Shawn got the run around with the Navy recruiters and SEALs so he joined the Army instead and is working towards the Green Beret/Special Forces. He loves it. In early 2009 he should go to Airborne training and his follow on to the 82nd Airborne at at Fort Bragg, North Carolina. As Shawn would say, hoorah!

Shawn couldn't get his waiver for the Navy SEALS but can doesn't need one if he has been in remission for 5 years (Feb 2008). He's waiting until Feb/Mar 2008 and is anxious.

Shawn's fourth anniversary after chemo.  Shawn graduated from Cathedral Academy and is trying to get in the Navy SEALs. He needs a waiver because of his Leukemia. In the meantime he has a great job building wiring harnesses for a Navy contractor.

We also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out His love into our hearts by the Holy Spirit, whom He has given us.  -- Romans 5:3-5 (NIV)

Shawn's THIRD anniversary after chemo.  Shawn continues his great health and is planning on playing Varsity Basketball, Soccer and Cross Country during his senior year. Shawn eats like a horse but is in tremendous shape.

Do you not know that in a race all the runners run, but only one gets the prize? Run in such a way as to get the prize. Everyone who competes in the games goes into strict training. They do it to get a crown that will not last; but we do it to get a crown that will last forever. -- 1 Cor 9:24-25 (NIV)

Shawn's second anniversary after chemo (Two down and one to go -- we were told by the doctor's Shawn has a 50% chance of a relapse within three years so each anniversary is important to me).

In the last year Shawn:
51 day mission trip to Botswana Africa (Shawn came back with less of a Christian spirit, not the life changing experience we hoped for). He got to see and do a lot of neat things.
Shawn won the Regional Cross Country with a time of 17:40.
SCISA 2A State Cross Country Champion - 5k (3.1 miles) with a time of 17:09 on 10/16/04
Susan Komen Race for the Cure 10/23/04
Spring 05 State Track Meet placed second in the 800 meter and again beat the previous state record

Shawn has summer track practice and is setting himself up to peak for the fall State cross country. At this rate he will do extremely well. Shawn also has a job at the Ice Palace (skating on the ice as a bouncer wearing a "staff" shirt). Really it's more like a babysitting job. The important thing is that he is disciplined enough to show up for work everyday after riding by bike over 6 miles via Ashley Phosphate. He had one wreck when a car turned in front of him and he has the major road rash to prove it. He voluntarily wears a helmet now.

Shawn just had his first anniversary after chemo. We had a long appointment scheduled which included a couple of heart tests. Shawn did very well of course and we have the final clearance for him to leave next week on his 51 day mission trip to Botswana Africa.

In the last year Shawn:
Recovered from the chemo,
In the fall of 2003 placed third in the state for Cross Country in his division,
State Track Meet (5/1/04) placed third in the 800 meter race which beat the previous state record
Interviewed for TV and radio spots for charities such as Children's Miracle Network, Red Cross, MUSC, etc.,
Performed a coin toss for the Charleston Battery's MLS home opener
Interviewed during his school's chapel services,
Interviewed at Cathedral of Praise's main church services (about 3,500 attendees).

Updates on other cancer patients:
Miriam is doing exceptionally well,
Mark is apparently doing extremely well (we didn't see Mark but did see his mom and sister),
My Aunt Joan lost her battle with cancer and died peacefully at home in March 2004. The funeral was very nice and it was great to see the extended families,
Eddie finally got his liver transplant, had some complications and isn't much better yet.

Today I added Paula's poem "Just Another Day". Paula is Wendy's friend that also underwent chemo for cancer, twice. She puts things in perspective. Thank you Paula!

Attached are two newspaper's article about Saturday's South Carolina Cross Country Championships. Shawn finished the 5,000 meter (3.1 miles) course under 18 minutes and placed third in his school's division. One correction is that Shawn was NOT "competing in this event one year after fighting cancer" -- it was a mere FOUR MONTHS! As just a freshman he has a lot of potential! I wish I had a video of him sprinting in the last 200 yards. Words can't explain how anybody could have that kind of reserve, heart and internal strength to sprint as hard and as fast as he did! We thank God all the time! Chan Pons is Cathedral Academy's Boy's and Girl's track team coach. This is the second year they have competed and both the Boy's and Girl's teams have taken first place in the state TWICE. As we have seen before, what an incredible encourager!

Pictures: Charleston Post & Courier article Columbia's The State article Pre-race Boys Top 10 CA Boys & Girls teams

Here are a few updates on other cancer patients: We try to go to the oncology clinic on days when the most of Shawn's friends will be there. At the clinic, one of the cancer kids mom commented that they are excited about having ONLY one more year of treatments. We saw Mark's mom at the clinic the last time we went. Mark was getting his broviak out and was doing extremely well. He's apparently very active again! Miriam is still undergoing her treatments and is having a typical side effect of her steroid medication but it's better than having cancer! My Aunt Joan needs your prayers. Her treatments continue but they've had to spread out the cycles because her recovery has been slow.

Wow time flies. Shawn is doing great - if you didn't know him and you saw him you wouldn't know he had had cancer (Shawn says you can tell the cancer kids at the pool because they have similar scars on the upper left chest from their Broviaks or port-a-caths). We went to my parents for a week and had a great time. They live in Illinois and share a lake with a few of their neighbors. We had coordinated our visit so that my brother John, from Baltimore, and his family would be there also. Shawn's 15th birthday fell during the week we were there and he had asked for beer battered bass and a trip to Eckert's Country Store for ice cream. The trip to Illinois, bass and ice cream has been a tradition that we have tried to do each year. Besides fishing we usually play lots of games including some pretty competitive croquet. It was a great time for all. Without treatment Shawn probably wouldn't have lived to see this birthday. Shawn and I were counting our blessings and reminiscing when I remembered something from the first day at the hospital. Shawn and I hadn't expected the cancer diagnoses and he went to the hospital with ankle weights on. When he almost passed out the first time I noticed he had them on. I took them but not having a place to put them I wore them around for the rest of the day. Now he wants to wear them again to help get in better shape. Shawn and I still are playing soccer on Thursday nights. This week we had a light turnout but had a good time in the rain and puddles. Lance Armstrong won the Tour de France today. Lance doesn't play soccer so Shawn hasn't shown much interest. I'm impressed by Lance and wish I had a picture from an article I had seen. Lance had crashed in the 15th stage and Ullrich, his primary competition, stopped and waited until Lance was riding again (Lance had done the same for Ullrich in 2001). Lance is a cancer survivor, an American and a great sportsman -- an inspirational guy!

Picture: Fishing with my Dad

Shawn had his one-month appointment today. He's had a big month. He's been trying to finish school. He had three weeks of school and still has some stuff to finish. The typical Shawn is procrastinating because he'd rather be doing fun stuff. He also went to Camp Happy Days for a week. While tubing behind a boat Shawn earned the nickname "Cheeks". Apparently his shorts were around his ankles and he didn't want to let go so he just spread his legs to hang on to the shorts and kept going. He learned that when they give you a checklist and it includes bug repellant you get some or you get bit (hundreds of bites - fortunately he was very healthy)! They had professional stuntmen, magicians etc. He bunked with Josh and Aaron, two guys from the MUSC clinic that I've mentioned before. The camp had over 200 people there. Since camp he met up with a few the campers for dinner. He liked Camp Happy Days so much that he said he wants to go every year. He can become a Junior Counselor at 17 and Counselor at 21. Shawn said the most memorable thing was the Balloon ceremony. Apparently they write wishes and prayers on balloons that honor campers that have passed away and let the balloons fly away. Shawn made lots of friends and knows that some of them will have balloons dedicated to them soon. We thank God every day for our blessings. Shawn has done so incredibly well and made this look so easy we wonder why God brought us through this. Shawn and I have been playing soccer at his school most Thursdays and miss it when we can't make it. Shawn occasionally goes running to help get in shape. He's been running about two miles lately and is trying to increase it. Lance Armstrong, cancer survivor, took the overall lead in the Tour de France yesterday. Lance is working towards his fifth consecutive win of the 20-stage 2,130-mile race.

Shawn had Mel Washington's entire Journey CD, a very good Christian music CD, dedicated to him. I added a page to the website to include the dedication text, a few 30 second sound clips and a way for people to buy them. If you purchase them from us or on his website, at least $4 per CD will go to the Can-Teen organization (Teens with Cancer). Shawn is donating ALL of his proceeds. Can-Teen is closely associated with the Atrium (Child Life Center at MUSC). I know Shawn would like to add to their video game collection and to support future trips like the Myrtle Beach and dinner cruise he went on. We think the CD is a very good Christian CD, we thank Mel Washington and Steve Brown for the dedication, and we think the Can-Teen organization is an extremely worthy cause. I expect Shawn will be able to donate over $500 to Can-Teen. The website also has a way to donate funds that will go to Can-Teen. Shawn is such an awesome kid! Shawn continues to do exceptionally well. He's riding his bike to school, riding in the neighborhood and practicing soccer almost every day. Even though we still have to be careful if he gets sick, I'm certain his blood counts will be well within normal ranges when we go back in July!

Journey CD

Shawn and I visited Eddie Roe in the hospital today. He was getting ready to get released. He did not have "pneumonia" but because of his liver problems had a build up of "ammonia" which causes him great confusion (couldn't remember putting the peanut butter in the freezer). A serious problem but easier to rectify -- no, not the peanut butter, the ammonia levels. A whole bunch of prayers were already answered! Shawn also had a dinner cruise with half a dozen other teens from Can-teen! It was a great evening for it! He was torn between playing soccer or going and eating bunches of good food! The people that were with him were amazed as to how much he can consume. His classmates have already seen him in action. His weight today, before the cruise, was almost 128 pounds compared to the 125 when first diagnosed with leukemia! He's also ready for another haircut -- he likes it short, about an 1/8th of an inch.

I added the You Know You're the Parent of a Child with Cancer When...

Your prayers are appreciated for Miriam's mom, Eddie Roe, my Uncle Ed and their families. Miriam's mom is recovering from this week's liver surgery to remove cancer after big problems last week. Eddie was admitted to MUSC today with pneumonia. Eddie is still on the liver transplant list and has been called 12 different times for transplants of which none of them have happened. Miriam (breast cancer) and Eddie both go to Cathedral of Praise and are hospital buddies with Shawn. Ed is recovering from cancer surgery this week. Ed had some non-Hodgkins lymphoma removed but is awaiting the pathology report. His cancer has been in remission for several years. Ed's wife, Joan, who I've mentioned here before, is also being treated for cancer (different type).

