Well, last night Tom and I got to have our first date night in what feels like a year! Thanks to Charley who scrambled to get her homework for her masters course done early so she could come over to watch the girls for us (her idea!) We had an awesome dinner at Bonefish, and it felt good to just be alone together even though we had the worst table in the restaurant smack in the middle of the whole dining room...we felt like we were the only ones there. It was nice to laugh and cry together, and then laugh at ourselves for crying in the middle of Bonefish. God is showing us how important it is to have a sense of humor these days!
Unfortunately though, we came home to the bad news that Izzy was feeling warm. Charley had checked her temp and it was just over 100. We gave her some ibuprofen and it was off to bed after the usual bedtime routine and a few extra kisses. She woke up burning up at 2:30 and her temp was 101.5. Poor baby! She is still sleeping now, so please say a prayer that this stinkin fever will be gone today.
Izzy was supposed to have her first IVIG treatment at the clinic today, but now it has to be rescheduled. The doctors are deciding what to do because this pushes everything back for her treatment plan.
God is in control, we will wait to see what happens next. We were given a beautiful daily devotional from our pastor's wife, Sam. I would highly recommend it to anyone looking for a way to get closer with God, it is very different from any other type of devotional book I've ever read. It's called "Seeking God's Face" by Philip Reinders. This is the verse that went along with yesterday's reading:
"The Lord has done great things for us, and we are filled with joy." Psalm 126:3
Praying you are blessed today!
Karen
Thursday, January 26, 2012
Tuesday, January 24, 2012
Thank You, I'm Sorry, Please
One of the things I've learned at River Rock church from Pastor Jon is this framework for a prayer: "Thank you... I'm sorry... Please..."
I'd like to share my prayer tonight and hope that you'll join me in continuing to pray for Izzy and our family through this storm that we are still in the midst of.
Lord, thank you...
~Thank you for showing your presence to us in such a profound way through these past few weeks. Our lives have been flipped upside down since a few days before Christmas, but we know that you are in control and we can see your loving hand at work. Thank you that you have chosen to remove cancer from Izzy's body. We believe that you have performed a miracle before our eyes and we will never take it lightly.
~Thank you for giving us an amazing support system of family, friends, church and work. I am especially thankful today that Tom and I have both been able to start working normal hours again, and it feels really good to have some sense of "normal" back into our lives through our jobs. I am so thankful for the property management industry that we both work in... there are so many customers, co-workers and leaders within both of our companies who have become friends to us. Through this trial we are really seeing the character and love of so many people we work with. It was fun today to see a lot of my work friends, it was one of the best days that I've had in awhile! We are also so thankful for Susie, my parents, Allison and Debbie who are all involved in caring for our girls while we work. We don't like that Izzy can't go to Susie's daycare any more because she can't be around other kids, but we are grateful that you have given us other wonderful people to help take care of her.
~Thank you for strengthening our family relationships through this trial. Lord, You have deepened our love for each other in ways that will be life long and we are so thankful. I've heard that through difficult times families will either fall apart or they will unite. Thank you for giving us this opportunity to become stronger and specifically for me to grow closer with my two beautiful stepdaughters, Kaleigh and Charley. They have displayed such grace and strength through this trial that I don't think either of them realized they had in them. Thank you for challenging them to be open to your will for their lives, and impressing it on their hearts to help others because of what they've learned through this experience.
~We praise you for teaching us that we should never take for granted the small moments with our daughters. Playing dress up, making a snowman, building a tower, coloring a picture for Grandma, Emma's first precious giggles, Hailey's bedtime prayers from her own heart...these are the things that matter. The laundry can wait. The kitchen can stay messy. The cheerios can stay on the carpet for now.
~ We praise you that we can see how you are touching lives through Izzy and drawing hearts closer to you.
Lord, I'm Sorry...
~I am sorry that I've had moments of doubt and self pity. There are some days that are so hard, and instead of turning to you, I make the choice to wallow in it. I have read other stories of families dealing with OMS, and instead of being encouraged by them, I am feeling sorry for myself because I see how drastically this disease can change families. I see that there are serious limits on fun times because of the germs that can harm Izzy, how we will have to become "germ Nazis" in our house and how we've already had to change our lifestyle so much in a short amount of time. I am sorry for being resentful and even a little bit angry.
~I'm sorry that I have been worried and afraid of what the future looks like for Izzy having OMS. I have fears of her not having a normal childhood, and that because of Izzy's illness our other girls will be forced to miss out on things too. I am afraid that Izzy will have permanent brain damage and behavior problems, things like Obsessive Compulsive Disorder, ADD, learning difficulties and social problems. Lord, I give these fears to you and I know that you have forgiven me for doubting you.
~I'm sorry that I've let my emotions get the best of me at times, and I've taken out some of my frustration on my husband. Tom is the best gift you have ever given to me, my heart aches that I have lashed out at him because of my own hurt. He is hurting too, and I know it's even harder for him as Izzy's daddy that he can't fix her.
~I'm sorry that I've forgotten at times that you have given me power over Satan, and that I can prevent him from having a foothold in our lives by accepting your armor of righteousness each and every day.
Lord, please...
~Please protect Izzy from any harmful side effects from her medications and treatments these next few weeks. She will have an IVIG infusion at the hospital on Thursday, another high dose 3 day pulse of steroids this weekend, and her first IV infusion of the drug Rituximab on Monday. Please protect her from germs as we go to and from the hospital. Please keep her comfortable and entertained through the long IV treatments. Please help the medications to be successful in stopping Izzy's body from attacking her healthy brain and release her from any permanent damage. We are praying that she will go into remission quickly.
