Brief Medical History of Ari (Aryeh Noam Chaim ben Devorah Chana) Grashin from October 2001 to present,
DOB: 10/10/1985

SUMMARY OF ARI GRASHIN’S RECENT MEDICAL HISTORY: Ari is a 16-year-old young man who has been diagnosed with a cerebellar medulloblastoma. Despite surgical excision, radiation, one course of CCNU, cisplatin and several courses of vincristine, the tumor recurred and continued to grow. He is being treated at Children’s Hospital in Seattle. When the tumor reached 3cm he was treated with gamma knife for a 3cm and approx 1.5 cm new tumor (metastatic) on June 10, 2002. He received cytoxin(mid June) in order to harvest stem cells. The stem cells were harvested in late June. He began taking oral etoposide July 3, 2002. The regimen is 3 weeks on and one week off for as long as he tolerates it or until a different plan is decided. We have started some nutritional support through Dr. Labriola an oncology naturopath, and are considering contacting Jeanne Wallace a nutritionist who specializes in brain tumors. The young man has a web site so you can see more of the history.

DETAILS OF ARI GRASHIN’S RECENT MEDICAL HISTORY: During basketball practice (Oct 2001), Ari felt his shot was off and his strength had diminished.

After some practices during pre-season, he came home not feeling well. At school he would get headaches, but nothing terrible. As the practices progressed, we could see he wasn’t feeling well. In early November he developed a mild case of shingles (h. zoster – related to chicken pox). We thought that was perhaps why he wasn’t feeling well. We went to the doctor but nothing was overtly telling us to what was going on.

The first scheduled game of the basketball season was on a Saturday night in early December. Earlier that day we walked to a friend’s house for lunch. It was extremely noticeable that Ari was having difficulty walking and maintaining his balance. He also tried to shoot some hoops and he kept missing them.

To make a long story short, he started the game that night, tried to play, but was unable to for more than two minutes. It was pretty scary. A good friend of ours, whose son was also on the team, and who happens to be a doctor at Children’s Hospital, saw the distress Ari was in. She did a quick visual exam and suggested we immediately see a neurologist. She was able to get us an appointment for that Wednesday with a neurologist. It was obvious that night that there was something very seriously wrong with Ari.

We visited the neurologist. From his visual exam, he could see that Ari’s right side was affected. He thought that most likely it was an inflammation of the cerebellum. Just to be sure, he recommended an MRI to rule out anything more serious.

The MRI was scheduled for late on Monday December 10, 2001. On Tuesday, there were messages at home, work and on our cell phones to please call the neurologist’s office. They asked us to come in the afternoon and that we should also bring Ari.

After viewing the MRI, the tumor was obvious. The impression the doctor had was that it was most likely a benign cerebellar astrocytoma – a tumor usually cured with surgery alone. He gave us the name of a surgeon at Children’s Hospital that he highly recommended.

We met with the doctors (Neurosurgeon: Richard Ellenbogen and Neural Oncologist: J. Russell Geyer) at Children’s and they recommended taking out the tumor surgically. The tumor (1.5 cm) was successfully removed 12/21/02. However, a review of the biopsy showed it was a Medulloblastoma in the cerebellum, posterior fossa

An ultrasound taken during surgery and an MRI 10 days post surgery showed no signs of any residual tumor. (The spine was scanned and an LP was also done 12/31; both were negative)

Beginning in mid January: radiation was given:
13 treatments to brain and spine
18 treatments to tumor bed
(the last day of treatment was March 4th)

Chemotherapy: Vincrinstine was given once a week for 6 weeks during the radiation treatment.

PEG (feeding) tube was implanted in Ari on March 18, 2002

Beginning on April 11th, his chemotherapy regimen began.
He had an overnight stay in hospital: where he received CCNU, Cisplatin and Vincristine. He then received Vincristine for two additional weeks.

The original plan was to have 8 – six week cycles of the above chemo series. (i.e. have all the chemo the first week, followed by vincristine for two more weeks, then 3 weeks off.)

On April 19, the first follow-up MRI was done. There appeared three small nodules at the original tumor site (partially connected). A PET scan was done May 6. The PET suggested tumor.

An MRI done on May 14 showed no change in what was apparent on the 4/19, but showed a new nodule (approx 1 cm.) outside of the tumor bed – indicating a recurrence. (Before, we held out hope that the regrowth in the tumor bed was part of the original tumor, and the radiation just hadn’t kicked in to shrink and destroy the tumor.)

An MRS was included on May 14th. (The PET scan, which was done the week earlier, showed no signs of the new tumor.) .

The new tumor was located in an easy position to remove surgically. The surgeon felt it would be ok to do surgery in the original tumor bed-but could be risky due to the proximity of the tumor to the brain stem. Plus the area had already been insulted once before.

The option was taken away when we received the results of an additional MRI on June 7th. The tumors had grown to 3 cms. and 1.5 cms. respectively and we were advised that we needed to remove the tumors immediately and he advised against surgery because the size of the tumor and the rate that it was growing (he had never seen a Medulloblasyoma grow back so large so quickly.) could cause severe damage to his motor skills. Consequently, on June 10th, Ari underwent the Gamma Knife C (stereotactic or radiosurgery) at Harborview Medical Center. (See The Gamma Knife is basically neurosurgery without incisions.

