I Love Her More.

The saying "No news is good news" is true in our case. I haven't updated the blog in several months, because thankfully, there is nothing dramatic to share. We are just living our lives, enjoying our family time. We are blessed to be surrounded by family and friends as we make memories with our happy, healthy kids.  Izzy is doing awesome, we couldn't ask for better health for her. She is our miracle child, and we thank God for her every day.

We have seen God's hand in our lives in profound and powerful ways since the day our lives were turned upside down...Christmas Eve 2011 when Izzy was diagnosed with Neuroblastoma and OMS. We have been lifted up by prayer warriors and God answered those prayers to bring HIM glory. We have had people share their stories with us about how God used Izzy's healing to change their lives. That deserves repeating...God used Izzy's healing to change people's lives around us! We have been so touched and blessed to hear stories of friends and family members who found their way to Jesus, and we pray that there are more lives changed that we may never know about. We are humbled and awestruck by His love and power.

We have a few prayer requests to share with you today:

1. Please stop what you're doing and thank God for our miracle. It is easy to get swept up in the daily craziness of life and lose sight of the miracles around us. If you have kids, please pray over them and thank our Heavenly Father for them. As I reflect back on our experience with Izzy's illness, when we were in the thick of it, one thing that stands out to me clearly is the truth that God placed on my heart..."I know how much you love her, and I know you can't understand this but I LOVE HER MORE. She is my precious daughter, I created her." God loves our children more than we do, what an amazing truth that we can rest on and put our hope in.

2. This Thursday, (10/18) Izzy will have her 3rd scan since her tumor was removed in January. The first two CTs have shown that everything in her little tummy looks perfect. We have no reason to believe that anything is different now, but there is always anxiety because, after all, we are human. Thank you for your prayers that she is still healthy. We will meet with her Oncologist to review the CT results on Thursday, followed by her monthly IVIG treatment and steroids. Uggh. We hate this so much, we want our baby to be done with the pokes and the medications.

3. Which brings me to my third prayer request. We are traveling to Springfield, Illinois to meet with the OMS specialist, Dr. Pranzatelli, on November 8th. He will be conducting a thorough evaluation of her from a neurology standpoint to determine if she has any signs of OMS that we may be unaware of. He will determine the next step of her treatment. We have followed his protocol since Izzy's diagnosis, and the plan was to complete 12 months of monthly IVIG/Steroid treatment and as long as she is doing well, she can be tapered off the medication in 2013. That will tell us if her symptoms are being controlled by the medication or if she actually is in complete remission. Please pray that Dr. P sees the miracle that we see, and that her symptoms never return.  

Thank you for your prayers and love.

Karen & Tom
Charley, Kaleigh, Hailey, Izzy and Emma

 

 

Never the Same

It just dawned on me that when we received the results from Izzy's scan I forgot to update the blog with the good news! Many of our friends and family are connected with us through Facebook, so I think most people have heard the news...but here is a little more detail about Izzy's appointment with the oncologist a couple of weeks ago (4/26/12).

Izzy's CT Scan came back perfect! There was no sign of the tumor that once lived in her belly, and there is no sign of any regrowth. This is something that we felt sure of in our hearts, so we weren't surprised by the news. But it sure was wonderful to hear it from the Dr. to confirm what we believed.

It appears that Izzy's OMS symptoms are completely gone. The Dr. could not spot any sign of Opsoclonus (involuntary eye movements) or Ataxia (lack of balance). She runs and plays and talks like a normal 2 year old. Who knew "normal" could mean so much.

We can lighten up now on keeping Izzy sheltered from other kids and the general public. Her immune system is stronger now and she should be able to fight off any bugs that happen to make their way into her system. We can go places together as a family now...restaurants, parks, and most importantly to us, to our church. We will still need to be careful when we know someone is sick, and we will continue to avoid places like the play area at the mall (aka "germland"), but for the most part, Izzy can have a normal social life again. It's so heart-warming to watch her play with other children again...the giggles and even the ear-piercing screeches are precious.

