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.