Keenan Sanders, Age 4

Dear Friends & Family,
Every day is a gift.

Keenan was diagnosed with LEUKEMIA on June 27, 2001. We just wanted to give you an update on his progress and some of the things we've learned. We are pretty busy taking one day at a time and although we wish we could talk to all of our friends, we know it just isn't possible right now.

First, about Keenan. He just turned four years old on August 10. He's the most robust little boy most folks have ever seen (kinda like dad, just younger). He is almost 46" tall and about 51 pounds of solid muscle and personality. His favorite things are trains, cars and his little doggie he sleeps with. Oh, and of course, his big brother, Ben, and little sister, Kodie. He's got wavey blonde hair, blue eyes and a smile that could melt the sun.

You can read our diary of our first days and weeks below. We'll try to update this page as we go along.

June 27, 2001 ~ Week 1 Week 2 Week 3 Week 4 July 30 August 16 August 28 September 6 September 14 November 4 December 2 January 3, 2002 November 16, 2002 UPDATE FOR 2005

Photos

Pre-Diagnosis

Hospital Trike

Birthday

Godfather

New Sister

Sleeper

Big Grin

Pumpkins

At Ben's B-Day

In the Park-1

In the Park-2

Camping Trip

Face-painting

Summer Camp

2005

About Keenan's Challenge
Keenan's type of leukemia is Acute Lymphoblastic Leukemia, also known as A.L.L. They say Keenan is "lucky" since ALL is the most curable of the childhood cancers. In general, they say ALL has an 85% cure rate, but it is a bit soon to get too excited until some of his tests come back. We try not to take anything for granted at his point.

He was admitted to the hospital on Wednesday, June 27, within about an hour of his diagnosis. After nine days in the hospital, Keenan came home on Friday, July 6. During his stay, Keenan had two blood and platelet transfusions, a few rounds of chemotherapy, two spinal taps and bone marrow tests, and a surgery to implant a special device in his chest which will be used for "easy" access for his many chemotherapy sessions to come. Keenan's course of treatment should take about 2 1/2 years. Barring complications, much of the remainder should be done on an out-patient basis.


What is Leukemia and A.L.L.?
Leukemia is the term used to describe cancer of the blood-forming tissues known as bone marrow. In leukemia, the bone marrow factory creates an overabundance of diseased white cells that cannot perform their normal function of fighting infection. As the bone marrow becomes packed with these diseased white cells, production of red cells and platelets slows and/or stops.

Acute leukemia is the most common childhood cancer. Actually, many more adults than children develop leukemia. Each year in the US, approximately 25,000 adults and 2,500 children are diagnosed with acute (rapid progression) leukemia. 75% of all children with leukemia have ALL (Acute Lymphoblastic Leukemia).

The goal of treatment is to achieve a complete remission by obliterating all cancer cells as quickly as possible. The mainstay of treatment for ALL is chemotherapy, though radiation of the brain and spinal cord is administered to some very high risk patients. Bone marrow or stem cell (e.g. cord blood) transplantation is infrequently used in treatment of ALL. At this point, it is unlikely that Keenan would one of these more severe treatments.

What can you do?
Keenan's life is out of our hands for now. We can only hope and pray that the medicines will have their desired effect on the cancer. We will stand by to support, comfort, enjoy and encourage him during this treatment phase (and for the rest of his life for that matter).

Here are some things you can do:


Email us at home

Our home address:
11723 Alderidge Lane
San Diego, CA. 92131

For more information:
OncoLink
The Leukemia & Lymphoma Society
Make A Wish Foundation
National Childhood Cancer Foundation
San Diego Blood Bank

The Diary

Wed. 6/27 - Cyrise was on her way to work and to drop Keenan off at pre-school, but decided to try to get him into the doctor due to some tiny red dots that showed up on his torso the day before. Keenan had had a cold the week before, a fever Sunday night and a low-grade fever since then. We went straight to the doctor instead of school, where they did a blood test and she said she'd call us in a few hours.