We are celebrating! We have a road trip planned with the little girls for later this month to drive to the Outer Banks to stay at a beach house with one of my best friends and her family. Can't wait to build sand castles and find treasures on the beach.

A few more exciting things at our home...Kaleigh is home from college now, she just finished her sophomore year with a 3.3 GPA! Charley is getting ready to leave for China for 3 1/2 weeks to complete her masters degree. Tom is such a proud daddy! I hope and pray that Hailey, Izzy and Emma follow in their big sisters' footsteps of following their dreams.

We've had the blessing of having our beautiful niece Ahnika stay with us for the past 2 weeks. She is by far the most spiritually mature 12 year old I have ever known, and it's been so great bonding with her. Ahnika has a good head on her shoulders and will make wise choices with her life in the years to come, but I'm sure that living with a 5 year old, a 2 year old and a 6 month old baby for 2 weeks has opened her eyes to the responsibility of having kids. Best kind of birth control available!

We love this little girl to pieces.

Izzy and her cousin Ahnika enjoying an afternoon at Lake Michigan.

Hailey & Izzy racing to the top of a "giant" dune.

God has been so good to our family, we are in awe at how he has perfectly intertwined our lives with all of these beautiful girls. Thank you for being a part of our family, loving us, praying for us, lifting us up with encouragement. This ordeal with Izzy has been the most difficult trial that Tom and I have ever encountered.

Our baby girl is going to be OK. We have experienced a miracle. Life will never be the same.

Not a Fan of the Scan

Izzy had her first of many CT scan follow up appointments at the hospital today. She is such a brave girl! She didn't have to be sedated, we were so thankful for that. She had to get an IV poke, which we didn't know about in advance and we had assured her "no pokes today!" We were disappointed to find out that there would be an IV for the contrast dye during the CT, I thought Tom was going to jab a needle into someone for not informing us. But Izzy handled it like a trooper and got a new green stuffed puppy as her "poke prize". She named him Barky.


Izzy didn't like the whole idea of the CT machine...we had practiced at home laying still on the kitchen table, but the real thing wasn't as much fun! It was more the fear of the unknown that bothered her, once she realized it wasn't going to hurt she was fine (she didn't trust us after the IV incident!) She isn't a fan of the whole scan experience, but who can blame her. Two year olds shouldn't have to go through any of this, but we trust God that she will only have happy memories. It's amazing how she doesn't dread going to the hospital after all she has been through, she is always excited to go see the giant inflatable Minnie & Mickey Mouse in the lobby. It's as if God has carefully filtered out the scary memories from her precious mind.

We will meet with the oncologist next Thursday (4/26) to review the results from the scan. This is the first scan since her surgery in January, which will tell us if the surgeon was completely successful in removing the entire tumor. It will also confirm that there are no other tumors. We believe that she has been healed of cancer, we have hope for great results!

Izzy is changing right before our eyes, moving on from her toddler stage and becoming such a spunky little girl!  She is completely potty trained now, once she decided she was ready there was no turning back! Praise God! Now if she can just teach Emma we'll be all set!

Izzy was able to go back to Susie's house for day care with Hailey & Emma starting last week. She loves being reunited with her little buddies Eli, Ethan, Jack and Nolan. We were so blessed to have "Grandma Deb", Sarah, Allison and Grandma & Grandpa help take care of Izzy when she couldn't go to Susie's, but we are thankful to have our girls together again during the day.

Things are almost back to normal...we are getting out and about a lot more now with Izzy (armed with hand sanitizer!) She still can't go to places like the mall, Sunday School, the YMCA kid zone etc. because of the high risk of germs. Chuck E. Cheese probably won't be meeting Izzy any time soon, but all things considered, I think that is a sacrifice we can deal with.  Izzy has been protected so far from getting sick, we were so concerned that it could cause a relapse of OMS because her anti-bodies could freak out and attack her brain again. It could still happen, but we are optimistic...so far, so good. Our prayers have been answered all along, angels are watching over Izzy.

