^^Angel^^ Genny I. - Quilt Finished in 2001

Born: January 26, 1997 - Passed: December 10, 2000

Illness: Acute Myeloid Leukemia (Type M7)

A Special Thank You From Genny's Family!

I wanted to let you know I received the quilt.  It is gorgeous!!!  I sent it to church to be displayed so everyone could see it.  I intend on hanging it in the hallway, so It can be seen and won't be discolored by the sun.  I really appreciate it.  I hope to send some quilters your way after they have seen what gorgeous work eveyone does.

Thanks again,

Barb (Genny's mom)

Genny's Story

written by mom Barbara

Genevieve was born January 26th, 1997 in the early morning hours of Super Bowl Sunday. It was an uneventful pregnancy and delivery. Genny was the picture of health, until her second birthday. That's when "things" started happening.

She constantly was getting this cold or that flu. In April of 1999, things came to a head. I wasn't getting anywhere with her health and her current doctor, so in frustration, I switched to a different pediatrician. She knew immediately something was really wrong and did numerous blood tests. She is the doctor who sent Genny to Hope. Just prior to Genevieve's appointment, she stopped walking and didn't walk again for another 2 months.

Genny was diagnosed with Acute Myeloid Leukemia (type M7). Unfortunately neither of us was a good match for Genny to have a Bone Marrow Transplant from one of us. Genny underwent 6 heavy rounds of chemo, which ended in September of 1999 and 4 horrible infections in between treatments. Several of which put her in a very critical condition. Genny did go into remission after the first round of chemo and remained there until her six month bone marrow check. It showed that the leukemia had come back, so on to transplant.

Genny once again had to undergo induction chemo. Another even heavier round of chemo had to be given to re-induce remission. Genny started chemo on Good Friday and on Monday had a new central line inserted. She needed both lumens working for transplant and I wanted her to have the surgery while she was still strong. After 7 days of chemo we went home. The next day, Saturday, Genny spent all day curled up in someone's arms. She couldn't open her eyes because the ARA-C had irritated them and made them supersensitive.

On Sunday morning I woke up to blood soaked pajamas on Genny. The site from her original central line was bleeding. We rushed her in for a transfusion. The bleeding continued and was collecting under the skin. The night nurse was very concerned, but the resident didn't seem to think anything of it.

By the morning when the oncology doctor saw it, it had worsened. He called in a surgeon and it turned out to be Necrotizing Factitious, flesh eating bacteria. She had to be rushed into emergency surgery to cut it out. Luckily, she didn't go into septic shock. They tried to save the central line and left it in place. By Friday they wanted to clean up the site. She was running a fever, so the central line had to be removed. The surgery was long and tedious and they also took several "samples" from her side that were discolored. The doctors were concerned that it might have spread. The biopsies came back clean. The surgeon also inserted a temporary line in her upper thigh. Yuck! Genny really hated that. The surgery marked the start of her ten days in ICU.

Every day we would give Genny "silly drugs" as we called them. The drugs were amnesia drugs, so she wouldn't remember it. They were really fast working and short lived. I stayed with her through everything. The surgeon expected me to land on the floor during the first dressing change. Boy, did I surprise her!!!

All through this there was a plastic surgeon, an infectious control doctor, a surgeon and the oncologists, who rotated weeks. They all wanted a peek at the wound. By the end of the week, I was doing the dressing changes myself. The nurse's job was to give her drugs and hold her hand. The doctors, and residents, mostly just looked. I surprised many people during this, and so did Genny!

The other complications Genny experienced were drug reactions. She had a rash all over her body, fevers and swelling. It took a week of high fevers and Lasix to eliminate the extra fluid, etc. The doctors finally decided that it had to be from a drug reaction; so, they removed several drugs and changed others. There was an immediate improvement in her condition.

Once Genny had the skin graft to repair where the Necrotizing Factitious had been cut out, she was in a holding pattern, watching the graft until the pressure dressing was removed. The great news was after the skin graft. The surgeon was able to insert a new central line in her chest and the bone marrow aspiration showed that she was in remission. Some 8 weeks later Genny got another bone marrow check and it was still normal! This shocked everyone! So, Genny received some "hold over" chemo until the stem cells were harvested from the donor. The most incredible news about all of this is that while Genny was in her holding pattern, a new donor became available and she looked like a perfect match! The doctors were still getting antsy and were ready to proceed with a traditional transplant using cord blood cell, when the results came in. I knew she would be perfect, they just thought I was crazy. She came in as an 8/8 and a second one showed up and tested a 7/8. Wow! So, the day before Genny was to receive conditioning treatment for her transplant, we put everything on hold.