By 2:30 we were sitting in the doctor's office hearing the ominous news, and we admitted Keenan to Children's Hospital by 3:30 or 4. Those tiny red dots, it turns out, are called "petichiae" and are basically tiny bursted blood vessels that show up because the plateletes are not able do to their job.

They started the IV that evening. It took two tries and although traumic, Keenan has a new girlfriend in the IV specialist, that finally got it right. He got some whole blood and platlettes that night since his counts were pretty low from the cancer. That perked him up some and although he whimpered a bit during his sleep. It seems he almost forgave us by morning time.


Thurs.6/28 - Keenan is much less pasty looking. Mid-day, Keenan had two surgical procedures. They did a spinal tap and took some fluid to test for the cancer (results took about 3 days. He does have some cancer cells, but not many. His doctor did not seem concerned and said it was expected). Also, they took a core of his hip bone and drew some bone marrow. They could tell from the marrow that in act he does have ALL, and they also send samples off for other extensive testing that takes 3 to 4 weeks to get results. From this they will know even more about the cancer and if there is anything special about it that would dictate a slight change in how they treat it. In the afternoon, Keenan's IV had to be pulled out (his hand got puffy). He was pretty stoked for a few hours until they started poking him again. After six hours, several tries, and enough shot veins to look like a heroin addict, Keenan's now girlfriend got it right again - though this time in the foot. Unfortunately, it meant Keenan wasn't allowed to walk until after the following afternoon when he was due for surgery for something called a porta-cath.


Fri.6/29 - At 4:00pm Keenan had surgery to implant this thing called a "porta-cath" into his chest. It stands for portal and catheter and is basically a mainline into his vein/heart. It has a titanium base and a rubber middle and when Keenan is in need of an IV, they use a simple mating device on the outside and he is good to go. He will have this thing implanted for as long as his therapy lasts, which is estimated at 2 1/2 years. While they had him under, they did another spinal tap to deliver his first dose of chemo into the spinal fluid. Even though we didn't know yet, that there were in fact cancer cells there, we opted to go ahead and do it and as it turns out, it's a good thing. Keenan had a bit of a fever after the surgery and was not absorbing oxygen well. They suspected some slight pnemonia which they confirmed with a second chest x-ray. He was on antibiotics anyway, but also had to be on oxygen through most of the weekend. Also through the night, Keenan began getting other doses of chemo. KeeKee vomited copiously three times in the night. The head nurse, however, did not think it was chemo-related. Dad felt like vomiting, too.


Sat 6/30 - Keenan discovers the playroom and gets his first visit from brother Ben. It was a much needed reunion for both of them. Other than getting tired quick, Keenan is acting like a normal kid.


Sun 7/1 - Keenan hates us. He just keeps saying "I'm done" and "I want to go home". He's already figured out that he doesn't like oral medications and starts squirming whenever a nurse walks into the room. He pretty much laid in bed most of the day and didn't want anything to eat and then something magic happened ...Ben showed up (with dad). Keenan chowed on a few Mother's cookies that dad brought. The kind with the pink and white frosting and little sprinkles - you know the ones. Ben was playing in the courtyard just outside Keenan's back door and when Keenan heard Ben talking to a little girl, he practically jumped out of bed and although he looked like an old man with his first few steps, in no time, we were struggling to keep up with him with his IV pole.


Sat 7/7 - The rest of the week went well. Keenan's fever did not come back. He responded well to the various doses of chemo. The main side effects being "rapid" mood swings (this may sound redundant when talking about a two year old, but it is true), and a voracious appetite brought on by the steroids that are part of the chemo. His energy level is definitely lower than normal, both from the fact that his red blood count is still low and the chemo. We are all home for now and settling in as best we can.


Mon 7/9 - The weekend went okay. Keenan seemed to get more energy each day, including today. We know this will be cyclic as each round of chemo will likely make him very out of sorts for a few days. The schedule for the next few weeks has Fridays as his heaviest dosage days. What happens after the first month of treatment will depend on the results of those initial bone marrow tests which should come back within a few weeks.


