Close

CaringBridge Is Funded by People Like You

Make a donation to CaringBridge

Honor Abby with a tax-deductible contribution to CaringBridge today.

Click here to make your donation.

Abby’s Story

It all started with a bump on her head that had popped up in late July early August. At first we didn’t think much of it, because kids get bumps and scrapes all the time. When it didn’t go away and became more painful Mom, (Tricia) made an appointment to go see the doctor. On Friday September 21st, 2012 Abby had the lump removed at the Allina clinic in Shakopee. When the doctor removed it she was not concerned. A biopsy was sent in and we still had no idea of how that lump would change our lives. 

Abby is a very active girl. When she isn’t running around with the neighborhood kids playing, she’s active with football, baseball, boating, camping, sledding, and many other activities. She enjoys playing Barbie’s, cooking, reading, watching movies, snuggling with her four dogs or throwing a dance party. She is a very thoughtful girl and always thinks of others needs before her own. She is also a very funny girl and after spending some time with her you can’t help but smile and laugh.

On September 26th, 2012 Tricia got a call from the clinic saying they needed to see us immediately, this is never a good call. Abby was diagnosed with Acute Myeloid Leukemia (AML). AML is a type of leukemia that is usually found in adults and it is rare for people under 40. AML is a cancer of the blood and bone marrow-the spongy tissue inside bones where blood cells are made. Acute means that it is a rapidly progressing cancer. The next day we were off to Children’s Hospital in Minneapolis to get further testing and to begin treatment. 

Treatments 2012-2013

A Day in the Life of Abby: 

When we were in treatment a day in the life of Abby looked very different. AML child patients require strong doses of chemotherapy. The chemo completely wipes out the bone marrow and patients require isolation, prophylactic antibiotics and antifungals and blood and platelet transfusions. A typical round began with 5-10 days of several types of chemotherapy followed by strict isolation in the hospital (confinement to one floor or sometimes just our hospital room) for 25 days or more. Abby would remain in the hospital until her bone marrow restarted and blood counts came back to a level in which they felt comfortable for us to take a mental health break at home. While we were home during breaks (7-10 days) Abby required daily flushes and heparin locking of her Hickman, sterile cap changes every 4 days and dressing changes at least every seven days. She had a G-tube placed in her stomach to administer medications or food when she wouldn’t eat. Abby took meds several times a day and sometimes required tube feedings. The treatment presented different challenges, including a blood clot in her right atrium and a very serious infection. Abby was brave during every step. During Abby’s last round prior to relapse she developed an Alpha Hemolytic Strep infection and spent weeks in the PICU. She was intubated, heavily sedated and on dialysis. Following that stay Abby had to learn to walk again. At home she was on tube feedings and took meds around the clock. We did her blood pressure at least three times a day and visited the clinic several times a week. Abby faced all of this with a fighting attitude. She missed her family, friends, school and her dogs while going through this treatment.

We were released from the hospital on February 26th, 2013. We were given the “all-clear, no more cancer” on March 25th, 2013. She had her Hickman and G Tube removed on March 27th, 2013. Her recovery from her fourth round was difficult with lots of physical therapy and clinic visits. 

Relapse and Treatment 2013-present

Abby relapsed in September 2013 and began rounds at Children’s in Minneapolis in September 2013. Abby had a Hickman placed prior to beginning treatment. She endured three more intense rounds at Children’s before moving to Rochester in February 2014 for a transplant. 

We moved to Rochester on February 10th and began pre-transplant chemotherapy. Abby was isolated in the transplant unit at the Mayo Clinic Hospital, St. Mary’s. Her chemo was more intense than during her rounds previous. She was very ill and required tube feedings well past hospitalization. Abby received her transplant on February 19th, 2014. Shortly afterward she developed early signs of Veno-Occlusive Disease, her liver was failing. She was put on a study as a compassionate use patient. Abby was moved to the PICU and was put on dialysis. She had a catheter placed in her neck and a PICC line placed in her arm. She recovered and was moved back to the transplant unit. We checked out of the hospital and into a place we rented in Rochester on March 23, 2014. We were able to move home to Shakopee on April 2, 2014. Abby had a weekly appointment at the Mayo Clinic and a weekly appointment with Children’s in Minneapolis. We continued to monitor her for fevers and signs of infection. If she spiked a fever of 100.4F or higher we had to immediately go to the Children’s ER for antibiotics and possible admission. Abby went home on tube feedings and meds several times a day, including an IV medication. 

After a significant improvement in her health in July 2014 she started to decline in health in August 2014. She had to have a PICC line placed in her arm, was on IV fluids and had several appointments a week both at Children’s in Minneapolis and at the Mayo Clinic. Her liver and kidney functions were concerning, she had significant GI problems and she began to show signs of graft vs. host disease of her skin. We have been dealing with Abby being on oral steroids and topical steroids to control the rash on her skin. She remains on multiple medicines to protect her from infection. She is unable to return to school because of the medications she is on. Abby is doing very well considering all she has been through. If you were to ask her how she was, even on the darkest day she always said “good” or “fine.” 

She is surrounded by her parents, her sister, grandparents, aunts, uncles, cousins and friends and even people we don’t know with constant support. 

We encourage Abby (and ourselves) to celebrate every day. We live each day for the little things, for the moments that matter most. For her future she is currently hoping to be a chef, to make movies, to learn to drive, to get married and have kids and to be a mom. 


Latest Journal Update

Monday

Hello all, 
A lot of people have been asking for updates so if I haven't texted you or called you back it's because I just now have the whole plan and this is the easiest way to get you the information. We will be discharged from the hospital today!!!

