Posted by Steph in
Chemo Round 4, Tests, on Wednesday, January 3. 2007 at
Asher's in a good mood this morning....he woke up, "Look mom, the sun is up. Did you have a good sleep?" I told him no, I didn't (it was a bad night for me) and he said, "I had a good sleep." He's just too cute. Anyway, hate to ruin the good mood with the catheter, but I have no choice. In round 3 of chemo, the methatrexate was very slow in exiting and they may have to adjust the amounts of chemo(s) and antibiotics if his kidneys aren't functioning at 100%.
So, earliest chemo can start is mid-tomorrow (1/4/07).
Speaking of diapers....last night Asher woke up several times. I thought he was in pain (he did say "Ow") a lot so he got 3 doses of oxycodone (1mL) during the night for the BROVIAC site pain. But, one time I thought he had to pee. So, I asked his nurse for a urinal (plastic jug that hangs on the bed for boys) and I showed Asher how to use it and he went in it. He fell asleep saying, "I'm a big boy."
Anyway, so I made a blog entry last night and the hospital has wireless now and it lost connection when I hit save and I lost my entry. So, basically what I said was we finally got our room after 8 hours in PACU (6pm). Asher got to go to the playroom right away (he said, "Look, the playroom is open!") and then after eating Burger King, he went walking and riding a bike with daddy. It is almost like we never left, with a few changes.
Posted by Steph in
Tests, on Thursday, December 28. 2006 at
Posted by Steph in
Chemo Round 3, Head Wound, Surgery, Tests, on Sunday, October 8. 2006 at
Another part the two surgeons wondered about last night (in the center area) was dead, so they did have to remove more. They told us the opening in the back of his head is 12cmx6cm (oh my!!) and the exposed bone is 2cmx2cm. They aren't sure if the bone is okay for sure yet (or if anything is happening on the other side at the dura). They did say it did not look worse than yesterday. They said his spinal fluid was crystal clear.
The plan is for Asher to go into surgery tomorrow (maybe 10am-ish) to have Integra DRT put on the open wound of his head. Right now he has a special dressing that is stapled to his head, and is expected to bleed some tonight. Just a note: they won't be doing any reconstructive type of surgery for awhile.
The neurosurgeon recommended no chemo for at least six weeks. Asher's oncologist will be consulted on that as well.
Can't think of much else. I wanted to say with Asher's counts up and his super long afternoon nap, he was sitting up and even almost smiled one time before surgery. He was playing Game Boy right before going down at 8pm. His morphine is keeping him comfortable. I'm staying with my boy again tonight....I just can't leave him right now.
Posted by Scott in
Tests, on Friday, August 11. 2006 at
We woke up around 9am and headed downstairs to our Glofil Kidney test. This test, like the last time we did it prior to chemo, tests how quickly the kidney processes a radioactive isotope that's injected into the body. Over the course of 5 hours, they do 4 blood draws and then measure the level of the isotope still in his body.
During the test, we just hung out in the playroom, tried to get Asher to eat unsuccessfully, and played some playstation.
This afternoon, we headed over for a hearing test to see if the chemo has impacted Asher's hearing at all. Unfortunately, it has. As expected, his left side has started to show a slight decline in response to ultra high frequencies above 9khz (imagine a very annoying high pitched squeal of your refrigerator coolant). Instead of being "perfect", he's now right at "normal", which, according to the hearing test ladies has been seen quite often after the first round of chemo in children like Asher.
Basically, as I understand it, Asher doesn't quite hear those ultra high frequency sounds very loudly anymore and he'll hear them, but quietly. We'll be doing hearing tests after each impacting course of chemo (maybe not after the 2nd round, but definately after the third).
Friday, we start Chemo right away in the morning with an injection of Vincristine and then two oral meds - Temozolomide and Etoposide. This 2nd course is just oral medications and some Vincristine, so we will need to find a way to get Asher to keep the oral meds down either by mixing with liquid or pudding or something. Asher not eating or drinking gets pretty frustrating for me because he's exerting his will on everything and because he can control what goes in his mouth, there is really nothing that we can do to get him to eat. One bite of something just might not cut it going forward.....
Anyway, that's what's coming up for us.
Posted by Scott in
Chemo Round 2, Chemo Round 6 & Transplant, Tests, on Tuesday, August 8. 2006 at
Things will start to ramp back up Tuesday
About 4am, they'll take a bunch of blood draws to measure the CD34 Levels in Asher's blood to confirm that he has enough stem cells floating around for a successful harvest. The CD34 was good and high today and they could have harvested today but chose to wait until Tuesday, hoping we'll only need one day to get the target number.
In addition, they'll do further tests to ensure that Asher's blood and cells are clean of any diseases and infections (HIV, Hepatitis, HTLV). Many of the tests that you can perform on blood come back positive in chemo kids or in people who have had recent infections or antibiotics, so they're doing specialized tests that will take 7+ days before they'll have definitive results. I can't think of any possible way that Asher would have any of these things they're testing for, but to be sure, they have to run them all.
about 7am, Asher will have his Ash-Split Catheter bandage changed and will receive his final dose of neupogen prior to stem cell harvest
Then between 8 and 9, they'll get us and bring us down to the "monkey room" where we'll be for 5-6 hours while Asher's stem cells are harvested by the Apheresis machine that will be hooked up to his catheter.