Pony Tails and Paper Plates

It's been a few weeks since I've posted on the blog....mainly because we've been just enjoying our family time together with this incredible weather that we've been having! We are soaking up the sun every chance we get, making memories.


Quite a few people have asked me how I manage to work full time with 3 little girls 5 and under, especially with everything we've had going on with Izzy. It's not easy,  but one thing I've learned through this experience is how important it is to appreciate the things that really matter, and to let go of everything else. I'm also getting better at focusing on the present moment. Our time in the evening and weekends is precious, and we value it so much more now.  Before it seemed like we were always on the go, life was constantly moving in a blur. We are still busy now, but it's different. We are more content just to be home, keeping life simple, watching the girls play. Really watching them...they are so funny and amazing and beautiful.

Be warned though, if you happen to drop in for a visit...be prepared to find a messy house, my hair in a pony tail and dinner on paper plates! :) Something's gotta give!

Izzy is doing so incredibly well, it almost seems as if everything that happened was some kind of dream. I look back through the photos and the blog, I remember every detail, yet it's as if we floated through it. No doubt we were actually carried through it. "I am with you always." Mathew 28:20 (Thank you Kelli for the reminder of this special verse that is so real for us).

To look at Izzy now, you wouldn't even know that she had been diagnosed with cancer just 3 months ago. You woudn't know she has a neurological disorder that occurs in only 1 out of 10 million people. You wouldn't know she had major surgery, except for the scar on her belly. She is a precocious, busy 2 year old silly girl who is loved by her mommy, daddy, sisters, grandparents, aunts and uncles and friends more that she will ever be able to comprehend until she has her own children.

We still have things to keep a close eye on, we certainly don't know what lies ahead for Izzy's health, but we have faith that God will continue to be at our side. Izzy's treatments for OMS will continue throughout this year. We have her monthly IVIG treatment at the hospital coming up this Thursday, and the 3 day pulse of steroids at home through the weekend, which is very difficult for all of us. Izzy goes from being a happy little girl to being a complete emotional wreck for about 5 days. Hailey calls it Izzy's "grouchy medicine". She will have a CT scan in April to make sure her tumor is 100% gone. We appreciate the continued prayers for her.

It's hard to believe how sick she was just a few months ago

We are thankful for this experience, it has changed our lives forever. The gratitude we have for our children, and the compassion we have for others is something we will have as part of our life story forever. This experience will shape the choices we make for the future.

Tom and I talk about how nice it is that our life is somewhat boring right now. Nights hanging out at home, enjoying a margarita while the girls play in the yard may not sound too exciting to a lot of people, but to us...it's simply perfect.

Izzy loves our pet bunny "Foo Foo"

Riding home from Grandma's house after Mommy's work day

Hailey and Izzy are quite the duo on the tricycle!

Loving the warm weather!





Emma is such a happy baby! 5 1/2 months old already!



Enjoying every smile

Great, Fantastic and Weird News

GREAT News: Last Thursday Isabella had her last Rituximab treatment at the hospital, and now Happy Eddie can retire. We bought her little elephant friend from the hospital gift shop the first day of her Rituximab IV in early February and he has been traveling back and forth with us to the hospital every Thursday for the past month. Happy Eddie has quite a reputation at the hospital, everyone knows him by name! (By the way, Izzy chose his name, don't ask me how but it sure seemed to suit him). Prayers have been answered and Izzy has breezed through the treatments with NO side effects at all. She has been such a trooper getting IVs every week and spending long days at the hospital, proudly walking Happy Eddie around making the nurses and other kids smile.


Izzy's last Rituximab Treatment. Happy Eddie can happily retire to the land of deflated mylar elephants now.