Another great couple days! Shawn had no side effects from this chemo. He rode his bike to school Thursday after a spinal on Wednesday. We also played two and a half hours soccer Thursday night with an "all ages" game at his school (the two oldest guys were 39 & 46). Friday night was another memorable night. We were given tickets to the Battery game by Joanne Stroud. She set us up with Michael Irving a Hodgkin's disease survivor, stem cell transplant recipient and soccer fan. Michael had coordinated for Shawn to do the coin toss before the game. He also was given a Charleston Battery shirt autographed by the whole team (thank you Joanne & Michael). It could've been luck (or a friend of Shawn's soccer coach) but Shawn's name was also drawn to kick the ball through a hole in a sheet of plywood at halftime. If he had made it, he and Cathedral Academy would've each received $500. It was a penalty kick and Shawn missed it by inches.

Pictures: Coin Toss Kicking contest

Shawn earned the Tough Kid award! Today was Shawn's last chemo. His ANC, platelets and hemoglobin counts are all up and should be within normal ranges within a month. His immunities will be low for several more months. He had a spinal and a bone marrow aspiration. In the typical Shawn fashion he decided to show up the doctors again. He had the spinal and bone marrow aspiration without anesthesia. Ross did the bone marrow aspiration first and talked him through what he was going to feel before she did it. Normally he's asleep, but today he got to see the marrow and bone chip before they took them away for the biopsy. I didn't have my camera with me during the procedures but a classic picture was during his lumbar puncture he had a four-inch needle (no syringe) sticking out of his back with spinal fluid dripping out into test tubes while he's awake and smiling. The anesthesiologists, doctor and nurses said Shawn did better than most adults. Shawn's only regret was that to prepare for today's anesthesia he "stopped eating at midnight for nothing". Shawn's next medical events should be routine exams every month. A relapse is a possibility but let's keep praying that it is many years (or never)! Shawn started "summer school" this week and has been riding his bike to school (3 miles each way). He's looking forward to getting in shape again for soccer. For extracurricular stuff he's going to try to play soccer Thursday evening and going to a Charleston Battery soccer game this Friday.

Pictures: Cindy & Shawn Josh, Shawn & Aaron

Shawn is having a very good week. Once again he is able to go off and do stuff you wouldn't have thought he could do. He had another spinal chemo Monday. Some of his counts were up others were down. Once again he did extremely well, slept on the table for 90 minutes afterward and was up the rest of the day as if nothing had happened. He had his 4-day trip to Atlanta the next day and kept himself busy getting ready for it (hopefully not too busy). On the Interstate on the way to the hospital Tuesday he got to see his first car accident happen. I didn't see what caused it but as soon as I heard the squealing tires I veered right and braked. We narrowly avoided two cars spinning out, stopped to make sure there were no injuries and then pressed on so he could still make his Atlanta trip. On the way to the trip I commented to Shawn how every step of the way God has been watching over him and he has been able to do things in the nick of time. The Bridge Run is another example in that had he been a little bit better he wouldn't have had the opportunity to ride in the lead car and if he had been a little worse he couldn't have been there! His platelets made a nice jump on Monday so he can ride roller coasters while at Six Flags over Atlanta! He took extra nausea medicine with him! It's not very often you hear about someone getting a spinal one day and leaving for roller coasterville the next! The Children's Miracle Network telethon raised over a million dollars locally this last weekend. That money stays local. Thanks to those of you that contributed. I've heard from client and relatives that the American Cancer Society is having several events this month also. Shawn will be Bat Boy at the Charleston Riverdogs Baseball on June 9th courtesy of the Children's Miracle Network. Shawn goes to a Charleston Battery soccer game on the 13th and is supposed to get the VIP treatment (thanks to one of our online friends) and a dinner cruise with other teens with cancer (Can-Teen) on the 19th. We are so blessed. Shawn's mental, physical, and behavioral health is exceptional compared to most of the kids with cancer. Outwardly he looks very healthy and his hair looks like he chooses for it to be that short. Within a few months I expect his blood counts to reach normal levels again and his endurance to be near normal again. He's your typical teen and would like to be doing the fun things as opposed to school work. He starts "summer school" next week so he can complete 8th grade!

Shawn will be featured on the TV program Children's Miracle Network Saturday from 11 AM - 3 PM and Sunday 9 AM - 2 PM. Children's Miracle Network is carried by WCSC TV, channel 5. They have done three or four interviews with Shawn in the last 4 months. Shawn will be there live from 11 - 1 Saturday (with live footage of him scheduled around noon) then we are off to Stephanie's graduation at 2.

Shawn had a great and busy Memorial Day weekend! Friday he had lab work and a physical. Almost all of Shawn's counts were LOWER but he was still allowed to go to Myrtle Beach with the Can-Teen group (Teens with Cancer). He wasn't allowed to ride bumper cars because of his low platelets. His ANC had decreased which was a surprise because we had thought it would go up 1,000 or even double. As soon as he got back from Myrtle Beach we headed to Short Stay (military recreation area at Lake Moultrie) for Stephanie's graduation party. He still couldn't ski, wakeboard or other similar activities but he had a great time. Shawn, Stephanie & I camped out in a tent for the night. Wendy had to work Memorial Day but she stopped by on the way to work! From there we went to another boating area and spent another day with friends from our church and their water toys. We had five boats, three jet skis, skis, wakeboards, kneeboards and pretty good weather. One of the guys there is a six-time national knee-boarding champion so we got to see some awesome knee-boarding. We were blessed with a safe and fun weekend! Chris & Lori, thanks for a wonderful weekend! Today Shawn has another chemo treatment. His platelets are up to 68 and his ANC is going the wrong way, down to 768. The minimum requirements for the chemo are 50 and 1,000 but they are going to proceed anyway. One of the other indicators is very good and helps predict higher ANCs. The chemo went well. Extra precautions were performed to help prevent the two days of bad headaches and vomiting like the last time. Shawn got up for dinner but otherwise slept the rest of the afternoon and evening. Shawn's nurse Cindy got permission to deviate from the chemo protocol and he will get his next chemo on Monday (a day early) so he can go to Atlanta (next Tuesday for four days) with another group of kids with cancer. Up to six kids from each hospital in the Southeast will get to go! It's great to look at situations that I used to see as adversity as simply minor bumps in the road, problems that with God, we can easily deal with. I am still amazed that Shawn was flirting with death two weeks ago and since then has been able to go to church, school awards, an out of town trip (unaccompanied by a parent), camping, play volleyball, ride a jet ski (fast but not wild) and a couple of days boating. Thank God!

Last night Shawn went to the church for Stephanie's (Teen service) senior night. This is the first time he's been to church since being diagnosed with leukemia. The teens had a graduation service for the local seniors that was very well done. I was out of town all day and unfortunately went straight to the service without my camera. Stephanie is such an awesome young lady! The other cameras I saw all used film - I love digital! Today Shawn went to Cathedral Academy's award ceremony. The headmaster, his math teacher and his computer/soccer coach presented Shawn with the Award of Courage and a nice trophy. Shawn's headmaster, Cal Huge read the following inscription "Never give in - never, never, never. Never in nothing great or small, large or petty. Never give in except to conditions of honour and good sense. Never yield to force; never yield to the apparently overwhelming might of the enemy. - Winston Churchill." The speech was made 29 October 1941 to the boys at Churchill's old school Harrow (For more info on Churchill go to www.WinstonChurchill.org). Shawn received a standing ovation. While researching Winston Churchill this evening I found another great quote of his - "The pessimist sees difficulty in every opportunity. The optimist sees the opportunity in every difficulty."

Pictures: Cal & Shawn Award

Another incredibly awesome day. This can't be the same kid that was in ICU a week ago today! Shawn looks great - he has color, a great attitude, great energy and remarkable blood counts. Shawn's ANC jumped again, this time to 1,191. His platelets only dropped a little which is also great news. It means he's producing his own because otherwise they would've dropped a lot. He also gained 5 pounds since Friday. I told his clinic nurses I wanted to get their picture and his primary nurse, Cindy, offered to let Shawn stick her with a needle and draw blood for the picture. He did it like a professional the first time and with no pain. She obviously trusted him. It's one thing to offer your body for nurses to practice IVs on but to let a patient stick you for fun??? Don't try this at home. In my Air Force days we called that "practice bleeding". Shawn only has three more minor chemo treatments left. Cindy also made arrangements and scheduled Shawn so that he can get his treatments early on Tuesdays so he can go on the Atlanta trip (health and transportation permitting)! Six months ago I wouldn't have called undergoing a chemotherapy shot in the spine "minor". We stopped by Cathedral of Praise and Cathedral Academy on the way home. Shawn saw and ate lunch with his classmates and popped in on two special classes. Mrs. Weather's second grade and Mrs. Adamczyk's forth grade class (and others) have prayed repeatedly for Shawn so we went to see them.

Pictures: Clinic Nurses Mrs Weather's class Mrs Adamczyk's class

Shawn's home. He's lost 12 pounds during this hospital stay but some home cooking will take care of that. He was given a platelet transfusion yesterday. His ANC gained a little yesterday (up to 210) and today it jumped to 488. He hasn't had a "fever" for 48 hours. Our definition's of fever differ. Shawn isn't normal! Not only that, his normal temperature is in the 97s so we start to watch it closer when it gets to 98-99. He has to get admitted if his temp gets up to 101. He still has some antibiotics to go but they are pills (they discontinued his antibiotics by IV). With his nurse watching, Shawn took out his IV. He can kick tail on his breathing toys and looks forward to using them to get his lungs back in shape for soccer. On the way home we stopped and got triple-decker BLT sandwiches - hmmmm! God is great!

Shawn's ANC took a dip yesterday and a nice rebound this morning up to 164. They took him off oxygen last night but will continue to treat the pneumonia for 3-5 more days. As he develops more white blood cells they expect his cough to increase (which is a good thing). They also discontinued one of his five antibiotics this morning. His fevers continue even with the Tylenol. He's sleeping well and in great spirits. He may get to come home in a few days. We'll have IV antibiotics to take care of but I've done those with him before. Two of Shawn's nurses from the clinic, Cindy and Pam, even came over to see Shawn yesterday! I carry my camera to clinic but still don't have a group shot of his clinic nurses. Happy Days and Special Times sent me a steak dinner yesterday. Shawn must've been sick because he didn't want one when they called the day before. I wasn't here at the hospital so Shawn ate it!

