This will be my attempt at daily (ha! maybe weekly) updates........ here goes (skip to the bottom for most recent posting):

Monday, June 29, 1998
Yesterday, Kevin came home from the hospital after his 5th methotrexate infusion. He was admitted on Thursday, the mtx ran for 24 hours (until 9:30 on Friday), then flushed out for 24, and home Sunday morning. He had a good treatment -- if you can call them good! No vomitting, no weird side-effects, no fevers or headaches, etc. !! His level at 24 hours was good (9.2) and at 48 hours it was gone (.04)! I wish Brian's had gone that smoothly. Kevin's counts were very low last week. His treatment had been delayed (from Mon. to Thurs.), and his 6mp (nightly chemo pills) were held 5 days until his white blood cells came back up. When we left the hospital, everything was up. We even went to the movies to see Mulan! We went to Brian's cardiologist today for a follow-up from last year. He has to go back again next week, because the doc was so backed up with patients. Brian and I are busy reading our SCUBA books....we start our class on July 2! He is excited. I am scared out of my wits! Wednesday is Brian's last intrathecal chemo (through the spinal fluid)!!! He has had 20 of them over the past 2 years.

Wednesday, July 1, 1998
Today both Brian and Kevin had appointments. Brian had his LAST (HURRAY!!!!!!) spinal chemo (methotrexate, ARA-C, hydrocortisone), his weekly leg shot (methotrexate), blood work and check-up, and Kevin had his weekly blood work and check-up.

Unfortunately, both of them have a low white blood count......kinda puts a damper on the holiday weekend! Kevin also developed mouth sores from his methotrexate infusion last week, so his nightly chemo pills are being held until next week. Brian is feeling pretty sick right now (4pm), but we're going to celebrate later if he's up to it! We thought this milestone would never get here. He will have one more spinal tap, at the end of treatment in December, but no more chemo intrathecally! Bet you wish you could see the dance I'm doing!

Wednesday, July 8, 1998
Well, this is turning out to be a weekly thing I guess. :) We had a very nice 4th at Lake Anna with the uncles and grandparents. Brian and Kevin fished and had water balloon fights with their cousins, and we saw some pretty good fireworks on the lake by boat.

Yesterday I took the boys to the Dr. for blood work and Brian's weekly shot. Guess what? Both the Dr. and I were surprised to see that their counts (immune system) are exactly the same as last week! Ugh. We certainly didn't expect that. The doc looked at slides of both boys' blood, and said they still look "good" (meaning no bad cells). This after taking Kevin off chemo for a week due to the mouth sores...Just when I was really hoping to tell him he could go to the pool again. Brian couldn't go on the church youth group's tubing trip down the Rappahannock today. It rained, so I'm hoping that they rescheduled it til "we" have better counts! ;)

We did decide to risk Brian going to the pool tonight for his scuba class. It's a small risk, and hopefully the chlorine is strong enough to kill any bad bugs..... We geared up and sat on the bottom of the deep end practicing skills and hand signals. There is only one other person -- a 14 year old boy -- in our class, so I feel really old. I don't think I embarrassed him, yet. It was AWESOME (Brian's words)!!

Monday, July 13, 1998
Kevin is doing well -- scheduled to go in for his last IV mtx on Friday. HURRAY! I'm taking Brian in for his weekly appt tomorrow, and I think I'll ask for Kevin's counts to be run as well. After they had ANC's of 600 and 700 for the last 2 weeks, I'm really anxious to know! At least if he's up, we can get some days at the pool before Friday. :) We did go to the pool on Friday -- I looked at the 3 of us and we really needed it -- a decision that I hope I don't regret! Since his monocytes were up last week, I'm hoping I was right to think his granulocytes are coming up now, too. We were there 2 hours and he was in heaven the whole time. I gave him strict instructions that he wasn't to step foot in the baby pool (during the big pool's break time). Good thing. As we left, they closed it because some child threw up in there. Ugh! Yesterday we went to Va. Beach for the day (2.75 hours each way for us). Perfect weather, perfect day. Well worth the drive, as we can't do a "real" vacation again this year. Counts and health permitting, we're going to King's Dominion on Wednesday. Brian (also feeling well) and I had our final exam (academic portion) at our scuba class tonight. We each missed 3 questions (different ones!) and got 94%. Not bad, considering we forgot that the test was tonight. ;) Tomorrow night is the pool portion, and we have to swim the length of the pool 8 times! Ugh--Better eat my Wheaties. I just realized I should explain some terms.... ANC: Absolute Neutrophil Count, aka Granulocytes (neutrophils are the "good" white blood cells -- the ones that fight infection -- immune system), should be between 500 and 1500 for my boys on chemo. Normal people are somewhere around 3000-5000. Below 500 is neutropenic, and no chemo can be given. If they stay above 1500 more than 2 weeks, chemo is increased. If a fever develops while neutropenic, the child must be hospitalized with strong IV antibiotics, as certain infections could kill them. It is a real balancing act, but so far they have the right dose and usually stay in that range. The white blood cells (WBCs) are mainly the ones that do the rollercoaster thing for Brian and Kevin right now. Lymphocytes and Monocytes also make up the WBCs. When the monocytes come up, the granulocytes usually follow. Now......are we all ready for med school??!

