(see "Treatment" page for treatment up to July 7, 1997.)
Months three and four, Interim Maintenance
Notice that the 5 week consolidation was dragged out to six weeks because the cytoxin was delayed. We are told that this is not unusual and not to worry about it; it happens in 90% of the cases.
Week one, July 7-13
Monday checked WBC in Boulder, ANC 600. Continues oral PM. Thursday checked ANC in Boulder, over 1000, but platelets are low (36). Friday checked WBC in Boulder, ANC 1100, platelets coming up (57) so he doesn't need a platelets transfusion.
Week two, July 14-20
Monday LP (methotrexate) at Children's Hospital, ANC 1200. On Tue, Wed, not chemo at all!!! Starting Thursday, will take oral 6-MP (purinethol) and methotrexate on alternating days. Continues antibiotic on weekend.
Week three, July 21-27
Each evening he takes purinethol, alternating 100 mg one night and 125 mg the next. On Monday, he takes 11 tiny methotrexates all at once. NO TRIPS TO ANY HOSPITAL! Feels sort of strange!
Week four, July 28-August 3
Each evening he is to take purinethol, alternating 100 mg one night and 125 mg the next. On Monday, he is to take 11 tiny methotrexates all at once. He went to Boulder Community Hospital to have CBC-STAT on Monday. (He was to go in AM, but Mac OS8 arrived at home and detained him until afternoon.) We called to get results late Monday afternoon: results not in to Children's yet. We were supposed to get these results before he took his Monday night chemo. No results, so we went ahead with chemo. He feels so good, he must be okay. On Tuesday we hear from Children's: they don't have the CBC-STAT, and Boulder Community says they never saw him. Plot thickens.
By Thursday, we find out that they lost his CBC STAT because the Boulder hospital has his records under "Jamey". All's well that ends well, though, his ANC was 1400 and it was okay that he took his 11 tiny methotrexates on Monday.
Week five, August 4-10
Continues purinethol and methotrexate. This week he takes a 20 mile bike ride and a 26 mile bike ride, plus lifts some weights!
Week six, August 11-17
To Children's Hospital on Monday. Saw Dr. Odom, all is well. His ANC is about 2100. Very good! Had spinal methotrexate, was told not to take methotrexate at home because he had dose at hospital instead. Continues purinethol. The methotrexate made his back and head a bit achey the next day, no big deal.
Week seven, August 18-24
Continues purinethol and methotrexate. He's riding his bike lots - but, now he wants that $2500 mountain bike (Szazbo) - $2500 for the frame only. Well, all good things have their drawbacks. No clinic trips!
Week eight, August 25-31
Continues purinethol and methotrexate. Feels great -- No clinic trips!
Week nine, September 1-7
Continues purinethol and methotrexate. Feels great -- No clinic trips!
Week ten, September 1-7
Continues purinethol and methotrexate. Feels great -- No clinic trips!
Months five and six, Re-intensification
Well, here we go again. Note that the above 8 week interim was really 10 weeks; I think they started counting at week 3, because of the reaction to cytoxin. James has been in school for two weeks now, only has classes in the morning. He's a senior in Lyons High School, a small school in Colorado with only 350 kids in 7th to 12th grade. I've talked to his teachers and to the school nurse; we'll see how things go.
Week one, Sept. 8-14
On Monday, he went to the hospital for: vincristine, doxorubicin, methotrexate in the spinal, and bone marrow aspiration. They did the spinal and the bone marrow on the same poke. He did not have Versed, they somehow didn't get it from the phamacy and he decided to skip it. Went fine without the anaesthesial His ANC was 2100, liver function ALT marker 200, which is okay, but normal kids are less than 100. On Tuesday, he started 4 1/2 tabs of dexamethasone, a steroid similar to prednisone. The bone marrow/spinal made his back sore the next day, but otherwise he's fine -- went to school. On Wednesday, he drove to Boulder for his L-asparaginase IM. He says the steroids make him a bit sick to his stomach, but they do not make him hungry.