Shawn had a pretty good night. His oxygen saturation was too low and only set off the alarm a couple times during the night. They had two blood transfusions for him but held off on the second one because his hemoglobin count was borderline. He also has another breathing exercise toy. This should help his oxygen saturations if he’ll use it. He also doesn’t like be hooked up to the oxygen and he keeps taking it off. His fevers of 101 are persistent. His ANC is up to 46! It was 9 yesterday but I’ve seen several times where it went back to zero (could be inaccuracies in the blood work at that low extreme). Thank God for progress. I talked a lot more with Miriam today. She has 14 chemo appointments left for her breast cancer. A bigger concern was that we pray for her daughter, Elizabeth.

Wow, another intense day. I'll be glad when this roller coaster stops. The second x-ray showed a little more pneumonia. Shawn was taken to Intensive Care so they could perform a procedure in his lungs. They scoped them, flushed them with some saline and took samples for more tests. The scope was an impressive device that was about two feet long, had a light, camera and was steerable. They booted me out immediately before sticking the thing up his nose but the oncologist came to get me within 10 minutes when they were done. Shawn was coughing (you would be too with some of the ocean in your lungs). He's frustrated because he has IVs in both arms, oxygen hose up his nose (right now it's on his forehead instead), a finger wired to an oxygen sensor and a blood pressure cuff on most of the time. He'd like to rest but every time he moves he pulls on something. He's getting another blood transfusion - that's three in four days. He's irritated because the nurses in ICU stuck him 5-6 times to get two IVs in him. Shawn doesn't get irritated very easily so it is justified. Shawn has great veins but I watched three different nurses each try their hand at sticking him. He has a ton more appreciation for Cindy in the clinic. Cindy is his primary nurse there and she has done it painlessly, first time, every time. Shawn now has a few more holes and bruises. Shawn had some good times too. Shawn was happy to get out of ICU, disconnected from everything and back to his room and his nurses. Shortly after, the Tallons stopped by. The attached pictures are of Shawn having a "blond moment" and Shawn & Miriam. Shawn didn't need any supplemental oxygen for 6 hours after the procedure. Unfortunately I had to be Bad Dad and wake him up to put the oxygen back on him. Wendy's friend Lois sent the following quote from Albert Einstein whom I admire - "There are only two ways to live one's life: One is as though nothing is a miracle. The other is as though everything is a miracle." Despite the grueling day I have faith that we are beating this pneumonia and now just need the test results to prove he's getting better.

Pictures: Blond Moment Bald Eagles

I'd be lying if I told you Shawn was getting better. Shawn’s pneumonia is worse and is unrelated to the high fevers the other day. We awoke countless times to his monitoring devices setting off alarms when he moved or the values were too low. They were sending him down to get another chest x-ray and changed their minds and are bringing the machine to him. He's not allowed to eat or drink until at least after the pulmonary doctor checks him out. I met with the oncologists twice this morning and a special visit with Dr Sultan to share brownies. He suggested we go eat them in front of Shawn. Shawn's on 4-5 antibiotics, oxygen, and breathing exercises but is doing well. He will get yet another blood transfusion today. (You definitely get a higher respect for blood and platelet donors here! For you donors you'd be glad to see the nurses try to get every drop out of the bag and lines.) He's not having difficulty breathing and did very well with his breathing exercises a few minutes ago. He matched Lance Armstrong and can "ring the bell" on the breathing tester. I think it's neat to see Shawn's perspective of Lance's book. When he wrote his book report he'd ask me stuff like dates and people's names. Shawn is competing with Lance. I forgot about the ringing the bell and he reminded me! Coughing is good for him. He got a call to pick up something from the front desk. I joked with him about somebody sending him flowers and he laughed until he coughed, turned red from lack of air and waved me out of the room so he could stop laughing and breath again. He's sitting up playing on his laptop right now. Thanks for all the prayers.

Happy Mother's Day. Shawn couldn't go see Wendy so Wendy came to see Shawn. Good news - bad news. They may have found what's causing Shawn's fever. The bad news is he may be in the early stages of pneumonia. He had a low oxygen saturation level, a shallow cough and a little pain in his "back" on deeper breaths. They put him on oxygen and sent him to x-ray. The x-ray confirmed a hazy lower right lobe. Listening to him with a stethoscope they are now picking up some cracking noise in both lobes. They added some antibiotics that are better for treating pneumonia. They also gave him another blood transfusion because his hemoglobins were getting low again (he just had a blood transfusion Friday). Shawn's spirits are of course high and he doesn't seem to mind the nuisance of the oxygen tube in his nose. He's comfortable and not having difficulty breathing. He's gained a tube to his nose and a wire to his finger as his sleeping buddies. Tomorrow morning we'll get new blood work and some more opinions from the oncologists.

Shawn's temp has stabilized between 99 and 100. He got a blood transfusion yesterday and will get platelets this morning. His ANC is zero. He's in great spirits, in fact the best I've seen for a Saturday morning (usually he's asleep). Now he's scheming as to how he can re-arrange the upcoming outpatient chemo treatments around his planned trips to Myrtle Beach (May 23-25), Memorial Day and Atlanta (June 2-6). The doctor said 99% chance that he could NOT go to Atlanta. The Myrtle Beach and Atlanta trips are sponsored by cancer groups and include nurses from the ward!

Welcome back to our rollercoaster world. Shawn's temp was down to 101 by 3 AM and continued to drop to 99. He was wide awake and in great spirits at 3. I asked them to get him some Benadryl to help him sleep, they asked the doctor and he got it. The Benadryl was injected slowly into his line and Shawn said it burned. One of the advantages of the Broviak was that it went into a large vein which dilutes the medications quicker. We still don't have a clue as to why the temperature spikes. His blood counts were incomplete but he'll need platelets and blood soon. We are still waiting for the doctors to make their rounds this morning!

Shawn's temp has now risen to 103.6. He's sleeping okay. They think it may be viral because the cultures are still negative. Any negative change will mean a new antibiotic. More later.

What's this world coming too? I was late to the lawyers for refinancing our house. The lawyer's secretary called and I told them Shawn had cancer, we had an emergency and I spent the night in the hospital and they said they would pray for Shawn. Shortly after that Waterfield Mortgage called and I explained it again and they also said they would add Shawn to their prayers. The lawyer did the same. I didn't tell any of them about being a Christian. Isn't God awesome?!

Quick update. Shawn's fever broke at 1 AM and his blood pressure at 4:30. He's looking fairly normal compared to the wiped out look last night. The doctors said the bacteria culture is negative so far but because of the blood pressure expect it to be positive. His temperature is holding at 100 (with his normal temp being in the low 97s). Things have returned to "normal" here. Thanks for the prayers and concern!

Shawn needs your prayers. Shawn had a bad day. He had a 1 degree fever for 36 hours and then it started to climb. We left the house at 5 PM as it hit 102. We called enroute and they didn't have any beds in the ward so we were told to go to the ER where his temperature was already 102.8. Over an hour after Tylenol and some antibiotics he was only down to 102.6. Shawn's Broviak site looks like it is healing very well and the doctors don't know why he has the fever. We moved to the ward and his temperature continued to climb to 104.1. He had the shakes for a couple hours and had three blankets on. More Tylenol, more antibiotics and more fluids. His blood pressure dropped and they gave him LOTS more fluids by IV. They talked about moving him to Intensive Care. He's not going to get much rest wherever he is because they check on him every few minutes. For the most part he's trying to sleep but at 11:30 his spirits are still good and he even joked with the doctor when asked questions to see how coherent he is. As of midnight his temperature still hasn't dropped. At 1 AM his temperature finally dropped to 100. His blood pressure is still low. They check it three times (to confirm the numbers) every half hour. Poor Shawn -- No rest for the weary.

Shawn's platelets are so low I could play tic-tac-toe with Shawn - while he's asleep! We went in today as scheduled and he got the platelets and a blood transfusion. We knew he had to get the platelets before they cut out his Broviak so he would have some clotting abilities and less bruising. When Lance Armstrong had his central line taken out they pulled it out. Shawn watched while they numbed the area with Lidocane, made two incisions and performed the procedure. Shawn's line had two "cuffs" on it to keep it from being able to be pulled out easily. They had to cut the internal piece of the Broviak in two and then cut the cuffs free. The doctor figured Shawn as a liar pretty quick. They would ask him if it hurt and he would say "no". Later they said "On a scale of one to five, with five being the most pain how would you rate it?" and he said "Zero". I watched the procedure, Shawn, the surgeon and the nurses. There is no way they could have just pulled that out. The surgeon had to dig to get that line out. The nurse's eyes told the most. The gritting of the teeth by all, and closing of the eyes (except the surgeon) were giveaways but more proof Shawn's as tough as they come! Shawn is so admired -- I think all but one nurse in the clinic came in to check on Shawn after the procedure. Thank God for another milestone in Shawn's treatment!

Picture of calm: Broviak removal

Shawn has good days since Wednesday. We were very fortunate in that his counts on Saturday didn't require a platelet transfusion but they are very low. He will definitely get one Monday. His platelets are so low that tonight he even checked his butt to see if it bruised from sitting. He bruises by just looking at him hard! He's a great sport about the whole thing. Last night Stephanie had her Senior Prom and 24 people came over before the prom for pictures (4 couples, parents, friends etc). I was extremely protective of Shawn and sent him to his room. It's easy for us to lose sight of the fact that he's as sick as he is because he looks great. Stephanie looked great too! Today is Stephanie's 18th birthday so Shawn baked her a cake! Tomorrow Shawn will get a platelet transfusion (and possibly blood) and then they can remove his Broviak. Blood transfusions are a drag because they take a few hours.

Picture: Beauty and the Beast (with hair) Beauty and the Beast (without hair)

I was hoping to see a 4 year-old Hispanic kid at the clinic today named Jorge (pronounced hor-hey). Jorge has a different kind of leukemia than Shawn but he is just as brave. When first diagnosed he was very shy but has been opening up. I've seen this kid drawing his own blood and asking the nurses if it was enough! I bring my camera to the clinic in hopes of seeing him and getting his picture because I know I couldn't possibly be able to show you how amazing this 4 year-old is! The nurses in the clinic are also impressed by the 4 year-old but insist that Shawn is "the most awesome" of the patients that have been through here. We are just very blessed!