~Please protect our home from bugs! It is so important that Izzy stays healthy because her immune system is weakened. We've been told that even a minor virus can cause her symptoms to backslide. Hailey has already been sick the past few days with a cough and fever, and we pray that you will heal her and prevent the germs from infecting Izzy. Please help our entire family to be protected from germs as we are at school and work.
~Please help the neurologists and nurses in charge of her care to make good decisions. Lord, please help Dr, Pranzatelli and his team to finish their work of developing a cure for OMS. Please free Izzy from this terrible disease as well as all of the other children who are also suffering.
~ Lord, we are pooped! Please help Izzy to start sleeping comfortably through the night again soon. We don't know exactly what is making it so difficult for her to sleep, if it is because she is having nightmares, or post traumatic stress from these past few weeks or if she just needs a little extra reassurance, but I'm hoping that Tom and I will be able to both sleep in our own bed together soon! As much as we both enjoy our little snuggle bug, we miss each other! We also pray that baby Emma will start sleeping through the night soon. There are some nights I feel like I'm being "Punk'd" and the girls are in cahoots with Ashton Kutcher to keep us up all night! Please help us to have the rest and the energy we need to take on each day with a sense of humor.
~Please continue to strengthen and mold our hearts through this journey, and help us to praise you in this storm.
Amen.
Casting Crowns- Praise You in This Storm (youtube)
This is one of my favorite songs...Praise You In This Storm by Casting Crowns. This song has lifted me up through difficult times in my life. I've been through heartache before, but this is so different. I can't imagine going though this without God by my side.
I'd like to share my prayer tonight and hope that you'll join me in continuing to pray for Izzy and our family through this storm that we are still in the midst of.
Lord, thank you...
~Thank you for showing your presence to us in such a profound way through these past few weeks. Our lives have been flipped upside down since a few days before Christmas, but we know that you are in control and we can see your loving hand at work. Thank you that you have chosen to remove cancer from Izzy's body. We believe that you have performed a miracle before our eyes and we will never take it lightly.
~Thank you for giving us an amazing support system of family, friends, church and work. I am especially thankful today that Tom and I have both been able to start working normal hours again, and it feels really good to have some sense of "normal" back into our lives through our jobs. I am so thankful for the property management industry that we both work in... there are so many customers, co-workers and leaders within both of our companies who have become friends to us. Through this trial we are really seeing the character and love of so many people we work with. It was fun today to see a lot of my work friends, it was one of the best days that I've had in awhile! We are also so thankful for Susie, my parents, Allison and Debbie who are all involved in caring for our girls while we work. We don't like that Izzy can't go to Susie's daycare any more because she can't be around other kids, but we are grateful that you have given us other wonderful people to help take care of her.
~Thank you for strengthening our family relationships through this trial. Lord, You have deepened our love for each other in ways that will be life long and we are so thankful. I've heard that through difficult times families will either fall apart or they will unite. Thank you for giving us this opportunity to become stronger and specifically for me to grow closer with my two beautiful stepdaughters, Kaleigh and Charley. They have displayed such grace and strength through this trial that I don't think either of them realized they had in them. Thank you for challenging them to be open to your will for their lives, and impressing it on their hearts to help others because of what they've learned through this experience.
~We praise you for teaching us that we should never take for granted the small moments with our daughters. Playing dress up, making a snowman, building a tower, coloring a picture for Grandma, Emma's first precious giggles, Hailey's bedtime prayers from her own heart...these are the things that matter. The laundry can wait. The kitchen can stay messy. The cheerios can stay on the carpet for now.
~ We praise you that we can see how you are touching lives through Izzy and drawing hearts closer to you.
Lord, I'm Sorry...
~I am sorry that I've had moments of doubt and self pity. There are some days that are so hard, and instead of turning to you, I make the choice to wallow in it. I have read other stories of families dealing with OMS, and instead of being encouraged by them, I am feeling sorry for myself because I see how drastically this disease can change families. I see that there are serious limits on fun times because of the germs that can harm Izzy, how we will have to become "germ Nazis" in our house and how we've already had to change our lifestyle so much in a short amount of time. I am sorry for being resentful and even a little bit angry.
~I'm sorry that I have been worried and afraid of what the future looks like for Izzy having OMS. I have fears of her not having a normal childhood, and that because of Izzy's illness our other girls will be forced to miss out on things too. I am afraid that Izzy will have permanent brain damage and behavior problems, things like Obsessive Compulsive Disorder, ADD, learning difficulties and social problems. Lord, I give these fears to you and I know that you have forgiven me for doubting you.
~I'm sorry that I've let my emotions get the best of me at times, and I've taken out some of my frustration on my husband. Tom is the best gift you have ever given to me, my heart aches that I have lashed out at him because of my own hurt. He is hurting too, and I know it's even harder for him as Izzy's daddy that he can't fix her.
~I'm sorry that I've forgotten at times that you have given me power over Satan, and that I can prevent him from having a foothold in our lives by accepting your armor of righteousness each and every day.
Lord, please...
