The Nathan Report

Nathan was put under a general anesthetic at the R.A. hospital and had a biopsy taken from his nose. At that time, a tumor of unknown size and type was discovered in his right sinus cavity.

Wednesday and Thursday, Feb. 6 and 7, 2002

Nathan was treated as an outpatient at the U. of A. hospital, and given an antibiotic drip, three times daily, for the secondary infection in his sinuses. He was initially given 375 mg of cefuroxine t.i.d., and this was doubled to 750.

Friday, Feb. 8, 2002, 4pm

After a long conversation with Dr. G. at he U. of A. Hospital, it was decided that N. should be admitted to the pediatric oncology ward (4E3) at that institution. He was then put on 1500 mg of cefuroxine and 440 mg of clindamycin,
both t.i.d., and both through a constant drip.

Saturday, Feb. 9, 2002 10pm

Nathan was given a general and had his tumor partially debulked, as well as having his ears intubated. Both were done to help to cure his secondary infection, by allowing his nose to drain properly once again.

Monday, Feb. 11, 2002

The tumor was tentatively identified as a rhabdomyosarcoma. N was given an MRI scan to his whole body, a CT scan to his chest, and a bone scan to his whole body.

Tuesday, Feb. 12, 2002

Today, our Nat was made given another general and an internal venous access device (IVAD), an implanted catheter in his chest that will make it much easier to supply the up and coming chemotherapy to his bloodstream. He also had a bone marrow biopsy and a spinal tap (a fluid biopsy).

Wednesday, Feb. 13, 2002

And now, we are waiting for all of the reports to come in, and to be digested by the physicians involved. Almost certainly, there will be a treatment that includes chemotherapy, low level radiation therapy, and surgery.

Thursday, Feb. 14, 2002

Nathan was given a general and given an endoscopic sinus debridement in the morning. This is a fancy term for "having your nose picked," according to his surgeon; the main concern was to remove old packing, put in some new, and to check things over, in terms of tumor growth and infection.

In the afternoon, N's doctor disclosed that the various tests that had been done during the week were negative, which is positive. The cancer has not spread beyond its local site! However, the precise nature of the tumor has not yet been determined. It may be a rhabdomyosarcoma, or it may be one of the "Ewings type." Perhaps, by noon tomorrow, we will know. Once the precise type is known, then a treatment protocol can be implemented.

This is a childhood cancer, of a different sort from adult cancers. Often, they result from a cell that has mutated before it is fully developed. This produces diagnostic problems that can be rather difficult to resolve, as we are all learning first hand.

Friday, Feb. 15, 2002

Today, Nathan's tumor was definitively identified as an embryonic rhabdomyosarcoma. Also, his parents were presented with a choice of 2 alternatives in treatment protocols. The first involves using a standard treatment, and the second involves taking part in a trial that involves a .50 probability of being assigned to a group that will be treated using a somewhat different protocol. No decision has been made in this matter as of yet.

Also, Nathan's probability of being totally cured was given as .75.

Saturday, Feb. 16, 2001

With considerable thought and meditation, Nathan, Don, and Diane agreed that N. should enter the trial mentioned above. This will involve the use of vincristine, actinomycin, and cyclophosphamide, and possibly, topotecan. If the latter is used, the structure of the protocol (standardized treatment model) will be somewhat different.

Unfortunately, these drugs will have considerable potential and inevitable side effects. However, given the alternative, there doesn't any other reasonable course of action. The course of treatment will be 42 weeks, and will involve surgery and radiation therapy.

Chemotherapy will commence at 9am tomorrow morning.

Sunday, Feb. 17, Monday Feb. 18, 2002

Nathan's chemotherapy cocktail made him tired and nauseated, but he got through it well enough. He was given lots of IV fluids to get the stuff out of his system ASAP. On Monday, his doctor thought that he was doing well enough to go out on a pass in the evening.

Wednesday Feb. 20, and Thursday, Feb. 21, 2002

Nathan was released from the UAH at about 4 pm. The medications that he requires would have cost C$1500 without the 80% coverage that our medical plan provides. He is on oral antibiotics (Clindamycin, Cefuroxime and Cotrimoxizole) as well as topical treatments for the inside of his nose, laxatives, and GCSF, to encourage white blood cell growth. His first day was a bit rough, but a sleep in his mother's bed seemed to help a lot. He sure is happy to get his own bathtub back! Thursday will bring the first visit from a pediatric home care nurse.