Picture: Preparing for exams

Shawn has been doing very well but gets tired easily with light physical exertion. He's taking a couple extra naps a day. My brother Mike and his wife Antoinette flew in today and visited for the day. They are on their way to Kiawah for a few days. They brought Shawn two more computer games, Splinter Cell and Sim City. He and Stephanie were rationalizing why he ought to be able to go out to dinner but I know his ANC should be near zero and something is telling me to be cautious. He was happy with a sub sandwich and his computer games! After the rest of us came back from dinner we sat down to play cards and Shawn went back to computer games! Shawn really likes his new war game, Splinter Cell. Shawn is also getting some color on the top of his head. We think its hair but it could be camouflage!

Shawn continues to do very well. He's feeling great and enjoyed giving himself a shot. Not that he likes giving himself shots but he liked the novelty of it. Fortunately it is not something we have to do very often. He's a lot like me and he'll do most anything once. I took pictures of him checking for blood draw, flushing the two lumens of his Broviak and giving himself a shot.

Pictures: Blood return Double Flush Shot

Shawn finished this course of chemo at 5 PM. This completes his in-patient chemotherapy. He got a congratulations banner that all his nurses signed and a small cake. He also got and a batch of brownies from Maribeth. His ANC is dropping rapidly and is expected to reach zero soon. Shawn's second course of chemo in this cycle is the three lumbar punctures. They won't be given until his ANC gets back up to 1,000 and his platelets above 50. When they do get started they are done as an out-patient with one week between each spinal. Based on his previous recoveries from zero ANC it will probably be at least three weeks before we see 1,000 again. Shawn has an appointment Wednesday and at this rate may need a platelet transfusion.

Picture: Congrats

Hey Baldy! What would you do if you were called "baldy" (or your kid)? Shawn had his first confrontation with name callers. Shawn was out riding his bike in the subdivision when he rode by a half dozen kids his age and heard two or three of them call him "baldy" a couple times. He turned his bike around, rode up to their driveway and asked who called him baldy. About that same time one of their dads came out. They all denied calling him baldy. Shawn told them "It's all right with me if you call me baldy. I have cancer, I didn't choose to have cancer or be bald but I'm cool with it. Most people don't take it as well as I do so please watch your words." Shawn said they were too embarrassed to say anything and the dad didn't ever look up. I told Shawn I was really impressed how he handled it. I also said that I, and probably 90% of the adults, wouldn't have done as well as he did. I am proud, impressed and blessed!

Shawn had a very good day. He felt great and went to his school's soccer game. He couldn't play but wanted to of course. We kicked the ball around after the game and he got winded easily. After that we went home and Shawn rode his bike while I walked Sabbath a mile and a half. Its 1 AM and he's still up. This is the same phase of chemo he was in when he played soccer with the team last time. His counts are one-third what they were then but his spirit is just as high!

Picture: Soccer

Shawn had a pretty good day. It started slow with a slight fever and not feeling well enough to go to church for Easter service. He said he wanted to go but didn't feel like it. He slept on the couch from the time he got home until he went to bed last night. He had burned his tongue on his ramen noodles and didn't eat for 24 hours. He was up most of the day today. I wish I could predict Shawn's health and ANC for the next few days accurately but I suspect they will be good. I expect the chemo to start kicking in late this week. His strength and attitude are still a great blessing! I hope you had a meaningful Easter!

Shawn continues to sleep through the chemo. His counts continue to climb with his ANC up to 1370 and platelets up to 113. He finished his IV chemo by noon and will get a different chemo via a shot at 3 PM. He is expected to be released at 4 PM. The chemo probably won't put the hurts to his ANC until next week. He's not scheduled back until Thursday, which is another two days of chemo! Have a happy Easter!

Shawn is doing great with the chemo. He's not having any negative symptoms other than sleeping 20 out of 24 hours. His ANC and platelets were up slightly.

Shawn is no longer "too sick to get admitted to the hospital". His ANC was up to 1162 and his platelets were 105. His weight was within one pound of when he was first diagnosed with leukemia! He passed his blood tests today and was admitted for chemotherapy. We spent the day on "hospital time" waiting for the chemo to get started. It was 10.5 hours before the chemo got started. I'm hoping he can get released from the hospital Saturday afternoon so we can do Easter service. I'll have to wait to see what his counts are and then sneak him in and out so that he doesn't get mugged (hugged)! Maybe Shawn can borrow one of Wendy's Easter hats and Miriam's wig!!! I got an e-mail from Miriam with pictures and may share them after I get her permission. Shawn & I stopped by Carol Storey's room today. She had been readmitted because of an infection in her "line" (similar to Shawn's Broviak). Mark got out of the hospital last week so must be doing well! Please keep the prayers coming!

Today Shawn's ANC was 750, his platelets were 85 and his monocytes were high. Translated into English, they said, "Come back Thursday". Shawn was NOT admitted today for chemo because his ANC was only 750 and he needs 1000. His ANC growth has been minimal. His platelets were very good at 85 and his monocytes were high indicating to them his neutrophils would be climbing soon. His headaches have subsided, he's eating and drinking again, he's feeling great, and he's doing very well emotionally. His blood is saying he's too sick for chemo and his attitude is "If I can't get chemo lets play soccer"! He's praying to be able to play in the tournament in May. He will need a miracle!

Shawn still has a bad headache (since Thursday). He doesn't have the nausea anymore. He's spent most of the weekend on the couch because of the headache and some muscle ache. He hasn't had a fever or any other bad symptoms. We go in tomorrow for what hopes to be the next cycle of chemo.

Shawn has had better days. He vomited frequently but he still wanted to go watch his team's soccer game. We went but he spent most of the game "feeding the worms". He has a great attitude because I know he'd do it again tomorrow if his team had a game!

Shawn had a pretty good day. He had some nausea, vomiting and a bad headache from the spinal. He's also a little sore from the bone marrow aspiration. I called the doc and they also called me back later. We went to the Family Circle Cup Tennis and watched half of a Serena Williams match and a half of the next match. Had some more nausea, vomiting and headache this evening. No fever though and his spirits are still good. I have two nausea medicines for him so tomorrow I'll change them to see what makes him feel better. I know the one I didn't give him today will also make him sleepy. He got his new soccer cleats today so he's happy. He even wore them on the couch (don't tell W-e-n-d-y).

Shawn went to clinic today for blood work, physical, lumbar puncture and none marrow aspiration. His ANC DIDN'T go up in the last couple days. His platelets were up to 43 but weren't high enough to do the lumbar puncture until he had a transfusion. Shawn wants to play soccer when his school team goes to tournaments in May and is asking for your prayers. The doctor was very frank with him and was pretty certain Shawn wouldn't be able to. They expect this next chemo to take a couple months for him to recover well enough to play soccer. Shawn told the doctor he hadn't been right yet (about Shawn's recovery times). Shawn likes to prove his doctor wrong and is ready for this challenge.

The bone marrow drive was a big success. They had 125 people sign up for the test and registry. They had so many that they stopped encouraging people to donate because of the expense. I also learned a little more about the "markers" in bone marrow testing. HLA typing is done to determine if there are enough similar DNA characteristics (markers). Minorities, like the Asians mentioned a couple of days ago, have certain characteristics that are similar (skin, hair, eyes, etc) but have a smaller pool of potential donors. Thanks to the Cathedral people who came out, donated and supported Shawn.

I got another e-mail from Miriam and she said that she's much better today, has her appetite back, and will get a change in medication to prevent the nausea.

Have a very blessed day!

Miriam had her first chemo last Monday to help fight breast cancer. She's had some nausea and loss of appetite. She said she knows she'll be fine and "It is just harder than I thought it would be". Shawn, Linda & I visited Shawn's hospital ward and Mark was still there. Shawn is an incredible kid and makes it look easy. Please remember Miriam & Mark in your prayers.

We started the morning very early with leaving the house at 5:30 for the Bridge Run. It was a beautiful day. We dropped off one car and drove to the other side of the bridge at sunrise. Vanessa Hill of the MUSC Transplant Center was there, introduced Shawn and drove Shawn and I from the start of the Bridge Walk to the start of the Bridge Run. Shawn got to ride with the director of the Bridge Run with some people from BiLo (grocery stores) in the race's lead car (a top of the line Rick Hendrick Jeep). Including a group of about 30 from Cathedral, there were 18,000 runners and 12,000 walkers. I rejoined the walkers, got some pictures while we were warming up and rejoined Shawn after the race at the Transplant tent. Shawn worked at the tent recruiting and helping Bone Marrow Donors. One of the Transplant Center people came up to me and was so proud of Shawn because he recruited a trio of Asians that were going to walk away (There is apparently a difference and a demand for Asian bone marrow). I'll probably get the results of the Bone Marrow Drive tomorrow. The test was free (normally $65 - $70) and just involved a finger prick for blood samples. BiLo and Rick Hendrick cars were major contributors to the drive. Rick Hendrick is apparently in remission from Leukemia! We ate lunch downtown and came home for naps. Later, Shawn and my sister watched Kansas advance to the NCAA finals! Rock Chalk Jayhawks, Go KU! What a great way to finish a beautiful day!

Pictures: Sunrise- Lead Car - Wendy, Emily & Brooke - Steve, Wendy & Linda on Bridge

Shawn went to the doctor for blood work. He will NOT be able to walk the Bridge Walk. His ANC was 370 and despite being low was not the primary concern. His platelets, which help with blood clotting, were low, necessitating a transfusion. He is showing signs of Petechiae (puh-TEE-key-eye). The definitions make it sound really bad but the symptoms are a fine red rash. Petechiae are tiny broken capillaries, pinpoint-sized hemorrhages, or tiny areas of superficial bleeding into the skin. We all get them from hard coughs, vomiting etc. Shawn has NOT been coughing or vomiting, is getting them and doesn’t have enough platelets to prevent or minimize them. He removed a piece of tape from his chest and it started to bleed tiny little drops of blood. Walking the Bridge Race could cause minor aches or pains to you and I but extremely serious consequences for people like Shawn. Bleeding is bad, infection is bad, walking bridge is bad. What is GREAT is the Cooper River Bridge Run people were standing by for Shawn’s update and he will get to ride in a convertible, Humvee or sports car to lead the race! You only get that kind of opportunity once, you can run the race another year! Shawn is really looking forward to the ride across the bridge. I picture Miss America waving from the convertible and Shawn having a blast in the Humvee! In a perfect dream it would be one convertible Humvee! Shawn & I will be there by 6:30 tomorrow morning! I'll take pictures but don't be disappointed if Miss America doesn't show up! Shawn is not disappointed and we are very blessed to have such an opportunity. The doctors, nurses, myself and most importantly Shawn are all happy!