~Please protect Izzy from any harmful side effects from her medications and treatments these next few weeks. She will have an IVIG infusion at the hospital on Thursday, another high dose 3 day pulse of steroids this weekend, and her first IV infusion of the drug Rituximab on Monday. Please protect her from germs as we go to and from the hospital. Please keep her comfortable and entertained through the long IV treatments. Please help the medications to be successful in stopping Izzy's body from attacking her healthy brain and release her from any permanent damage. We are praying that she will go into remission quickly.
~Please protect our home from bugs! It is so important that Izzy stays healthy because her immune system is weakened. We've been told that even a minor virus can cause her symptoms to backslide. Hailey has already been sick the past few days with a cough and fever, and we pray that you will heal her and prevent the germs from infecting Izzy. Please help our entire family to be protected from germs as we are at school and work.
~Please help the neurologists and nurses in charge of her care to make good decisions. Lord, please help Dr, Pranzatelli and his team to finish their work of developing a cure for OMS. Please free Izzy from this terrible disease as well as all of the other children who are also suffering.
~ Lord, we are pooped! Please help Izzy to start sleeping comfortably through the night again soon. We don't know exactly what is making it so difficult for her to sleep, if it is because she is having nightmares, or post traumatic stress from these past few weeks or if she just needs a little extra reassurance, but I'm hoping that Tom and I will be able to both sleep in our own bed together soon! As much as we both enjoy our little snuggle bug, we miss each other! We also pray that baby Emma will start sleeping through the night soon. There are some nights I feel like I'm being "Punk'd" and the girls are in cahoots with Ashton Kutcher to keep us up all night! Please help us to have the rest and the energy we need to take on each day with a sense of humor.
~Please continue to strengthen and mold our hearts through this journey, and help us to praise you in this storm.
Amen.
Casting Crowns- Praise You in This Storm (youtube)
This is one of my favorite songs...Praise You In This Storm by Casting Crowns. This song has lifted me up through difficult times in my life. I've been through heartache before, but this is so different. I can't imagine going though this without God by my side.
Monday, January 16, 2012
Cancer Free!!
Praise the Lord! We just got the call from Dr. Axtell (oncologist) about the final pathology reports and we won't be needing his services! He was happy to tell us that they found NO SIGN of cancer in the tumor. The N-Myc gene came back negative for cancer, there are definitely no cancer cells. This is considered a ganglioneuroma, 100% benign tumor. No chemo, no radiation!
She will have future follow up scans to make sure that the tumor doesn't come back, but Dr. Axtell thinks it is very unlikely that it will.
Remember, we were told that it was a 98% chance that her tumor was Neuroblastoma Cancer. Izzy's big sister Charley kept saying "Isabella is in the 2%", and we all wanted to believe that but we were also trying to be realistic that the Doctors are probably rarely wrong about these things.
Praise God for this miracle, Izzy is our 2%!
Karen & Tom
She will have future follow up scans to make sure that the tumor doesn't come back, but Dr. Axtell thinks it is very unlikely that it will.
Remember, we were told that it was a 98% chance that her tumor was Neuroblastoma Cancer. Izzy's big sister Charley kept saying "Isabella is in the 2%", and we all wanted to believe that but we were also trying to be realistic that the Doctors are probably rarely wrong about these things.
Praise God for this miracle, Izzy is our 2%!
Karen & Tom
Sunday, January 15, 2012
Being still in the uproar
Hi friends and family, several people have been asking for an update, especially for the results on the pathology reports from Izzy's surgery. Unfortunately we still don't have any answers. Apparently there was a miscommunication between the doctors and we've been told some of the reports are still pending and we won't know the results until this week. Our patience is being tested, among other things.
Although I am generally a very positive person, it isn't really my style to "sugar coat" things. The truth is that we are struggling and we still need prayers. It's awful to wait to find out if our daughter has cancer, but we are still hopeful for good results. (no news is good news, right?) The hardest part right now is accepting the OMS diagnosis and the treatments. As we learn more about this rare disease, it is becoming more and more clear that the road ahead is going to be long. It's been a very tough week, all of the weight of what is happening with Isabella has been hitting us really hard. We are worried about so many things, even though we are trusting in God we are definitely feeling our anxiety get the best of us some times. We are so heartbroken.
We know that God will see us through this, but Satan is definitely trying to kick us while we are down too. Please pray for our faith to remain strong, for our marriage to thrive through this test, and for all of our daughters to feel loved and secure through this even though we are so drained. Please don't stop praying for a cure for Izzy. We don't know what to expect with her disease, some kids have serious brain damage but we are hopeful that Izzy will be able to have a normal life. The specialist that we saw is aggressively working on a cure, he thinks he is about 2 years away from curing OMS completely. We believe that Izzy can be cured much sooner than that by God!
We are having a really hard time with the fact that Izzy has to have such serious medications, we don't even like giving our kids cold medicine. Please pray that her side effects are minimal and that there are no long term side effects that could hurt her when she grows up. Izzy is on a very high dose of steroids right now, and it's definitely wreaking havoc in our house. Our little bundle of Joy has become a child that we hardly recognize...the neurologist calls kids on steroids "little balls of hate rolling around the house". She will be on this "steroid pulse" until Tuesday and we are praying that the side effects subside soon so we can have our little happy gal back.
We are still seeing God's hand through all of this, and we are not going to succumb to the temptation to wallow in self pity (although staying in bed all day in my pajamas does sound pretty nice!) I want to share a few things that have helped me recently, because it's important to know that your encouragement and prayers are making a difference for us.
