Hi my name is Jordan Nicole Davis, and I’m 17 years old! My family includes my mom and dad, Paul and Tara, brother, Nick, and sister, Jillian. In June 2009, I discovered a small bump on my bum, but I was a little embarrassed by it so I kept it to myself until August when it got large enough and most uncomfortable.

My mom and I were out shopping, and I started crying because the pain became very bad. I showed my mom my bump, and she took me to Urgent Care on Saturday afternoon August 29 2009. The doctor working that afternoon told us that he thought I had a callus because I wore my jeans too tight. That didn’t make sense to us so we went to our clinic where we were then told that it wasn’t a callus. The doc thought it might be a cyst but wasn’t sure, so he sent us to a surgeon.
On Sept 4, 2009 we had a 9am appt with Dr B. She said it wasn’t a cyst but wasn’t sure what it was either, so I ended up with a CAT scan. A solid mass that looked like a tumor was seen on this CAT scan. We were then sent to the University of Minnesota Children’s Hospital Fairview. I was at the ER by 2pm, in OR prep by 4pm, surgery by 5pm, and just after 6pm Dr H told us that I had a small blue cell cancer. We weren’t sure yet what type or what stage but I would have to be admitted. After a very long holiday weekend filled with amazing amounts of tests and crazy things happening to us, Dr N gave me a final diagnosis Stage IV Alveolar Rhabdomyosarcoma.

I was poked and prodded but kept an amazing sense of humor about the whole process. I started Chemo treatments less than a week after diagnosis. My treatment protocol lasted about 54 weeks and included chemotherapy, surgery, and radiation. Only 6 short months after finishing treatment, a follow-up scan showed my cancer was back! This time it’s the size of a kidney and inoperable as it sits, so I have recently started chemotherapy again! My protocol this time will call for 32 weeks of chemo with the hope that it will shrink the tumor down to an operable size so it can be removed. I will then have to have radiation after surgery to help control it locally.
My family has been by my side throughout my entire journey. Miracles happen everyday! Please pray that I will beat this cancer once and for all!

In the spring of 2009, Anna Rogotzke was two years old – a seemingly healthy, very happy child who seemed to “sparkle” and light up the lives of everyone who knew her, especially her dad, mom and two older brothers. She seemed to want to sing, dance and giggle her way through life! Three months after her second birthday, a tummy ache eventually led to a diagnosis of stage 4 Rhabdomyosarcoma. A grueling plan of treatment which would take a minimum of 54 weeks was laid out for her. For the next year and then some, Anna was in and out of Children’s Hospital in Minneapolis for scheduled treatments or for complications caused by the harsh treatments.

Though there were many difficult days and more suffering than a little girl should ever have to endure, Anna handled her treatment better than it would seem a child ever could. Yet there were many days that she just felt so horrible, and it seemed that her “sparkle” was missing. As soon as she would improve a little, though, her smiles came back, too, and as much as possible Anna found joy in every day and gave everyone else reason to be joyful, and HOPEful as well.
Anna responded well to her treatment, which included several surgeries, many rounds of chemo, and weeks of radiation. When her treatment plan was completed, she had No Evidence of Disease! Treasured were the days free of hospitals and clinic visits, days when it seemed that nothing could take away Anna’s “sparkle” ever again! Three months after her treatment ended, her scans still showed No Evidence of Disease, and everyone was prepared to enjoy and treasure every “sparkling” moment with Anna for years to come.

Then, only one month after Anna had clean scans, symptoms led to a return to the emergency room where it was discovered that Anna’s cancer had come back with a vengeance. First, second and third opinions all stated that there was little to no hope of a cure, to enjoy every day and to prepare for the worst. The last resort chemotherapies had little effect on this monster that had invaded the body of “Princess Anna.” On December 12, 2010, on her fourth birthday, Anna was called home to heaven.

Anna will always be remembered for the way she loved life, even during the difficult days. Her songs, dances, giggles, hugs and kisses are treasured memories for all who loved her and were blessed to have their lives touched by hers.