Tuesday, July 21, 1998
Well, it's been a busy week! (*Good* busy!) Last week's dr. appointment was great news....Brian's ANC was 1300 and Kevin's was 1500!! Guess I called that one right.:) We did go to King's Dominion on Wednesday, and took along our 13 year old niece and Brian's friend, too. Had a great time on all the rides, and didn't have to worry about low counts!

Kevin went in to the hospital on Friday for his LAST methotrexate infusion!!! He'll still get it IM (weekly leg shot) and intrathecally (in spinal fluid), but this is the last of the BIG GREEN IV BAGS!!! It went very well, and we came home at 1AM on Monday morning. I even met Joe Gibbs at the hospital gift shop over the weekend! So far, Kevin has no mouth sores or vomitting. Our next appointment (for both boys) is Thursday, July 23.

Tonight and Thursday, Brian and I have scuba classes in the pool. Saturday and Sunday we conclude the class with dives at the quarry (I'm scared of those!) twice each day. Kevin has a birthday party to go to tomorrow -- Chuck-E-Cheese (ugh!) -- just in time because I'm sure his counts will be dropping by Friday. The chemo usually takes 7 days to really hit the bone marrow.

We're planning on August 7 for Kevin's bone marrow test, triple intrathecal treatment, vincristine, prednisone, increased purinethol pills and methotrexate shot. It won't be a good day, but will mark the beginning of maintenance treatment!! In the meantime, he has a 2 week recovery period, where he just takes the nightly chemo pills.

Sunday, July 26, 1998
Kevin had a pretty good week. A few mornings of vomitting, but he doesn't let it get him down. He just does it and gets on with playing. He had several "normal kid" days, which made me very happy. He has been with friends and outside every day, or at the pool with friends. He had a few mouth sores from the methotrexate, and a tiny bit of blood in his urine we noticed today. The doctor thinks that indicates sores in the urinary tract as well. Fortunately, he has no pain, so we'll just keep an eye on that for the next few days. Usually those kind of sores heal within a week. Never a dull moment. :(

Kevin's blood counts were great on Thursday! He may have dropped a bit since then, but probably not much. His ANC was 3700, platelets in the 300's and hemoglobin 11.1 -- not bad for just having methotrexate! Brian's ANC was low again (800). We decided to take another chance and do the rest of the SCUBA classes......so far, he hasn't been sick (and I have everything crossed!).

Today Brian and I finished our SCUBA certification! It has been a tiring week, with diving in the pool Tuesday and Thursday, and diving both Saturday and today in a quarry. The course took nearly a month, and was not easy. I am so proud of him, and glad that he got to do something he has talked
about for the last 2 years. Our quarry dives were interesting -- 44 feet was our deepest depth, and it was 56 degrees down there!! We had two 30 minute dives each day, and saw wrecked cars, boats and a school bus. Oh, yeah, and lots of fish!! He is really tired, and turned down a horseback riding trip in the Shenandoahs with a friend tomorrow. He just wants to veg for a day or two. So do I!!

Here's a picture of our SCUBA-boy!