The next step was on to the transplant. Genny would be getting a Mini, which relied heavily on the donor cells and not so much on the chemo. This was a good thing, since she was having some residual heart problems. Genny's transplant was scheduled for August 10th, 2000.

On August 10th, 2000, Genny received her new cells. Everything went wonderfully. The transplant took place and within weeks, Genny no longer needed transfusions. What a miracle! Then, suddenly one night Genny got a fever and I ran her into the ER. We were still in the apartment, just blocks away from the hospital. We had even been talking about being home for Halloween. They drew a blood sample and that's where things went wrong. (Since Genny has been gone for quite some time now, I must say I am trying to "forget" all of the terrible events of those last few months).

Let's just say, that anything that could go wrong, did. Even extremely rare things happened to Genny. Somehow she always managed to pull through. Every time we thought things were getting better, another terrible thing would happen. Genny spent Halloween and Thanksgiving at the hospital. She would be in 3-4 weeks and then get to go back to outpatient. I was the nurse and chief caregiver. When Genny was an outpatient, I wouldn't sleep much at night because I had numerous meds to give her. I usually spent the day in the stem cell outpatient clinic sleeping on the gurney with Genny, or asleep in the chair. She always had Grandma, Grandpa or Daddy there to keep her and I company.

The last weekend Genny was with us, Daddy was in Chicago with us, at the apartment. My mom left Friday night and Greg arrived on Saturday. Sunday was a beautiful day. I was at my wits end, because I had been "beaten" the week before. Genny had numerous bone fractures because of all the drugs and treatments. Simply holding Genny, would fracture her bones. Even though they were sure I wasn't abusing her, I was questioned! That was the end of me. I had taken all I could and felt the fight just drain right out of me. I had continued to fight and wasn't willing to give up, but that did me in. Genny was released on Monday and we spent the last week as an outpatient.

Genny played "remember when" with Grandma all week. When I look back, I believe that Genny knew it was time. She wanted to make sure we didn't forget a thing and to know that she didn't either. I also believe that she was waiting for Daddy to be there too.

We stayed across the street from Lincoln Park Zoo the entire time we lived in Chicago. We were also daily visitors when Genny was an outpatient. Sometimes we didn't even make it up the apartment the day she was released and went right there. Since it was so warm out, we went there. Genny's favorites were the elephants and to feed the ducks. People were required to bring us bread whenever they visited so we always had a supply. That was Genny's favorite thing to do.

Back to the last weekend, Greg arrived on Saturday and Sunday I went for a walk. I ran out to the grocery store to get milk. It was a very sunny and mild day for December. I came back and suggested that we go for a walk. Genny and I went to the zoo, and Greg found us a little later. She wanted to leave, but wanted to feed the ducks even more. On the way out she wanted Greg to carry her. This was something Genny had always wanted. On her Wish Trip to Disney, she hardly ever wanted to ride in the stroller. Genny always wanted Daddy to carry her. But lately, Genny only wanted to ride in the stroller, not to be carried. I think it hurt and she didn't want to tell us, the bone fractures and all. Anyhow, she asked Daddy to carry her back.

We spent the afternoon just hanging out, reading and all those things we liked to do. Greg and Genny were practicing saying the alphabet. Genny was having difficulty talking clearly, she had palsy on one side of her face, and yet another complication she was suffering from. Greg fell asleep that night with Genny snuggling on his shoulder.

Some time later, I noticed that Genny didn't seem just right. I tried taking her blood pressure and couldn't get the machine to work right, at least that's what I thought. I paged the on-call transplant doctor, but before he could even call me back, I had called an ambulance and had to start CPR. Genny never responded to anything and was pronounced at around 11 p.m. in the ER at Children's. It was December 10th, 2000.

Around 3 a.m. we went back to the apartment and crashed for a few hours before we rushed home. Genny has a way of sending us a snowstorm. We had to leave the hospital and not take the extra "free" day when she was born, because we had to beat a snowstorm to get home. Same thing here. We ran out of the apartment just to make it home. We even managed to get back before the service, because I wanted a few things.

Genny was put to rest on December 14th, 2000. Genny had her favorite Sarah Berry Doll, an elephant and a duck, just like at the zoo, with her forever! We also decorated her casket with stickers as we all said goodbye. My brother spent his 30th birthday being a pall barer for his niece. It was 2 weeks before Christmas and 6 weeks before Genny's 4th birthday. There is a lot to be said for being numb with grief. That Holiday Season was by far the worse.

Genny even sent us snow again on her birthday. Not a little snow, a don't-leave-the-house-snow. In March 2001, Genny sent snow again. Just a few flakes, but enough to say, "Hey, I'm here!" Our friends had a fund raising event for us so we could get that beautiful headstone for Genny and she wanted us to know she was there.