Posted by Steph in
, on Thursday, May 2. 2013 at
WHAT'S HAPPENING TODAY
Asher's next MRI and clinic is due in January 2014.
Asher started fourth grade in August 2013. This was the first year he had an IEP. I found his first quarter of fourth grade was very difficult for him. He had C's and D's and he was far below standards. Through the year he has received resource time for math, and has done writing lab. He is allowed to test in a quieter, less crowded environment in a 'work at his pace' manner. The test scores were much better, approaching or meets!
Asher has been cancer-free (MRI showed NED (no evidence of disease)) since end of November 2006. He has been out of treatment since end of March 2007. He has checkups (MRI of brain) and clinic visits annually, now, in January.
He is active and has no obvious deficits from the original craniotomies or year of treatment or 176 hospitalized days, other than some minor issues with his legs, feet, and jumping. With that said, he is getting stronger every day! On 10/12/07 he was jumping off the ottoman onto the carpet below, landing on two feet, without pain and without falling! He can now gallop (3/26/08). He can now jump off the couch or higher, with no balance issues and usually landing on his feet (11/08). He can now hop on one foot across a room before losing balance. He can now stand on one foot for about 8-11 seconds, either right or left (while his sister, one year younger, can stand on one foot an almost infinite amount of time) (3/20/10).
He does have some high frequency hearing loss in his left ear due to ototoxic chemotherapy; at this time he does not need a hearing aide.
He does have a scar on the back of his head with no hair growing, which is where the scalp was cut away and debridement had to occur to rid the tissue of an infection from September 2006-October 2006. At some point we may meet with the plastic surgeon to discuss this area.
In June 2009, we found that Asher has optic nerve atrophy and retinal scarring in both eyes. His left eye is much weaker and doesn't have good central vision (20/400) At times it gets tired and drifts inward, as a 'lazy' eye would. His right eye is making up for it, and seeing fairly well (20/30). He now wears glasses, for protection. We are attempting patching the good eye in hopes to get some vision back to the left eye.
THE TUMOR & CRANIOTOMIES
An MRI showed Asher had an apricot size brain tumor in the back of his brain on 5/26/06. Asher had two craniotomies (5/29/06 & 6/15/06) to remove the original tumor. The first surgery left about 1/3 of the tumor behind as it was a "bloody surgery," the loss of blood and difficulty was not something they expected. They would have to go back in. Thus the second surgery. They thought they got all the tumor out during the second surgery, but the scans from the next day showed a 5mmx5mm residual tumor remained, hidden in tissue as the neurosurgeon didn't see it. After the second round of chemotherapy, the residual tumor had shrunk by 75% (MRI on 8/28/06). After one more round of chemotherapy, and two months of allowing his head wound to heal, the MRI showed no visible tumor remaining (11/30/06)! Except for a small 6mm cyst in the left ______, Asher's MRI remains clear of tumors (12/29/06)! Before going to transplant, Asher had another MRI (2/21/07) and his brain and spine remains clear of tumors!
It wasn't till after the second craniotomy, and many tests later, that they (all the doctors) decided the tumor was MEDULLOBLASTOMA. The neurosurgeon originally told us it was, but after the difficult first craniotomy, he questioned it. That is why they had many tests, even samples sent to PA.
He has had many surgeries. One to place a shunt (6/13/06) because a large fluid filled cyst developed after the first craniotomy, one to reposition the shunt and place an ash split catheter (6/24/06), and then one to remove the shunt because the skin wore down exposing the tubing (7/22/06) during round one of his chemotherapy. After 10 days in PICU, it was then determined that Asher wouldn't need a permanent shunt.
On 10/2/06 Asher's ash split catheter was removed (due to repeated infection) and he got a PICC Line in his right arm.