Saturday, August 15, 1998
Well, it has been a few weeks since I've done an update. The boys have been feeling well and having fun. The week after our diving had me under the weather, and Brian needed time to catch up on rest. Since then we've been hanging out at home, playing with friends, and going to the pool. You know, NORMAL stuff! Last Friday, Kevin had his end-of-consolidation bone marrow aspiration, spinal tap, triple intrathecal, vincristine, methotrexate shot and a week of prednisone (not fun). He was VERY sick on Friday, but bounced back to his playful self on Saturday. His counts are good this week, but we expect them to fall in the next few days. The results of the bone marrow and spinal fluid were good, so on we go to the maintenance phase! (Weekly methotrexate shots, nightly 6mp pills, triple intrathecals every 8 weeks, vincristine and prednisone every 16 weeks.) Kevin had a birthday (his 5th) on the 13th, and will have a party with his buddies on the 18th. We're celebrating all week! Brian has his 13th birthday on the 31st, so this is a busy month. All is well though, so we're happy. :)

Tuesday, August 25, 1998
Hi again! Well, there is NEVER a dull moment around here... last Monday (8/17) we got a call from Kevin's doctor regarding the blood work done the previous Friday. She wanted Kevin to come back for more blood work because his liver enzymes were 10 times the normal limit and she wanted to find out which direction they were heading. Tuesday she called again to stop all his chemo and his Bactrim. They were now 35 times normal! I guess that explained the morning vomitting for those few days. Kevin celebrated his birthday with a party at home, and had a great time. He didn't certainly didn't mind missing any pills!! Friday (8/21) we were back for more blood tests and Brian's chemo and weekly CBC. Brian's were fine, by the way:) Yesterday we were told that the enzymes were back to 10x normal, so Kevin is back on the nightly 6mp and today got his leg shot of methotrexate (no tears this time!!). A week of missed chemo isn't unusual, and even maintenance can be a little rocky.

Both of the guys are feeling good, and looking forward to a day at the beach (Bonnie permitting) this Thursday to celebrate Brian's (13th!) birthday with his friends. We're going to an O's game *on* the day (8/31), and off on a family beach trip late next week.

We hope there aren't any more surprises from the doctors...!

Sunday, September 13, 1998
A LOT has happened since I last updated. We went to the O's game (they lost) and had a great time eating dinner with friends at the Camden Club overlooking the field. Kevin especially enjoyed the game, as it was his first! Brian had a great birthday, too. Two days later we were off to Ocean City. The weather wasn't great but we enjoyed ourselves anyway. We attended a magic show one night where Wendell had to "participate" (was humiliated --kids loved it) onstage. We went ice skating (another first for Kev) and played mini golf. The weather and heavy surf didn't stop the boys from boogie boarding til they dropped!! Three days weren't enough, but we had to go (and it was raining anyway) on Friday. From there we went to my parents house at the lake (sunny there!), where they boys tubed and played with their cousins. We had a crab feast and bonfire one night. Got to visit with lots of extended family we haven't seen in a while. It was lots of fun, and I hated it to end.

As you can see, the boys have been feeling very good and this trip (a first!) wasn't cancelled due to health problems. (Kevin had some nausea and vomitting the day before the beach, but his liver was fine.)

We returned on Labor Day and school started the following day. Kevin is Mr. Independent!!! I was pleasantly surprised to see that 7 months of being with mom didn't make him a cling-on! He likes Kindergarten and his teacher. He's riding the bus with his (girl)friend and has made a few more friends already. Brian has renewed some school friendships and has already been up to his ears in homework. Both boys had soccer games this weekend and played well.

Brian has heard from Make-A-Wish about his trip to Bonaire. It is scheduled for Dec. 27-Jan. 4!! We are getting excited. This seemed to him like it would never happen, with all the pancreatitis set-backs and now Kevin's leukemia. Brian will be off-treatment by then and hopefully feeling really well. I hope Kevin's health cooperates, too!

Their uncle's wedding is next weekend, so we have a very busy week ahead. They will both be in the wedding, so I hope to post pix of them in tuxedos! They are very handsome -- just ask their mom...

Their next doctor appointment (and shot) is tomorrow.

Monday, September 21, 1998
Today was another appointment for the boys. Last week went well, and today did too. :) Kevin's ANC is a little on the high side, so the docs are trying to tweak the dose of his nightly pills up a bit each week until we can get on a full dose. There are a few different bugs making the rounds at school, so I'm holding my breath that Kevin doesn't catch one! Brian is settling into his classes and activities. He plans on going on a biking trip with Scouts next weekend. I am going to The March!