On July 17, 2009, Bailey was diagnosed with leukemia at the age of 13. After several frustrating months and seemingly endless doctor visits, the mysterious symptoms seemed to make sense. The swollen lymph nodes in her neck (we thought it was mono), the aching joints, the exhaustion. Now we had a diagnosis of Early T-cell Acute Lymphoblastic Leukemia (ALL).

There are subgroups of ALL that involve either the B-cells or the T-cells. Both are needed to fight foreign bodies in the blood and are “early” (immature) or mature. The classification of “Early T-cell” is relatively new and the treatment protocols untested. Bailey began treatments immediately at the University of Minnesota Amplatz Children’s Hospital and underwent several months of chemotherapy. However, these Early T-cells proved stubborn and were not responding to the chemo as her doctors had hoped. A combination of different doses and different medicines was needed, but getting to zero blast (cancer) cells was proving difficult.

After discussions with doctors from around the world, her doctors made the decision that Bailey needed a bone marrow transplant to completely rid her body of the cancer cells. Previous protocol had been to wait until the patient relapsed. Forging a new plan, her doctors didn’t want to wait and made arrangments for the transplant. Fortunately, we didn’t have to look far or wait long for a donor, as some patients do. Bailey’s brothers, Tim and Aaron, both were identified as perfect matches. On November 17, 2009, Bailey received Tim’s bone marrow and began the grueling road to recovery. Today, more than a year and half later, she shows no signs of leukemia in her body. We feel very satisfied that her treatment has become protocol for other patients in the same situation. Bailey is now enjoying being a typical teenager.

In January 2006, Luke was a happy and content 8 month old. He fell ill with RSV and was hospitalized for 8 days. When a high fever returned a week later, Luke’s parents, Brandon and Julie, brought him to the ER where the doctors decided to keep him overnight. After abnormal blood tests, Luke was transported by ambulance to Children’s Hospital in Minneapolis. A bone marrow biopsy was done to explain the abnormal results and initially the biopsy looked fine. After further testing, the family received Luke’s diagnosis on March 2, 2006—Myelodsyplastic Syndrome (MDS)/Monosomy 7. The only cure was a bone marrow transplant.

After a donor was found and receiving chemotherapy, Luke got a new chance at life with a bone marrow transplant on 4/12/2006. The journey has been long with many hospital stays and bumps in the road, but Luke is doing well. He is followed annually and will be for life. His most recent tests in April 2011 show he continues to be cancer free—5 years cancer free!

Luke has not let cancer stop him. He enjoys doing everything that 6 year old boys should be doing—playing outside, trucks, tractors and getting dirty. He loves sports, especially baseball, basketball, soccer and football. He is also a great big brother to his sister Molly who was diagnosed with MDS/Monosomy 7 in May 2011. He has been by her side to hold her hand throughout her journey.

In the spring of 2010, Molly was a healthy and happy 2 year old. Call it mother’s intuition, but Julie, Molly’s mom, noticed bruises on Molly’s legs and had her blood levels checked at her 2 year old check up. Julie’s fears were confirmed. Molly was diagnosed with MDS/Monosomy 7, the same cancer that her brother, Luke, was diagnosed with in April 2006. The cure for MDS/Monosomy 7 is through a bone marrow transplant. After a donor was found and 10 days of chemotherapy and full body radiation, Molly received her bone marrow transplant on 7/12/10.

Molly spent 70 days in the hospital due to complications related to pneumonia, fluid around her heart and the transplant. Molly continues to be seen in clinic for transplant follow up and will be for life. The transplant was a success and we are hoping she remains cancer free just like her brother!
Molly has done well with this whole process with no complaints. She has such a huge personality and brings a smile to all who meet her. She is such a girly-girl. Molly loves to dance, sing, play dress-up, and play with her dolls and barbies. Her favorite characters are Dora, Elmo, Cookie Monster and Scooby-Do.

Mike’s first symptoms occurred on April 12, 1991. It began with morning headaches and occasional vomiting, along with a few fainting spells. We have since learned that morning headaches are a sign of a brain tumor. Mike was diagnosed on April 23rd with a mid brain astrocytoma. The tumor was blocking the flow of the spinal fluid. With brain tumors, the location means more than the grade of the tumor. Mike’s being mid brain was then termed “inoperable.” We were immediately admitted to Minneapolis Children’s Medical Center. On April 24th Mike had his first surgical procedure, the placement of a shunt . The purpose of this was to release the pressure of cerebral spinal fluid.

