Make A Child Smile

Hannah's Story
written by mom Lisa

Hannah was born on October 30th, 2002 at 1:45am at Morton Plant Hospital in Clearwater, FL. She was born exactly 32 weeks. When Hannah was born she was not breathing on her own and had other premature problems. She was stabled in the room, to then be rushed to the NICU for her special care. Later that morning, about 7:00am, the doctor arrived to tell us that they were doing everything that they could to keep her healthy. They stated that she was taking oxygen and somewhat breathing on her own. She was also jaundice and had other premature problems. He then recommended that Hannah be sent to All Children's Hospital in St. Petersburg, because they were the best for her. Hannah did arrive at All Children's around 1:00pm and from there she did wonderful. Day 2 she went out of intensive NICU to the upstairs NICU. The day before Thanksgiving we took our little girl home without any monitors or medication.

Hannah flew through everything from crawling to walking without a hitch. She was picture perfect. Then came Memorial Day of 2006, and everything starting going wrong. Hannah's grandmother noticed that Hannah's left eye was increasingly partially closed most of the time and then I noticed that she was starting to favor the left side. She would talk to you with her head to the left and run using her left right eye as guidance.

We took her to the ER and was told she was fine because she was showing no symptoms and acting happy. So we took Hannah home about 5:30pm and started our barbecue. After we finished eating, Hannah played on the swings. After she finished, she fell straight to the ground and was unable to get up. We then took her back to the ER and she had a CAT scan and that scan provided was clean.

Then the Wednesday after, she was seen by her regular doctor and that doctor thought that Hannah might be having seizures. She sent us to the neurologist. Then Monday, June 5th, 2006 she had an EEG and that was clean too. The Neurologist then sent us for an MRI to see if she might be having a type of migraine. On June 7th, 2006 Hannah had the test and after the test, the doctor pulled me in another room and showed me her brain scan. He then showed me a dark spot on the brain. Then came the words "Your daughter has a brain tumor, and we cannot operate". I just broke down. We were then sent to the ER to wait for a bed to be cleared upstairs. During this time, the Specialist in Neurology told us the name of her tumor, Pontine Glioma, a tumor of the brain stem. She then stated "Hannah will need radiology and chemo and this will help prolong her life". I asked "What do you mean prolong??" and she then took us out of the room and told us that our little girl had 1 year to 5, to live. That broke me further.

Then on June 8th, 2006 we were hit again by her Oncology Specialist that our girl had 12 months to live. I can tell you that there is no greater hurt in this world than someone telling you that your only daughter is going to die and it would be soon. I was not sure I could say goodbye. Plus, how would I keep her memory strong for her then 9 month old brother? Hannah started radiation right away!

On October 3, 2006 Hannah had a procedure called the Gamma Knife. It seem to do a pretty good job at keeping the tumor at bay. On September 24th – 30th of 2006 Hannah had her Make A Wish trip to Give Kids the World in Orlando, FL. It was wonderful. We all arrived on a Sunday. On Monday she got to be treated like a princess at Bippty Boppity boutique at Downtown Disney. She was dressed head to toe as Belle. She was beautiful. After that, we went to Disney World and she loved every minute of it. This was one of the best weeks in her entire life. She was treated like royalty and not once did we ever have to think of Hannah as a cancer patient.

We did everything in 2006 for her. We lived every minute to the fullest with her birthday, Thanksgiving, and Christmas. Then on May 7, 2007 Hannah had an MRI and that day the doctor in clinic told me the most horrible news I could hear. Her tumor was more aggressive and growing and we needed to change her to something else. This is when Hannah had to start Temodar with Vinblastine. The doctor told me that the tumor was growing slowly and hopefully with the new drug we can stop it from growing or keep it slow.