The boys looked soooo handsome in their tuxedos this weekend. Kevin did the ring bearer job, but just try to make a 5 year old act like a gentleman for 8 hours! He didn't cooperate for the photographers :( I managed to snap couple myself:

My brother and his new wife were brought together by Brian's illness two years ago, so the wedding was a very emotional day for all of us. At least Kevin's antics kept me from sobbing through the whole day!

I realized yesterday that it has been two months since either of the boys was in the hospital. We are starting to feel normal again! :)

Tuesday, September 29, 1998
Kevin had his spinal tap and intrathecal chemo on Monday. We did it after kindergarten, thinking maybe this time he would be tired and the sedation would "take." We tried a different drug (Nebutol) this time as the docs have used it successfully on their other "difficult" patients. (He also had Ativan when we were about 5 minutes from the clinic, to relax.) After both of those drugs, then Fentanyl and Versed as well, he finally went to sleep. This was after much thrashing around and crying — this child does NOT like to lose control and is very strong-willed (don't I know it!). The tap went well (clear) and we made it home with no vomiting (a first). He did sleep a very deep sleep for what seemed like forever. He woke briefly at 7pm for a drink and some Zofran (for nausea), then back to sleep until 10pm when he tried to eat but got sick. This morning he was ravenous!!! He went to school and felt pretty good during the day, except for a little morning nausea and a headache in the evening. His blood counts were pretty good. His ANC was high, but I expect the chemo he got today will take care of that.

Brian went on a Boy Scout camping/bike trip this weekend. They did 25 miles, and he did 15 extra miles (5 for a merit badge, and 10 more looking for a store that sold sodas!). He was sore and tired, but happy (and proud, I think). By the amount of dirt on his body, it looked like he had a great time! Brian's blood was right where it should be at his appointment yesterday. Counting down — only 8 more weeks of chemo!!

This weekend I attended The March in Washington, D.C. It was a very emotional day for most people, and I'm not sure it made that much difference to the politicians, but it's a start! I think that when they mentioned the number of cancer deaths each day is equal to the number who died on the Titanic, it got most people's attention. Brian and Kevin have squares on the Children's Cancer Quilt that was displayed at there. Only 15 states were represented, but the number of squares was still staggering. I was a little surprised to see several pairs of siblings on other states' quilts. Maybe it isn't as rare as I thought...

Thursday, October 22, 1998
I guess it's been a while since I updated. Both boys are doing fine. We went camping the weekend of Oct. 9-11, and had a great time visiting with cousins (also campers) and some new friends. Both boys (and later mom and dad) came down with colds a few days later. They quickly threw them off, but then Kevin had a stomach virus last Thursday, and a fever of over 101 -- his first fever since diagnosis -- which had us a little scared. However, his ANC was good (a little too high: 2800), so we knew he wasn't going to get a night at the hospital unless he became dehydrated. Unbelievably, the fever and vomitting stopped later that day, and he was feeling well enough to go to school on Friday! Last Monday (10/19) they had the weekly appt., and got good reports (Kevin's methotrexate shot dose had been upped due to high counts the week before). Our next one is 10/27.

Kevin continues to have nausea and vomitting in the mornings, and occasional hypoglycemia in the morning, too. (It happened on our camping trip, but luckily we had OJ on hand...) The good thing is that he just doesn't let it ruin his day. He has only missed one day of school. The Friday after the spinal tap he was very sick. He spent all day lying down because every time he stood up he had an excruciating headache and lots of vomitting (yuck!). :( Because it was positional, the docs think it was still from the tap, and not a virus.

We've since been busy with school, soccer, etc., and last Sunday we attended Dolphin Day at the Aquarium. The boys got to stay after the show and go "behind the scenes" and feed and play with the dolphins!

Tonight Kevin and mom went to see Anastasia on Ice. It was a great show, with lots of good effects, and we really enjoyed ourselves.

[Both outings were courtesy of "Growing Hope," a great new program through our clinic which offers non-medical support to kids with cancer.]

Sunday, November 1, 1998
The boys are doing well. Brian played an awesome soccer game Saturday, and kicked his first goal in 3 years -- since his diagnosis! Kevin played today, too. He had his first goal last Sunday :).