Shawn had a "press conference" and television interviews with Channels 4 & 5 at home this morning. They will air portions this evening. If Shawn can't do the Bridge Walk Saturday he will get a police escort and convertible to ride the "Bridge Run" (if the doctor's allow it). Shawn and both TV channels did an outstanding job with the interviews. The link to Shawn's Channel 4 Interview is Shawn & WCIV TV (Can be played directly from this site or right click the link and save the 2MB download). Thanks go to Steve Brown for getting the WCIV news clip! God is Great!

Pictures: Soccer for TV- TV crews - TV Camera

My sister Linda arrived this evening. She will be here through the weekend and will join us for the walk. We're praying for Shawn's counts to reach 500 by morning, good weather and a healthy Walk!

To get Shuttle bus, ferry and bridge closure information go to www.BridgeRun.com. We will meet at the gas station at the corner of Coleman Blvd and Patriots Point Rd between 7 and 7:30 AM (the bridge closes at 7, the wheel chair race starts at 7:45, the Run at 8 and the Walk at 8:30).

We will meet all those interested in joining us for the Bridge Walk at the gas station at the corner of Coleman Blvd and Patriots Point Rd. Pray for good warm weather!

Map: Bridge Walk Start

March 32 isn't a date and it isn't an April fools joke. Thirty-two little ANC's marched out of the hospital on March 31, 2003. I was told this morning his ANC was zero. There isn't much difference between zero and 32 when you want 2000, but in this case it indicates enough progress. Shawn got a platelet transfusion and was released from the hospital this afternoon. We went over to the Transplant Center for T-shirts and then home. Thanks for the prayers!

Shawn's ANC is the square root of 1 minus 1. Zilch, zippo, nada, nil, goose-egg. He doesn't need any blood or platelets today. His spirit is great. I know God will answer the prayers for ANC is His time and for now He's teaching me patience. Shawn has a goal of getting released from the hospital on Tuesday so he can continue to get his ANC up in time for the Bridge Walk on Saturday. Speaking of the Bridge Run/Walk - if you signed up for the run/walk elsewhere (i.e. online or in person) and would like a Transplant Center T-shirt let me know ASAP what name you registered under, run or walk, and what size shirt (I think they are out of small and medium shirts). I'll also post a meeting place and time for those that would like to run or walk together!

Shawn's ANC is STILL zero. His white blood cell count went up dramatically but still no neutrophils. He also needed 2 units of blood. The nurse was very considerate and didn't give him the first one until after Shawn's company left. They give patients Benadryl before hand, which of course, makes him go to sleep. He woke up during the KU game, they gave him more Benadryl, started another bag of blood, watched KU beat Arizona, and we stayed up playing Ghost Recon (war game) on the laptops! Shawn's nurse Lisa joked with me and said she didn't want him sleeping on her shift and delayed the Benadryl! The nurses still love him. In contrast the neighbor kid screamed for over an hour with her procedures. Shawn doesn't get many visitors anymore but I know one in the family that was here today gets uneasy around needles and would have run out with that noise.

Shawn's ANC was zero and he had to get platelets. Shawn and I went downstairs to get pizza for dinner. I left the hospital after midnight and he said he would be up for awhile. Too much Mountain Dew and feeling good kept Shawn up past 4 AM. Mark was readmitted with fever and sores. I forgot to mention it before but I noticed a couple weeks ago he's now wearing a WWJD (What Would Jesus Do) bracelet.

Shawn had a very good day despite his ANC still being zero. I saw a note on a whiteboard about ANC levels with 1500 being "mild", 1000 "moderate", and 500 as "severe" -- so what is zero??? His white blood cell count more than doubled today and is a factor for the ANC so maybe tomorrow we'll see something other than zero! They discontinued one of his antibiotics! Shawn was brought an exercise bike by the hospital today and rode for 30 minutes. And to add to all the good news we watched Kansas beat Duke in basketball. My two younger brothers, my sister and I all went to KU!

I spoke with Vanessa today and her office is not accepting any more entry forms but you can still register the normal ways such as online at www.BridgeRun.com or in person. I suggest you go online to see where and when you can register. After you register please let Lori at Cathedral Academy know what size shirt so we can get you the Transplant Center's T-shirt.

The Bridge Run/Bone Marrow Drive is just 10 days away. Please try to get your entry form in to Lori by this Friday. The price goes up on the 30th and I don't know how many T-Shirts they have.

You can still register online at www.BridgeRun.com or in person. I suggest you go online to see where and when you can register. After you register please let Lori at Cathedral Academy know what size shirt so we can get you the Transplant Center's T-shirt.

The bone marrow testing will be done from 8 AM to 12 on Apr 5th. The tent will be located in Ansonborough by Calhoun St. All ages can run/walk but only 18 and over can donate blood samples for the bone marrow drive. You do not have to enter the race. None of the Bridge Run money goes to the Transplant Center. The Transplant Center has not asked for it but monetary donations are accepted at the tent and aren't required (Checks can be made out to MUSC Transplant Center).

Acts 20:35 says it well, "It is more blessed to give than to receive".

Shawn's blood work was incomplete so we didn't get an ANC on him today. They could tell he needed platelets and gave him a transfusion. He's moving around a lot more and was allowed to go downstairs for a sub sandwich. His mouth sores don't seem to bother him as much. My dad said Shawn ate a whole 12-inch sub for lunch.

Shawn's ANC still sits at zero and his platelets are low but Dr. Griffith (me) has plenty of faith that tomorrow we will see a change in his ANC. Shawn also wanted a sub sandwich for dinner! Yippee! It's odd getting excited about my 14 year-old son eating a sub sandwich but sometimes it's the little things that count! We snuck out the backdoor to Subway. We probably would've if we didn't get permission even though we got in trouble for going to Dairy Queen last week when we were home. For those that didn't know it Subway is on the first floor of the hospital. Shawn almost had tears in his eye from the pain while eating but he finished his sandwich and chips. The pine pollen is especially bad here in Charleston and has coated the cars with yellow dust. Shawn does not have my allergies but hopefully his low immunities can handle the pollen when he gets out.

My parents spent a fair amount of the day with him and that gave me a chance to get a lot done on the car, house, mower and yard. Tomorrow they will join us at church for early service and then go see Shawn. Keep the prayers coming and don't forget our military and leaders!

Shawn developed an allergy to the antibiotic Vancomiacin during the night and had itching and a red head. The solution is to give him Benadryl and slow down his IV of Vancomiacin. We are so blessed because after everything he has gone through he still takes things like a little bump in the road.

Shawn continues to be "the exception" to everything and surprised the doctors with an incredible recovery from yesterday! Yesterday Shawn felt poorly and had a 6-hour clinic visit, today he felt better and his visit went very well and tonight was an exception to the exception. My Dad rushed him back to the hospital this evening with a fever. He will probably be admitted for a minimum of 48 hours.

Shawn’s has bruised hands from playing soccer on his laptop (they look bad), mouth sores and is feeling generally poor. He’s not eating very much because of the sores. We went in today for a scheduled appointment and the doctor wanted to admit Shawn because of his very low counts. Shawn ended up getting a platelet transfusion, some fluids and was allowed to decide whether to be admitted or go home. Shawn perked up a little, chose to go home but was told he would probably have to be admitted within the next 24 hours. The doctor knows us well because he also told Shawn not to try to prove him wrong. Shawn looked at the clock as we got in the car to see when his 24 hours was up! They also scheduled us back in to the clinic tomorrow morning to check on him again. In the meantime we check him quite regularly to make sure we don’t need to get him in sooner! This is all to be expected (been there, done that, didn’t get the t-shirt). Today is about the same as Feb 13th and 14th. Emotionally though he’s doing very well!

Shawn is doing well but is very tired this evening. He will probably get worse before he gets better in about 5 or 6 days. My parents arrive tomorrow and will park their motorhome on base. I had the consult today with Shawn's doctors because of a miscommunication about his chemo. Some of the hospital staff and I had incorrectly thought that he was finished with chemo. There has been NO change to his prognosis or diagnosis; it was purely a miscommunication. Shawn just finished the "Consolidation" phase and will now go to the "Intensification" phase. The original treatment is the correct one and has a third 1-2 month course of chemo scheduled in April. He will undergo two inpatient cycles of chemo in April (coincidentally right after the Bridge Walk), followed by a recuperation period and then three outpatient intrathecals (spinals) spaced a week apart. The treatment is still aggressive and intense. Unlike some other types of leukemia there is not a maintenance phase (i.e. a 12 hour chemo once a month for a couple years).

We finished this round of chemo at 8:00 PM and were on our way home at 8:30! Shawn's counts are low but he is home! The discharge orders include the statement "Play sports within reason - don't over do it". The doctors are singing a different tune compared to the strange looks we got when we even talked about the Bridge Walk! The school and soccer referees ought to get a kick out of that note! The Broviak might not be removed for 6 months and I'm not keen to the idea of it being there any longer than it has to! More info tomorrow after I have a consult with the doctors!

Shawn's spirits and energy are great. He stayed up late the last two nights with his nurses. He has been asking for an exercise bike but somebody must've rode off with it! He's been playing soccer for a couple hours a day - on his laptop! As you can see by the picture soccer is a physical sport and they started Gatorade by IV (just kidding)! The chemo and orange Gatorade are close enough in color I could make this place go ballistic by pouring some Gatorade on the floor beneath his chemo bag! The Hazardous Material Team and the evacuated patients wouldn't think it was very funny! Shawn Alexander brought dinner and brownies (thank you!) and the picture is of Dr. Sultan and Shawn fighting for the last brownie.

Pictures: Laptop Soccer - IV - Fighting w/ Sultan - Dr Sultan - Steph

Shawn is doing great. To some degree we had an uneventful day. Our appointment was at 9 AM. We had blood drawn, did a lot of waiting, saw a doctor, waited for the blood work results, had a lumbar puncture for one chemo, had a late lunch, had an interview and filming for the Children's Fund, had an echocardiogram, had an EKG, got admitted, played bingo in the Atrium with Mark and others (free pizza if you played bingo), "Bad Dad" made him do some schoolwork (Shawn very lovingly calls Wendy and I "the wicked step-mom" and "bad dad") and finally got to the IV chemo after 9 PM. Okay maybe unexciting instead of uneventful. Shawn says they are on "island time". Shawn did get to knock himself out again for the lumbar puncture. He injected the "milk of amnesia" slowly (propofol is white), started counting and his eyes rolled back when he mumbled "six".