Yesterday my best friend, Heather, practically kidnapped me and forced me to go shopping with her (Ok, truthfully it doesn't take that much to convince me to go shopping, but all I really wanted to do was pout yesterday). Right before Heather came over I was working on our budget and feeling sick about how much we spent on Christmas before we knew any of this was going to happen. I was looking at how much we spent on groceries and diapers last month and wondering how the Meijer family got so much of our income! Then Heather showed up with a stack of gift cards to Meijer that a group of our friends had put together as a gift for us. What an unexpected blessing straight from God!
Today Tom and I were able to go to church together while my parents came to stay with the girls. God sure has a way of making his presence known when you are seeking Him! There were so many things that touched me throughout the music and message, but my favorite thing was the part of the lyrics of one of the songs:
"Look around,
Your Mother and Father
And sisters and brothers
Are carrying this cross with you."
Ain't that the truth! We are so incredibly thankful for our support system of family, friends, brothers and sisters in Christ who are truly walking beside us to help us through this tiresome time.
This scripture popped out to me the other day, and it is written on our fridge as a daily reminder:
"Blessed are those who persevere under trial, because when they have stood the test, they will receive the crown of LIFE that God has promised to those who love Him." - James 1:12
All of the hugs, meals, messages, facebook posts, emails, phone calls, text messages and comments on the blog are making a difference too. So many of them have made me smile and cry. Here is one of my favorites from a dear friend, Carla.
"Hi Karen, I have been following your posts and have been praying for Izzy and you and Tom. Know this, our God is Sovereign, purposeful and nothing happens outside the realm of His knowledge and care for us. During this time be strengthened by knowing that His grace is sufficient for you to pull down sacred resource, the intangible heavenly stuff that carries us through while we try to understand what exactly God is doing. Although it's very difficult through the emotional uproar, let your heart be still and your posture before God be one of reliance and Trust. What He is building inside of you has higher priority than the result we want to see with our physical eyes. Be comforted knowing that he would not allow anything that He cannot carry you through. Ultimately Izzys healing will be a manifestation and the stuff done through it will be an immovable mountain inside of you.
Love you! Call me if you need to talk"
Thank you again for being a part of the ups and downs with us.
Love in Christ,
Karen & Tom
Although I am generally a very positive person, it isn't really my style to "sugar coat" things. The truth is that we are struggling and we still need prayers. It's awful to wait to find out if our daughter has cancer, but we are still hopeful for good results. (no news is good news, right?) The hardest part right now is accepting the OMS diagnosis and the treatments. As we learn more about this rare disease, it is becoming more and more clear that the road ahead is going to be long. It's been a very tough week, all of the weight of what is happening with Isabella has been hitting us really hard. We are worried about so many things, even though we are trusting in God we are definitely feeling our anxiety get the best of us some times. We are so heartbroken.
We know that God will see us through this, but Satan is definitely trying to kick us while we are down too. Please pray for our faith to remain strong, for our marriage to thrive through this test, and for all of our daughters to feel loved and secure through this even though we are so drained. Please don't stop praying for a cure for Izzy. We don't know what to expect with her disease, some kids have serious brain damage but we are hopeful that Izzy will be able to have a normal life. The specialist that we saw is aggressively working on a cure, he thinks he is about 2 years away from curing OMS completely. We believe that Izzy can be cured much sooner than that by God!
We are having a really hard time with the fact that Izzy has to have such serious medications, we don't even like giving our kids cold medicine. Please pray that her side effects are minimal and that there are no long term side effects that could hurt her when she grows up. Izzy is on a very high dose of steroids right now, and it's definitely wreaking havoc in our house. Our little bundle of Joy has become a child that we hardly recognize...the neurologist calls kids on steroids "little balls of hate rolling around the house". She will be on this "steroid pulse" until Tuesday and we are praying that the side effects subside soon so we can have our little happy gal back.
We are still seeing God's hand through all of this, and we are not going to succumb to the temptation to wallow in self pity (although staying in bed all day in my pajamas does sound pretty nice!) I want to share a few things that have helped me recently, because it's important to know that your encouragement and prayers are making a difference for us.
Yesterday my best friend, Heather, practically kidnapped me and forced me to go shopping with her (Ok, truthfully it doesn't take that much to convince me to go shopping, but all I really wanted to do was pout yesterday). Right before Heather came over I was working on our budget and feeling sick about how much we spent on Christmas before we knew any of this was going to happen. I was looking at how much we spent on groceries and diapers last month and wondering how the Meijer family got so much of our income! Then Heather showed up with a stack of gift cards to Meijer that a group of our friends had put together as a gift for us. What an unexpected blessing straight from God!
Today Tom and I were able to go to church together while my parents came to stay with the girls. God sure has a way of making his presence known when you are seeking Him! There were so many things that touched me throughout the music and message, but my favorite thing was the part of the lyrics of one of the songs:
"Look around,
Your Mother and Father
And sisters and brothers
Are carrying this cross with you."
Ain't that the truth! We are so incredibly thankful for our support system of family, friends, brothers and sisters in Christ who are truly walking beside us to help us through this tiresome time.
This scripture popped out to me the other day, and it is written on our fridge as a daily reminder:
"Blessed are those who persevere under trial, because when they have stood the test, they will receive the crown of LIFE that God has promised to those who love Him." - James 1:12
All of the hugs, meals, messages, facebook posts, emails, phone calls, text messages and comments on the blog are making a difference too. So many of them have made me smile and cry. Here is one of my favorites from a dear friend, Carla.