Both boys go to the doctor tomorrow. Kevin's chemo has been increased, due to his continued high ANC (2100 last week, even after the methotrexate dose was raised). Brian's counts are just where they should be (ANC 1500). Both boys have normal platelet counts, and hemoglobin is normal for chemo. Brian's last week of chemo will be Nov. 23. Nov. 30 is the last day of pills, and a bone marrow aspiration is scheduled for Dec. 3! Kevin is due for Vincristine/Prednisone and his triple intrathecal on Nov. 23, just in time for Thanksgiving...I think I'll stock up on Valium!

Everything is going so well -- I'm almost afraid to say that -- except for Kevin's morning nausea/vomiting, you wouldn't know they're in treatment most days.

Mom is the one who is having a hard time -- I'm told the end of treatment does this to everyone. I'm losing the security of chemo and it's scary! After December 3, Brian will only go to have his blood checked every month. Well, that's what we've been working for, right? :-)

Monday, November 9, 1998
OK, I knew I shouldn't have jinxed us by saying everything was great!! Today I'm worried. Brian's ANC is down to 900 (falling a few hundred each week for the past few) and his doc saw atypical cells and says, don't worry (yeah, right -- that's my middle name) they don't look like leukemia, they look like mono or something. (That's similar to what I was told about Kevin's blood at diagnosis...) I asked for a definitive mono test, so I'll hear later this week. Brian has been exhausted this past week, and slept the whole day on election day. I never thought I'd pray for mono. :(

Kevin's ANC is now 1300, due to us raising his dose of 6mp (nightly pills) and weekly methotrexate shot. The protocol has now told us that they don't recommend raising the dose because of liver damage that could result (one child is waiting for a liver transplant). Oh joy. Vincristine pushed his liver enzymes to 30x normal limits last go-round, and he gets that and prednisone and a spinal tap on 11/23.

I try to live each day and not worry, but some days aren't as easy as others. Calgon, take me away!

Monday, November 29, 1998

We have had a rollercoaster week.  As if the worries about his ANC and atypical white blood cells weren't enough, Brian had another bout with acute pancreatitis.  He awoke on Nov. 21 with abdominal pain, and after packing a few things and calling ahead, we were in a hospital room by 2:00 p.m.  He was able to stand the pain until about 4, when the docs started him on morphine.  The IV fluids and morphine kept him comfortable, and we felt that this was going to be one of the "milder" episodes...when the lab reports came back the next day, we were shocked to see that his pancreatic enzymes (produced wildly when inflamed) were higher than they'd ever been!  The docs seemed more cautious than before, telling us that he wouldn't get out before Thanksgiving (Thursday), even though his pain had mostly subsided on Monday.  Monday he was feeling so much better that I called my brother and my parents to sit with Brian at the hospital, while Wendell and I took Kevin in for his spinal tap, intrathecal chemo and vincristine ( when it rains, it really pours...).  [I had considered putting this off, but it seems NEVER to be a good time, so we just got it over with.]  Anyway, Monday was a really bad day for Kevin, and he stayed home from school on Tuesday, but he was able to attend the "feast" at kindergarten on Wednesday.  Wendell and I took turns staying with Brian overnight and during the day.  Tuesday p.m. I was able to take Brian out of the hospital (on pass!) to do a little pick-me-up shopping (!) for dive suits.  He went back after a few hours to be hooked back up to the IV and spent another restful(?) night at the hospital.  He was feeling so much better that he was getting to be a pain in the rear to the nurses!  By Wednesday, the pancreatic enzymes had fallen to a reasonable level, and he was discharged to go home for Thanksgiving! Those 5 days without food took 7 or 8 pounds off of him.

The good news is that he is off all chemo!!  We decided to skip his last week (what's one after 129 weeks?) to allow his pancreas to heal.  The last week won't make or break his treatment, so he is sooooooo happy.  He still has the bone marrow biopsy and spinal tap in Dec. 3, so please keep him in your prayers!

Kevin is to have another dose of vincristine, as well as his leg shot of  6mp tomorrow.  Brian will just have lab work.

Sunday, December 13, 1998

Well, where to start....lots has happened.  First, the best news.  BRIAN IS DONE!  He is enjoying being off chemo and EATING whenever he wants to (some of it had to be taken on an empty stomach)!