Week two, Sept. 15-21
On Monday, he went to the hospital for: vincristine, doxorubicin, and L-asparaginase. They couldn't draw blood from his mediport, although it was flushing well..Finally, after soaking both sides with (something: clot reducer), and having him try all different positions, they got a tiny amount of blood and decided to go ahead with the chemo even without the CBC results (they expected these to be fine). So, that they did. Finally, after 2 hours of doxorubicin, they were able to get blood for counts out of one side of his port. Did not get these results, as it was time to go home. On Monday, he did not take dexamethasone, will stay off these through next Sunday.
He was really tired Tuesday and Wednesday, sort of achey from discontinuing the steroids and the asparagine shots in his thighs. Missed school Tuesday and Wednesday. Quite chipper by Thursday.
Week three, Sept. 22-28
On Monday, he went to the hospital for: vincristine, doxorubicin, and L-asparaginase. No problems with port. On dexamethasone, so he missed school Thursday and Friday because the dexamethasone made him very tired. ANC is 4,000 on Monday. He began dexamethasone on Monday and will continue through next Tuesday, at which time he will be totally weaned off -- the weaning off process began Saturday.
Week four, Sept. 29-Oct. 4
Missed school on Monday and Tuesday -- the dose-down is really tough. He's in a lot of pain in his upper legs especially. I called for codeine-Tylenol and he took them: they helped a lot. On Monday, most of his hair fell out. Monday night, we buzzed the rest in a family/neighborhood project. Tuesday, it's off to Boulder for counts and a new hat! I got one too. Thursday, back in school! He has a nicely shaped head and looks good. Steroid favorite foods this time: crummy style fried chicken breasts (store bought), Dole juice bars, milk and cereal. Did blood counts on Tuesday (ANC 3200, platelets 90,000, rest within range) and Friday (ANC 2150, platelets 45,000, rest within range), both tests done in Boulder. Talked to CH late Friday, they want to postpone his cytoxin which is scheduled for next Monday until Wednesday, at least, because of the large drop in platelets. He will have a CBC next Tuesday in Boulder, and we'll go from there.
Week five, Oct. 5-11
On thioguanine (orally) and ara C Wed-Sat nights. Wed went to CH for cytoxin plus an ara C. Took Zofran and had no ill effect from the cytoxin! ANC is about 1350, I think. Went to school some.
I gave him his ara C at home Thursday night. Put the Zofran in front of him an hour before. He woke us up at about eleven: throwing up. Turns out he thought he took his Zofran but it had rolled under his mousepad (!!). I stayed up with him a lot of the night. He's okay the next day and we never forgot the Zofran again! It works wonders :-)
Week six, Oct. 12-18
On thioguanine (orally) and ara C Wed-Sat nights. Went to school some, I think (I'm writing this two weeks later). If we had his ANC checked this week, it was between 1000-1500.
Week seven, Oct. 19-25
Off chemo drugs, stayed home Mon-Wed recovering from the last blasts of chemo. Ara C is a nasty. Went to school Thursday and Friday, planned to take the ACT on Saturday but there was a one-day blizzard!
Week eight, Oct. 25-Nov. 1
No meds at all, except the weekend antibiotics! Seems odd. Went to school Mon-Wed. On Tuesday he was supposed to do counts in Boulder, but he didn't because we/he felt they would be fine. On Wednesday, he went to CH for spinal MT, but, his ANC was only 135 so they sent him home! Kept him home from school for the rest of the week. Took SAT on Saturday.
Week nine, Nov. 2-Nov. 8
Counts checked on Tuesday, up to 350 ANC. So, no treatment and he stayed home all week. Feels great! Feels too good to do homework :-)
Took ACT on Saturday.
Week ten, Nov. 9-Nov. 15
Well, finally his counts are up to 1750. Back to school Thursday. Treatment of spinal MT on Wednesday, plus begins nightly MP (oral) and weekly MT (oral). His clinic day is now Wednesdays instead of Mondays, so I am changing the dates. On Nov. 12 (Wednesday), he officially began the 8 week interim maintenance.
Months seven and eight, Interim Maintenance #2
See how the 8 weeks of reintensification was actually 10 weeks? It's okay, we're told.
Week one, Nov. 13-19
No trips to clinic, 6MP nightly, takes 11 1/2 methotrexate (MT) each Wednesday, takes antibiotics on the weekends. He is going to school, trying to catch up on all his homework: he received incompletes on his quarter grade report.
Weeks two (11/20-26), three (11/27-12/3)
No clinic trips, continues oral 6MP and MT and antibiotics; is going to school.