"Hi Karen, I have been following your posts and have been praying for Izzy and you and Tom. Know this, our God is Sovereign, purposeful and nothing happens outside the realm of His knowledge and care for us. During this time be strengthened by knowing that His grace is sufficient for you to pull down sacred resource, the intangible heavenly stuff that carries us through while we try to understand what exactly God is doing. Although it's very difficult through the emotional uproar, let your heart be still and your posture before God be one of reliance and Trust. What He is building inside of you has higher priority than the result we want to see with our physical eyes. Be comforted knowing that he would not allow anything that He cannot carry you through. Ultimately Izzys healing will be a manifestation and the stuff done through it will be an immovable mountain inside of you.
Love you! Call me if you need to talk"
Thank you again for being a part of the ups and downs with us.
Love in Christ,
Karen & Tom
Thursday, January 12, 2012
Update from the Snowy Road
Quick update from Springfield, we are in the McDonald's parking lot getting ready to hit the highway for the long trek home. We stayed in the Ronald McDonald House the last two nights, so we thought it was appropriate to have Mickey D's for breakfast! :)
The oncologist called yesterday, they won't have the final pathology reports until Friday...stay tuned.
Our meeting with the specialist here in Illinois didn't go as we had hoped. Izzy has "moderate" OMS (out of a scale of 1-5 for severity it would be a 3). She will need a lot of treatment, Dr. Pranzatelli said to plan on two years of treatments. He is hopeful that it was caught early enough, so hopefully she won't have irreversible brain damage. We have a long road ahead, we are doing our best to accept it all right now. The goal is to have her symptoms in remission within 2 months...she is still having problems with her balance (ataxia) and sporadic eye movements (opsoclonus), as well as some tremors (myocolonus). Dr. Pranzatelli thinks these symptoms should be completely gone after a couple more rounds of steroids, IVIG treatments and a drug called Rituximab. When she is in remission the goal will be to prevent relapses, which can be triggered by infections in the body, even a minor cold can cause a relapse. So this is going to mean some pretty big lifestyle changes for us...we will need to do everything possible to avoid contagious sicknesses because her immune system is going to be very weak from the medications.
If you are interested in learning more about what OMS is, this website has everything you could possibly want to know and then some...www.omsusa.org
I'm trying to keep things in perspective, I met some families at the children's hospital who have a much heavier cross to bear. It's just so awful to see kids suffer, it's a parent's worst nightmare. Thanks for keeping us in your prayers, we need them!
This verse has been impressed on my heart since yesterday...
"Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light." Matthew 11:28-30
We have a long snowy drive ahead of us today, so please pray for our safety. We are so excited to see our babies at home, we are missing them like crazy!
With love,
Kare & Tom
The oncologist called yesterday, they won't have the final pathology reports until Friday...stay tuned.
Our meeting with the specialist here in Illinois didn't go as we had hoped. Izzy has "moderate" OMS (out of a scale of 1-5 for severity it would be a 3). She will need a lot of treatment, Dr. Pranzatelli said to plan on two years of treatments. He is hopeful that it was caught early enough, so hopefully she won't have irreversible brain damage. We have a long road ahead, we are doing our best to accept it all right now. The goal is to have her symptoms in remission within 2 months...she is still having problems with her balance (ataxia) and sporadic eye movements (opsoclonus), as well as some tremors (myocolonus). Dr. Pranzatelli thinks these symptoms should be completely gone after a couple more rounds of steroids, IVIG treatments and a drug called Rituximab. When she is in remission the goal will be to prevent relapses, which can be triggered by infections in the body, even a minor cold can cause a relapse. So this is going to mean some pretty big lifestyle changes for us...we will need to do everything possible to avoid contagious sicknesses because her immune system is going to be very weak from the medications.
If you are interested in learning more about what OMS is, this website has everything you could possibly want to know and then some...www.omsusa.org
I'm trying to keep things in perspective, I met some families at the children's hospital who have a much heavier cross to bear. It's just so awful to see kids suffer, it's a parent's worst nightmare. Thanks for keeping us in your prayers, we need them!
This verse has been impressed on my heart since yesterday...
"Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light." Matthew 11:28-30
We have a long snowy drive ahead of us today, so please pray for our safety. We are so excited to see our babies at home, we are missing them like crazy!
With love,
Kare & Tom
Monday, January 9, 2012
Road Trip
We are thrilled about the good news from the surgery and the preliminary tests on the tumor, but we aren't out of the woods quite yet. The other part of Izzy's medical condition is OMS (Opsoclonus-Myoclonus Syndrome), which was triggered by the tumor, and it is so rare that not many neurologists know exactly how to treat it. There is a specialist in Springfield Illinois, Dr. Pranzatelli, and our neurologist here has recommended that we see him ASAP for a consultation and further testing. So we are packing our suitcases (again...I just unpacked them!) and going on a road trip leaving tomorrow to see Dr. Pranzatelli. Izzy is going to have another lumbar puncture because they need more spinal fluid to determine how severe her OMS is. The treatment plan that is the normal protocol for OMS is only to manage her symptoms, OMS can be life long and has no definite cure. It can cause severe learning disabilities and behavior problems. There are 4 different medications that she may need, and they have whopping side effects. They are also immune suppressants, which means that Izzy will be very susceptible to catching sicknesses and won't be able to go to regular activities and fun events with other kids. Although she is doing better now because of the medications, it is common to relapse a few weeks after the IVIG treatment that she had over Christmas weekend. Please continue your prayers for Izzy that she will be cured of OMS completely without medication. We know our God has already answered so many of our prayers, we are boldly asking for another miracle!