Today was the first day at home, where Keenan didn't get to go to preschool. He was a bit confused when I dropped Ben off, then came straight home. He went back out to the car so he and I had to have a little talk about how he was going to stay home and play with mommy (I'm sure the novelty of this will wear off by tomorrow). Needless to say, we will have to make some adjustments at home to better accomodate him during the days. This is probably one of those areas that we will need help so keep your eyes peeled as we come up with some things we may need assistance with (i.e. organization of the toy room, and a crash-course for Cyrise on how to keep a pre-schooler occupied).

Fri 7/13 - Marc turned 40 this week! His birthday was on the 11th, but we decided to wait and celebrate his 40th next year since our hands are kind of tied up and besides, that way Marc can stay 39 a whole year longer.

Beyond that Keenan is doing great. That is not to say that it hasn't been a trying week at home, but his progress is good and he is a champ when it comes to the medicines he has to take and his various outpatient treatments (today was spinal-tap-day).

It is strange seeing your child change right before your eyes. Don't know if I mentioned it earlier, but part of Keenan's protocal of treatment for the first month is a steriod called Dexamethasone. They say it will give them a voracious appetite, cravings and rapid mood swings. This is where we just have to laugh, because he has turned into such a little monster. Mood swings aside, this little guy is up at 4:30 or 5:00am most mornings and heads straight for the fridg. He searches around, finds what he wants, then starts with his requests such as "I want beans and cheese on my burrito" or "I want mustard on my corndog", or "I want ketchup on my eggs and bacon in my mouth". The doctors forgot to mention that his use if prepositions would increast ten-fold. As expected, he has gained a bit of weight, his little face is much rounder and his tummy a bit distended. This is supposedly normal, but he looks very uncomfortable. Two more weeks of this steroid, then hopefully, the evil Keenan will go away.

As far as Keenan's progress, we are still learning the terms and trying to decipher, but here's a try. Since Keenan's white blood cell count (WBC) is where his leukemia "resides", this is what they bombard with the chemo, kill off the bad cells called "blasts" and do things to help the good cells begin to regenerate. Most of Keenan's blasts are now gone and his WBC is starting to climb again (without the blasts). This is all good. Also, since his red cell count (RBC) was also low - due to being crowded out by all those blast cells, these RBCs also have to keep increasing. Keenan's numbers on all these counts are going in the right directions and he hasn't needed any transfusions since that first week. They also have a number that is an indicator of his ability to fight infection called the ANC which stands for Absolute Neutrophil Count. Most folks are in the 1500-5500 range. Keenan was at 40 on Tuesday, and up to 210 today. He is still incredibly immune suppressed until he gets to at least 500. So we don't get to play with other kids for awhile.

Remission - Today Keenan's doctor said they consider remission to be when he has the normal amount of cells in his bone marrow AND no blasts. Well, Keenan's blasts are almost gone, but his number of cells is still fairly low. They hope/expect that he will be in remission by the end of his first month of treatment which will be in about two weeks.

Tues. 7/24 - Keenan is doing well. We are looking forward to only three more days of the steroid (at least for now). He is BIG. He was at 47 pounds on Friday and you wouldn't recoginze him. They say this is normal and he will lose the weight over the next few months. This is really the least of our worries, but he just looks so uncomfortable. To add insult to injury, Keenan has a hydraseal (sp?) in his little left testicle - though it is no longer little, it is more the size of a large lemon. This is basically fluid in the testical and he will have hernia surgery next Monday to repair it. He had his right side done back in May and it is likely that all the extra weight made the left side "leak" as well. Between this and the extra weight he waddles a lot like Cyrise does now that she is in her eighth month of pregnancy. Also noteworthy, Keenan is starting to lose his hair. Again, not a big deal. He has the same beautiful smile, albeit pudgy.

His blood test last Friday was very good in terms of his ANC (his ability to fight infection - see notes from 7/13). It jumped up to 2590. We've since ventured out a bit and are not quite as paranoid for now. Keenan can play with other kids provided they are not sick. He hasn't really felt like doing too much, so we are easing into it.

