Good News for Friday!

After a grueling week of tests, medication side effects (not to mention the struggles taking them because they taste so awful), sedation hangovers, sleep deprivation and lots of tears...we finally got some GREAT NEWS today! Yesterday, Izzy had a bone scan and bone marrow test to look for signs of her cancer spreading to other parts of her body. Yesterday we also met with the clinic nurse at Helen DeVos Children's Hospital treatment center because Izzy had been throwing up every time she eats, and has been downright miserable from her medications. One of the RNs, Julie (an angel), gave us some great advice for altering the times of her medications, which we tried for the first time last night. She had a rough night of sleep, waking up a few times crying but thankfully no vomiting.

So for the good news! Julie just called and said that the bone scan results are in, and there is NO SIGN of cancer in her bones! Praise God! We are still waiting for the results of the bone marrow test, which we will receive on Tuesday or Wednesday, and we are hopeful for more good results.

More good news is that Izzy is feeling great today! The adjustments to her medication seems to be working, and her tummy feels much better! She is happy, playing patty cake and puzzles with Hailey and Kaye Kaye (Kaleigh) and laughing. The sound of her laughter brings tears to our eyes, it's been a long time since we've heard her sweet laugh.

And as if that was not enough good news for today...an aquaintance of mine, Laura, reached out to me a few days ago because she read about our story on Facebook. She works at VanAndel Research Center and was part of recruiting an amazing doctor to Grand Rapids. Dr. Sholler is a specialist on recurring Neuroblastoma and another similar type of cancer that affects children. Dr. Sholler is not even seeing patients yet, she is here doing research. Laura spoke with Dr. Sholler on our behalf yesterday and explained our situation to her (she was on vacation and still took the time to speak with Laura). Praise God, we just found out that  Dr. Sholler wants to work together with Isabella's doctor for her to participate in a special research study! She wants to meet with us the day she comes back from vacation, next Thursday. I don't know what this will lead to, but possibly it could lead to further advancements in treating her condition or other kids with the same thing.

We serve an almighty God, He is our Healer and Comforter. He is hearing our prayers and is at work in ways we cannot even fathom. We will continue to praise Him through our suffering and believe that He is working miracles all around us and in us.

Thank you all for being a part of this journey with us.

A little background

For those who haven't heard our story, our daughter Isabella Joy has been diagnosed with Neuroblastoma, and she has Opsoclonus-Myoclonus Syndrome with Ataxia. The symptoms of OMS are caused by the Neuroblastoma tumor, which is a type of cancer. OMS causes her to have uncontrollable eye movements ("dancing eyes") and Ataxia is the term for her incoordination and loss of balance. To summarize it, Izzy has a peanut-sized tumor in her lower abdomen/pelvic area. The tumor may have been there for months, a year or since birth, there is no way to know. Recently, her body has discovered the tumor as being a foreign object, and has launched an attack with antibodies. The antibodies are also attacking the part of her brain that controls her eyes and her ability to walk.

Izzy has been a perfect baby, always healthy and very happy. On December 15th, Izzy's 2nd birthday, her big sister Kaleigh noticed at dinner that Izzy's eyes looked different. She noticed a few slight "jiggling" movements. We didn't even notice it at first, and just wrote it off as no big deal. Then 2 days later, on December 17th, Izzy went to family Christmas party with my parents, while Tom and I finished up our Christmas shopping together. My dad noticed that Izzy had a little stagger in her walk a few times. We thought she must have an inner ear infection that was affecting her equilibrium. Ironically, she had a 2 year check up with her pediatrician that following Tuesday, December 20th. Her staggering seemed to be a bit worse, and he definitely noticed the Nystagmus (dancing eyes). He immediately referred us to a pediatric opthomotrist and scheduled an MRI. We met with the eye specialist the next morning, who determined that her optic nerves were not swollen, which would have indicated a brain tumor. The MRI was scheduled for Friday morning, Dec. 23, and we left the eye dr's office with instructions that if her symptoms seemed to change significantly before Friday that we should take her to ER. We were officailly "freaked out" and spent the rest of the evening in tears. The next morning we woke up to get ready for work, and Izzy was having a difficult time walking. She was literally falling down and bumping into things. So we made the call to take her to ER, where she was admitted. After two grueling days of tests (multiple IV attempts, an MRI, CT Scan, Lumbar Puncture) we were informed on Christmas eve that they found a small tumor in Izzy's lower abdomen/pelvic area.

Friends, I thought I have experienced heartbreak in my life. There is nothing that can compare to this heartbreak...there are no words.

At this point we are working with the team at Helen Devos Children's Hospital to determine the details of her situation. Every case is different, so they have cautioned us not to "google" stories about other children with Neuroblastoma or OMS, as it can lead to false hope or false dread. We are waiting for details on her test results. We are trusting in God.

If you are interested in learning about Isabella's condition, this website does a good job of explaining some of the details and treatments. http://omsusa.org/pranzatelli-Brochure1.htm

I have said this before and will continue to say it, we can FEEL your prayers. We are being lifted up in a way that is supernatural. Please continue to pray for our baby girl, and pray that God will touch lives through this in ways that are permanently life altering. God is at work, He is with us through this. Izzy has a story to tell when she grows up about how Jesus held her hand through this battle.

Thank you for being a part of our story and for remembering Isabella Joy in your prayers.

Karen, Tom and big sisters Charley (27), Kaleigh (19), Hailey Faith (5) and little sister Emma Grace (2 months)