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