We are hopefull to get back the detailed results from that initial bone marrow test that was taken his 2nd day in the hospital. We should find out this week what level of "risk" Keenan's luekemia is and how his treatment will proceed in the next phase. As we may have mentioned before, his treatment will be approximately 2 1/2 years, but the combinations of chemotherapy may vary depending the DNA of his cancer cells.

This Friday is another bone marrow test which serves as a measure of how Keenan responded to the first month of treatment. We should get those results sometime next week. We are crossing our fingers as you could imagine.

A question a lot of folks ask is, "Why 2 1/2 years of treatment if the cancer will be "in remission" with no cancer cells detected by the end of this first month?". Let me try to explain as I understand it: Well, even though they may not find any cancer cells in the blood or bone marrow that is drawn, there still may be some hiding out in other parts of his body. As it is, with the ALL type of leukemia, the chemotherapy they use attacks the cancerous cells during the cell division process (remember cell division from your biology courses); they need to keep hitting the body with chemo until, hopefully, they've gotten them all. The most intense portion (hopefully) of the chemo will have been this first month, but he will continue to get chemo at various intervals over the whole 2 1/2 year period.

A special note from Cyrise and Marc... we just wanted to say that we are touched with all of the emails we have gotten from friends and even people who know us through our kids. It can be quite overwhelming to read all of the heartfelt things that you all have to say. Please understand that even if we don't reply (we're a bit buried right now), your words mean a lot to us. Thank you. And please continue to think positive thoughts for Keenan.

Mon. 7/30 - Lots has happened and lots of new information in the last few days. Most importantly, Keenan is in remission! This is wonderful, though it does not mean that his treatment will be any shorter than the 2 1/2 years, but still, there is a certain amount of relief in hearing that term.

The main things we learned at the end of last week were:


What we learned from the results of the initial bone marrow test:

  • Keenan is considered "standard risk" (vs. low or high risk).
  • The survival rate for this group is 80%.
  • Keenan's doctor is fairly conservative, but said that he is "above average" in his risk group.

Keenan now moves onto yet another phase of treatment. It's actually several phases that will take up the remainder of the 2 1/2 years. They gave us a copy of the protocal that outlines the entire treatment including drugs, timelines, risks, etc. for 130 weeks last Friday. Cyrise is a glutton for punishment and read the whole thing on the way home in the car. It is scarey and overwhelming to see it all in print, but we must remind ourselves how "lucky" we are that Keenan has one the most studied and best-cured cancers. We also were told that if he did not proceed with treatment, he has a 100% chance of falling OUT of remission.

Beyond that, Keenan had his hernia (hydrocoel) surgery today which seemed almost inconsequential. He handled it like a champ and didn't whimper ever. We were home by noon and he was running after Ben by the afternoon (undoubtedly for some much-coveted train piece). He actually seems to be able to run better now that he doesn't have a swollen scrotum the size of a lemon (no joke). Now that he has been off the steroids for a few days, Keenan seems much more like his old sweet self.

Thur. 8/9 - Keenan continues to do well. In fact, he is pretty rambunctious most of the time and has probably already shed a few of those 50 pounds. He is a lot less puffy looking and seems to be much more comfortable. He actually gets around a lot better than Cyrise does in her current state. The baby should [hopefully] arrive in about 4 weeks (this would be early). Cyrise is having signs of pre-term labor, so no sooner than this, but later is okay.

Keenan gets some form of chemo every day. Mostly oral meds that are taken at home. He had a blood test this past Monday and although his white counts and ANC (see 7/13) were much lower, they were still within the normal range. These had been boosted earlier due to the steroids, so we knew those numbers were inflated and would settle down some. His red blood cell count is continuing to climb on its own which is also good, though he is still a little shy of the normal range here.

For the next 5 months of treatment, Keenan will need to be admitted to the hospital for a 3 to 4 day stay, every 3 weeks. This is because he will get a dose of a drug that must be given in his IV (his porta-cath) and it takes several hours. They must also monitor him for a while for any adverse reactions. His first session of this type starts tomorrow (8/10). Note this is also his 3rd birthday.

