Hello Everyone!!!
Well, Loki began radiation this past Monday, and it has been going well. No "shortterm sideeffects" yet. Our schedule is this:
M 8am
T 7am
W 7am
R 6:45 am
F 7am
Radiation usually lasts about 20 min, but Loki is required to be sedated everyday. He gets a combination of two drugs, one relaxes him and he acts a little drunk, giggling at everything, and the other puts him into a deep sleep, but not so deep as to require a breathing tube. He usually wakes up from sedation within 30 min after the end of treatment.
Also, Loki's doctors want his counts checked twice a week, to make sure that the radiation is not adding to his white and red blood cell counts decline.
He also had chemo on Monday (Cyclophosphamide, and Vincristine). The D-Actinomyosin is held due to increased toxcicity in combination with radiaiton.
As mentioned before, Loki's radiation will last 20 days total. Tomorrow will be day 5. If you go by the calander his last day of radiation should be Friday Dec. 5th, but I am not sure he will be recieving radiation on Thanksgiving, so it may be sometime during the week of Dec. 8th.
Loki has the next two weeks off of chemotherapy (No Vincristine), and then his next admission is Monday Dec. 1st. I may have to try and push that off by a day or two, but I am not quite sure yet.
Other than that, he is doing well. I have been having him go over to a neighbors apartment in the late afternoon, 3-5pm, so I can work on my Masters (due next week..YIKES), and so that he can interact with other kids. Poor little guy has been so BORED. He really likes going over to Megan's house.
Excellent news:
Loki's little girlfriend: CeCe's tumor has changed to a completely benign form, due to the intensive chemotherapy she received. It is no longer considered malignant!!!! She will be having surgery to remove the tumor from her lower abdomin sometime after Thanksgiving. We wish her and her family the best. Her tumor was a neuroblastoma, and it has converted to a ganglioma.
Ian: From reading Ian's website, and emails I have received, Ian is doing very well. He has had some trouble with his bowels, and a nasty rash, but I hope to read soon that this issues have cleared up. I want to thank everyone keeping Ian and his family in there prayers!!!!!!!
Well, we have all been doing well...except for this pesky virual gastrointestinal junk. YUCK. Loki was sick with minor vomiting and the "poops" from Friday the 31st through Tuesday, this week. We took him into the ER on Sunday since he wasn't eating or drinking, for fluids. And, then early Monday morning both Peter and I were sick...around 2 am...not fun. Fevers, and such.
We took Loki back into his doctors on Monday for fluids, and slept on the exam tables for the 2 1/2 hours we were there. We were all really sick.
But, I am happy to say that we are all on the mend.
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Radiation Details:
Well, we met with Loki radiation therapist on Wed. Gosh, you know we changed his appointment so that they would LOOK at the scans BEFORE talking with us. Did they? NO!!!!!!!!!!!!!!!!!
Can you say Ticked off parents? They didn't even have access to them. So we will be speaking with an ombudsman about this. This is the second time we have to pay to see a doc only to be told that he doesn't have the scans and we need to come back at a later date for more details. AHHHHH!!!!!!!!!!!!
BUT, the meeting wasn't a total wash. We just didn't get to find out EXACTLY where and how Loki will be receiving radiation. We did ask a lot of questions though.
Loki DOES have confirmed negative margins surrounding the tumor and NO gross, residual tumor on CT scan. Therefore, the field of radiation will be much smaller than original anticipated.
Now, the radiation therpist did speak with two experts in the field about Loki's case and they differed in how they would treat him. One wanted to irradiate his entire pelvic region, and the other said focal radiation would be adequate. We have choosen the focal radiation.
What does this mean?
By not irradiating the entire pelvis, it does increase Loki's chance for the cancer to reoccur; however, the long term consequences of irradiating his pelvis would result in many reconstructive surgeries, and he probably would not be able to walk as an adult, and would have significant pelvic malformations. It's a trade-off. And, we have opted to go with less radiation (field) to preserve his ability to walk.
We have choosen FOCAL radiation. This means, that Loki will NOT have severe, devestating malformations.
However, some bone growth issues will still occur. We don't know exactly the field of radiation (No films to look at yet), but we were told to expect femur growth issues and some pelvic growth issues. That Loki would need one, if not two, major reconstructive surgeries (before puberty, and about 20 yrs of age) to repair his pelvis and hips as he ages.
He will, most likely, be several inches shorter in height than he would have been, had he not received radiation. However, it was left with us, that his ability to walk should not be compromised, and he should not require a wheelchair. His pelvis will be damaged, but not to that extent.
I am taking him into the radiation therapists tomorrow for a "simulation" to set up the machines, and then his treatment will begin next Monday (pending some other question I have) at 7:15 am. He will receive radiation everyday except weekends for the next 20 days.
Other than that, all is well here.