So our journey began. On April 29th, a brain biopsy was perfumed to determine the grading of the tumor. It came back a grade 1 to 2, grade 4 being the worst.
Mike was showered with gifts (primarily baseball, football cards) and many, many visitors and friends to rally around him.

Radiation was then initiated on May 20th, a four week regimen. We traveled to Abbott every day Monday through Friday for 4 weeks of radiation. After this was completed Mike had a “post radiation” party. Many friends attended and all had a blast.
We lived from MRI to MRI for quite some time showing the tumor to be stable. On January 11, 1992 Mike’s symptoms began to return, headaches and vomiting. On January 14th it was confirmed, the tumor was growing. On January 20th Dr. Seymour performed a brain biopsy. On January 28th he had a 6 hour surgery performed by Dr. Seymour and Dr. Nagib, a very high risk brain surgeon. Following this, the life of chemo therapy began. Our lives revolved around blood counts and fevers, living one day at a time. On April 2nd we were given the news, the tumor had continued to grow. On April 9th, 1992, Mike’s dream of his life came true. He was granted a Make A Wish, The entire family was flown to Orlando, Shaq had agreed to meet Mike and we attended an Orland Magic game against the Timberwolves. Mike was in Heaven!

Things went from bad to worse after the trip. The support of Mike’s friends will never be forgotten, they were with him every step of the way. May 24th was the last chemo treatment . Mike had paralysis on the right upper body after the craniotomy and suffered one grand mall seizure.

On June 29th he was admitted to St.Cloud Hospital with severe headaches for comfort measures only He was put on a morphine drip and kept comfortable. His attitude throughout all of this inspired everyone who came in contact with him.On July 3, 1992, his golden heart stopped beating. His last words to Mom the day before he died will never be forgotten! Mike stated in his delirium “it is going to be a hard trip across the ocean.”

Tyler was a great baby. He slept through the night at 2 months old and he didn’t fuss unless he was hungry or needed a diaper. His brother was colicky, so it was a relief when Tyler was very content. In hindsight, he became more fussy, would spit up and cry when he was sitting, and started taking more naps. Being a baby, I didn’t see spitting up or taking good naps as a problem. I took him to his well child checkup 3 days before he turned 4 months old, June 22, 2009. I had no concerns, but I did ask what the few little pinhead bruise-looking spots on his forehead were. The Dr said it was probably just cradle cap or something.
Then he noticed his lips looked pale, so he ran some labs. I left the appointment not concerned, thinking maybe he’d need a vitamin or something. I got a call about 30 minutes later, saying “there’s something wrong with his blood” and that I needed to go get my husband and be prepared to go to Children’s Hospital. Our life drastically changed from that moment on.

We went to the clinic and the Dr said he thinks it’s Leukemia and gave us directions to Chidlren’s. The next 2 days were a wirlwind. He got an IV, got admitted upstairs for the night and in the morning they did a bone marrow biopsy and sent him for surgery to have a central line placed so he could start chemo. Tyler didn’t wake up from surgery for just over 2 hours, he was admitted to the ICU and was in rough shape. He was septic, his liver and spleen were 4x enlarged. Tests showed he had Pre-B cell Acute Lymphoblastic Leukemia with the MLL gene and it had also spread to his spinal fluid. He spent the majority of the next 6 months inpatient. He got diaper rash so bad he had no skin left on his bottom. He had a mystery infection that almost killed him just 2 weeks into treatment.