Mark is doing well. I told him Shawn's friends were asking about him, showed him Shawn's guestbook on the web and both of today's entries had something about him in them!

Several people commented to me about the updates on Mark Roberts. I received the comment "I feel almost as if I know him" from one of my clients. Susan Weathers told me 10 out of 15 of her second graders included Mark in their prayers in class! We did see Mark in the clinic yesterday and he had been home for the weekend. He had had a steak dinner and was in good spirits. His hair has thinned but he still has lots more hair than Shawn does. He and Shawn have almost identical schedules tomorrow including clinic, readmission and chemo! Hmmm - coincidence???

Wednesday we still go back in for blood work, physical exam, lumbar puncture and readmission for four days of chemo plus however many days after that to recoup. Chemo is like a microwave - the stuff keeps cooking after you turn it off! They "expect" his ANC to drop to 1000 during this break but he's not average!

We are home! Shawn is feeling great and eating us out of house and home. When we got home he cooked 9 eggs and 8 slices of bacon. He ate more than half. I had to sacrifice myself and eat the rest! Shawn is interested in playing soccer ASAP and competing in triathlons!

Shawn is sleepy a lot but has had no other side effects. Shawn Alexander visited today and the three of us went to lunch in the cafeteria. I wish I had had my camera with me. The cafeteria was full and Shawn had his double-IV pole pumping the highly-toxic chemo into him while he's pumping chicken tenders into his mouth. His appetite has diminished a little (translation: he eats as much as I do)! He will get progressively sicker during the next three to six days but he is kicking the stuffing out of this leukemia. The doctors and nurses marvel at his progress! Thank God!

Shawn already is looking forward to giving himself the anesthesia for the lumbar puncture on Wednesday! He will have his LAST chemo starting Wednesday and running for 96 hours! I'm thinking positively because the longer the remission the better the chance of surviving subsequent treatment.

Shawn wants to "run" the Cooper River Bridge 7k walk on April 5th. The doctors aren't saying "no way" but they still look at us really funny when we mention going on the walk! Vanessa Hill from MUSC Transplant Center came by this afternoon. For those that want to run or walk the last day for "Early Discount" is 3/15 for the Run and 3/29 for the Walk. I'll meet with her on Wednesday and get more details on the Bone Marrow Drive.

Yippee, Mark had a great day! His ANC went from 16, to 24 to 122 within the last two days. He and Shawn went to the teen lunch (there were four boys) in the Atrium. When Mark left for the Atrium the nurses celebrated! I took a picture of Shawn and Mark eating pizza. The last 24 hours has been the greatest improvement yet for Mark - his spirits are up, his blood work is showing positive results, he got out of his room, and he's eating! A lot of prayers were answered!

Shawn received several colorful pictures the other day from his schoolmates. We put some up on his hospital room door. Shawn has been sleepy but has had no other side effects of the chemo. My Aunt Joan is also doing very well this week after months of several months of little improvement. Carol Storey looked VERY good. Other than the beautiful hospital pajamas you couldn't tell she had major surgery or was even sick! Miriam's surgery went long but she is doing well. She's experiencing a fair amount of pain but that's expected. She looked great and was doing very well emotionally.

Everybody seems to be doing great. Halleluiah!

Pictures: Door - Mark

I have three prayer requests, one each for Carol, Miriam and Mark. I ate dinner with Bill Storey in the hospital cafeteria. Her surgery apparently went okay but this has been a two-year battle and there's more to go. Miriam gets her surgery this Wednesday. Mark really needs your prayers. The sharp contrast in Shawn's numbers is as sharp as the contrast between Shawn and Mark's results. Mark is depressed and doesn't want to eat. We stopped in to see him twice yesterday. We stopped by the first time before we were admitted and again in the evening to see if he wanted to go to the Atrium. He didn't want to go to the Atrium because he was having a blood transfusion (Shawn has been to the Atrium during a blood transfusion). They started him on food by IV for nourishment. His bloodwork is showing very slow progress. He had a bone marrow test today that showed no leukemia and that picked his spirits up some! In another couple weeks he'll retest to see whether he's producing only healthy bone marrow. We know we are blessed with a bunch of prayers and want the same blessings for others!

Shawn also got to give himself his anesthesia today. He was asleep before he could empty the syringe of propofol! He wants to do it again! The anesthesiologist wanted him to count sheep. Maybe next time he'll be able to count higher than "one"! Shawn's doing great.

Shawn, Steph and I played 27 holes of disc golf today. Wendy has played it elsewhere and has her own discs. It is new to Charleston and is at Park Circle. It gave us amateurs a couple hours of fun playing the course and throwing around trees and bushes to get to the baskets. The course is a 9-hole par three and typically the holes are about 300' long. It was good quality time!

It's now Sunday night at 9:30 and Mike Baldomero, Shawn's Algebra teacher is here working! I haven't had much success teaching Shawn Algebra, especially past 9. Pastor Shannon is smart; he said in a video that teaching math to your son is best if left to someone else!

We have two more people from Cathedral to add to your prayers this week. Carol Storey will have surgery tomorrow. Miriam Tallon has breast cancer and will have a double mastectomy on Wednesday. We are planning on having a get together in the hospital - we won't be comparing scars! I saw both of them today and they are also in great spirits!

Picture: Disc Golf - Algebra

We watched "My Big Fat Greek Wedding" tonight. I sprayed some Windex on Shawn's head. We'll find out on Monday if it worked when we get the next battery of tests! I think it just made his head shinier.

Sometimes it's hard to believe Shawn's as sick as he is. Today we went to the beach to kick the soccer ball around. When we left the house it was 73 degrees. Unfortunately at the beach it was a windy 60 degrees. We got some pictures, played for a little while, parked by Fort Moultrie, watched for dolphins between Fort Sumter and us and came home. He took a good nap afterwards but is on his laptop playing & chatting this evening.

Picture: Beach & Dad - Beach - Ft Moultrie

I was hoping Shawn's ANC would be near 500 today after Saturday's 238 but I was WRONG! His ANC was 1,478 today. Needless to say but we had an awesome day and I'm not talking about the beautiful cloudless 68 degree weather. He can't go out in public but he can go out! The doctor discontinued his IV antibiotic, and when questioned wouldn't say that Shawn couldn't do the annual Cooper River Bridge run/walk on April 5th. She said "maybe" and "probably not" but she didn't say "NO" which translates to yes for this teenager. The bone marrow drive is in conjunction with the bridge run. The doctor liked the idea of me taking a wheelchair and she suggested some Gatorade also. Shawn and I went for a 1.5-mile walk this afternoon and completed it in 25 minutes.

I also went to see Shawn's headmaster and teachers so we can get a plan for how Shawn can complete 8th grade and not be too far behind for 9th grade. "Bad Dad" has to make him do some schoolwork! We have a plan that allows us to be flexible with good and bad days. Currently he's getting an A+ in chemotherapy! One of Shawn's favorite teachers, Mr. Mike Baldomero, Shawn's Algebra and Science teacher, will come see him regularly. Cathedral Academy is just one of several things we are blessed with.

To the 8th grade class at Cathedral Academy: Good Morning and thanks for the prayers!

Shawn has had a great day at home. He hasn’t even had a fever. We lost some more hair but you can tell by the picture he's not distraught (I think he enjoyed rubbing it off)! The IVs are taking longer to dispense than we thought which messes with the schedule and sleep. The picture is of Shawn helping me play nurse by doing a hep-lock on himself. The heparin is used after flushing the IVs and is an anti-clotting agent that keeps his Broviak lines open while not in use! We go in Monday morning for a blood test.

Picture: Broviak Flush

Shawn will be checking out of the hospital later today. We are trying to work out prescriptions and home health care so we can leave. He will be on IV antibiotics at the house. His ANC was up to 238 this morning. Visitors at the house will need to be minimized because of the low ANC. We will come in Monday briefly and again the following Monday (3/3/03) for bone marrow aspiration and starting the next round of chemo. More later, got to pack and stuff.

Shawn continues to do very well. The fever comes and goes. He had a problem with bleeding gums this afternoon while eating a bag of Oreos one of his 13 nurses brought him. (The Oreos were dipped in milk “excessively” before consumption. Wendy and I differ as to how long you’re supposed to dunk your Oreos! Do you prefer the quick dip so they are still crunchy or do you soak them? Do you drink the milk afterwards or toss it?). Shawn saw his nurse card the other day and has 8 day nurses and 5 night nurses signed up. He was allowed to flush his own Broviak today. He’ll be able to train the student nurses soon. I’ll try to get a picture for you! He is of course in great spirits!

Shawn had another good day. He got tired in the afternoon and took a nap. He also had a 100-degree fever in the evening. His body knew something before his temperature! Yesterday’s blood work finally showed his ANC above zero. It was a whopping 40 when we need 500 to go home and over 2000 to be normal. This morning’s draw showed him at an ANC of 130 (as Misty would say -- you go boy!). Fevers now might be an indication his body is starting to fight back!!! His platelets continue to drop but that is to be expected and will probably be adjusted with a platelet transfusion by tomorrow.
We continue to be blessed and surrounded by great people. Pastor Bob Wyatt came by for 3 hours! We talked about Shawn, Steph, Cathedral of Praise’s Marriage Ministry (Wendy & I are team leaders), the marriage retreat, computers etc. We enjoy Cathedral a lot – the pastors, people, groups, their values and the message.

Wow, it's hard to believe that exactly one month ago (four weeks) we suspected Shawn had leukemia, which was confirmed the next day. Since then we have gone through two 4-day doses of chemo and continue to make great progress. Shawn had a great day, made a couple trips to the Atrium and had visitors this evening.

I am so grateful for having a great life, great wife and great children. God is GREAT. We are blessed, which brings me back to putting things in perspective -- there are a lot of other people who are worse off than we are that need your prayers too.

Have a blessed day,
Steve

Picture: Shawn with Basket

Shawn has been getting blood and platelet transfusions for the last 3 days to compensate for low blood counts. His platelet count was back up and they have discontinued the transfusions. His blood counts should start growing on their own soon. The doctor was concerned this morning about Shawn’s redness around the stitches away from his Broviak. It helps to put things in perspective in that what we might think is just a scratch could be lethal to Shawn. Shawn ate very well today and also made 2 or 3 trips to the Atrium to play. I got an email from the school today so we should be able to meet and get started on “homebound” schooling soon.