FANTASTIC News: We met with Izzy's neurologist on Friday and he is extremely happy with her progress as far as her OMS is concerned. He does not see any sign of Opsoclonus (eye movements), Myoclonus (tremors) and if there is any Ataxia (balance/coordination problems) it would be considered normal for her age. Not to mention that I am pretty uncoordinated myself so I don't think she is genetically wired to be a ballerina :) Again, our prayers have been answered and it appears that she is in remission!



Now for the WEIRD News: So...something odd has happened that we've been trying to make sense of for the past two weeks. We had an appointment for Izzy's baby sister Emma with our pediatrician on February 14th. Dr. Mark has been involved in Izzy's medical case since she was first showing signs of opsoclonus and balance problems right before Christmas. Although we were there to see him for Emma's 4 month check up, he had Izzy's file in hand when he came into the office. He said "So, you guys have been through quite a roller coaster ride with Izzy's diagnosis, haven't you. First she was diagnosed with Neurblastoma (cancer), then Ganglioneuroma (not cancer), and now it's being called Grade One Neuroblastoma again" (cancer). This was the first we had heard that Izzy's diagnosis was changed, we thought it must be a mistake with Dr. Mark's paperwork. We took a copy of the paperwork to Izzy's follow up appointment with the Oncologist last week, and we found that someone did make a mistake. Unfortunately, the mistake was made when we were informed that her tumor was benign. Izzy's tumor WAS cancerous after all.

I've been thinking a lot about this and trying to understand what this means. Here we've been celebrating the amazing news that Izzy's tumor was benign, only to find out now that it was actually CANCER. How could someone make a mistake like this? Who made the mistake? We haven't been able to get all of the answers, but it appears that the oncologist made a mistake when he called us regarding the final pathology reports after Izzy's surgery, although he isn't admitting that he made the mistake. It just doesn't make any sense, I don't understand it and I've had a pit in my stomach about this since this news was confirmed. It doesn't really change anything as far as her treatment plans are concerned...but cancer? In our little girl? No parent wants to ever hear those words in the same sentence, it is a nightmare that we thought was behind us.


On the bright side, Izzy's type and grade of cancer, Grade 1 Neuroblastoma (also referred to as ganglio-neuroblastoma), is unlikely to return or spread. The tumor had intermixed cancerous cells, but it is considered very lowgrade and not likely to metastasize. The treatment plan hasn't changed: Izzy is still being treated for her OMS with the Rituximab (done now), monthly IVIG treatments and steroids for the next year, but no actual chemo or radiation is required at this point. She will need to have CT scans done every 3-4 months for the next 3 years to make sure there is no sign of any other tumor growth.


I have been praying about how to feel about this news that Izzy does, or DID, have cancer. Should I be angry at the hospital/doctors/whoever? Should we demand for someone to be held accountable for such terrible miscommunication?  What difference would that make? Today, I got the answer that I was searching for, it came to me in a song lyric on my way home from work.


"Every victory is Yours.
Savior, worthy of honor and glory
Worthy of all our praise
You overcame."


So to me, the bottom line is this: Whatever it is...heartbreak, divorce, failure, disappointment, or cancer. Jesus has already overcome it, the Victory is HIS. Isabella has been healed of cancer, that we know.

There is a song that I sometimes sing to the girls at bedtime that goes like this:

"I want to Shine, Shine, Shine.
Just like a fire fly,
God lights me up inside
With His Love.

I want to shine,
I want to glow,
So that everyone will know
That God's Love is inside of me
And when I share my love, it grows.

I want to Shine, Shine, Shine
Just like a fire fly
God lights me up inside
With His Love."

Lately Izzy won't let me tuck her in at night without singing this song at least twice. "Sing Shine!" she will say repeatedly until I cave in, no matter how late it is past her bedtime or how tired I am. There is a reason that God chose Isabella and our family for this. She has a light to shine.