We will have more results from the pathology tests on the tumor by Wednesday which will confirm if it is malignant or benign. We are so happy about the news that there were no cancer cells in the preliminary "freeze test", but then a friend cautioned us that this happened to them (negative results in freeze test) and then cancer cells were found with the more extensive testing, so it burst our bubble a little bit. We know that God is in control, but it's still nerve-wracking and exhausting during this period of waiting.
Sigh. I am feeling a little bit like our life has been like a "Lifetime" movie these past few weeks...and I never cared much for Lifetime movies. But I know there will be a happy ending, because God is the script-writer.
"Faithful God, I am here today, praying to you now, because you've kept your word. Today is a gift because of your almighty and ever-present power that holds all things together. Thank you that I don't have to live anxiously but can live confidently, trusting in your providing hands to keep us in your love. Amen."
(from the book "Seeking God's Face"; special thanks to Pastor Jon and Sam for the gift of this book)
We still need your prayers, please continue to remember Isabella every day when you spend time with our Heavenly Father.
With thanks,
Karen & Tom
We will have more results from the pathology tests on the tumor by Wednesday which will confirm if it is malignant or benign. We are so happy about the news that there were no cancer cells in the preliminary "freeze test", but then a friend cautioned us that this happened to them (negative results in freeze test) and then cancer cells were found with the more extensive testing, so it burst our bubble a little bit. We know that God is in control, but it's still nerve-wracking and exhausting during this period of waiting.
Sigh. I am feeling a little bit like our life has been like a "Lifetime" movie these past few weeks...and I never cared much for Lifetime movies. But I know there will be a happy ending, because God is the script-writer.
"Faithful God, I am here today, praying to you now, because you've kept your word. Today is a gift because of your almighty and ever-present power that holds all things together. Thank you that I don't have to live anxiously but can live confidently, trusting in your providing hands to keep us in your love. Amen."
(from the book "Seeking God's Face"; special thanks to Pastor Jon and Sam for the gift of this book)
We still need your prayers, please continue to remember Isabella every day when you spend time with our Heavenly Father.
With thanks,
Karen & Tom
Friday, January 6, 2012
Thursday, January 5, 2012
Surgery
We need our army of prayer warriors! Isabella is having her surgery at 1:30 tomorrow. Today we met with the surgeon, Dr. DeCou, and he feels that a laparoscopic approach would be too risky because Izzy's tumor is complicated and is "nested" within a network of nerves, blood vessels and her illiac artery. He will be doing an open surgery because he feels it is a safer approach, although the healing time and risk of infection are greater. Please pray for Dr. DeCou and his team, we hope that the surgery is successful to remove 100% of the tumor.
We also met with the Neurologist, Dr. Arndt, today. He gave us the proposed treatment plan for Izzy's Opsoclonus-myoclonus syndrome. It is extensive and expensive, and there are serious side effects. It is scary and unnerving.
Izzy's MIBG scan was today, which is to determine is there are any other signs of cancer in her body. We don't have the results back yet, we should know more tomorrow morning. We are waiting and trusting God for good news.
It was a busy day! We also met with Dr. Sholler, who will be overseeing the research study of the tissue obtained from Izzy's surgery tomorrow to study its genetic makeup. This research may be helpful for her treatment plan, or it may help other kids in the future. Please pray for an advancement in the treatment, cure or even the prevention of Neuroblastoma as a result of this research. No family should have to endure this, we pray that the word "childhood cancer" can be wiped out of our vocabulary some day.
In the past 2 weeks Izzy has had numerous IVs, an MRI, lumbar puncture, CT Scan, bone scan, bone marrow draw, echo cardiogram, several sedations (with 10-12 hours or more of fasting before each one), multiple lab tests, countless checks of her vitals, 3 days of IVIG 10 hour treatments, an MIBG scan, steroids, anti-nausea medication...she has lost her mobility, suffered an extreme lack of sleep and she has been diagnosed with a condition that affects only ONE in TEN MILLION children. Her little world has been flipped upside down and inside out. Yet, somehow, our little trooper is still smiling and cracking us up with her silly antics. Everyone who meets her tells us what a "joy" she is, without even knowing that her middle name is Joy. We adore her, our hearts ache for her, we just want her to be better. We know God is hearing our prayers, we know he has special plans for her.
We would like to thank you for praying for Isabella and our family. We are so blessed to have an amazing support system of family, friends and our church, River Rock. We are also so grateful for our employers, Apco Inc. and For Rent Media Solutions, for being so supportive through this experience. We could not get through this without your love and encouragement.
We will do our best to send out an update right away after Izzy's surgery tomorrow. Thank you for praying throughout the day for Isabella, we know there are hundreds of people joining us in our prayers and it means so much to us!
Thanks to my dad for this passage and quote for today:
"Yea, the LORD will give that which is GOOD." Psalm 85:12
"Don't rely on yesterday's grace for tomorrow. Trust God for each day". Lloyd Barcroft (Izzy's Papa)
God bless,
Tom and Karen
We also met with the Neurologist, Dr. Arndt, today. He gave us the proposed treatment plan for Izzy's Opsoclonus-myoclonus syndrome. It is extensive and expensive, and there are serious side effects. It is scary and unnerving.