David left this morning and drove as far as planned to Richmond Va. The blizzard apparently set a record in Baltimore with 24 inches in 24 hours. It got cool here but only down to freezing.

David, Wendy & I went home for dinner, a movie and church in the morning.

Thank you for all your prayers and concern,

Steve

Happy Valentines Day. We found some Valentines for Shawn in the mailbox today (I think they were from his class) and we were able to get them to him in time. Shawn was showing more discomfort today and for the evening asked not to have visitors. Visitors for this weekend -- please call first and see. If there is no answer he’s probably not up for company. Stephanie stayed with him last night, I will be there Saturday and David or I will be there Saturday night. His fever comes and goes but his mouth sores are probably the biggest problem. As for going home, the doctor said that we have gone from day-by-day to week-by-week until his body builds the necessary immunities.

My brother David from New York City drove in today. He’ll be here thru the long weekend! Shawn and Dave played some Xbox in the Atrium this evening.

Picture: Playing XBOX with Dave

Shawn’s feels good but his 101 degree fever continues. If the rash on his hands spreads they will call in the dermatologist. He has no pain from yesterday’s bone marrow aspiration. The absence of leukemia cells in his bone marrow is good. It indicates that the chemo did PART of its job. The true test is when his body starts to grow new bone marrow that it also is leukemia free.

The doctor thinks we will be here another 1-2 weeks. Because of the fever they won’t let him go until his body is producing the cells to start bringing the ANC count up. His ANC has been zero for the last several days. They also saw the unopened package of Valentines’ Cards that Stewart, his Bible teacher, had brought. One of the doctors wanted to open it for him and read them and the other picked it up and smelled it. No not for the perfume but for food!! Sometimes “laughter is the best medicine”!

Shawn went to lunch in the Atrium with a few other teens. The Post & Courier was there taking photos because MUSC was ranked the #1 children’s hospital in the southeast and #11 nationwide. There should be an article in Sunday, Feb 23rd’s newspaper.

Shawn continues to be in very good spirits. His fever was down a little tonight. He also appeared to be more alert.

Today he got that expensive shot. Oddly enough to be able to claim it on insurance the hospital could not buy it and give it to him. I could “bring it in” and they could give him the shot. We ordered it, had it shipped in overnight, I had to go to a pharmacy on highway 61 to get it with my insurance and then we gave him the shot. The first doctor was closest on price in that the insurance company will be charged $2,800 for the one 6mg shot. OUCH! The shot is Neulasta, which is supposed to encourage white blood cell growth in the bone marrow of cancer patients. Can’t we just talk nicely to them and cheer them on?

I suspect with his fever we will be here another couple days.

We are NOT coming home today. He had a slight fever (99) and felt poorly this morning. He developed a rash on his hands in the last 24 hours also. He woke up to some more hair on his pillow. He’s not losing his hair in clumps and looking at him you can’t tell its falling out. His scheduled bone marrow aspiration today was a tough one. They had to get a BIGGER doctor, give the doctor something to brace himself so he wouldn’t slide across the floor while I held Shawn from the other side. Needless to say, Shawn will have a sore hip today. We joked about his butt being as hard as his head. It’s an interesting procedure to watch if you can stand it. We each ate a pizza shortly afterwards and now he’s trying to take a nap. We’ll keep you posted.

Shawn continues to have great days. He doesn’t eat much of the hospital food. He also is putting the weight back on and has gained 7 of the 10 pounds back. He also has been staying up late but it is starting to catch up with him. He went to sleep about 8 this evening. He gets a bone marrow test tomorrow to determine the amount of leukemia cells. He may get released from the hospital tomorrow and go to the MUSC clinic for an expensive shot (well over $2,500). After that he should get to go home. He will have a single IV at home with antibiotics. (The attached picture has six bags, which from right to left are chemo, a blood transfusion, 2 antibiotics, and the 2 lower bags are basic IVs). Shawn wants to exercise and the doctor said he could NOT lift weights but could ride a stationery bike or treadmill. We will have to be VERY protective of him by screening and minimizing visitors. We will have to take it day by day. Please call ahead when the time comes. Thanks for your understanding, support and prayers.

Steve

Picture: Shawn IV

We got the results of the bone marrow matches and we did NOT match. I’ll talk to the doctors early this week and see what they want to do next. Some of this will depend on Shawn’s response to the chemo, if he goes into remission and for how long.

My parents leave tomorrow and my youngest brother, David, will be here this coming weekend.

We received a letter the other day from one of my clients. A copy of it is attached. The handwritten portion says, “Jenny and I are praying for you, Mark”. I have been in their home and office numerous times and I have prayed for Jenny and her family in the past. I know their sincerity and beliefs. It is very reassuring to see that South Carolina has this kind of leadership!! God Bless America!

Picture: Letter from Governor Sanford

Shawn started another round of chemo tonight about 7PM. They brought in a “Supersized” IV bag filled with orange fluid. The nurse wears a gown & mask in case she gets any on her. The biohazard people have to be alerted if they spill any. This stuff looked like orange soda but is awfully potent.

Shawn in the meantime has great spirits. He even asked about schoolwork (he must be sicker than I thought)! Just a little humor there Cal (Cal is the Headmaster of Shawn’s school).

My Dad has been with Shawn during the last few days. It allows me to leave after the doctors make their rounds, go do some work and then come back in the evening to spend the night. Stephanie is spending the night with Shawn tonight so that Wendy, Mom, Dad & I can go out to eat together. It’ll be great for her too – they love each other so much! She has had “stress headaches” but I know the Big Guy and a lot of us little ones are watching after her too! I just sit back and know that I have two of the best kids in the world!!

Dad said the newspaper had an article about the “bug” going around town. Please for Shawn’s sake if you have anybody in your family (or even close contact) that is sick, please stay away from Shawn. Shawn literally has no antibodies and is put in GREAT danger if exposed to something. He will be hospitalized for a long time and there will be plenty of opportunities to see him!

Shawn had some visitors from the church today – they brought him 4 Chick Filet sandwiches. Shawn ate three and Steph took the last one! Shawn has lost 10 pounds since he’s been in the hospital and is now down to 115 pounds. Mary Beth (one of the nurses) takes super care of Shawn and made sure lunch and dinner has a Pepsi and an ice cream with it. One of the other nurses stopped by about 11 last night and wanted to know if he wanted anything from Subway! Want some free investment advice -- Buy stock in Boost soon!

Thanks for all the encouraging letters, calls, e-mails and prayers!

He still is carrying a low-grade fever but otherwise it has been a good day. It’s past midnight and he’s still up playing a computer war game his friend Josh loaned him. Once he starts his 4-day constant chemo tomorrow he probably will be sleeping lots and playing little.

I spoke with Mark’s Dad and he is doing better. They started the chemo that affects the heart. The family is more upbeat. Hopefully they get to leave ICU soon and come down to the ward. I don’t know if he is ready to move to the ward but, the ward is full.

As always thanks for the prayers!!!

Shawn was interviewed on camera today by Channel 5 in conjunction with the MUSC fund raiser. They will do a follow-up interview when has is recovering. The MUSC/Cooper River Bridge run people also talked to Shawn and I today about his involvement in the bone marrow drive. His testimony after this should be awesome!!!

I attached a “home” picture albeit he was here only 30 hours!

Pictures: Shawn at Home

Mom & Dad are out getting groceries and Shawn’s prescriptions filled. I’ll try to get another more detailed update tonight (with pics)!

I went to see Mark’s family this evening. I got to see Mom. They are taking it hard. They also have a tougher road then we do. Mark has AML also but has leukemia in his heart muscles, lungs and kidney. They moved him to Pediatric ICU (PICU is on the 8th floor) this morning. He is starting some chemo today but will have to wait for another because it affects the heart. He also had 8 blood transfusions, 5 platelets and 1-2 plasma today. He’ll probably be in PICU for a week.

Shawn’s appetite is back too – must’ve been the chemo holding him back. We love Arby’s 5 for $5.95 roast beef sandwiches. Shawn ate 3 sandwiches, drank a shake and then had a chest x-ray. We then got to look at the x-rays and the technician pointed to an area and said “you just ate didn’t you?”

He’s almost himself again but his immunities are extremely low as expected. He played air hockey with Steph for about 45 minutes. (The pic shows Shawn & Steph playing with my Mom & Dad watching) It’s 11:30 PM and he’s up and out of bed working on e-mail. Normally he’s wiped out by now!!! I’m still cautious because he is supposed to bottom out 2-5 days from now!

We are scheduled to go home tomorrow for a few days, after the spinal (noonish).

Lots of love to all,

Steve

Pictures: Shawn and Dad - Atrium - Shawn and Stephanie playing air hockey

Good news – chemo is good for your acne! Serious good news – Shawn’s leukemia that showed up in his spine/brain has NOT changed his prognosis just his treatment. There are a few cancerous cells and not a mass like a tumor. Shawn has responded extremely well to the chemo and I’m sure he will continue to. They wouldn’t be letting us take him home this early if there was a bigger problem. The last blood work that I saw showed Shawn’s blast count (cancerous cells) was down from 75% to 11%. We found out late this evening he was supposed to get an MRI tonight but because of his IV & pump has to be continuous they will wait until tomorrow to do that. His spinal is scheduled for 11 am. After those are done he gets to go home for about 5 days. We have yet to see what restrictions we will have for that time – we’ll keep you posted.

My good friend Teresa wrote me that a few churches in England now have Shawn on their prayer lists. Tony & Teresa are Air Force friends of mine that left Charleston about 2 years ago and have been stationed in Lakenheath, England.

We need your prayers for two more cancer patients. One is in this ward. Mark is a 16-year-old boy that was diagnosed today with the same type of leukemia as Shawn. We saw the mother and sister (both teary eyed) first when they were brought to Shawn to see his Broviak. I saw the Dad later and went into their room to talk to him. He had a far away look and I already knew they ALL needed prayer and encouragement. He and I talked and I explained a lot of what has transpired in the last 9 days for us. He felt better and knew that his role had to change to “encourager”. Much easier said than done, especially when discouraged. As soon as I saw Mark I went to get Shawn so that we could go meet Mark and try to alleviate some of his concerns.