Week four (12/4-12/10)
Goes in on 12/10 for spinal MT; counts are fine.continues 6MP, MT, and antibiotics.
Weeks five (12/11-17) and six (12/18-24)
Well! This is really nice! It's Christmas time and James feels great being on only the 6MP, MT, and antibiotics!
December 24 is a very special day. The Boulder Chapter of Make A Wish granted his wish on this day: a super high tech mountain bike! Szazbo, by Ibis, is presented to him at Excel Sports in Boulder to very little fanfare, but a to very appreciative teenager and his family and with Debbie Bennett, the wish grantor, present. The biggest smile I have ever seen is on James' face. It's been a long, hard 8 months since we found out that he had leukemia. I'd forgotten how wonderful his face looks when he smiles with his whole being. Thank you Make A Wish.
Week seven, (12/25-31)
More of the same! Feels great, rides his *new* bike on long trips, builds his Christmas present from his dad helicopter, flies said helicopter and other assorted planes. Doesn't do homework . . . oh well, these parents don't have the heart to make him sit in his room and study, not when he is so happy, knowing that Jan. 5 he enters delayed intensification #2.
Week eight (1/1-1/4)
Well, he feels fine until Jan. 5. Note that this week seven is short, because his counts and all were so good at the last visit, he was upped two days back to Monday clinic visits, as we originally started. Jan. 5 he went to school; Jan. 6 he went to two classes, then came home and threw up. And so, on to: week eight.
Week one (1/6-1/12) of Delayed Intensification #2
Jan. 5, clinic visit. They do a bone marrow, which shows that he is still in remission (big yeah here!). They tried to get the bone marrow sample from the spinal poke, didn't get enough so had to go into the hip bone. He was on only a mild oral conscious anaesthesia, not even Versed, because we had forgotten to keep him from eating so that he could have conscious sedation. Besides, he didn't think he needed conscious sedation. Well, he does fine, barely flinhes, but it hurt. ANC about 1500. His meds are: spinal MT, IV doxorubicin, and IV vincristine. On Tuesday, he starts a week of dexamethasone. On Wednesday and Friday, he goes to the Boulder clinic for L-asparaginase.
After Tuesday, he doesn't go to school. On Wednesday, I drive home from Boulder to take him back to Boulder for his L-asparaginase shot. I do the same on Friday. He feels so yucky that he doesn't think he can drive. He barely moves all day, lays on the couch.
Week two (1/13-1/20)
On 1/12, he goes to clinic for doxorubicin, vincristine, and asparaginase. ANC 7000, because, we are told, of the dexamethasone. He feels generally rotten. We decide to taper him off the dexamethasone. On Wednesday, John drives him to Boulder for his asparaginase, and on Friday I do. On Thursday, he is off the dexamethasone and very sore in his shoulders. Wednesday he is sore in his upper stomach; this continues all week. He says it is cramp-like, it comes and goes, and is after he eats. But eating makes him feel better - the steroids cause this - although he eats less on dexamethasone than he did on prednisone. All in all, a hard week. We are glad we have the nice memories of Christmas and Szazbo to reflect on. He *will* feel good again like that in a few weeks time. By Sunday (today), his spirits are pretty good, he is up and about and being his usual silly self.
Week three (1/20-1/26)
On 1/19, he goes to the clinic for doxorubicin, vincristine, and asparaginase. ANC about 1500 He feels better than he did last week. This is the last dose of doxorubicin! This is the last dose of asparaginase! On 1/20, Tuesday, he begins dexamethasone for 7 days. He makes it to school for some of this week, until the dexamethasone starts affecting him again.
Week four (1/27-2/2)
Counts on Monday and Thursday, they are fine, were done in Boulder. He feels rotten, although he took his last dexamethasone on Wednesday, 1/28! Didn't make it to school at all this week.
Week five (2/3-2/9)
On Wednesday, 2/4, he received his last dose of cytoxin. This was actually on time! (Had counts checked on Tuesday in Boulder.) Counts fine, around 1000 I think. Has ara C (SQ) at home Thursday-Saturday, TG daily.
Week six (2/10-2/16)
Goes to clinic on Wednesday for spinal and ara C. Counts around 1000. Brings home ara C for Thursday-Saturday, TG daily. Gave him his last dose of ara C on Saturday!!