Friday, Feb. 22, 2002

Nathan finally has some energy. He hasn't been drinking enough, and it looked like a trip to the cancer institute for an IV was going to be necessary, but he decided to get motivated to eat and drink a bit. He even asked about school!

Tuesday, Feb. 26 to Friday, Mar. 1, 2002

On Tuesday, Nathan developed a temperature of 38.4, and was taken to the UAH pediatric emergency dep't by his father. He was admitted to the hospital once again, and put on IV antibiotics. It was concluded that his temperature was due to further infection in his sinuses, and so he will undergo an endoscopic debridement on Friday. This had been planned for next week.

Sunday, Mar. 3, 2002

Nathan is out of the hospital, as his fever is down, and he has had time to recover from his most recent operation. Today, he will finally get his birthday party, a movie and pizza with friends and dad.

Tues., Mar. 5 to Sun., Mar. 10, 2002

On Tuesday evening, N. was taken to the UAH emergency because of his weakness and poor appetite. He was sent back up to the pediatric oncology ward, and a suction tube was inserted into his nose, running all of the way down to his stomach. This was used to pump out his GI tract from the top. Apparently, his intestines had gone on strike, a common side effect of vincristine, one of his chemotherapy medications.

Mon., Mar. 11 and Tues., Mar. 12, 2002

Nathan remained in the UAH pediatric oncology ward, and his digestive tract continued to be on strike. He was put on Total Parenteral Nutrition, an intravenous "food." He also had x-ray and ultrasound imaging done on his abdomen, and no blockage was found. N's back continues to be sore, and he has suffered some stomach cramps. A pedriatic fleet seemed to help the latter somewhat.

Wed., Mar. 13, and Thurs., Mar. 14, 2002

As it turns out, Nathan has developed pancreatitus, an uncommon but not rare side effect of his chemotherapy. This explains the stomach pains and the inability of his GI tract to function at all. The treatment plan is to continue with the TPN, and to encourage the consumption of clear fluids, as well as to give laxatives to try to clean things out a bit.

Fri., Mar. 15 to Mon., Mar. 18, 2002

Nathan's pancratitus continued to improve, his pancreatic enzyme blood levels have declined to normal levels, and on Monday, he was allowed to eat foods with a low fat content. He really wanted chips. His next bit round of chemotherapy, Vincristine, Topotecan, Cyclophosphamide, and subsequent GCSF, is scheduled for tomorrow. We still don't know when he will get sprung.

Tues., Mar. 19, Wed. Mar. 20, 2002

Nathan finally started his chemotherapy. He is eating and drinking a bit, but may need to have a tube inserted up his nose and down into his stomach. He tried to go out on an outing today, but was too weak to get too far. On the bright side, he is well enough for chemo.

Thurs., Mar. 21

Nathan is just not eating and drinking properly, and will soon have a tube surgically implanted in his stomach, through the wall of his abdomen. This would have been necessary soon anyways, as it is pretty much standard procedure for children with head or neck tumors who must undergo chemotherapy.

Fri., Mar. 22, and Sat., Mar. 23, 2002

On Friday, N. had a feeding tube inserted in his nose, much to his short term consternation. This will likely only be a temporary measure, as he will soon be getting radiation therapy. Also, on Sat., he got a hemoglobin transfusion, as his count was down.

Sun., Mar. 24 to Sun., Mar. 31, 2002

Nathan was sent home from the hospital on Monday, with nothing but routine meds and a feeding tube. He is up and about, and not above an altercation with his sister or another family member. However, his diagnosis has been changed from an embryonic to an alveolar rhabdomyo- sarcoma. This is a more serious diagnosis, and may involve a more aggressive treatment.

Mon., Apr. 1, 2002

Today, Nathan had a Percutaneous Ednoscopic Gastrostomy tube implanted in his stomach. This will allow tube feeding directly through the wall of his abdomen and into his GI tract. Basically, the thing is much like a grommet, of the tent sort, with a tube firmly stuck in the middle.

Also, the more serious diagosis mentioned almost immediately above carries with it a cure likihood of .5 after the completion of the treatment protocol. This has decreased from .7.

Tues., Apr. 2, to Wed., Apr. 3, 2002

Nathan came home from the hospital today. However, he developed a temperature of 39.2, and ended up spending Tues. night and Wed. morning in the UAH emergency ward. He was told to stop taking GCSF, and sent home at 5am. On Wed., his temp was back to normal.