Don't feel too bad, we celebrated Keenan's birthday with a few of the neighbor kids his age yesterday. It was very impromptu since we couldn't plan in advance just in case his blood counts were not high enough. We have wonderful neighbors who rose to the occasion on very short notice and the kids had fun. Keenan was amply spoiled.

A note about the hair since I think people are curious about this - I know a few weeks ago I mentioned that Keenan was beginning to lose his hair. Most folks are surprised to see that he still has lots. In fact, Keenan has a lot more hair than most middle-aged men I know (Cyrise talking here). No offense to our "thinning" friends. His is thinning also, but at a very slow rate.

We won't do the next update until we are back from the hospital and re-settled. In the meantime, keep thinking positive thoughts for Keenan.

Thur. 8/16 - Keenan has been home since Sunday. His scheduled in-patient stay went well, especially since it was our first (5 more to come) and we didn't know what to expect. He got to go home a bit early because his toxicity levels for the chemo they gave him got down to an acceptable level. Apparently the little kids seem to flush the stuff better. I guess its because they're such good little pee-ers.

His white counts and ANC dropped a little so they are now slightly below normal, but very adequate for someone who is undergoing chemotherapy. His red counts are stable, though still a bit below normal too. Going back into the hospital was a bit strange at first, but Keenan got right back into the routine. Keenan has been doing so well at home, going back amongst a lot of kids who really do seem sick is a harsh reminder of how devastating childhood cancers can be. Keenan's situation is still very delicate and we try not to take it for granted that he seems to feel good and act somewhat normal (i.e. he is fiesty and can be a pest - we are thankful for this).

We probably won't do another update until we know more. It may be a few weeks. At this point, it seems that in addition to the chemo, they will just be monitoring his blood counts to assure he does not get too depleted and need a transfusion. We won't have another bone marrow test (which gives the best indiction of any cancerous cells) until the end of this phase which will be sometime in December. Until then, uneventfulness is good - which means no complications.

Tues. 8/28 - Is has been a thankfully uneventful couple of weeks. We haven't had any new blood tests so we don't know where Keenan's immunities and blood levels are, but have been proceeding with caution just in case. If you saw Keenan, you wouldn't know he was sick (except for the tell-tale thin hair and thick body.) He has good color in his cheeks and ample energy when it's playtime. The difficult part is just keeping him away from kids who have even the slightest runny nose or cough, as this could turn into an unplanned hospital stay for Keenan.

He went back onto the steroids for one week as part of his chemo regimen. He will need to do this every eight weeks as it cooperates with other medicines he's receiving. One week didn't make him much of a monster, but we are glad the effects of the steroid have backed off.

We go in again this Friday for our 2-3 day hospital stay; but since the last one went so smoothly we are hoping for the same ans hope to be released Sunday. Cross your fingers.

ON THE BABY FRONT

  • Cyrise's Official Due Date is 9-26 (40 weeks)
  • Number of weeks Cyrise wants to go: 37 weeks
  • Number of weeks Marc wants it to go: 40 weeks
  • We are having a girl!
  • Check back here for details.

Thur. 9/6 - Keenan is home. Out of the hospital in record time (one and a half days). His red blood cell count is good (i.e. good energy levels). His white cell count and ANC (now at 700) are down therefore, his infection-fighting ability is weakened. The doctors are happy with his levels in lieu of all the chemo he is getting. As long as we can keep him from catching something, he is handling everything great. Oh, and Cyrise is still pregnant, as of today

Sat. 9/14 - She's HERE. Keenan's baby sister has arrived! Kodie Helen Sanders joined us on Monday, September 10, 2001. She was 6 lbs, 7 oz and 18.25 inches long. Baby and mom are now home and Keenan and big brother Ben are very excited about "baby Kodie". They are extremely motivated to wash their hands since that means they can hold her - gee, we should have done this sooner. Keenan, besides taking on his new role as big brother, is doing well. He had a blood test this morning. His blood counts and ANC (826) have gone up since his last check two weeks ago. Although his immunities are still below us normal folk, he is doing great for all the treatments he is getting.


