About the
ISAAC'S FOUNDATION

The Isaac's Journey... "where HOPE begins" foundation was
launched in January, 2008. Isaac's Foundation developed
from the passing of cancer patient Isaac Matthew Lieser
(June 22, 2005 - January 23, 2008).

Isaac's Favorite Song - "Upside Down" By: Jack Johnson
This was one of Isaac's favorite songs. Whenever he heard it he would always
say, "George". The day after he died we made his funeral arrangements and then
went and bought a suit for Josh for the funeral. That Thursday night when we got
home to set the alarm clock for our next busy day, this song was on the radio. I have
the CD, but I've never heard it on the radio before. How ironic, Isaac spoke to us that
night through this song. I think the words of the song speak loud and clear.

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About Isaac Lieser

Isaac, it is of Hebrew origin, and it's meaning is laughter.

Isaac Matthew Lieser was born June 22, 2005. Since the day Isaac was born he was an instant joy to everyone he touched.Isaac was always a happy boy, so perfect and always smiling. On May 6, 2007 he was diagnosed with Neuroblastoma, cancer. After a 9 month courageous battle Isaac passed away Wednesday January 23, 2008 at the age of 2 years, 7 months and 1 day.

The Beginning
We had just given birth to our fourth son, Keegan on April 16th, 2007. We have three other boys, Dominic - age 6, Jayden - age 4 and Isaac - age 22 months. I felt like my family was now whole.I now had every-thing I ever wanted, we had four beautiful healthy boys. Life was great!

On May 2nd (Wednesday) our son Isaac of 22 months awoke with a very distended tummy in pain. I brought him to the clinic where they took an x-ray. It looked like he was constipated. We were sent home with a laxative and suppositories. May 4th (Friday) our newborn Keegan had his 1st check-up. I brought Isaac with to be re-examined. It was decided to wait over the weekend and to do an ultrasound on Monday as the radiology report from Wednesday's x-ray came back as needing further evaluation. Saturday Josh's sister was getting married. Our almost four year old was the ring bearer so I needed to be there for him. Isaac wasn't feeling better so he stayed home with my sister. I called before mass started and there was no change, Isaac was still sleepy and irritable. I called right after mass and my sister said, meet me at the hospital, we found a lump the size of my fist and another one on the right side of his belly button protruding from his tummy. I was in complete denial. I drove about 85-90 mph all the way to the hospital. We were at the ER, they did an ultrasound and the pictures were sent to Children's Hospital. The Doctor came back with the devastating news that it looks like a tumor. I'll never forget that moment when the Doctor said the word tumor. I was speechless, I fell to my knees screaming and crying. We then were taken by ambulance right away to Children's Hospital in Minneapolis.

In July of 2006 Isaac had 2 febrile seizures and than 1 more again in February of 2007. We seen a neurologist for this and it was determined after testing that it was just febrile seizures, which were common in children and that he was likely to never have another. The summer of 2006 Isaac seen a pediatric bone specialist for his legs as he seemed to walk inward with his feet, but that was determined by the specialist that he would grow out of that as that was also common in children and in his case didn't seem to be be serious. How could this be that Isaac had cancer. Isaac never showed any signs of illness. He was a very healthy child with a couple ear infections, but that's all.

Isaac's Journey
May of 2007. Isaac was diagnosed with Stage IV High Risk Neuroblastoma. Stage IV means that the cancer has spread beyond the primary tumor to distant parts of the body. In Isaac's case several tumors were found in his lungs, chest, neck and the largest was in his abdomen encasing his left kidney. Cancer was also spread through out his body in his femur, lumbar and his bone marrow. High Risk means that the disease often responds to standard treatment at first, but there is a high risk that the cancer will come back. The tumor biopsy showed to have unfavorable histology and was amplified. Isaac was given a 20-40% survival rate.

This is the same exact cancer that Josh's sister (Isaac's aunt) had in 1983. She won the battle with this cancer as she was at a disease stand point of being NED, No Evidence of Disease.�The chemotherapy and radiation suppressed her immune system so that she got pneumonia, had a heart attack and lost her life on January 25, 1984. This was exactly 24 years and two days before Isaac passed away. Kim was given the same statistics 24 years ago that Isaac was given 24 years later. Red flag-in 24 years things haven't changed and what's more mind boggling is no one was asking or testing our other children.