Praying that you are blessed beyond measure.

Karen & Tom



OMS in the News

This CNN story talks a little about Izzy's neurological disorder, OMS. Please continue to pray. It is not easy keeping her sheltered from getting sick, right now Hailey has the flu and we have to send Izzy to Grandma & Grandpa's house so she doesn't catch it. Thank you for continuing to pray for Izzy's healing.

CNN Heroes: Giving a childhood to young cancer patients

Little Sheona

Friends, this little girl needs our help. Her name is Sheona, she is 14 months old. She was diagnosed with retinal cancer right before Christmas, so she was in the hospital the same time we were there with Izzy. I was blessed to get to know her mom, Samina, who is one of the most beautiful women I've ever met. Samina is from Pakistan, and her husband is American. They live in Holland, they have 2 little boys age 5 and 3, little Sheona, and they are expecting their 4th child in June. Samina's parents live in Pakistan, she doesn't have any family here and her husband's family does not live in the area. The experience we've had with Izzy's sickness has shown us how blessed we are to have such an amazing support system. I honestly don't know how we would make it through each day without our support system. Sheona's family does not have that.

Samina has to drive back and forth from Holland to Grand Rapids for Sheona's chemo treaments, she has to stay in the hospital by herself with Sheona because her husband needs to take care of their sons. They don't have any help, they are managing things entirely on their own. You might think Samina would be angry or depressed about the burdens they have with a seriously ill baby girl, being pregnant and having so much to juggle, but she has the most peaceful, captivating smile and unbelievably strong faith in God. Samina and sweet little Sheona have been a blessing and an encouragement to us, and we hope to return some blessings to their family.

At this time, they are trying to bring Samina's parents here from Pakistan to help them at home. They are working with the government to get their visas, but it will probably be late March or April before they can be here, and the cost is overwhelming. I am hoping to help raise the funds to pay for their airfare, which will be between $3,000-$5,000. I am also looking into foundations such as "Make a Wish" because they have programs for airline miles that have been donated, but Sheona's family does not qualify for this because she is under 2 years old (they help kids age 2 1/2 and up). If you have any information about how we can find donated airline miles, or if it is on your heart to help in any way, please contact me.

Most importantly, please pray for this precious baby girl. My heart aches for her and other children who are suffering with cancer. I heard a little boy crying next to us today at the hospital when we were there for Izzy's medication. It brought me to tears seeing how our innocent children are in pain, and for the parents who choke back tears and smile in front of our kids who are stronger than we are. Let our tears move us to action.

This is Sheona one month ago. Bless the Lord, O my soul, all my inmost being, bless His holy name! Psalm 103: 1-4 

Samina's family in November 2011 before they found out that Sheona had cancer. They had no idea how their lives would be forever changed. Please pray for another miracle like God has shown us with Izzy.

Medications Galore

Please keep Izzy in your prayers tonight and tomorrow. She is having her first treatment of Rituximab, which is a type of chemo. This is supposed to deplete the B cells that have created all of the havoc in her brain causing her OMS symptoms. She will have 4 weekly treatments starting tomorrow for the next 4 Thursdays, they are all day infusions through an IV at the hospital. There are potentially dangerous reactions that can happen, so please pray that her body will respond well to the medication. Pray that her side effects will be minimal, and that she will be comfortable throughout the day. She is also on steroids this week, which is definitely no picnic. She also had her IVIG infusion at the hospital on Monday, so this has been a rough week for her. She did awesome with the IVIG, she didn't have any problems the day of the treatment and she has handled the side effects like a trooper, although the steroids are making her feel pretty crummy right now.