Sun. 11/4 - Keenan is great. I know its been awhile since our last update. It is largely due to baby Kodie who pretty much runs the household, but also Keenan's progress has been thankfully uneventful so there hasn't been much to say. Keenan and Ben still love their baby sister (not too much jealousy yet) and Keenan even surprised Cyrise by picking her up and carrying her down the hallway. It was only about 12 feet, but Cyrise's heart stopped at the sight.

Keenan has had a few more in-patient stays. Remember, these are the planned ones. We've got 5 down, 1 to go. Keenan is a little less patient with this whole process. He has had enough. The novelty has long since worn off and he now starts asking to home as soon as we get there. Most of his stays have been about two and a half days. We were lucky the first time and this past weekend by getting out in only a day and a half. His last stay starts this Friday (11/23), then life should get much simpler. More about this below.

Keenan's immunities have jumped around a bit over the past few weeks. His ANC (see 7/13) dropped to 595 about two weeks ago, then jumped back up to almost 1500 the following week. We've asked the doctors why this is and there really is no set answer. Since Keenan gets some form of chemotherapy every day, his white cells inadvertantly get killed off along with any residual cancer cells. This will lower his ANC. Also, if Keenan is fighting a cold or anything else for that matter his ANC could take a hit.

As far as the dangers to Keenan when this happens:

  • He is more prone to infection. Which means he is more suseptible to illness. Also, if his ANC was low, his little body wouldn't be able to knock off something like a cold and it could lead to respiratory arrest (extreme cases).
  • If his ANC drops below 500, they would delay his treatment. This just prolongs things which we are anxious to get over with, but more importantly, he could fall out of remission.

So when will life get simpler? Well, after the first 24 weeks of treatment (sometime in December) Keenan goes into the next phase. They call it maintenance and it is just that. The dosages get smaller, no more planned in-patient stays and spinal taps only come every twelve weeks instead of every three. It still sounds harsh, but it is easier, trust me.

That's it for now. Check out some of the cool new pictures Marc put on the site. Remember, if you have any questions just email us or call us. Thanks again for all the good thoughts.


Sun. 12/2 Whew! We're glad that's over. Keenan's last scheduled in-patient stay was last weekend. Keenan did NOT want to be there. He wouldn't eat or drink for the first day there, which is scary when you consider the toxic stuff they are giving him and that he needs to flush out of his system. Hence, they doubled his IV fluids to keep his kidneys working at getting rid of the bad stuff. Even so, he just missed getting out on the second day so we had to spend two nights and he was out Sunday morning. His ANC was 910 on Friday 11/23 (see notes from 7/13).

Keenan had a bit of a cold with a cough this past week, so when we went in for some diagnostic testing on Friday 11/30, his ANC was now down to 270 so he is extremely immune suppressed. They suspect that his fighting off the cold (which is now pretty much gone) is what likely caused his counts to drop. As a result, he is not to get his daily medication that we usually give at home and they will re-check his blood in a week. In the meantime, we are back to being super-cautious - no trips to the grocery store or anywhere that he might pick something up that he wouldn't have the ability to fight off.

Some good news - the bone marrow test that he had on Friday came back good - no leukemic cells found. Keenan hasn't had bone marrow drawn for a few months, so this is great news. He is still in remission, no surprises here.

Oh, and other happy news, Ben turns 5 this week and baby Kodie is sleeping through the night (at 2 ˝ months). Yeah!

Thursday. 1/3/2002 - Happy New Year! It seems that December [and Christmas] just blew past us. A few ups and downs with Keenan, but all in all he is doing super. His ANC bounced around a little. Two of the three weeks before Christmas it was low (as low as 150) so his infection-fighting ability was down. This means we don't take him to the grocery store (or any store for that matter) and that last minute Christmas stuff just didn't get done. Oh well, Santa made it to our house anyway and brought way too many presents.

Keenan is now onto the next phase of treatment called Intensive Continuation. This will last for 48 weeks, then the final phase goes for yet another year for 2 ˝ years total. He is doing so well, the doctor suggested we have his porta-cath removed (see notes from 7/XX). Apparently, the risk of infection increases with time, and since Keenan only needs IV access once every 12 weeks it is the right thing to do. We'll cope with an IV once every 3 months.