On 10/6/06 and 10/7/06 Asher had surgery to remove dead tissue (debridement) at the wound that developed at his craniotomy scar (due to infection that developed during round three of his chemotherapy). Then on 10/8/06 he went into surgery to have Integra put on the open wound. On 10/20/06 Asher went into surgery, again, and had the Integra removed and a VAC Therapy System put on. All of Asher's head dressing changes, three times a week, while he had the VAC, were done under anesthesia in the PACU or OR. On 11/17/06 Asher went back into the OR. The plastic surgeon thought she was going to do a skin graft, but when she removed the VAC she smelled yeast. The VAC was left off and we went to wet/dry dressings on his head, twice a day, at home. Asher's head wound was finally closed up with a skin graft (donor site: left buttock) on 12/7/06. On 12/13/06 he went back into surgery and the plastic surgeon found the skin graft didn't take. It was removed and a telfa dressing was used with bacitracin in hopes to heal the wound the rest of the way. On 12/30/06 a tiny, less than 1cm, of thin scab remains at the head wound. It is considered healed and he's ready to resume chemotherapy.
On January 2, 2007, they removed the PICC Line and put in a BROVIAC (in his chest), only because a PICC Line is only temporary. The nurse said I took such good care of the PICC because it lasted longer than it should have.
Asher participated in the Head Start III Clinical Trial (new link here - that one is gone), with six rounds of in-patient chemotherapy and stem cell rescue (bone marrow transplant).
Asher was admitted on 7/12/06 to start his chemotherapy. After the first round, they collected his stem cells through two collection (in two days) and then they were sent off to be frozen and saved until after round 6. Asher made it through three rounds of chemo before an infection at his craniotomy incision/scar caused a 3 1/2 month delay. On January 4, 2007, he began again, where he left off, at round 4, Head Start III. Asher appeared so strong after the delay and he pretty much breezed through the remaining chemo. In January, we did one night of oral chemo in the hospital and then we did the rest of the oral chemo at home. He had a 3 day hospital stay to do IV chemo then but was discharged on his birthday! He only had one minor fever in January, which turned out to be nothing but a short 2 day inconvenient hospital stay. Even in February, Asher tolerated the chemo well. He had two weeks of hospital stay and then back home! We did have many trips back to the hospital, though, in order for Asher to have the pre-transplant tests. Then, Asher was admitted on 3/4/07 for his last chemo round (6) and his Autologous Stem Cell Transplant. He had 6 days of chemo (3/5-3/10) and then received his 4 bags of stem cells on 3/13/07. He recovered from the chemo, Cdiff, and a blood infection and went home on 3/30/07. Since Asher is so young, he will not receive radiation. We are hoping Asher will be cured without ever needing to radiate his brain.
SCANS, TESTS & PROCEDURES
Asher has had many MRIs and CT scans, five spinal taps, 1 bone marrow aspiration, 2 stem cell collections, many transfusions (blood, platelets and even one transfusion of FFP (fresh frozen plasma) on 3/20/07), and has had to endure many tube insertions (NG Tubes and Foley Catheters) and pokes (IVs). Asher had anesthetic 41 times in 2006 (from 5/26/06 to 12/31/06).
MRI / Spinal Tap summary
02/21/11 ALL CLEAR (brain and spine)
08/06/10 CLEAR (brain only)
02/12/10 ALL CLEAR (brain and spine)
10/08/09 ALL CLEAR (brain and spine)
06/03/09 ALL CLEAR (brain and spine) (moved up from 7/17 due to left eye drifting inward)
03/19/09 ALL CLEAR (brain and spine)
11/26/08 ALL CLEAR (brain and spine)
08/29/08 ALL CLEAR (brain and spine)
06/13/08 ALL CLEAR (brain and spine)
03/12/08 ALL CLEAR (brain and spine)
12/18/07 ALL CLEAR (brain)
09/21/07 ALL CLEAR (brain and spine)
06/21/07 ALL CLEAR (brain and spine)
05/02/07 ALL CLEAR (brain and spine)
02/21/07 ALL CLEAR (brain and spine and spinal fluid) (proceed with final round of chemo and stem cell transplant)
12/29/06 & 01/02/07 ALL CLEAR (brain and spine and spinal tap) (head wound healed - begin round 4 Head Start III)
11/30/06 ALL CLEAR (brain and spine) (still waiting for head wound to heal to resume chemo)
10/07/06 NORMAL (spinal fluid) (no infection in his brain - checked due to infection in head/tissue/blood)
08/28/06 residual tumor has shrunk by 75% - leaving about 1 1/4 mm tumor (chemo is working, continue on)
06/16/06 residual tumor remains after second craniotomy - approx. 5mm - about the size of a adult finger tip (they will see if chemo takes care of it and not do another craniotomy - begin Head Start III in July 2006)
06/12/06 large cyst developed where the original tumor was partially resected (Asher needs a shunt ASAP and then do second craniotomy)
05/30/06 about 67% of the original tumor was successfully resected, but about 33% remains (Asher will need a second craniotomy before he begins chemo)
05/26/06 MEDULLOBLASTOMA - apricot-sized brain tumor found (Asher admitted to prepare for first craniotomy)
Asher has had five hearing tests: July 2006 before chemo started, August 2006 after two rounds of chemo, December 2006 before starting chemo round 4, February 2, 2007 before starting chemo round 5, and February 23, 2007 before going to transplant.