Abby is feeling A LOT better. She has had a ton of IV fluids (which work like magic) and lots of meds to help her feel better. She is no longer testing negative for Influenza B (she was positive on the 9th). She is now positive for Rotavirus, C. Diff and has a low positive for the nasty Cytomegalovirus (CMV). As of now they are treating her for the C. Diff. only as Rotavirus has no treatment other than treating the symptoms. It is a virus and will go away on its own. They are waiting to see if the CMV becomes more positive and needs treatment. We will cross that bridge if we get to it. 

Abby continues to have graft vs. host disease on her skin which leads to a suppressed immune system. She has one treatment left of the Rituximab (for hopefully treating the GVHD) and that will stay in her system for about 6 months. She is on Tacrolimus to suppress her immune system and the Rituximab will suppress it even more. This treatment will delay her regular immunizations so she is like an un-vaccinated infant with her immune system.

Abby is still attending school part-time, from 10:50-3:10 almost daily. Since Abby started getting the Rituximab infusions at the beginning of April she has had Influenza B and an ear infection and now C. Diff, Rotavirus and CMV. The doctors have recommended that since she will become even more immune suppressed, we keep her out of school until next Fall. This is very difficult news for all of us to hear. Abby has missed SO much school that she now has a disorder called "Executive Functioning Disorder," essentially it tells us that Abby has more trouble with things like: keeping track of time, making plans, making sure work is finished on time, multitasking, applying previously learned information to solve problems, analyzing ideas and looking for help or more info when she needs to. She gets really frustrated at school right now and one of the best things that would help her is to be in school. She will have an IEP starting in 5th grade (and it will follow her through college) for this disorder and it is something that she can learn the skills for and eventually she will learn just like other kids. 

Marty, Lorin and I are all thinking on it. We need to decide what is the very best thing for Abby as related to her health as well as what is best for her as far as being "normal" in school and having a social life. Any of our fellow cancer-parent friends have any advice?

We are packed up and waiting for the discharge paperwork to come. As soon as it does we will pay our insane parking ramp fee and hit the road for home. She will have tons of follow up appointments this week and her final Rituximab appointment this Friday. 
Please keep us in your thoughts and prayers. We need them, especially the rock-star herself. 
Trish
heart
29 people hearted this

Comments

10 Comments

Kathleen Giddings
By Kathy Giddings
Sending healing light to Abby and All ✨🌟💫
heart
1 person hearted this
Mary Quady
By Mary Quady
We continue to think and pray for all of you. You are an amazing family and Abby is an amazingly strong girl. As tough as it is at times, keep it up.
The Quady's (Troop 575)
heart
1 person hearted this
Linda Blackburn
By Linda Blackburn
Thinking of you all!!
heart
1 person hearted this
Angie/Alannah's Mom Peterson
By Angie/Alannah's Mom
I accidently posted my reply to you about school stuff in your guestbook area. lol.
heart
1 person hearted this
julie nohre
By julie nohre
Poor thing. Will continue to pray that she gets better quickly
heart
1 person hearted this
Donna Matthewman
By Donna
Poor poor thing!! Makes me so sad.
heart
1 person hearted this
Stephanie Madden
By — last edited
Trish,
Huntington Learning Center in Chanhassen is helping my son with Executive Functioning and with assorted learning skills he was behind on. He also was very frustrated in school. Give them a call and if nothing else, they are so kind, they will have suggestions for other special schools she could attend. One of the gals there is also very knowledgeable in the online school programming. It does cost but if you partner it with other approaches, I bet they could get Abbey back on track within 12 months, especially if you have other district support through her wellness and IEP. And best of all, you would have her tutored at her pace and when she is feeling well. It costs about $200-250 to have her evaluated and from there they will lay out a plan for you. For my son, doing this evaluation first, accelerated the school district IEP process. You can also then balance the IEP information with what HLC has evaluated her for and to find a 'core' best value fit to supporting Abbey. HLC has a great approach to building the student's self esteem back up by reinforcing the foundation she already has in fun and challenging ways and then transitioning the student to grade level. Not all HLC are the same, so I can only speak to the one I have experience with. The tuition is tax deductible if that helps also. My son was completely at shut down, and we still are struggling, BUT he is in 10th grade and it went unchecked too long. I am going to put my older daughter in program for vocab/reading/writing - areas she struggles with.
heart
2 people hearted this
Stefanie London
By stefanie london — last edited
First, Abby is a STAR and so is her family. What you have already conquered is above and beyond courageous. ABBY WILL GET THROUGH ALL THIS --SHE'S AMAZING!!!! Our daughter got an infection before her BMT and ultimately, despite 100% successful transfer to the donor's blood, a lung infection was the cause of her passing. I don't want to scare you---but we have a very conservative perspective because these glorious children now have no immune systems and cannot fight infections that we resist every day. Abby doesn't realize that school is almost out for the year AND that not going to school doesn't mean her healthy friends can't visit her. That was one way we were able to appease our daughter, who like Abby had to be involved in social events or she felt she was missing out! Abby is doing so well and she looks beautiful. She WILL catch up with school. She's a sharp girl and highly motivated. Right now the focus needs to be staying well. I don't know if your donor made any T-cell donations and whether that as a booster is an option. Our donor did also donate a boatload of T-cells which we would have used if needed. You are at a top notch children's cancer center, so you can be comforted that they know what they are doing. We were at St. Louis Children's Hospital which is also top notch. Bottom line, infection is the enemy now. It's so hard to deny these children small pleasures, but perhaps the nurses and dox can think of creative ways to share time with others in a healthy manner. much love and prayers.
heart
1 person hearted this
Julie Huspek
By Julie Huspek
Thinking of all of you right now!! Go Abby Strong...sending love and prayers!!
heart
1 person hearted this
Sarah Simpson
By Sare
I'm glad you're going home! One challenge after another for you guys. I will see you soon.
heart
1 person hearted this