Keenan had surgery to remove the port on 12/31 and was playing with Ben by the afternoon. It's amazing how our reality has changed. Most of the kids coming out of their anesthesia in post-op were moaning and groaning. Keenan just bolted up out of bed, said "I'm hungry and I want to go home", started eating chips (a treat) and home we went.

Keenan's current regiment is as follows:
Daily - An oral med at home called 6MP. Keenan has been on this from the beginning and it will continue for the duration of his treatment. This is the main one that keeps his counts low. They want his ANC between 500-1000 ideally so he can fight infection, but NOT high enough to be "normal" (>1500) in which case any leukemic cells that may be around could also thrive.

Three days a week - Keenan takes a prophalactic antibiotic called Batrim. This is also something that he will continue with for the duration of his treatment.

Once every two weeks - Keenan gets a blood test to check his counts and make sure he can take his doseage of Methatrexate. This is the highly toxic stuff that he was getting via IV, but now that his dosages are lower, he can take the oral version at home following this blood test.

Once every twelve weeks - Keenan will get a spinal tap to test his spinal fluid and also deliver Methatrexate into the spinal fluid. This is followed by a week on steroids (Cyrise now prepares food ahead of time) and another medication into his IV called Vincristine. These also used to be once every 3 weeks, so every 12 as an outpatient should be a piece of cake.

Other fun news - Keenan (and Cyrise and Kodie) got to meet some of the Padres! He was in for a blood test and we were awaiting results in Keenan's favorite playroom in HEM/ONC (hemotology/onocology) a few Fridays ago when a media event unfolded around us. Apparently the ball team was donating money so they came in to see the kids and get some good PR. Keenan wasn't nearly as impressed as Cyrise who dutifully obtained autographs (for her "sick" child) from Trevor Hoffman and the few other Padres that were there. These guys seem much bigger in person and they were all very nice.


Monday, 11/16/2002 WOW! What a difference a year makes. It has been almost a year and a half since Keenan was diagnosed with leukemia and just over a year since he was declared "in remission".

Since many of you have asked what's going on and I haven't updated Keenan's web site since January, I thought I should send this one out in addition to adding it to the web site. The good news is that life has been the good kind of busy which is why we haven't sent anything sooner.

I do hope you get sick of hearing this, but Keenan is doing great! Ever since December when he went into his current phase of treatment, things have just gotten easier. Although we continue to approach most situations with caution, we've done a lot of fun stuff. If one didn't know better, they'd not know Keenan was undergoing cancer treatment, but we have this kind of heightened sensitivity to life so there truly are no ordinary moments.

MILESTONES SINCE JANUARY

We did plenty of trips to the Zoo, Wild Animal Park, Aquarium and the Beach. Lots of play dates. Swam in the pool once or twice a day in the summer and just soaked up the fun. Here are some special highlights…

In May, Keenan participated in the Celebration of Champions. It is a very special day down at the San Diego Embarcadaro put on by Children's Hospital. There is a special "race" that the kids with cancer and in treatment and the survivors, who are no longer in treatment, get to run part of a course with some local sports and media celebs. The Padres are big supporters of the kids so many of them were there along with some of the Chargers. Keenan even got to meet Drew Brees (which Cyrise and Marc were excited too). After the daytime festivities, all the families were hosted to a Padres game care of Ryan Klesko. It was pretty cool and Keenan and Marc got to go down on the field before the game.

In July, Keenan and Ben went to Camp Reach for the Sky. It is an amazing camp for kids with cancer and their siblings. Since Ben and Keenan were so young, theirs was just a day camp. It was a magical week for both boys. Cyrise pretty much cried each day when she picked them up because they had so much fun and were just glowing with excitement. The camp is staffed mainly by volunteers, young and old, who just want to do things for the kids. At the end of the week, each child is given a hand-made quilt from a group of ladies at Rosie's Calico Cupboard in El Cajon. We're talking 80 to 100 kids. I really balled after that day and I was told they are already preparing quilts for next year.

