses faith, is always hopeful, and endures through every circumstance.
James 1: 2-4
Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perserverance. Let perserverance finish its work so that you may be mature and complete, not lacking anything.
Jeremiah 17: 7-8
But blessed are those who trust in the Lord and have made the Lord their hope and confidence. They are like trees planted alont a riverbank, with roots that reach deep into the water. Such trees are not bothered by the heat or worried by long months of drought. Their leaves stay green, and they never stop producing fruit.
Jeremiah 29: 11
For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you a hope and a future."
I have a feeling that a lot of you are worried about us and how we are handling the situation of Kaylee's illness. I want to assure you that you do not need to worry about us. I will speak for myself in the rest of this post. I do not want to assume that Ryan and Alexis feel the same way.
I have ABSOLUTE faith that God is in TOTAL control of this situation. I am really more surprised than anything that God has the faith in me to handle this illness, a new baby and normal day to day things. But when I think longer about it, I realize it's not really me getting us through all of these things, it is ONLY God. He is giving me the strength to deal with this situation and how can I even doubt that I would be able to handle it with Him holding me up?
God has a perfect plan to get us through everything. Even if the worst case scenario comes to be (not that that is what I expect or hope for) I know God will carry us through even that and we will all be much stronger because of it. So that is not even worrying me.
So, please, don't worry about us. Worry only shows little faith that God is in control and is doing what is best in our lives. Trust me, He ONLY does what is best...even if we cannot see it at the current time.
Thank you for your continued prayer and support. I am sure I will have weak times when I will doubt, but I am human. But, most of the time I am able to find the joy in the situation. I am more curious as to how God is using this to His glory. Time will tell.
Love to you all!
And since we are His children, we are His heirs. In fact, together with Christ we are heirs of God's glory. But if we are to share His glory, we must also share His suffering. Yet what we suffer now is nothing compared to the glory He will reveal to us later.
2 Corinthians 12: 9-10
But He said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.
1 Corinthians 13: 7
Love never gives up, never loses faith, is always hopeful, and endures through every circumstance.
James 1: 2-4
Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perserverance. Let perserverance finish its work so that you may be mature and complete, not lacking anything.
Jeremiah 17: 7-8
But blessed are those who trust in the Lord and have made the Lord their hope and confidence. They are like trees planted alont a riverbank, with roots that reach deep into the water. Such trees are not bothered by the heat or worried by long months of drought. Their leaves stay green, and they never stop producing fruit.
Jeremiah 29: 11
For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you a hope and a future."
I have a feeling that a lot of you are worried about us and how we are handling the situation of Kaylee's illness. I want to assure you that you do not need to worry about us. I will speak for myself in the rest of this post. I do not want to assume that Ryan and Alexis feel the same way.
I have ABSOLUTE faith that God is in TOTAL control of this situation. I am really more surprised than anything that God has the faith in me to handle this illness, a new baby and normal day to day things. But when I think longer about it, I realize it's not really me getting us through all of these things, it is ONLY God. He is giving me the strength to deal with this situation and how can I even doubt that I would be able to handle it with Him holding me up?
God has a perfect plan to get us through everything. Even if the worst case scenario comes to be (not that that is what I expect or hope for) I know God will carry us through even that and we will all be much stronger because of it. So that is not even worrying me.
So, please, don't worry about us. Worry only shows little faith that God is in control and is doing what is best in our lives. Trust me, He ONLY does what is best...even if we cannot see it at the current time.
Thank you for your continued prayer and support. I am sure I will have weak times when I will doubt, but I am human. But, most of the time I am able to find the joy in the situation. I am more curious as to how God is using this to His glory. Time will tell.
Love to you all!
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