When he was feeling good, he was a smiley, happy baby. Always enthusiastic about something. He was always so determined and didn’t miss any physical milestones. Once we got into maintenance things got less intense. We were home and he was on less meds. We were greatly looking forward to June 2011, when he was going to be done with treatment. We could start a new life, cancer free and with a new baby too.
In January they found a very small amount of cancer cells, which could’ve been leftovers or relapsed, so we scheduled a biopsy for April 13th. April came around and so did Tyler’s baby brother, Gabriel. We had saved his cord blood, just incase. The day after his biopsy I got a call saying Tyler had relapsed. They also told me that Gabriel’s cord blood was an 100% match! So Tyler was admitted to start over with intensive chemo on April 25th. In May he was in the PICU twice. He had Psychological side effects, “Psychosis” from the steroids and it was a very tough month. That month of chemo got him to just under 1% cells. He has 2 more months of chemo to go, finishing up the end of August or so, then he will go straight to the Bone Marrow Transplant Unit at the University of MN Children’s Hospital for a stem cell transplant using Gabriel’s cord blood. We need to live at the Ronald McDonald house for 100 days past his transplant, then we can go home if all has gone well. It doesn’t end there, even if he doesn’t relapse, he will have many lab appointments and tests for years to come.

In June of 1976, Troy was brought to our local doctor in Annandale, MN due to low grade temps, bloody noses and bruising. They did blood work and found his white count was very high.

We were then sent to St. Cloud where he was diagnosed with ALL Leukemia after a spinal tap. From St. Cloud he was sent to the University of Minnesota as his prognosis wasn’t good at all. They had given Troy only 6 months to a year to live after starting Chemotherapy. He also had several transfusions.

Troy was a great candidate for a bone marrow transplant. It may or may not have saved his life, but it would have not only prolonged his life but would have made his days of pain and sickness far less then they were, but Troy did not have a match. The chemo was not working and Troy died at home 6 days before his birthday on December 8, 1976.

Danny was diagnosed with High Risk Acute Myeloid Leukemia FLT3 on July 17,2009.  In June my husband and I had noticed that Danny seemed to be getting a lot of bruises, and when ever he ran into something he would bruise.  They were not just any bruise, they looked painful, but he said that they did not hurt, and had no idea of how he got them.  I also noticed when getting him ready for a bath he had petechia on his back.  He had also had a couple of small nose bleeds, but nothing to worry about.  On July 12th he had a big patch of petechia and also the left side of his face appeared swollen.  So I asked our ped's doctor about it.  Since he was not having any other symptoms, he said that he was he was a 5 year old boy, but that if I was worried I could bring him in for a complete blood count.  I worked in the Ob/Gyn department in the clinic where our ped's doctors are.

On Wed night my husband's sister called and asked if Danny wanted to spend the week-end with her and her husband in Parker SD, and on Sat they would take the horses to a parade and throw candy out. So we said that he could go.  Since it was still on my mind, and I just had a feeling that something was wrong, I told my husband that Friday that when he and Danny came through Worthington, I wanted them to stop and have Danny's Blood drawn.  He said no, because he did not want to ruin Danny's weekend, and I think he did not believe me when I told him I thought something was wrong. I knew that he would be picking Danny up from Daycare after 12:00 pm, so I called and left him a message explaining, that the test would only take a couple of seconds, as all they needed was to poke Danny's finger, I would have them all registered, so all they had to do was go to Lab, get it drawn and then off they could go.  He called back and agreed.  By 2:30 pm they had come and gone.  At 3:30, I was in a room with a patient, when a there was a knock on the door, and one of the other nurse's told me that there was someone out there to see me, and that she would take care of my patient.  When I walked out the door and saw Dr Barden, I knew that it was bad, and I had a feeling it was Leukemia.  He took me into a room, and showed me the test results.  He told me that the thing that really worried him, was not only were his platelets only 20,200 ( normal range 140,000-440,000), his HGB was 9.6, but they had counted 19 blast cells (leukemia cells).  He stated that he thought Danny had Leukemia and that we needed to get to a hospital that night.  He wanted to know where I wanted to go, and since Duane and Danny were on their way to Sioux Falls, I told him there.  He made all of the arrangements for us to go to Sanford Children's Hospital, and I called Duane to give him the news.  My best friend who works with me at the clinic, in thesame department, drove me to Sioux Falls, as I was in no shape to drive.  We got to the hospital at 6:00 pm and met up with Duane, Danny, and Duane's sister Carmen.  We got checked into the 3rd floor of the "Castle" and at 8:00 we met with Dr Peters, who was the Ped's Hematology/Oncology Dr on call.  He was with us until 11:30 pm, going over family history etc.  Carmen and My best friend stayed with us during this time.  At that point with the information that he had gotten, it appeared that Danny had ALL, un known to us, the lab girls where I worked, had seen Auer rods, which is the Acute Myeloid Leukemia).  It was not until Sat. night did we have the news from the lab tech in Sioux Falls that they did see Auer Rods in the blood they had drawn from Danny which meant he had a rare form of childhood cancer.  AML is only diagnosed in 500 kids a year, as this is an adult cancer >40.  So on Monday 7-20-09 we got the final word that that was what it was, he had a hickman catheter put in, and we started Chemo on July 22.  We were able to get on a study where he was on the medication branch that got an extra chemotherapy, that they knew worked against AML, but did not know how well it worked along side the standard of care.  With AML, it is such an aggressive leukemia, you must start treatment immediately and treat it aggressively