Izzy's MIBG scan was today, which is to determine is there are any other signs of cancer in her body. We don't have the results back yet, we should know more tomorrow morning. We are waiting and trusting God for good news.
It was a busy day! We also met with Dr. Sholler, who will be overseeing the research study of the tissue obtained from Izzy's surgery tomorrow to study its genetic makeup. This research may be helpful for her treatment plan, or it may help other kids in the future. Please pray for an advancement in the treatment, cure or even the prevention of Neuroblastoma as a result of this research. No family should have to endure this, we pray that the word "childhood cancer" can be wiped out of our vocabulary some day.
In the past 2 weeks Izzy has had numerous IVs, an MRI, lumbar puncture, CT Scan, bone scan, bone marrow draw, echo cardiogram, several sedations (with 10-12 hours or more of fasting before each one), multiple lab tests, countless checks of her vitals, 3 days of IVIG 10 hour treatments, an MIBG scan, steroids, anti-nausea medication...she has lost her mobility, suffered an extreme lack of sleep and she has been diagnosed with a condition that affects only ONE in TEN MILLION children. Her little world has been flipped upside down and inside out. Yet, somehow, our little trooper is still smiling and cracking us up with her silly antics. Everyone who meets her tells us what a "joy" she is, without even knowing that her middle name is Joy. We adore her, our hearts ache for her, we just want her to be better. We know God is hearing our prayers, we know he has special plans for her.
We would like to thank you for praying for Isabella and our family. We are so blessed to have an amazing support system of family, friends and our church, River Rock. We are also so grateful for our employers, Apco Inc. and For Rent Media Solutions, for being so supportive through this experience. We could not get through this without your love and encouragement.
We will do our best to send out an update right away after Izzy's surgery tomorrow. Thank you for praying throughout the day for Isabella, we know there are hundreds of people joining us in our prayers and it means so much to us!
Thanks to my dad for this passage and quote for today:
"Yea, the LORD will give that which is GOOD." Psalm 85:12
"Don't rely on yesterday's grace for tomorrow. Trust God for each day". Lloyd Barcroft (Izzy's Papa)
God bless,
Tom and Karen
Tuesday, January 3, 2012
Laugh and Sing and Play and Run
Friends & Family, we are experiencing some wonderful answers to all of our prayers! Today we had lunch with my parents and my brother...we said a prayer before our meal, thanking God for our blessings and lifting up Isabella once again in prayer as we have been for the past 2 weeks. Within minutes of finishing our prayer, my phone rang. On the other end was a cheerful voice introducing herself as Jess from the Helen DeVos Childrens' Hospital Hemoc/Oncology Clinic. "Isabella's bone marrow is good!" Praise God, there is no sign of cancer in her bones or her bone marrow! This is the news we have been on pins and needles waiting to hear!
We are also seeing significant improvement in Izzy's eyes and mobility. She RAN across the living room to me today! A few days ago she could not even sit up on her own, much less stand, walk or run. She is still wobbly, but she is getting a little better every day! I feel like we are witnessing a miracle right in front of us.
We know that the road ahead of us could still be long, but we are optimistic. We know that Izzy's condition, Opsoclonus-Myoclonus Syndrome (OMS) is a chronic condition that is a mystery to the medical world. From what we understand, it is treatable but not curable. Many kids with OMS do not live a normal life. They may always have coordination and balance problems, learning difficulties, behavior issues, sleep problems, need special education etc. We also don't know if she will need chemotherapy to kill the cancer in her body, or if the surgery on Friday will work to fully remove it all. We are praying that they don't find any more tumors on Thursday with her MIBG scan. We are also dreading that Izzy has to have three more IVs this week, and her little veins are difficult for the nurses to find, it is so traumatic for her to be poked over and over again. We need your prayers, please don't stop praying for our little girl every day. We are praising Him for the hope that continues to grow every day as we see our baby get back to being her funny little self. (Just now she was pretending to be a puppy and licked Kaleigh on the cheek, and she is singing Twinko-Twinko Wittle Star!)
A song has been stuck in my head all day today from a CD that we listen to in the car. Here are the lyrics, I just love this.
"Let the little children come,
Let them laugh and sing and play and run.
Let the little children come,
God has time for everyone,
For the kingdom of God belongs to hearts like these,
Let the little children come to me."
Thank you for praying and believing in a God of miracles!
Karen & Tom
We are also seeing significant improvement in Izzy's eyes and mobility. She RAN across the living room to me today! A few days ago she could not even sit up on her own, much less stand, walk or run. She is still wobbly, but she is getting a little better every day! I feel like we are witnessing a miracle right in front of us.
We know that the road ahead of us could still be long, but we are optimistic. We know that Izzy's condition, Opsoclonus-Myoclonus Syndrome (OMS) is a chronic condition that is a mystery to the medical world. From what we understand, it is treatable but not curable. Many kids with OMS do not live a normal life. They may always have coordination and balance problems, learning difficulties, behavior issues, sleep problems, need special education etc. We also don't know if she will need chemotherapy to kill the cancer in her body, or if the surgery on Friday will work to fully remove it all. We are praying that they don't find any more tumors on Thursday with her MIBG scan. We are also dreading that Izzy has to have three more IVs this week, and her little veins are difficult for the nurses to find, it is so traumatic for her to be poked over and over again. We need your prayers, please don't stop praying for our little girl every day. We are praising Him for the hope that continues to grow every day as we see our baby get back to being her funny little self. (Just now she was pretending to be a puppy and licked Kaleigh on the cheek, and she is singing Twinko-Twinko Wittle Star!)