Hopefully we'll only need to do the harvest for one day and we'll get enough stem cells without going back for a second harvest on wednesday.
Pending the successful completion of the harvest, we'll then go through a few tests prior to starting chemo. The Venkomicin will end wednesday as well unless a fever comes on for some reason.
We'll be repeating the GFR Kidney Test that we have to do between every round of chemo that tests his kidney function, and we'll probably get another Audiology test to see if any of the medicines have impacted his hearing ability to this point.
Once we have the results of the kidney test, and have been off of the Neupogen for 48 hours, we'll start Chemo round two that consists mainly of Vincristine and some oral medications. I'm very interested to what lengths we'll have to go through to get Asher to take down these oral meds. I really hope that he'll have enough interest in eating that we'll be able to mix it with pudding or some other food that he'll like eating. It was even mentioned to me by a mother that I met in the playroom that her child had no problems once they mixed the meds with caramel coffee flavoring syrup.
We'll be continuing the IV Nutrition because we're expecting nausea to come back once we start the next round of chemo. We're giving Asher 70% of his daily calories right now and running the nutrition 16 hours a day and they may drop that more to encourage his eating. There also has been talk of trying a drug called megace that stimulates appetite.
Asher's going to be visited by a therapist to help him with his taste and food textures. Steph suggested this to the doctors earlier today and I think that this is an excellent idea and it should go a LONG way toward helping Asher regain his desire to eat because it seems that once Asher knows what is going to happen, or understands the substance of something, he's much easier with it. Asher's mouth sores have completely healed, so that shouldn't be stopping him anymore.
So, that's what's going on with us for the next few days.
Posted by Steph in
Tests, on Wednesday, July 26. 2006 at
So normal is 37C (98.6F) and over 38C (100.4F) they consider a fever.
Convert kg to lb:
So today he is 32.8lbs (14.9kg) and basically has not lost or gained any weight since all of this started at the end of May.
Posted by Scott in
Tests, on Tuesday, July 11. 2006 at
Asher really really REALLY did an awesome job. They first started off by doing a basic echo test which just bounced some sounds around in his ear to check frequency response I guess.
Then, Asher had to participate in the activities. The next set of tests required Asher to put a peg in a board each time that he heard a sound. Not only did he hear them all, but most of the time he actually put a peg in!
The last test required Asher to put a block in a bucket each time he heard a sound. This one was tougher, but he heard all of the sounds and did an excellent job putting the blocks in.
Both audiology nurses commented on how he was sooooooooo good!
From what I could tell (and we knew), he has awesome hearing.
From Audiology, we went on to have an IV put in to handle the isotope for the Kidney Glofil test. Basically, they put some radioactive stuff in Asher, and then watch over a 5 hour period how his kidney's filter out the stuff. Asher did great over the 5 hour period and in getting the IV in his hand. I had put on EMLA cream, which numbs the nerves and it doesn't hurt to get poked.
Over the 5 hours we spent in the hospital, we basically just wandered around, talked to the child life people, played in the playroom, and walked some more. We've been wondering what we should tell Asher about going into the hospital for a long period of time and the specialist on the oncology floor said that we should just have him help us pack his favorite things, and we should tell him that we're going to the doctor and that we're going to stay longer this time. Since kids Asher's age don't understand the concept of time, once we're in, we can just go a dya at a time developing methods and timetables that work for us - ie: get up, breakfast, medicine, playroom, walk, medicine, lunch, play, movies, learn, sleep, etc...
After we were all done with Asher's test, I stopped in the oncology area to discuss the stem cell treatment and the insurance coverage with our nurses. I met the bone marrow lady who's the chair of the program at PCH. She's really employed by the Mayo Clinic in Scottsdale and apparently runs both programs. I found out an interesting piece of information. Apparently, there is two classifications of hospitals. There's "cancer hospitals" and "bone marrow hospitals". Our hospital is "in-network" with the insurance company for the "cancer" part and "out-of-network" for the bone marrow part. Since the protocol that we are considering doing has a phase of Autologous Stem Cell Transplant. Apparently, since our hospital isn't in-network, it's going to cost us more.
AND, apparently, the closest in-network (recommended) transplant hospital (there's not one in arizona) is the Los Angeles childrens hospital - where it happens to be the HQ of the guy who developed the protocol we're considering. So, we could consider going there to do the transplant, but really, with all of the travel and headache and cost associated with travelling, it would probably end up being the same out of pocket costs as staying here, the only thing is that it wouldn't apply against our out-of-pocket lifetime maximum for out of network. I just love insurance. I have NO idea why our hospital isn't considered in-network since they are working with Mayo. I think I'll be challenging the insurance company on that.
At 2:30, on our way out of the main building, we found that the Phoenix Zoo had stopped by the learning center and brought some animals. WE stayed long enough for Asher to see a HUGE toad, a walking stick, and a hedgehog.
Tomorrow brings a meeting with the oncology and transplant team to go over questions, etc.