He never really had any problems with the chemotherapy except for his eating.  They did end up putting in a NJ tube, but we never had to use it, as he did start to eat once it was in regular food.  We went through 3 rounds of chemo in Sioux Falls with no decrease in leukemia cells in his bone marrow.  Since he has the FLT3 gene, it makes it harder to treat.  The FLT3 gene was first found probably around 2005, and they have just really been focusing on it since 2007.  So alot is not know about it, except that it laughs at the strongest of chemos. 

Dr Peters was at the U of M Fairview until 2005, then he went to Kansas City before coming to Sanford Children's Hospital in Sioux Falls SD.  ON Dec 1st, Danny had another bone marrow biopsy to see where we were at, we had been taken off of the study, and for the 3rd round of chemotherapy, given a medication that is usually used in relapse of AML.  That round also did nothing in decreasing the leukemia in Danny's bone marrow.  Through the whole process he had been keeping in touch with the U of M and our team up here, since we knew he would have to have a bone marrow transplant since he was High Risk.  Since he did not respond to therapy, they wanted us transferred up to the U of M and there was a study that was being done up here, and not one that could be done in Sioux Falls.  So after 142 days of being in Sanford Children's HOspital, we were discharged on Dec 6, 2009.  That was the first day that Danny had been back home to our house in Lakefield since July 17th.  We stopped, dropped things off, and headed up to the U of M, which is about 3 hours from our home in lakefield MN.

We had our first visit on Dec 7 with Dr Weigel and Jody Dahl CNP (Oncology), and on Dec 8, meet with Dr A Smith, our transplant Doctor.  On Dec 9th Danny had a bone marrow biopsy done and he was 45% leukemia cells in his bone marrow, so we meet the requirements for the phase 1 drug study for a oral chemotherapy medication that they are only giving to 6 leukemia patients, Danny being one of them.  He was started on that phase 1 medication, outpatient, on Dec 10th.  On Jan 5th, we had a bone marrow biopsy and the removal of his hickman that he had in Sioux Falls ( it had broken 2 times while in Sioux Falls), and a new hickman placed.  That night we ended up in the hospital with a fever and ended up staying until Jan 8th.  Nothing ever grew from the cultures.  With that bone marrow biopsy it showed that this phase 1 medication was working.  He had another bone marrow biopsy done on Jan 25th bringing his % of leukemia cells to 16%. Duane and I met with Dr A Smith and decided that the best chance we had a remission was to give Danny a Umbilical Cord Blood Transplant.  Our other son, who is 3 is a perfect match for Danny as a bone marrow donor, but since Danny has what is now called Refractive High Risk Acute Myeloid Leukemia FLT3, Michael is too perfect of a match, so we feel we have a better chance with the Umbilical Cord Blood transplant.  So we signed the papers to get that moving and on Feb 8th we were to start work up week.  On Feb 4th after receiving both a platelet and blood transfusion ( he has had to have many of those, part of leukemia) he started to run a fever and we ended up in the hospital.  Nothing grew from the cultures and he continued to run a fever until Sat.  So they were going to let us go back to the Ronald McDonald house on Sunday, but one of his cultures showed a staph infection.  So they ended up taking out his hickman and replacing it with a PICC>  They still wanted us to continue with the work up, ON Tuesday Feb 9th, as part of the work up they did a CT scan of the Chest and found nodules.  On Feb 11th they did a bronchoscopy which again grew nothing.  On Monday Feb 15, they did another CT scan, and the nodules on the top of the lung had gotten bigger, so on Wed Feb 17th they did a lung biopsy.  Nothing has grown from the biopsy, but since he has been on antifungal medication since we started this long process in July, and when we were admitted into the hospital he has been on antibiotics, this is not uncommon.  So right now the transplant in on hold.  We had another CT scan, this time with contrast, on Tuesday Feb 23rd, and it showed that the nodules have gotten smaller, we know that it is a fungal infection, just don't know what kind.  We may be getting out of the hospital either tomorrow (thursday feb 25 or Friday feb 26)f to go back to the Ronald McDonald House.  We have to be 1 month free of any active infection before we can think of transplant again.  We will be going home on several antifungal medications, and in 3 weeks, we will do another CT scan and see how it looks, and then our work-up doctor will decide if we can proceed with the transplant work up or if we need to wait a little bit longer.

