Alexis F. - Quilt Finished in 2006

Born: April 11, 2000

Illness: T-Cell Acute Lymphoblastic Leukemia

Alexis F.' Story

written by mom Erica

My husband and I were married for 5 years before we got pregnant. We went through fertility treatments on and off for 3 of those years until August of 1999, when we found out that I was pregnant. On April 11th, 2000 Alexis entered our world and was everything that we had prayed for. She was a beautiful, healthy baby girl weighing 9lb 1oz and was 21½ inches long, she was perfect!

Alexis had ear infections from the time she was about 6 months old. She had tubes placed in her ears in May of 2001, then about 1½ years later she had her adenoids taken out and her 2nd set of tubes placed. I spent many nights rocking her and tapping her back just so she would sleep, if I fell asleep and stopped tapping she would cry until I would start up again.

In June of 2004 she had what we thought was the flu but it would come and go for about 2 weeks. Thursday July 1st we were getting packed to go away for the 4th of July weekend when our world turned upside down. It was about 11pm, I had just rocked her to sleep and carried her upstairs when she woke up and started to cry, then she started to panic and she couldn’t breath – her face started to turn blue and the fear in her eyes… I will never forget it! Austin, her brother, was here and he got the phone and called 911 for me. She came out of it on her own while I was on the phone with 911; I just kept rocking her and trying to keep her calm as well as keep myself calm. When the EMT’s got here she was sitting up and talking to them about her dog and cat and what ever else she could think of. They checked her over and said she sounded a bit congested but she was stable and it was up to us if we wanted to get her checked out further.

Tony was just getting home when the EMT’s were here and we decided to take her to Cameron ER in Angola to have her checked out further. As soon as they listened to her they said that she had a collapsed lung and that they needed to do a chest x-ray, her blood oxygen level was at 88. The x-ray showed a large dark spot in her chest, it could be an enlarged heart, tumor or several other things – I don’t quite remember because just hearing that there was something really wrong was a shock to us. They started making arrangements right away to send us to Lutheran Hospital in Ft. Wayne but while we were waiting, they needed to do a CT scan, that showed that it was not connected to the heart and it was more than likely a tumor. By this time it was 6am and we had both been up for 24 hrs just running on adrenaline. Tony rode in the ambulance to Ft. Wayne and I followed in the car. We were only there for about 2 hours, long enough for them to know that she needed more specialized care than what they could provide and they were arranging an ICU ambulance to transport her to Riley Hospital for Children in Indianapolis. I rode with Alexis and Tony followed this time, it was about a 2½-hour drive.

When we got to Riley they were waiting for us, we met so many people within the 1st hour it was overwhelming. By 7pm Friday they had her in surgery to test her lymph nodes and to do a spinal tap and bone marrow check. Finally we got up to her room around 1am on Saturday. By Saturday July 3rd we had most of her test results, she had 4 cancer cells in her spinal fluid and 34% in her bone marrow. They started steroids and some of the treatments right away on Saturday. Her diagnosis was T-Cell Acute Lymphoblastic Leukemia (ALL). She is considered high risk because it is T-cell and not B-cell – she was put on protocol 1961-C, it is one of the tougher arms because she was high risk. She will be finished with her treatments on October 21st, 2006. Her initial hospital stay was for 7 days and on day 4 they took another chest x-ray and they had completely shrunk the tumor…it was gone!

On July 16th, our 10 year wedding anniversary, Alexis underwent surgery in Indy to place her port in her chest. The port in under the skin and connected to a main artery, so when they need to draw blood or give her an IV they use this spot so she doesn’t get “pokes” all of the time. Most of her chemo is given through her port site. We then transferred to Mercy Children’s – 2 hours closer to home. She made it through the 1st phase alright besides the swelling from the steroids and the stiffness in her legs from the Vincristine. Consolidation was very bad for her she ended up in the hospital with a fever of 104° and that was on Tylenol every 4 hours for 10 days. They finally found that she had PCP Pneumonia as they have only seen 2 other cases of this in 15 years. She also developed Colitis from all of the antibiotics that she was on killing the good and bad bacteria. Finally after 15 days we got to come home for 4 days – she got another fever and we were in for another week. We were in and out of the hospital for about 5 weeks. When I say we, we never left her alone – we slept there, ate there and showered there – we are in this together.

It is truly amazing how she has been able to keep her sense of humor through most of this thus far. We had another 10 day stay in the hospital in January 2005, when she caught the flu, from me, I said we were in this together right?! This was right after she started what they said should be the last tough phase – delayed intensification. She was hospitalized in February for a few days as well. We have probably stayed in the hospital for at least 45 days since she was diagnosed. She finally started maintenance on March 14th and she will have the same treatment on an 84 day rotation until her completion date of October 21st, 2006. She is on steroids (prednisone 15mg 2x day) for the first 5 days of every month and every Monday she takes oral Methotrexate. She has been more sick to her stomach since she started maintenance than through most of her treatment. She has to take Kytril – antinausea medicine 2x day or she vomits, of course like a lot of things that our daughter has done through this, they have not seen this very many times. It may be a reaction to the oral Methotrexate, just not sure.

As for the steroids…well, if any of you have a child on steroids my heart goes out to you. She will be on them 5 days of every month until October 21st, 2006 and they last in her system from the 2nd day until about day 16. She gets very emotional and cries about little things, enough where you try to catch her early so you can get her calmed down so it doesn’t last for 15 minutes or she is incredibly ornery. We are still having difficulty getting her to gain weight. Her beginning weight was 39lbs., she got up to 47lb. In the beginning from the steroids but has since gotten down to 37.5 lbs. we have to give her Megace, to increase appetite, when she starts to drop. They don’t want to keep her on it any longer than necessary but they also don’t want her to weigh less than when she was diagnosed. This too we shall overcome; she is a real trooper and is our little shining star. She steals the heart of everyone that she comes into contact with.

We just take things day by day and thank God for each and every day we have. God has a plan and no one knows when or why but just know he is with each and everyone of us especially in our time of need. We thank God for all of the support from our family and friends as it has been so overwhelming. Our experience at both Riley and at Mercy Children’s has been wonderful – the doctors, nurses and support staff are truly amazing.

Written by Alexis' mom Erica in June 2005