Last week was a heck of a rollercoaster ride for us.  Brian and Kevin BOTH ended up in the hospital.  It all started with Kevin's ANC dropping to 300 on Nov. 30, followed by a stomach virus and fever.  He checked into the hospital after Brian's end-of-treatment bone marrow aspiration and spinal tap on Dec. 3.  He'd been fighting the virus OK up until that time, when his ANC dropped further to 100.  On Friday morning, he too had a bone marrow aspiration and spinal tap, to rule out relapse, meningitis and other bad stuff.  Fortunately, there weren't any bad cells (there wasn't much of anything good either), so we began G-CSF shots (the shots to boost the white cell count) once a day.  He also needed a transfusion of red blood cells, as his hemoglobin had dropped to 8.  He had a reaction to the transfusion, which was quickly taken care of with IV benedryl and tylenol (fever, hives, elevated BP and heart rate).  Meanwhile, Brian called from school with a bad headache and wanted to come home (spinal tap related, or virus?).  Wendell left to go take care of him.  Kevin continued to have headaches, and his fever went up later that night so IV antibiotics were started.  Boy, did this bring back bad memories of Brian's treatment...from which I thought (hoped?) Kevin would be spared....  Anyway, on Saturday Kevin seemed to be improving, but Brian (as home) was complaining of severe stomach pains and thought it was another pancreatitis.  We weren't taking any chances, so when he felt he needed to be admitted, they hospital was full and we all shared one room!  Within a few hours, Brian got the room next to Kevin.  A sonogram of Brian's pancreas showed a little irritation, but certainly not like some other episodes, and possibly a remnant of the last one.   His lab reports didn't point to pancreatitis either, so we just waited while he received hydration.  Sunday we had good news, with both boys feeling better, and the nurses and docs ready to get rid of us :) !  Brian most likely had the stomach virus (just the pains in his tummy and the headache part), so no pancreatitis and he was able to eat again.  Almost out the door, we were stopped because of some mysterious bacteria the lab found from Kevin.  Finally the docs were satisfied that he was probably OK to go home, and we were all in our own beds that night.  Monday Kevin spiked another temp, so he is back on the IV antibiotics, but at least he's at home.  Within a few days his fevers, night sweats, nausea and diarreah went away again, and we now have our boy back!  Last Thursday (Dec. 9) his counts had risen considerably (ANC now 1200), so he is back on his chemo after 10 days off.  The bacteria remains a problem, and not a simple one.  That's a really complicated and long story, for which we may not have an answer before January.  Kevin may have to undergo a biopsy of his liver and stomach later this week.  He goes back to the oncologist on Tuesday.  For now, both boys look and feel good, and for that we're THANKFUL.  

Sunday, January 17, 1999

Well, I have been remiss in updating, haven't I??  December was a crazy month for us -- Kevin did end up having the stomach and liver biopsies, both of which were negative for the bug they looked for and the docs decided not to treat something they could no longer find.  His counts stayed up and we all had a HEALTHY Christmas!  Then, December 27, we were off for Brian's Make-A-Wish!!!  Click here for pics of our trip:  Bonaire.  We have had a great month/year so far...praying it lasts!  Kevin has another appointment Tues., 1/19, and Brian is on a monthly schedule now.  He was last seen last week, and except for some swollen lymph nodes (determined to be nothing), he's doing great!  

Monday, February 8, 1999

Another monthly check-up visit was last week for Brian, and he passed with flying colors.  He is feeling good and catching up on school work.  He went skiing in January with our church group, and our family plans another trip this weekend with an oncology group.  Kevin feels good, and we finally got the news at his weekly appointment that the mystery bug that he had all those tests for (in Dec.) was negative!!  :)  We're hoping for a QUIET year, and hope that we're due.  Thanks again for all of your prayers and positive thoughts.  I truly believe that they make the difference.

Sunday, February 21, 1999

Kevin had another good check up last week -- too good, as his chemo has now been increased again.  He has been on a reduced dose of his nightly 6mp pills ever since his counts bottomed out in December.  He has been tolerating this reduced dose so well that the docs decided it is now time to ease it back up a bit (always a balancing act).   There is an outbreak of Fifth's Disease (also known as parvo virus) in his classroom that has me nervous, but so far so good (everything crossed here).  Kevin, Brian and mom went skiing in WV last weekend with a group called Special Love and had a BALL!!  Kevin was quite frustrated learning the first day, but by day #2 he was riding the chair lifts like a pro!  He thinks he can teach his dad how to ski now :).  He says that snorkeling in Bonaire and skiing in Canaan are his "best vacations in my whole life." LOL.. Brian is feeling and looking good, and both boys are eagerly awaiting the start of soccer season again!  Kevin's next appt. is tomorrow, and both boys have appts. on March 1.  