Ari was admitted to Children’s on June 13th for chemo treatments to prepare him for stem cell harvesting in case he will need them in the future (if we decide to do high dose chemotherapy, we would need to have healthy stem cells available. Thus, we are harvesting them now). He was released on June 15 and tolerated the treatment quite well. The next Friday Ari was admitted to the hospital with an infected G tube. His blood counts dropped which makes infection likely. He responded immediately to the antibiotics and because his counts already had risen he was released on Saturday. Thankfully he did not develop a fever or any other complication.

The stem cells were harvested at the Hutch over two days at the end of June.

Previous Prognosis: from the original surgery we were in the best risk category. We were told this type of tumor has a 70-80% chance of a cure.

Current Prognosis: whatever we do—surgery, radiosurgery (gamma knife), heavy dose chemo w/own stem cell replacement, or oral chemo (etopocide) would probably only extend life for 1-5 years. Cure, with conventional medicine, was not given as a possibility with what they currently know about Medulloblastoma. Instead, the doctors want to prolong life as long as possible in order to be there when a new treatment becomes available. This, of course, is predicated on the tumors responding to chemo or radiosurgery. If they don’t (as would have been the case had there been no intervention on the tumors), our Oncologist - after very direct questioning from Ari- told him he would probably have less than a year…

For a few weeks Ari took Pau D’arco Bark (he began soon after 4/19 MRI and continued until 5/14) (We met a 90-year old woman on a plane that told us about it. Her doctors told her that her cancer was incurable. She had no chemo or radiation. She used the tea for 3 months, survived the cancer, and is now 90. We might begin using the tea again, but we got nervous that the new spot came about during the time he was using it (although the original tumor site was unchanged))

Last month, Ari began taking two different derivatives of wormwood/artemesia (thought to cross the blood-brain barrier). A research professor from the University of Washington advised us on the dosage and the procurement of the herb. There are several studies indicating that this medicine, which has been used for malarial treatment, shows great promise in killing cancer cells. Our doctors ok’d its use (in conjunction with conventional methods). If you look at you will see some links to articles about artemesia. To get the scientific info, you need to dig a little or I can send you some links.

Ari still has right-sided weakness (leg and arm/hand) which he has had since before the surgery. He stopped PT when the MRI showed new problems, thinking he wasn’t improving much because of the growth. The doctor indicated that the tumors were not large enough to cause him the continued coordination problems he was experiencing at that time.

He is very thin (5’8” and 115# soaking wet). He had been receiving g-tube nightly feeds until he began the artemesia. (He takes it at night and can’t eat thereafter for at least four hours). He is a very picky eater—diet changes would be very difficult on him. He would rather not eat.

Interestingly, for the past two years he had decided that he was lactose intolerant and suffered with stomach pain. The most he weighed was 125#. The doctors here are very protective of weight loss. The PEG was implanted to take the pressure to eat off of Ari. During radiation he was unable to eat most of the time. When the PEG tube was implanted, he was also diagnosed with chronic gastritis. He was put on Prilosec. The last few weeks he decided to try dairy again and, with a little Lactaid, has had no problems. Lately he has eaten enough ice cream to make up for the past few years! (FYI, one of his brothers has Crohn’s disease).

We have consulted with Dr. Dan Labriola and Dr. John Sherman. They are naturpathic doctors specializing in complementary treatments for those undergoing conventional treatments. We will also be contacting Jeanne Wallace an expert in Brain Tumors and nutrition. We have adjusted Ari’s diet to try and adjust his body chemistry to bolster his natural immune system.

He hasn’t attended school since December.

He is in OK spirits despite all he is going through. His friends are extremely caring and supportive. He loved playing sports and continues to enjoy watching sports (and minimally playing a little). He was a very talented athlete and has hopes to recover enough to play again. Chai Lifeline sent him to the Super Bowl in January and he became a buddy of the Sonic basketball player Desmond Mason.

What we are hoping and praying for:

To find where they are doing something totally innovative. Our doctor is Jeffrey Russell Geyer. He is a pediatric neuro-oncologist. He is extremely competent, qualified, compassionate and caring. The problem is that he is limited in the options he has with conventional medicine. He is part of a brain tumor consortium that includes many other well-known doctors. His recommendation at this point is to use etopocide in order to preserve quality of life. (the high dose chemo brings with it a lot of suffering, and possibly could be fatal, and comes without greater promise of prolonging his life). He began taking oral etoposide on July 3, 2002. The regimen is 3 weeks on and one week off for as long as he tolerates it or until a different plan is decided

Any advice, recommendations, or referrals we will gladly investigate. I have given you the history in detail except for the actual reports, which I can obtain.

We appreciate your time and energy. Thank you for caring

Most Sincerely,

David and Debbie Grashin and Family
206.723.5802 home
206.650.5758 Debbie Cell
206.850.5802 David Cell