Our youngest son has been living with Duane's brother Brad and his girlfriend back in Lakefield since July 17th.

 

Nolan was diagnosed with anaplastic medulloblastoma on October 8, 2009. He had a seven-hour surgery to remove the tumor on October 13th. The doctor was able to remove most of the tumor except some on the brain stem and two lesions on his spine. The surgery left him with left-sided weakness, and he is now relearning how to walk. Nolan has had 30 rounds of radiation treatments and has finished one round of inpatient chemotherapy, with five more to go. He should be completely finished around June 2011. He was given a six-week break between radiation and chemo and was able to enjoy his Make-A-Wish trip to Disney World.

Thus far, the scans look good. The lesions in his spine are gone, and he is handling chemo really well! Nolan enjoys coloring and watching SpongeBob! His activities before surgery were riding bikes, skateboarding, climbing and playing basketball. He hopes to return to these activities after he has overcome his weakness from surgery.

Samantha Marie Buntjer was born Dec. 2, 1995. She was diagnosed with Stage IV Neuroblastoma at 3 years of age on April 28, 1999. It had taken the doctors about 6 months to diagnose her, as her only main symptom was stomachaches. Samantha had a large tumor in her abdomen, encompassing major arteries and organs. 90% of her bone marrow was also cancerous and she had several hot spots on various bones. She started chemotherapy the next day. 6 rounds later her tumor had shrunk enough to attempt surgery to remove it. The tumor was considered inoperable, because of the arteries it surrounded. Although without the surgery, Samantha had no hope of survival. On Sept. 29, 1999 her amazing surgeon successfully removed her entire tumor. She did, however, have some complications following surgery. Ascites built up in Samantha's abdomen. She had about a liter of fluid removed weekly for a couple of months. Recovering from that, we moved forward with more chemotherapy. As the cancer never completely left her bone marrow, doctors could not harvest any of her stem cells for a later transplant. As the chemo seemed to stop affecting the cancer, we decided to give her body a break and start her on the cis-retinoic acid treatment along with natural remedies. We also received a Make-A-Wish trip to Disneyworld at this time. We watched Samantha make a huge turnaround here. Her health came back and by summer she was considered very close to NED. We had a wonderful year! But by Christmas her urine test was on the rise. Because she showed no other signs of the cancer returning, they waited to retest her until January. Samantha's cancer returned with a vengeance. Because she never had the transplant, she could not qualify for any trials. We tried some other chemo treatments with no success. Samantha, 5 years old, went Home to be with Jesus on April 21, 2001, sharing her vision of Heaven. She saw roses, a slide, Jesus, and her great-grandpa. Samantha's life is an inspiration to all.She faced this disease with faith, courage, and tremendous spirit. She always wore a beautiful smile filled with joy and peace. Samantha chose God's Love, and with that came a grace that knew no bounds. We believe Samantha's mission was revealed to her while attending a healing Mass. Jesus told her she had healing hands.

In Samantha's words, Jesus Heart was now in me, I should hold other peoples hands so that part of His Heart can enter them. Then they should do the same, so that soon Jesus Heart could be in everyone.

While we believe Samantha is continuing to bring hearts to Jesus, we hope to honor her memory by acting on her message. Help us realize Samantha's vision. Look for ways in your life to extend your hands to others, so that Jesus Heart can enter into everyone.