Monday, March 29, 1999

Well, it's been a while, hasn't it?  I've been busy with the boys' soccer seasons getting started again, as well as nasty chemo...  First, Kevin did manage to escape the dreaded parvo virus. :)  Both boys' 3/1 check-ups were good.  Brian's counts were almost normal!  Kevin's were good enough that we considered raising his 6mp back up to the full dose, but decided instead to wait until after the spinal tap/vincristine/prednisone week.  It was a good thing, too.  Kevin's liver enzymes went way up again and his ANC plummeted.  He has been off all chemo since last Tuesday, and it looks as though his liver is recovering.  His next appointment is 3/31, probably to restart chemo, if his ANC Is above 500.  We did have to miss the circus last week because of his low counts, and he stayed home from school all last week and a few days from the week prior (due to the spinal tap sickness).  Both boys are home for spring break this week.  Brian recently had a growth that we thought was a wart removed from his abdomen.  Nothing is simple in our family -- the Dr. didn't think it was a wart, and we'll have to wait to see what pathology thinks it is...praying for no bad stuff...  Brian goes to the oncologist again on April 6 for a monthly check-up.  He is looking rosy and healthy again, and keeping up with the best of his peers on the soccer field!  It is great to see. :o)

Thursday, April 1, 1999

Yesterday, Kevin's ANC had risen to 500!!  His platelets were a whopping 551, and hemoglobin hanging at 10.4 (about the same as last week).  So, he's back on chemo (although slightly reduced dose).  Yippee.  He's still feeling good and enjoying riding his bike (no training wheels as of last week!) in this nice weather.  I did forget to mention that his hair fell out again...due to the vincristine.  After putting up with it falling in his face and mouth, and making a mess of the tub and his pillow all weekend, we finally got what was left shaved off on Monday.  Kevin made light of it at first, but he's really sad about it he said.  He doesn't remember losing it the first time, believe it or not.  Anyway, we're back on track, and off for a few days for the rest of Spring break.  Have a wonderful and blessed Easter everyone!!

Thursday, April 15, 1999

Brian and Kevin both had appointments last week, and they're doing great!  Brian's counts are all in the NORMAL range, and Kevin's are slowly creeping back up.  This week Kevin's ANC was high enough (and liver good enough) to go back up on his chemo dose.  Today Brian ran the mile at school, and it was his fastest time ever!  :) :)  We're packing up the camper tonight for a short trip this weekend.  Kevin is doing great on his bicycle (look mom, no hands 8()  and Brian has bought himself a "trick" bike and scares me with his jumps...  It's nice to have normal worries though.  

Friday, April 23, 1999

Kevin had his weekly appointment yesterday, and his ANC is now 1500!  Hurray!  He continues to feel well, as does Brian.  Last weekend, we went camping with our cousins in northern Maryland (brrrr!) and had a ball.  We had enough people to field two softball teams, and had to share the field with Civil War reenactors at times!  We did have a good time, but it sure was nice to come home and sleep in our own beds.  Both boys have soccer games this weekend, if the weather cooperates.  These are good days.

Tuesday, June 8, 1999

I figured since both boys had appts today, and in light of Brian's virus (terrible sore throat, high fever, body aches...VERY unlike Brian and very scary for ME!) 2 weeks ago, I'd do an update-- especially since it is good news! Brian's counts were great: his ANC is up to a whopping 2700, the highest yet off-treatment. H&H were 14&40, WBC 5.8 (also his highest), platelets in the 300's. His onc added that his cells had "normalized" (I guess from what looked like mono then) since the virus. I had been just a little anxious for his face to return to pre-virus color, but after seeing those counts I'm happy! Oh yeah, and he's now 5'10" and 160 lbs. (5' and around 100-110 at dx)......still growing like crazy, voice changing, shaving his 'tache, etc. etc. He is excited to be finishing middle school, and we've been busy figuring out his high school schedule. He was picked for a soccer all-star tournament, which will be held Father's Day weekend.