The other person is my Aunt Joan. She has been fighting a long and very tough battle with her cancer and today found out that it has moved into her lungs. Joan’s husband, Ed is the one that started and taught me the benefits the e-mail updates like this one. Again, your prayers are very much appreciated.

On a prettier note, I’ve attached pictures of three of Shawn’s nurses.

We are trying to get Shawn’s website started so he can work on it when he’s feeling okay and so that you can get news that way also. His website is http://www.a1networks.com/shawn. He has a guestbook there so please visit it and write him!

Have a great Saturday and God Bless.

Pictures: Shawn 1 - Shawn 2 - Shawn 3

Shawn’s doctor stopped by. We have bad news and good news. The not so good news is that the leukemia has showed up in his spine and brain. The treatment for that is a two extra spinal shots – one this Saturday and the other Monday. The GREAT news is that he may get to go home Saturday. That’s day 5 of his treatment and would allow 5 of the 6 days of recuperation to be at home!!! We would have to come back Monday for the spinal. The doctor has been straight-forward with us on the diagnosis. In 20/20 hindsight he may seem pessimistic but I believe it is God’s work that makes Shawn respond so well. They have already trained me on changing dressings and cleaning & flushing his catheters.

Tonight Wendy & I are going out on a date and Steph will stay with Shawn. Tomorrow my parents arrive; They are driving from Illinois and plan on staying a week. This weekend Wendy goes to Atlanta for four days of training. Wendy had signed a contract a couple weeks ago to inspect Hardees and McDonalds facilities in this area of South Carolina. She’ll get paid good money to ride the slides – seriously!

I’m kicking myself because I missed a great photo opportunity the other day when Steph had crawled onto Shawn’s bed with him. It is neat to see how much love they have for each other. Sometimes it’s a motherly love but mostly a wonderful brother and sister thing.

God is Great!

Today was yet another VERY GOOD DAY. Shawn has shown no side effects (no fever, no vomiting, no mouth sores, no conjunctivitis), after 48 hours of chemo. His blood work continues to show exceptional progress. He is sleepy and only got out of his room once today for 45 minutes. During that 45 minutes we went to the Atrium and played 2 games of air hockey (The score is tied).

The doctor stopped by a little later than usual this morning but is impressed with Shawn’s progress, especially the no fever part. He said that if this continues he may be able to go home for a portion of the 6-day recuperation period. The doctor was very pessimistic about this last week!! He did say Shawn couldn’t go outside or run up and down the stairs. He said Shawn’s IVs have to be continuous during the chemo periods.

I received a call today to schedule Steph’s and my blood test to see if we are bone marrow matches or not. I asked the lady about the possibility of someone going to Cathedral and conducting blood tests there and she told me it was expensive and usually didn’t happen unless he was a minority. She called me back a few minutes later and said as soon as we hung up a lady came in looking for a child that needed bone marrow to be a spokesmodel (poster-child) for a bone marrow/blood drive sponsored by MUSC and the Cooper River Bridge run which is a huge annual event here that attracts about 30-40 thousand runners/walkers. They want to use Shawn as the spokesmodel. The run this year is April 5th. Shawn and I are very excited, even if Steph or I are bone marrow matches he can minister to others and help increase registrants for organs and bone marrow. His chances and others leukemia patient’s chances of finding a match go up – what an impact!! God is GREAT. I was so excited I called Pastor Shannon while I walked over to another building to get my blood work done!

Less than two hours later another lady comes in the room and suggests that Shawn be used for the Children’s Hospital annual fundraiser!

Okay, last night I promised an ANC lesson – ANC is Absolute Neutrophil Count. Neutropenia is when your white blood cell (WBC) count is low enough that you are more susceptible to infection and your ability to fight infection is poor. There are four types of WBC -- Polys, Bands, Lymphs, and Monos (Last Wednesday they thought Shawn might have had Mono). WBCs are made in your bone marrow and healthy white blood cells are the germ fighters. The biggest cause of death of Leukemia patients is infection. Leukemia cells are the immature white blood cells. The chemo is supposed to kill all the leukemia cells but in the process kills off a lot of fast growing good cells like hair. ANC is an indicator of bone marrow production and is a way to gauge the body’s ability to fight infection. Shawn currently is getting 2 blood tests a day to determine several things but the most important one is ANC. I’m not necessarily trying to give the math teacher ideas but it is a simple algebraic calculation and I have the results of Shawn’s numerous blood tests!!! (This is usually where Pastor Shannon encourages the kids to offer me b-r-i-b-e-s)! ANC=WBC x (Polys + Bands)

ANC greater than 1000 is normal.

ANC from 500 – 1000 is fair and can be treated at home.

ANC below 500 is poor and Shawn goes back to the hospital for a few days!

ANC will be the lowest about 7-10 days after chemo when his WBC goes to near zero. Tonight his WBC was 3.3 and his ANC was 1014).

Within the next week I hope to take some pictures of the atrium and his nurses!

Shawn had a VERY GOOD DAY today. He started with a spinal cord injection of chemo (under sedation) around 8:30. He ate a sub sandwich at 10:30 this morning (He’s lost 6 six pounds since Thursday).

He took a few good naps. Most importantly he DIDNT have any adverse side effects of the chemo. He even WANTS to start lifting small weights, ride a stationery bike, run up and down the stairs and get some fresh air. I have to see what the doctor says first. The outside and the stairs thing probably wont fly.

We had a good laugh at one of the “new” doctors (after she left) because she was sent up by “surgery” to check on Shawn’s oozing Broviak, but didn’t know the difference between a port-a-cath and a Broviak, even when looking at Shawn’s chest with the Broviak hanging out. We laughed but the nurses roared with laughter. Now I have to sleep with one eye open!!!

Apparently Shawn’s picture with the cheerleaders has been a huge hit. I heard it was posted in the school and that it will be in the school’s yearbook! I think Shawn’s just faking this cancer thing to get lots of attention from the pretty girls. Pastor Shannon has been coaching him as to how to get the maximum amount of sympathy.

I don’t know the significance of it yet but Shawn’s white blood cell count was down from 47 (thousand) a couple days ago to 9 (5-11 is normal) this evening. The chemo will make it go pretty low (around 2). His ANC was down as expected. I’ll explain more about the ANC later. The ANC is the key indicator for infection fighting ability (whether he gets to leave the hospital or has to be readmitted). Shawn’s math class may hate me if I publish the equation!

I’ve been hinting that I want Shawn to have high-speed internet in his humble abode (the room is already cabled). I think it would be great therapy; he could do his HTML class homework, maintain his webpage, guestbook, daily health-meter etc, and give him a long-range project. Once he has his bone marrow transplant he will go into isolation for 30-45 days. If he had an exercise bike and a laptop…

Have a great Wednesday!

Wow, what a day.

The nurses woke us up at 5:45 to prep for 7 AM surgery. They implanted the Broviak in his chest without a hitch. He was sleepy after surgery and is sore now. He also had an “echo” (sonogram) of his heart to check and baseline it. Shawn and I both enjoyed watching that. The chemo didn’t get started until 9 PM. The picture is of Steph and Shawn after the chemo started (There are very few brothers and sisters that love each other as much as they do!). The picture shows his 3 IV bags and the central line (Broviak). Shawn is supposed to get knocked out and then get more chemo injected into his spinal column Tuesday. That procedure will be accomplished here in the ward with a “conscience sedation”

Shawn will have 4 days of chemo (IV, injection and tablet), recover 6 days, and then repeat the 4 days of chemo, followed by 21 days of recuperation. It is possible that, if everything goes OK and certain parameters are met, he will be able to go home for a part of the six days off. The cycle is to be repeated twice and a third time if they cannot get a bone marrow match. It is also possible that IF the first cycle kills enough of the leukemia then they skip the second cycle and go to the bone marrow transplant. The bone marrow transplant will be required and involves 30-45 days of isolation. The major concern is infection throughout the whole process. He will have one year of precautions (avoid exposure to active cases of chicken pox, babies on polio vaccine, fevers, etc).

The next picture is of his school’s cheerleaders after tonight’s basketball game– that boy is NOT sick! The other night the school’s basketball team played and the opposing coach led a prayer for Shawn. No wonder he has such great spirit!

His nurses are allowed to pick schedules and patients – Shawn’s schedule is FULL.

I have also received numerous e-mails from my clients. The support from them is tremendous. They have initiated prayer chains, calls to Christian radio & television broadcast such as World Ministry. One of my downtown clients called and needed some help with a little problem. Shawn was asleep and I got there, fixed the problem, she prayed for Shawn and I was back within the hour. (That client said she needed prayer also. She didn’t say what but said it was just as serious as Shawn’s cancer – please add her to your prayers.)

Thanks for all the prayers and support,

Steve

Pictures: Shawn and Stephanie - Cheerleaders

Dear friends,

We need your prayers. Wednesday, I took my son Shawn, 14, in for a sore throat that resulted in blood tests because of a swollen gland. Wednesday evening we were called and scheduled for more blood work at MUSC on Thursday. Thursday morning the blood work (including bone marrow removed from his hip and lumbar (spinal) puncture) was tested, he was admitted to the MUSC Children’s Hospital with Acute Myeloid Leukemia (AML). AML involves a malignancy (cancer) of blood-forming tissues of the bone marrow characterized by the proliferation of immature white blood cells. The surgeon will put a device in his chest (Broviak) on Monday and he will start chemotherapy by evening. His platelets dropped 25% within a 24 hours period Wednesday night. Since then everything has stabilized. He gets blood work drawn three times a day.

The doctor said he will need to undergo aggressive chemo and be hospitalized for an extended period (six months???) including getting a bone marrow transplant. He said Shawn has a 50/50 chance of surviving. We know that God gets to do the coin toss and our odds are better than that.

The support from our friends at the church has been exceptional. Shawn was visited by three of our pastors Thursday plus a myriad of friends since then.

I intend on staying at the hospital 18 hours a day for a while. I feel I need to be here with Shawn but also know I need a break. My planned “therapy” is working an average of 4 hours per day once things become “routine”. I have a hide-a-bed at the hospital and my laptop. I can accomplish a lot with my laptop and cell phone.

Shawn is in MUSC’s children hospital, Ward 7B. The nurse station’s number is 843-792-9693. I think they can forward calls to his room. Shawn asked to have a Super Bowl party for a few friends and the staff gave him a bigger room to have it in! Due to limited space and noise restrictions, this is by special invite only!

Pictures: Musc1 - Musc2 - Musc3