A song has been stuck in my head all day today from a CD that we listen to in the car. Here are the lyrics, I just love this.
"Let the little children come,
Let them laugh and sing and play and run.
Let the little children come,
God has time for everyone,
For the kingdom of God belongs to hearts like these,
Let the little children come to me."
Thank you for praying and believing in a God of miracles!
Karen & Tom
Sunday, January 1, 2012
Trusting & Waiting
We are blessed to have such wonderful friends, family and church We are so grateful for all of the wonderful meals and gifts...we are humbled by the outpouring of love and support around us. Special thanks to my best friend, Heather Holford, for taking care of our girls this morning so Tom and I could go to church to praise our Heavenly Father. We needed that! Thank you Pastor Jon for allowing the Holy Spirit to work through your words, and for the prayer team for lifting us up in prayer after the service. I'm not gonna lie, we've been struggling with some feelings of worry, fear and pity. There are times that I'm tempted to kick and scream like a 2 year old myself, "I just want our old life back!".
We are asking for prayers this week as we have a lot of unknowns ahead of us.
Monday: We hope to celebrate Christmas with Grandma, Papa and Uncle Doug since we haven't been able to exchange gifts with them yet. We are praying for safe roads to travel to and from Clarksville, and for good health as our entire family has been struggling with being sick. Tom had walking pneumonia last week, and now both of my parents and my brother have it. Charley, Kaleigh and I have also been trying to fend off being sick, thank God for ZPacks!
Tuesday: We should have the results back from Izzy's bone marrow test. Please pray for good news.
Wednesday: We are going to the children's hospital for Izzy's injection of Nuclear Medicine prior to her MIBG scan. This medicine is manufactured specifically for her and shipped from Canada, it is administered 24 hours before the scan, and it will "light up" any spots of cancer in her body.
Thursday: Isabella's MIBG scan is at 11:30. We are praying that there will be no other signs of tumors or lesions in her body. On Thursday we are also meeting with the research specialist, Dr. Sholler, to hear more about the research study that she would like Isabella to participate in.
Friday: Izzy's surgery is Friday morning. The surgical team will be attempting to remove the entire primary tumor (and any other tumors or lesions that they find in the MIBG scan, which hopefully there will be none). Please pray that Izzy will be healthy and strong for her surgery, and for wisdom of the doctors and nurses, as it could be a very complicated surgery depending on what the tumor is attached to.
We will be in the hospital Friday night and possibly through the weekend, depending on how extensive the surgery is and how well Izzy is recovering.
After the tumor is removed it will be studied extensively to determine exactly what we are dealing with. It could be a very aggressive form of cancer, or maybe, just maybe Lord willing, it could turn out that it isn't cancer at all. A lot of our questions will be answered this week and the following week. This is a time of a lot of unknowns, which is scary, but we are trusting in God.
"Trust in the LORD with all your heart and lean not on your own understanding. In all your ways, acknowledge Him and he will make your paths straight." -Proverbs 3:5-6
Izzy's tumor measures 2.3 cm x 1.4 cm, which would fit in this box. We are thankful that our God cannot fit inside of ANY box!
Thank you for your continued prayers and support.
Tom and Karen
We are asking for prayers this week as we have a lot of unknowns ahead of us.
Monday: We hope to celebrate Christmas with Grandma, Papa and Uncle Doug since we haven't been able to exchange gifts with them yet. We are praying for safe roads to travel to and from Clarksville, and for good health as our entire family has been struggling with being sick. Tom had walking pneumonia last week, and now both of my parents and my brother have it. Charley, Kaleigh and I have also been trying to fend off being sick, thank God for ZPacks!
Tuesday: We should have the results back from Izzy's bone marrow test. Please pray for good news.
Wednesday: We are going to the children's hospital for Izzy's injection of Nuclear Medicine prior to her MIBG scan. This medicine is manufactured specifically for her and shipped from Canada, it is administered 24 hours before the scan, and it will "light up" any spots of cancer in her body.
Thursday: Isabella's MIBG scan is at 11:30. We are praying that there will be no other signs of tumors or lesions in her body. On Thursday we are also meeting with the research specialist, Dr. Sholler, to hear more about the research study that she would like Isabella to participate in.
Friday: Izzy's surgery is Friday morning. The surgical team will be attempting to remove the entire primary tumor (and any other tumors or lesions that they find in the MIBG scan, which hopefully there will be none). Please pray that Izzy will be healthy and strong for her surgery, and for wisdom of the doctors and nurses, as it could be a very complicated surgery depending on what the tumor is attached to.
We will be in the hospital Friday night and possibly through the weekend, depending on how extensive the surgery is and how well Izzy is recovering.
After the tumor is removed it will be studied extensively to determine exactly what we are dealing with. It could be a very aggressive form of cancer, or maybe, just maybe Lord willing, it could turn out that it isn't cancer at all. A lot of our questions will be answered this week and the following week. This is a time of a lot of unknowns, which is scary, but we are trusting in God.
"Trust in the LORD with all your heart and lean not on your own understanding. In all your ways, acknowledge Him and he will make your paths straight." -Proverbs 3:5-6
Izzy's tumor measures 2.3 cm x 1.4 cm, which would fit in this box. We are thankful that our God cannot fit inside of ANY box!
Thank you for your continued prayers and support.
Tom and Karen
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