The following week we went back into the office for labs and oncology visit and were told of a brand new trial to give her. It was called Avastin and Irronotican. They are very powerful chemo’s that showed real promise in brain tumor cases and were now being tried on DIPG’s. I said ok and Hannah did 3 rounds of that drug. On June 13th we learned that the tumor was growing again and that we had no more options for Hannah. I was horrified at this. We were told that a brand new specialist was coming on board on August 18th and to make an appointment with her.

August 18th was another day that was just horrible. The doctor was wonderful, but the answer was still the same for Hannah. There was no proven drug out there for her that would stop her tumor from growing. We talked with Hannah’s Hospice nurse and it was decided that we should go ahead and make funeral arrangements now. She said this way it is out of the way and you can spend all the time with her now and not worry about it after. We also that day put in a DNR (do not resuscitate).

September started out good for Hannah. She got to go on a camping trip with her family to Disney’s Fort Wilderness Campground. She loved every minute of it. It was also that time that she started to decline in walking. She was using her wheelchair stroller more and was unable to walk long distances. During this time Hannah also started a Toy Drive called the Ladybug Toy Drive, so she could earn toys for other sick children like herself. She was such a brave little thing.

On September 21, 2007 Hannah had a feeding tube inserted because she had no more gag. She was a happy little girl that was playing with her cats and smiling, all she could not do was swallow. She did great through the whole thing and was fine with the tube. On the 22nd however, Hannah had a fever at 5:00am of 102.1. I let it go at first because she was under tons of covers and when I took them off the temperature dropped to normal. Finally she went to sleep at 7 and me at 7:30. We awoke again at 10:30 for feeding and medicines. Hannah's fever was up to 100.9. I decide it was time to call Hospice. The nurse asked if she should come out in a little while and that she was going to call the doctor to fine out what to put her on for infection. This way she did not have to travel to the hospital again.

Then Hannah started breathing harder. She could not seem to catch her breath. It was horrible. I knew that something was wrong. I called Hospice back and they sent a nurse right over. It took the nurse and one angry mother, 1 hour to get a hold of a doctor!!! Finally it was decided that Hannah needed to get to All Children’s Hospital. I told the nurse that I was calling for an ambulance because I was too scared to drive her in this condition.

Long story short, it turned out that Hannah had aspirated on her formula from the night before and she now had pneumonia. A few days in the PICU on a ventilator we decided the next step was to get Hannah into one of Hospices Houses. On 9/25/07 Hannah came successfully off the ventilator and the next day she headed for Woodside Hospice House.

All was great until Monday 10/1/07. Her breathing became irregular and she was in more pain. Monday night she and I did not sleep at all because she was in pain all night long. On Tuesday, Hospice threw Hannah her 5th birthday party for friends and family and the morning before we had her feeding tube removed, so she could start her process of letting go. We also put in an access line through her port so she could have pain medication continually. She slept through her half party, but she was there, and in no pain. After that day, Hannah’s body kept shutting down a little bit more. Wednesday she slept through the whole day, but her breaths were now so irregular that they thought she might pass before the night was over.

Thursday 10/4/07, we all woke up to find Hannah turning gray. She was now at the last stage with her heart starting to fail. This whole day we were all by her side. We told her everything from "it is ok to go" to "we love you forever". They took her little bit of oxygen away at 9:00am, by permission of me. At 1:40pm my little Hannah sighed and left this world. She earned her wings with her daddy beside her and her mommy holding her hand.

I knew the moment it was over, and informed everyone in the room that she was gone. I had that empty feeling, that hole that you feel when something is missing. I picked her up and held her crying for 30 minutes. Hannah was my ultimate gift. She was given to me by God and I will cherish that little girl for always. I miss her everyday. I cannot go through a picture without thinking about the moment it was taken. I wake up and say Good Morning Hannah and go to bed at night saying Good Night sweet Hannah. I talk to her daily and I look for the signs she is ok. So far I have had a couple, but look forward to many more. Thank you all for caring and loving my daughter the way each of you have done. She was really grateful for everything that everyone ever did for her. This is why she and I started her toy drive, because she wanted other kids to feel the same she did when she got something special. Thank you!