Isaac was on Protocol A-3973. Isaac's roadmap (plan of treatment) was expected to take 12-14 months. Isaac had 2 rounds of chemotherapy which consisted of Cyclophosphamide, Doxorubicin and Vincristine (CDV). He then had a stem cell harvest which was later to be used to rescue him out of a consolidation round of chemotherapy (high dose). This is kind of like a Bone Marrow Transplant except Isaacwas to be his own donor. He then had a 3rd round of chemotherapy which included Cisplatin and Etoposide, CiE. He then had a 4th round of chemotherapy, CDV and the 5th round was CiE. Scans were performed through out, but after the 5th round they did all the major scans to decide if Isaac was ready for surgery to resect the primarytumor. The cancer was all gone through out his body except for the tumor encasing his left kidney which was much smaller, but still encasing major vessels and arteries, too dangerous to take out yet. It was decided to do a 6th round of chemo and check scans after that. We then checked scans after the 6th round and were given terrible news.Isaac had relapsed, refractory disease. Which means his cancer came back and was not responding to treatment. We then tried 2 different rounds of chemotherapy after that. It still wasn't working. We tried 11 rounds of radiation and it appeared to work as labs, specifically his bilirubin came down, but scan wise it appeared to have spread.We then did a 9th round of chemotherapy hoping to keep the cancer at bay while trying to get him to Vermont to be part of the Nifurtimox study.After the pre-study workup and scans and Isaac's health rapidly deteriorating it was decided on January 20th that we transfer him closer to home to our hospital in Melrose. Isaac was now on hospice through Centra-Care out of St. Cloud. Three short days later Isaac joined the Lord and his aunt Kim in heaven. We never gave up HOPE, not once, we still to do this day believe in Isaac.

During Isaac's 9 month battle he endured more than most adults in a lifetime. Isaac always seemed to take the scenic route during treatment always being different from what medical science tells us. In between treatments Isaac became very ill with low counts making him susceptible to infections. Tummy sicks (vomit), nausea, exhaustion and fever were our normal life during treatment. Isaac's Journey included:

141 days in the hospital
3 bone marrow biopsies/aspirates
9 rounds of chemo = 51 days total
2 Hickman placements & 2 Hickman removals
17 clinic visits & 20 short stay visits
10 ER visits & 5 ambulance rides
Loss of Hair
Double door isolation 4x
Started Morphine 4x, with a PCA 2x, dopamine 1x, TPN 3x
7 needle pokes
11 rounds of radiation
2 bone scans, 1 fluoroscopy, 1 PET scan, 1 skin biopsy
3 GFR test, 3 audiology test, 1 DMSA test,
14 CT scans, 2 MIBG's, 32 x-rays, 6 ultrasounds and 1 EKG
36 blood transfusions & 48 platelet transfusions
10 tube insertions=1 NJ tube, 1NG tube, 1 G tube, 3 Mic-Key caps,
1 chest tube and 2 catheters
49 sterile dressing changes
2 surgeries
16+ physical therapies
4 stays in PICU

When Isaac was diagnosed all the questions of why's and the feelings of guilt and blame rushed upon me. We had so many questions of how this happened, but
no one had any answers for us. I was asked once to describe my kids. What do they mean to me? I thought well, that is the easiest question in the world. Oxygen. My kids are my oxygen because with out it I can't survive. Isaac, if love could have saved you, you would have lived forever!

Neuroblastoma
Neuroblastoma is the most common cancer found in infants, almost double that of leukemia and the most common extra-cranial solid tumor found in children. There is very little known about why neuroblastoma occurs, or about what factors increase the risk for occurrence. It is an aggressive cancer of the sympathetic nervous system, a nerve network throughout the body which carries messages from the brain. Neuroblastoma is a malignant tumor that manifests as a lump or mass in the abdomen, around the spinal cord, or in the chest, neck, or pelvis. Diagnosis can be complicated. It has been called the great masquerader because its symptoms mimic so many other diseases.
Every 16 hours a child with neuroblastoma dies.
There is no known cure.
The average age at diagnosis is two years old.
Nearly 70% of those children first diagnosed, have disease that has already metastasized or spread to other parts of the body.
It accounts for 8% of all childhood cancer, but 15% of all the childhood cancer deaths.
Nearly 70% of those children first diagnosed, have disease that has already metastasized or spread to other parts of the body.
Neuroblastoma is an aggressive solid tumor cancer that strikes mainly young children and has less than a 30% chance of survival when evidence at diagnosis shows that the disease has spread.1
Neuroblastoma is the most common cancer found in infants, almost double that of leukemia, and the most common solid tumor cancer in children, second only to brain tumors. Neuroblastoma is the third most prevalent pediatric cancer and has less than a 30% chance of survival when evidence at diagnoses shows that the disease has spread.

May 6, 2007 CT-scan (Isaac's Primary Tumor)

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Through awareness and research, other forms of pediatric cancer have made great strides in being able to claim 80% to 90% "cure" rates. Neuroblastoma cannot make that claim. The complexity of the disease has baffled researchers for decades. There is no known cause or cure for Neuroblastoma.