Our prayer is that Izzy's OMS will be completely in remission by the end of February. Her neurologist came to see her at the clinic on Monday and he was very happy with the remarkable progress she's made. He commented that her vocabulary and cognitive skills are even more advanced than his own 2 1/2 year old daughter who he thought was developmentally ahead for her age. Izzy's agility and motor skills are great now too, so the treatments have definitely been a success so far. Our girl is climbing all over the furniture like a little monkey and running like a pro, when a month ago she couldn't walk or even stand up. She has recently started putting together full sentences, she has learned her colors and shapes and can name almost any animal that you show her a picture of! (maybe I'm bragging about our little smarty pants just a tad bit). We are feeling very blessed because I know there are a lot of families struggling with OMS whose kids don't respond to the medications like Izzy has. Some take months or even years before they are able to function normally again, some stop talking completely or continue to have problems walking. All of the medications Izzy has already had are designed to treat her symptoms, the Rituximab that she is starting tomorrow is designed to kill the root of the problems, the B cells that don't belong in her body. PLEASE pray that this works. She will need to continue to have monthly steroids and IVIG treatments for the next year, but we hope that she will only need one round of chemo.

Of the many blessings that we have seen through this ordeal, one that God is making very clear to me right now is that this time in my daughters' lives is so precious. I don't know how much time I've wasted doing unimportant things around the house, worrying about messes and laundry, being too glued to my phone or laptop, getting ready for the next day etc...It is so clear that when I am with my kids, I need to be with them mentally and stop multi-tasking. People always say kids grow up too fast, it's easy to take that for granted but it is too true. I'm just so thankful that God is showing me how to slow down and make the time to play together while I still can.

Please keep praying for the miracles to continue. God is so good, all the time.

Dress up time...Princess Isabella with the froggy tattoo

Fever, Fever Go Away

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

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.

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

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

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 

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

Undeniable

What a day. My baby has rested peacefully in my arms all evening. The surgery was a huge success, the tumor is completely gone from Isabella's body. Dr. DeCou was planning for a 4" incision, and it turned out that he was able to complete the surgery with only a 2" incision. The tumor was easy to find, and it wasn't attached to anything significant. Everything went perfectly, there were no complications.

When the tumor was removed it was studied for preliminary pathology testing, which showed NO cancer cells, not even ONE! It will be studied more extensively, but it is very likely at this point that the tumor is benign! They are calling it a ganglioneuroma tumor rather than the suspected neuroblastoma, which is malignant. Friends, we were told on Christmas Eve by a highly respected team of doctors that they were 98% certain that Isabella has cancer, to this...NOT ONE CANCER CELL.

There is no other explanation. This is the power of GOD at work!

We are experiencing a miracle before our eyes. We are in awe at the love and faithfulness of God, it's hard to find the words. Prayers have been answered!!!!!!!!!!!!!!!!! There aren't enough exclamation points to express how we are feeling! We believed that God could and WOULD remove the cancer from her body, Isabella was anointed with oil as God calls us to do as a symbol of our faith, and we rested in His grace. You, our friends, family, our church and many people whom we have never met and may never meet until Heaven have prayed for a miracle with us. God gave us a miracle today, it is undeniable.

We don't know what tomorrow will bring, Izzy still has a lot of recovery ahead of her. We don't know what these results mean for her Opsoclonus-Myoclonus Syndrome. We will continue to rest in the Lord's grace knowing that He will continue to watch over our sweet baby girl.

Thank you for lifting up our family in prayer...God is doing amazing things all around us, He has introduced us to special people who will be in our hearts forever, and He is changing lives through this miraculous experience. I can't wait to see what is next!

2%

Izzy is in surgery now (started at 1:40), we know she is in good hands. We prayed with the surgeon, and we have a very special anethesiologist and RN. We trust them with our precious girl.

The MIBG scan came back negative, they did not find ANY other tumors or signs of cancer. The tumor that they are removing today did not even light up on the scan! They told us on Christmas Eve that there is a 2% chance that her tumor is not cancer. Please pray that she is in the 2%!!

We believe angels are surrounding her now on the operating table. Thank you for your prayers.

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

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

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