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.