Thursday, January 20, 2011

Kindred Spirits: Part 3 (Hailey)

Hailey is getting ready to celebrate her very 1st birthday this month! Her family and friends will be celebrating on the 29th of this month. This party will not only be celebrating her birthday, but thanking God for the strength that Hailey has shown throughout her "story". Hailey is fighting neuroblastoma and is quite possibly the cutest little girl on the fact of the planet, next to my own daughter, of course! Hailey is the daughter of a good friend of mine, Amy and her husband , Bob, and is the youngest of 3 kids.

It all started in October of 2010. Hailey just changed. That is the best way to describe it. She was no longer the happy, sweet, easy going little baby that her mom, Amy, knew. She was tired more, very irritable, and seemed to be in pain. Amy took Hailey to the pediatrician and explained that she felt like something was wrong. It got dismissed as teething!!

For the next week and a half things just got worse. She refused to crawl or try to stand up like she had been doing a few weeks earlier. She also started to sit leaning to one side. She would pull her leg up in pain, she was not peeing as much and she was very constipated. Then one afternoon Amy noticed some swelling in Hailey's groin area while changing her diaper. It really scared her so the next day she went back to her peds doctor and Amy told the doctor that they were NOT leaving until they found out what was wrong. She first thought it may have been an infection in the hip joint so she ordered x-rays and some lab work which showed nothing wrong. Thank God that through a course of events that day Hailey was sent to Pitt for more workup. That was on November 3rd.

The attending doctor at Pitt attentively listened to Amy as she explained everything that she had noticed in Hailey. He also saw the swelling himself which had actually started to discipate. He told her that "moms are always right" whenever they think something is wrong. Amy felt reassured that they would not be leaving Pitt without a diagnosis. Hailey had lots of labs done and none of them showed anything out of the ordinary. There were no signs of any infection. The doctor then ruled out the hip as the cause of her symptoms and thought it could be a hernia so he scheduled an ultrasound of the groin area. The radiology doctor saw no hernia, but did mention that her bladder was really distended.

So again with no answers the doctor ordered an MRI of the groin area. Amy noticed it was taking a lot longer then they had originally told them and then the pediatric sedation doctor said they had to scan further up into the abdomen and chest area. After the doctor walked off, Amy says it was then that it HIT her...why would the do that unless they found something?!? Amy tracked her down and she said they found a mass. After that things were a blurr.

Her doctor came down and said he was having the oncologist meet with Bob & Amy as soon as Hailey got back to her room. When they met with the oncologist he told them that just by looking at her scans that he knew for certain that it was malignant. That was November 5th, just 1 day shy of Hailey turning 9 months old.

I remember being up there with Amy on the day Hailey had her biopsy with another friend of ours Renee. The whole way up, Renee & I just wondered what to say. I shared with her about how that could have been us, as we had just had JoJo's 1st EEG. And it was on that ride up to the hospital where I committed to doing whatever I could to help this precious family. When we got up there, we prayed, we cried, we even managed to make it down to the cafeteria for a bit. My heart broke for Amy and Bob, and in that moment I felt completely helpless. There are some things that will be forever etched into my heart of those few hours Amy, Renee & I spent together. The picture below is of me and that sweet girl during church the week that I got to spend with her so Amy could go to Bible Fellowship Group. I loved every second of it, and she LOVED the Little People nativity set (not to mention my fantastic song entitled "Hailey-bug", which is what Amy calls her!)

A few days later after the biopsy the doctors gave "it" a name. "It" was Neuroblastoma Stage IV (non-adrenal), and later would find out it was good biology....MYCN non-amplified, hyperdiploid, and favorable. LOH of 1p and 11q chromosomes were unable to be determined for unknown reasons. Praise God Hailey is only considered intermediate risk disease due to age.

Hailey is in the process of Chemotherapy, and has just finished her 4th round. The original plan was to do 4 rounds, then a scan to see more chemo would be needed or if they could do surgery to remove the tumor. Amy has been told by the doctors that most likely Hailey will have some of the tumor remain inside of her, and it will become benign over time. But this idea is tough for any parent to imagine, knowing they didn't remove all of it.

Amy says that it's hard for her to know that for the next few years she will have to go back and do MRI scans every 3-6 months to see if the tumor has grown and/or spread, and that it's just hard to just lay that at the feet of Jesus, which is totally understandable. Please remember to pray for Hailey, for her parents Amy & Bob, and for her older brothers Cameron & Carson! To follow Hailey's updates & to leave encouraging messages, you can visit her CaringBridge page.

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