After the third test we were told, "Asher has lost some hearing in his left ear, but not enough to affect daily hearing and speach." After the fourth test we were told, "Asher has more than 50% hearing loss in his left ear. Asher will need a hearing aide for his left ear after his treatment is over. For now, talk towards his right ear. He hears you just fine, but once he starts school it will be a concern." Asher had another hearing test before going to transplant, on 2/23/07, and it seems he can hear more than last time! Maybe he won't need a hearing aide after all! They will continue to monitor his hearing, especially after transplant.
INTERESTING READING / LINKS
Earlier generations of multi-center "Baby" protocols have demonstrated the feasibility of chemotherapy-only strategies for young children with newly diagnosed malignant brain tumors. The disease-free survivals attained with these regimens, however, were disappointing. The "Head Start I and II" studies demonstrated generally superior outcome for patients with medulloblastoma, other PNET and ependymoma than other such studies. Furthermore, the total duration of treatment on the "Head Start" regimens is six months, much reduced from the time interval of other such protocols.
The primary aim of Headstart III is to determine the two year event-free survival and overall survival from time of study enrollment, for children with non-disseminated medulloblastoma, disseminated medulloblastoma and all non-cerebellar primitive neuroectodermal tumors (PNET), disseminated or non-disseminated treated with induction chemotherapy followed by consolidation with myeloablative chemotherapy and autologous hematopoietic cell rescue."
That is taken from this link:
"1: Childs Nerv Syst. 1997 Jan;13(1):30-4.
Importance of patient evaluation for long-term survival in medulloblastoma recurrence.La Marca F, Tomita T.
Department of Pediatric Neurosurgery, Children's Memorial Hospital, Chicago, IL 60614, USA.
Recurrence is a major cause of death in patients with medulloblastoma. Although the exact protocol for regular radiographic evaluation is sometimes a matter of debate, continuous follow up is necessary. We report a case of long-term survival after surgical removal of a subfrontal recurrent medulloblastoma, which occurred more than 3 years after total gross excision of the primary lesion and radiation therapy. The asymptomatic recurrence, which was detected by routine follow-up neuroimaging tests, was excised. The patient subsequently received gamma knife irradiation of the tumor bed followed by a course of "8 in 1" chemotherapy. "Early delayed radionecrosis" occurred 13 months after gamma knife treatment, which resolved spontaneously. Particularities of the case are discussed with reference to the location of the recurrent tumor, the possible pathogenetic causes and the side effects of treatment. We believe that this case and others reported in the literature underline the importance of continuous MRI surveillance of patients operated on for medulloblastoma.
PMID: 9083699 [PubMed - indexed for MEDLINE]"
That is taken from this link:
Chemotherapy for Childhood Medulloblastoma and Primitive Neuroectodermal Tumors:
http://theoncologist.alphamedpress.org/cgi/content/full/1/6/381 (article from 10/2/96)
Adult Stem Cell Research Provides Help for Children With Brain Tumors:
http://www.lifenews.com/bio1754.html (article from 9/7/06)
Survival for children with medulloblastoma following tumor recurrence or progression
Survivor Story (by his mother):