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The MRI results were good. There is not AVN in Xander's knees or hips. The Radiologist was looking
at random changes that the chemo has made in his bone marrow. It is not cancer or any other problem as of yet.
Long Term Survivor Clinic results!!!!!
So we were able to address many issues at the long term survivor clinic apt. First
of all its no big surprise to anyone who knows Xan he has ADD. That test was pretty much a waste of time. They already knew,
we already knew, Xan aready knows.......
Next the "tired legs" he complains so much about. We have been telling the DR.
that is was nerve damage due to the vincristine since he was still in treamement. His current Dr. is one of the most intelegent
women I have ever met. She also realized within min. we were right. Xan has Neuropathy. For him this means his legs either
feel week, or tingly. Also on a very frequent basis his toes cramp up similar to what you would get in a charlie horse. In
fact the only way to fix that cramp is the same. To pull the toes straight, and toward his body. The Dr says this problem
will take years to go away, but physical therapy will help.
Xan also has a potential Thyroid problem. His thyroid production
is at the low end of normal, but the effort his Thyroid is putting into that is at the high end of normal. Since both values
are in the normal range they aren't taking action now. His results were sent to a Endocranologist (sp) and he will be reavaluated
in the future.
Ok now for the big one. As I mentioned in the past notes below, Xan has random
knee, sometimes left hip pain. Previous Drs. also did not address this when we consistantly brought this to their attention.
Xan's new Dr not only Listened but had a idea. She expressed concern that Xan might have Osteonecrosis. Just as the name sugests
this is a death of part of a bone. Usually a joint. Its caused when chemotherapy reduces the blood flow within the bone. This
usually occurs with larger bones, and almost always in a joint area. After taking exrays it was shown that yes Xan has Osteonecrosis.
His is not in his joint. The two worse locations are in his femer further away from the joint, and it looks like it is a mild
or moderate case. The Osteonecrosis in his hip is in the bone not joint area, and apears to be very mild. Right now we are
waiting on a all from Shriners Children's hospital. We should hear back from them before Aug. 7th. We will then
arrange for a consultation with Dr. Kribetch. He is one of the top pediatric orthopedic oncology surgeons in the country following
the consult Xan will have MRI's done on his knees and hip. After that we meet again with the Dr. to discuss our next step.
If might be that we take a wait and watch stand, or that a active treament is in Xand imediate future possibly includeing
suregery on his legs. I'll keep this site updated with information, but I might not discuss this if you call on the phone.
Xan is not to know parts of this until its the correct time.
Sorry no date on this one since its ongoing. Xan has had random, and sometimes not random joint pain
since his chemotherapy. His Oncologist says its not cancer oriented. The bigest problem is when he sits to long his knees
(somtimes more) hurt until he moves around for a bit. I know that sounds like most of us, but most of us are not 9. If he
sits in car for more then 20 min or so they start to hurt. A car ride to Portland, or the Coast is painful for him. This spring
he will start attending a long term survivor clinic at Doernbecher. That means goodby to Dr Shin, but he will be working with
Drs. that look beyond "is the cancer back" to what did the Chemo cause, and what might show up later as a long term effect
of the Chemo. 30 years from now his body could show a effect from the chemo he fished as a child. There is testing he must
have forever that has nothing to do with cancer, but everything to do with what the chemo did to his body. This clinic will
be able to help us deal with and identify the cause of his joint pain. They will also be looking at behavioral issues, learning
issues........ Usually kids don't go to this clinic until they are over 2 years in remision,but the Dr, and ourselves feel
its a better place for Xander.
Aug 29th Xan's headache is gone this morning. One more little scare in the past not future!!
Oct 27th, Xander has had a headache for 5 days. Its very slight most of the time, but sometimes balloons
into allot of discomfort. For anyone else we wouldn't worry. For Xan it was a pediatric apt yesterday. The Dr. can't find
anything wrong, and xan shows not overt signs of a brain tumor, but if his headache remains until Thursday the Pediatrician
will schedual a MRI to rule out a tumor. We just can't take chances with him.
In Oct. the spot showed no change or growth. We schedualed a follow up xray for 6 months out, but
no one is really worried at this point. Life is good.
July 14th Xander had pain in his "cancer" elbow. We rushed him to Doernbecher for a xray. They found
a spot in his bone that was not on his post chemo xray. We schedualed a repeat xray in Oct. to Check for growth or change
in the spot.
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