Now we wait for counts to come back up so he can officially start maintenance. His next scheduled clinic visit is 2/25.
Week seven (2/17-2/23)
Counts on Tuesday are low, about 230 I think. Rumors of chicken pox at the middle school, so, he is home, feeling great, but too susceptible to infections to be out and about.
Week eight (2/24-3/2)
Counts on Tuesday are coming up, about 450 I think, but not high enough to start maintenance, so the 2/25 visit is postponed. He goes to school late in the week.
Week one of Maintenance (3/3-3/9)
Checked counts on Sunday, 3/8, at BCH: 1450! So, 3/9 is the official beginning of maintenance.
Went to school Monday, then had the appointment Monday afternoon: spinal MT and vincristine IV. Is on prednisone Tues-Sat. He feels rotten on Tuesday, stays home. On Wed, goes to his first two classes, misses his third and last class. From Thursday on, he makes it to class. On the next Sun, Mon, Tue, after prednisone dose is over, he aches all over, especially in his upper back and shoulders. While on prednisone, he is tired.
Maintenance: two more years from March 9, 1998
This will be what he has to do:
- Each and every night, 2 1/2 or 3 pills of 6-MP
- Each Monday, 15 1/2 (2.5 mg each) pills of methotrexate
- Each weekend morning and night, Septra, an antibiotic
- 5 days at the beginning of each monthly cycle, 25 mg prednisone three times a day.
- First day of each monthly cycle, IV vincristine at the out-patient hospital clinic. At this time, they will do a blood count, flush his port, and do an exam.
- Every three months at the clinic visit, he will have a spinal treatment of methotrexate (no oral methotrexate on the same day as these treatments).
It's June, 1998! And all is well. James is in the 4th month of maintenance, and each month he feels stronger. This past week, he has been riding his Szazbo for 30 mile rides and lifting weights. Oh! Graduation on May 30 went well. Lyons High School holds the graduation in the football field, backdropped by mountains. Peggy Lam spoke, and the valedictorians spoke. One valedictorian spoke of James, how she admired his determination, to over come his treatment and graduate with his class. Guess who clapped real hard, and cried, and even whistled (I think)? Each graduate walked to the podium as his/her name was called, received the diploma, and then came to the audience to give their mom a rose. I hugged him quite hard, and then hugged him a bit harder before I let him go.
James will be attending CU Boulder, School of Engineering, next fall. He will live on campus, and be just like a normal college student! We'll just have to fit the monthly hospital visits into his class schedule. Since I work at CU, I'll be pleased if he stops by and sees his old mom once in a while!
It's December, 1998. All is fine. No delays in maintenance, no real problems. His ANC actually runs high, 2000-3000, so they increased his meds once. And once, his bilirubin (liver function test) was high, so they cut his doses for two weeks. Likely it was high because they tested two days after oral methotrexate, he was supposed to take the methotrexate on the new clinic day (Thursday) but at home we were mistakenly still on the old clinic day (Monday) schedule. We kept switching his clinic days because of his school and exam schedules.
It's June, 1999. All is fine. His ANC is now kept at about 2000. He is really fatigued, but now that it's summer, it's not a big deal, since he doesn't have to go to classes. Still another year of treatment, seems incredibly long. James is not working this summer, except for: building an RC plane for his dad, flying his planes and helis, doing some programming and updating of web pages for work for me, and working on his own computer interests. He formatted orgchem (this server) Linux and has to re-program all the scripts. He keeps busy all day, up by 7 AM and asleep by 10PM, rarely sitting down and resting except briefly during the day. He isn't riding his bike much, but has taken to going for long walks with the puppy, Lucy, one year old, and our longtime family dog, Peppy, 14 years old.
It's June, 2000. All is still fine. He still is tired a lot, but able to finish two years of engineering school and now keep a summer job. Treatment ends July, 2000!! That's five weeks from now. During the last year, they kept upping his meds to over 100% and finally it caught up and dropped his ANC to under 1000 about finals time. So he went off all meds for a couple weeks, was nice, actually. He's back on them now. He has had his last spinal while being awake! (He gets one at end-of-treatment, but that will be done when he is under to take out his port.) We are almost there!
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