We went to NY (Long Island) to visit my sister-in-law over the weekend, and had a great time. The weather was wonderful and we enjoyed the change of scenery. Other than my hives, life is semi-normal around here! I broke out a few days after Brian recovered from his virus (can you say STRESS??) Ugh --I'm learning first hand what these kids feel like on steroids.

Kevin is also doing well. His platelets dropped to 189K, which is low for him, but not abnormal. We'll just see what happens next week I guess. His ANC was 1500, so the full dose 6mp seems to be sitting well so far. He is due for another tap at the end of the month, along with Vincristine and Prednisone. Kevin seems to be right on track with reading, etc. in Kindergarten, and is looking forward to 1st grade. He has come such a long way this year....we had a real adjustment problem last Fall! Well, I do believe (and hope I'm not jinxing it) that he is entering the "pleasant child" stage! He still has his moments, but life in our house is much better now. :) Ask me on Prednisone week if I still feel that way!

Here's a pic of Kevin in NYC this past weekend, and another of Kevin, Brian and their cousins at FAO Schwartz.

Thursday, August 12, 1999

Hi everyone,

Six years ago tomorrow, at 4:10 a.m., Friday the 13th of August, Kevin was born. We're having a little water party with 5 of his friends: slip-n-slide, water grenades, squirt guns, sprinkler......then a cookout followed by cake! Of course the presents and decorations will all be POKEMON! Kevin will start first grade in a few weeks, just after we move, so this house is busy! Oh well, it's a happy-busy. Much better than busy running IVs and taking temps. :) :)

Yesterday both boys had onc appts. Kevin is doing fine. His counts are good, and he is on week 79 of 130 (over half way!) weeks of treatment. His spinal tap in 2 weeks will only be with methotrexate and not the triple intrathecals he's had in the past (protocol change). Kevin experienced headaches and dizziness a few weeks ago, but it has since disappeared.

Brian is now 9 months off-treatment! His counts were all NORMAL :) and he's feeling good. He is 5'11" (a whole foot taller than me now) and I can't remember his weight. He grew an inch in a month. He has been running 2 miles every day for the last 2 weeks, trying to get in shape for freshman soccer. He began taking guitar lessons and really likes it. He's using a 30 year old guitar, but we promised to buy him another if he sticks with it. I went to register him at his new high school today (my baby!) and he's getting excited. I need to rob a bank to buy him school clothes, the way he's been growing!

I have to pinch myself every day. Things are going so well that I'm afraid if I say that, I'll jinx it.  I'll try to do an update after school starts (we're moving the week before so things are hectic here!)  Thanks for your prayers~ they're working!

 

June 22, 2002

 Well, I can hardly believe it has been almost 3 years since I updated this page.  Brian is almost 4 years OFF-TREATMENT!  Kevin is almost 2 years OFF-TREATMENT, and LIFE IS SOOOO GOOD!  Brian just finished 11^th grade, and Kevin finished 3^rd.  They are both healthy and doing great.  Brian had a band (he’s still playing guitar), but it only lasted six months or so.  He still loves to play, but the logistics of trying to practice on a regular basis were getting harder during the school year, and most of the members had a job on top of their studies.  He has two guitars now, besides the 30 year old guitar he learned on, and he no  longer needs the lessons!  He is always buying new gadgets like special effects pedal, amp, etc.  He has started a lawn business, which pays much better than the various jobs he has had the past few years and he can make his own hours!  Brian is now 6’2” and 185 lbs!  Who knew?

Kevin is going to a week of camp next week, where he’ll learn to play golf and tennis, and of course will have plenty of time to swim in the community pool.   He is really looking forward to it!  Other than that, he is signed up for soccer in the fall, and we’ll have a great summer spending time at the lake, Six Flags, and maybe even a little beach week if we can swing it! I returned to work 3 days a week, in Washington, DC about two years ago.  The hours are a good balance for me of work/family, and when it does get chaotic I try to remember how thankful I am that we can have a normal busy family life!

We seldom have to go in for check-ups now:  every 2 months for Kevin, and every 6 months for Brian.  It is so hard to believe the nightmare we lived through at this point in time.  A happy ending – just what we prayed so hard for, thank God.  We continue to keep in touch with the pediatric cancer community (what a strange way to put it), through advocacy and fundraising efforts.  So many families have become dear friends because of our shared pain and support.  Thank you for continuing to keep Brian and Kevin in your prayers.

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