On August 10, Keenan turned 4 years old. He wanted a firetruck birthday. So that's what he got. Decorations, hats and plates aside, Keenan got a real firetruck. Thanks to our dear friend, Mark Brown, the local firestation showed up, let the kids clamber on the truck and were just cool. It was a magical day between that and the clown. So this is now the new norm and the kids can't understand why the clown and firetruck doesn't show up for mom's birthday. Oh well.

Keenan started back to pre-school in September. Our biggest milestone yet. Our fingers are crossed, mainly due to the risk of him picking something up, especially as we get into the flu season. He is thriving and loves it. We were pleasantly surprised to hear that he is a star student, great helper and very kind and patient with the other kids. Cyrise was expecting whiney and clingey after all he's been through. Kids are so resilient.

KEENAN'S CURRENT TREATMENT

Things seem easy when you consider where we've been. Keenan still has a little over a year of chemo left (December 2003). Most of the meds are oral, we give them at home. He does get something every day. Blood test once every two weeks. Spinal tap and IV once every 12 weeks. Yes, this is easy and we're thankful for the miracles of modern medicine.

WHAT ABOUT THE REST OF THE FAMILY

Ben, 5, as we mentioned, has begun Kindergarten. He has his own special needs and is truly blossoming. He loves school and looks forward to when the weekends are over so he can go back on Monday.

Kodie, 14 months. She is our little sunshine. Walking, babbling, smiling. She loves getting into the middle of things with her brothers. Even though every now and then Cyrise will hear Ben or Keenan say, "You get her arms, I'll get her legs. Let's carry her" and they'll be carrying her face down! Cyrise made the mistake once of yelling, "Put her down!". In response to which, they dropped her. Now I ask much more nicely.

Marc has slowly gotten his life back. He enjoyed playing in his olde-guys-waterpolo league again this past year. I guess it's a good release to workout with a bunch of guys whose slogan is, "When we drink, we're all winners". Marc also pulled a superman these passed 4 months and lost over 25 pounds (basically the weight he'd gained through each of Cyrise's pregnancies).

So how's Cyrise? I'm well. It's been a tough year on all of us, especially Keenan. In trying to find the good in any situation, I know that we've been blessed to have crossed paths with people that we otherwise may not have known. Yes, there are some very special nurses and doctors at Children's, but even more amazing are the kids we meet. Strangely, I get strength from these sick kids that are fighting for their lives. Beyond that, I enjoy being home and being there with my kids. Even though its now been over a year, I am still adjusting to not working. I manage to get 2-3 ocean swims in per week. Just a mile or so, but it keeps me relatively fit and sane.

UPDATE FOR 2005

Keenan is doing great! He has been off the chemo now for a little over a year. He had blood tests every month for the first year off-treatment and spinal taps to check his spinal fluid every three months. Now his blood gets checked only once every two months, and no more spinal taps! Yeah! Next year will be even easier. Ten years from diagnosis (6/01) they will say he is cured.

He is six and a half now and in first grade. Just another exceptional six year old - but we know how special he really is. He is currently playing basketball and baseball. He will also play soccer when the season comes around. I think basketball is his favorite. Keenan is very determined and whenever Cyrise goes for a run he will join her when she returns for a run up the block. He always wins. When she does any weight-lifting around the house, he will follow her around and do the exercises too. He'll even watch himself in the mirror and make facial contortions (not that Cyrise does this or anything).

Keenan loves race cars and we have indulged him in going to a few NASCAR and some drag races. The whole family will get to go the Daytona 500 next year thanks to Make-A-Wish. Cyrise cannot wait to meet lots of young men in leather jumpsuits.

Keenan is an amazingly compassionate little person (though he is actually very big for his age). It's difficult to say if this is because of all the treatment he went through, but if this is his only "side-effect", it's a good one and we are incredibly thankful that he is healthy and happy.

Bye for now. Please feel free to email us if you have any questions about Keenan or the rest of the family.